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Medical Forum / Diseases and Disorders / Breast Cancer / November 2003Need your input re: Bone Marrow Biopsy ASAP
Help! It's a long story, but I have to have a bone marrow biopsy tomorrow (Friday) AM. I've had lots of blood work the past week, and more scheduled, and my counts have all been too high. Onc. worried about platelets and bleeding. He's still concerned I'm going to have a stroke and end up in a nursing home. Of course, that's scarier than the bone marrow biopsy, but I'm really nervous and scared about it. I asked if I can have a twilight sedative, but he refused saying I wouldn't need it. Need to hear from anyone who's had this biopsy. Have to find out what's going on with the blood. I was hospitalized for 2 days last week and all the tests, scans were done and he told me this AM there is a nodule in both lungs and I have an enlarged supraclavicular lymph node that needs to be biopsied, but the blood counts have to be stabilized first. Would greatly appreciate any feedback about this procedure soon as possible! Thanks. Kathie Kathie, Sorry I cannot help but I wanted to let you know that I'll be thinking about you tomorrow and praying that all goes well. Take care. ...lisa > and end up in a nursing home. Of course, that's scarier than the bone > marrow biopsy, but I'm really nervous and scared about it. I asked if I > can have a twilight sedative, but he refused saying I wouldn't need it. Thats a bit unfair, I found prescribing midazolam very useful before bone marrow biopsies. But perhaps you have a contraindication to sedatives that he knows about.  Signaturemadiba madiba wrote<< Thats a bit unfair, I found prescribing midazolam very useful before bone marrow biopsies. But perhaps you have a contraindication to sedatives that he knows about. Hi madiba, am assuming you are a physician--was wondering what kind--surgeon? > madiba wrote<< Thats a bit unfair, I found prescribing midazolam very useful > before [quoted text clipped - 3 lines] > > Hi madiba, am assuming you are a physician--was wondering what kind--surgeon? No, a rad.onc. I did bone marrow jabs back in my early days. Signaturemadiba > > Hi madiba, am assuming you are a physician--was wondering what kind--surgeon? > No, a rad.onc. I did bone marrow jabs back in my early days. Good to have a real oncologist visiting regularly -- thanks! Ann T. Remove 'dontsendspam' from address to reply by email > > > Hi madiba, am assuming you are a physician--was wondering what > > > kind--surgeon? > > No, a rad.onc. I did bone marrow jabs back in my early days. > > Good to have a real oncologist visiting regularly -- thanks! I'd be glad to help. I posted here a couple of weeks ago with a real name & email address and have since been swamped by SVEN worm (or whatever its called) emails, so I'll stay anonymous till this problem has been solved.. Signaturemadiba madiba wrote << I'd be glad to help. I posted here a couple of weeks ago with a real name & email address and have since been swamped by SVEN worm (or whatever its called) emails, so I'll stay anonymous till this problem has been solved.. Sorry to hear of the difficulty you had. I don't know if this would be of interest or possibly helpful but do know that those who are using MACs have had less difficulty (if an?) with latest worm or virus. In fact when we moved our daughter into the university she attends in mid August, we asked the tech at the computer store on campus about probs between the computers. They hadn't had any probs with MACS but the day I asked him that he said that morning that over 60 PC computers had been brought in to be dewormed. Another added protection--at least for the time being (although it may have or potentially have its own share of other-related prob's--is that we are connecting through aol dial-up for that very reason. > madiba wrote << I'd be glad to help. I posted here a couple of weeks ago > with a real name & email address and have since been swamped by SVEN worm [quoted text clipped - 13 lines] > prob's--is that we are connecting through aol dial-up for that very > reason. I am using a Mac, but that doesn't stop infected PCs from stuffing my mailbox full of this worm trash. Its not dangerous to my Mac, just inconvenient when someone can't get through because the mailbox is full.. Signaturemadiba madiba wrote << I am using a Mac, but that doesn't stop infected PCs from stuffing my mailbox full of this worm trash. Its not dangerous to my Mac, just inconvenient when someone can't get through because the mailbox is full.. I think the combo of using both a MAC along with aol are both protective factors re. this problem--at least to some degree. I seem to have alot less extra mail than some. I also think using a dial-up connection adds to this protection. It isn't perfect but does seem to result in less spam. > madiba wrote << I am using a Mac, but that doesn't stop infected PCs from > stuffing my [quoted text clipped - 7 lines] > extra mail than some. I also think using a dial-up connection adds to this > protection. It isn't perfect but does seem to result in less spam. They all help to stop you from spreading it but only the ISP can help stop you receiving it. Getting it sent to you depends on other people having your email address, so it depends entirely on your public profile history (albeit in a complicated way) , not your computer, connection or anything else. The only place it can get filtered out before it reaches your mailbox is at the ISP. Tim Jackson << The only place it can get filtered out before it reaches your mailbox is at the ISP. True, but under similar circumstances we seem somewhat less plagued, overall, with combo use of MAC and aol compared to others who have either of the above in other combinations. Just an observation... > > madiba wrote << I am using a Mac, but that doesn't stop infected PCs from > > stuffing my [quoted text clipped - 16 lines] > else. The only place it can get filtered out before it reaches your mailbox > is at the ISP. I'm now using Pop Peeper. http://www.poppeeper.com/ It's free and (small) doesn't chew up system resources. If a person can recognize the subject lines, it's easy to delete them before downloading them (unless some newsreaders settings are set to download at intervals and/or immediately on opening, which presumably can be changed). Only works apparently on Windows based OP systems. J madiba wrote << a rad.onc. I did bone marrow jabs back in my early days. Thanks for your response. I hope you don't mind but had some ?'s re bone marrow biopsies. --where are bone marrow biopsies usually done--i.e. hips? --if one has bone mets in their shoulders 'only' would a bone marrow biopsy done in hip show it? --do you know what latest stats indicate re. % of those with cancer who eventually get bone mets? --if one does have bone mets, would bone marrow biopsy always indicate such? --if one tests positive for mets to bone marrow, does that mean they have bone mets? If not, will they eventually get bone mets? --if a majority of women with b.c. do have bone mets, is the reason that it isn't routinely tested because it would imply a further stage of b.c. and thus require offering of further treatment intervention which would significantly increase treatment expense? Hope you don't mind the ?'s, thanks in advance. Kaye, a bone marrow biopsy is something quite different from a bone biopsy, and does not detect bone mets. It is about looking at the blood, not at the bone. To verify bone mets conclusively (if exceptionally the x-ray and isotope scan aren't conclusive enough) you have to biopsy the tumour itself: just the same as in a breast biopsy, sampling random breast tissue doesn't tell you anything. Tim > madiba wrote << a rad.onc. I did bone marrow jabs back in my early days. > >> [quoted text clipped - 14 lines] > increase treatment expense? > Hope you don't mind the ?'s, thanks in advance. > madiba wrote << a rad.onc. I did bone marrow jabs back in my early days. > >> > > Thanks for your response. I hope you don't mind but had some ?'s re bone > marrow biopsies. > --where are bone marrow biopsies usually done--i.e. hips? Either on the edge of the pelvis, the back of the pelvis or from the sternum. > --if one has bone mets in their shoulders 'only' would a bone marrow biopsy > done in hip show it? Tim mentioned the diff. between bone marrow/metastasis. You may be thinking of leukemia where a marrow infiltration can be shown everywhere. > --do you know what latest stats indicate re. % of those with cancer who > eventually get bone mets? Quite high, ultimately about 70% IIRC. > --if one does have bone mets, would bone marrow biopsy always indicate such? If its a good biopsy, yes. Its usually not necessary, the combination of x-rays, CT/MRI and bone scan/PET hardly miss any. > --if one tests positive for mets to bone marrow, does that mean they have bone > mets? If not, will they eventually get bone mets? Which test do you mean, the biopsy? Yes thats 100% but as I say its seldom necessary. Bone scans are about 80-90% correct when reported by an experienced MD who has received a thorough history. This is a very rough guide because there are so many variables. Osteolytic tumors (ones that just make holes in the bone) are better seen in PET scans than bone scans. Tumors that (also) cause bone thickening are not as well seen in PET scans. > --if a majority of women with b.c. do have bone mets, is the reason that it > isn't routinely tested because it would imply a further stage of b.c. and thus > require offering of further treatment intervention which would significantly > increase treatment expense? On the contrary, it would save costs and the misery patients must go through for conventional treatment. Instead of a big operation, radiation, lots of chemo its a small op and hormone tablets. But bone mets are usually not found at the time the BC is dxed (bone scans should be part of the usual work up for treatment. > Hope you don't mind the ?'s, thanks in advance. No problem. Signaturemadiba Madiba wrote << > --do you know what latest stats indicate re. % of those with cancer who > eventually get bone mets? Quite high, ultimately about 70% IIRC. That's what I thought (had read 67%). So, if that is the case and one has an MRI which shows increased uptake of the L4/L5 area of the spine and either a cyst or mass and then develops subsequent sciatic pain (which purportedly can be associated with spinal metastases) and then one gets pain in the shoulder and upper arm--and x-rays are normal except for 'bone spur' with pain being worst at night, with above % does it not seem logical that malignancy would be the most likely cause. And if that is the case, should that not be ruled out first, particularly since latest recommendations suggest that early treatment is of utmost importance in preventing more severe injuries and future problems.? AND because research findings are showing that use of a bisphosphonate can help (and even possibly prevent bone metastases from occurring)??? > --if one does have bone mets, would bone marrow biopsy always indicate such? If its a good biopsy, yes. Its usually not necessary, the combination of x-rays, CT/MRI and bone scan/PET hardly miss any. I guess that is if one's health care facility orders those tests as indicated. <<Osteolytic tumors (ones that just make holes in the bone) are better seen in PET scans than bone scans. Tumors that (also) cause bone thickening are not as well seen in PET scans.>> Okay, so PET and bone scans report increased uptake in those areas. REcommendations are that if clinical symptoms are there further evaluation is recommended to confirm. And those clinical symptoms are reported by patient but not documented and further evaluation is NOT done. And when patient had previously asked dr. (based on results of previous bone scan) how one differentiates bone mets from 'arthritic activity' (or degenerative changes), the oncologist does NOT answer that question but instead says, it doesn't matter in terms of long term survival whether one is treated for mets for 3 years or if you wait a year and then treat for two years, what is one supposed to think? Then when shoulder and upper arm pain develops and patient is initially told--wrongly--that x-ray is normal only to find out that it showed a 'bone spur' is there and more films should be ordered. Eventually they are and xray report states 'degenerative changes' Nothing further is said. One does not even know if radiologist reading that is aware of patients breast cancer hx or high risk for recurrence. And then patient has PET scan which shows increased uptake in area where patient reports pain (shoulder/upper arm) and also L4/L5 lumbar region. However, in relation to former (shoulder/upper arm)--fellow student who does the PET procedure WRONGLY writes in clinical hx that patient 'may' have lymphedema in left arm (the arm that patient has been experiencing daily pain for past month) but in actuality patient has definate lymphedema in right arm (and wears custom sleeves for that 24/7 and has no pain in arm with lymphedema) BUT DOES have severe pain in other arm/shoulder--the one that had increased uptake. Patient had paid out-of-pocket for PET scan ordered by private internist (outside of nonprofit HMO) rather than oncologist who passed patient on to primary care dr. (in nonprofit HMO) for shoulder pain who after 2 mos. recommended shot of cortisone without further evaluation). Oncologist recommended PT for shoulder pain (which was a joke--2 shoulder exercises) which appear inconsistent to what is going on. Meanwhile patient points out error or PET clinical hx to head nulear radiologist and requests correction of hx as well as reinterpretation of scans based on corrected information. Head radiologist who basically just watched presentation of case by fellow student (without analyzing himself but signed off on report) apologizes--offers to correct clinical hx but won't change report and then offers patient free PET in 3 mos, although changed that to 3 to 6 mos. Then patient sees second opinion oncologist who orders 'osteoporosis' prevention dose of Zometa infusion along with increasing Celebrex to 400 mg/twice day. Frist oncologist probably doesn't even remember that patient told him about 2nd opinion oncologist (at different facility) giving Zometa, in the first place. First oncologist doesn't believe it is 'indicated' even though recommended by a 3rd private oncologist for osteoporosis prevention and patient has osteopenia. Now, after daily pain in shoulder/upper arm, patient FINALLY has some improvement--what is one to think? Zometa can improve pain for one with bone mets as can Celebrex. However, degenerative changes and pain were still reported when patient was on maximum Celebrex dose for 'arthritic' activity--400 mg/ twice/ day for previous 8 mos and at time pain in shoulder and increased to daily and pain in upper arm began. Patient had first reported pain in shoulder 10 mos. at each appt--every 3 mos. since it started--but it was never recorded on clinical report of patient by oncologist. > Madiba wrote > << > --do you know what latest stats indicate re. % of those with cancer who [quoted text clipped - 76 lines] > 10 mos. at each appt--every 3 mos. since it started--but it was never > recorded on clinical report of patient by oncologist. Sheesh Kaye, looks like a hornets nest and now you want a THIRD onc's opinion? :-/ Look, I haven't seen your PET scans and I have more experience with bone scans. An experienced nuc. rad CAN differentiate between degenerative changes and mets. The difficult regions are the joints, in the long bones its easy. I don't have insight into the prescribing habits of HMOs, so I can't say why which test was or was not ordered. I get the feeling someone wants to shield you from the bad news. Zometa is not an osteoporosis drug, its for bone mets. Draw your own conclusions.. If the shoulder pain does not improve on the two drugs you mention, play the onc's game and suggest a short course of radiotherapy 'just to reduce the arthritic pain'. What you don't want is to be stuck with morphine, it not very good for bone pain anyway. Signaturemadiba > Sheesh Kaye, > looks like a hornets nest and now you want a THIRD onc's opinion? :-/ [quoted text clipped - 11 lines] > reduce the arthritic pain'. What you don't want is to be stuck with > morphine, it not very good for bone pain anyway. I wonder if the onc is just playing it safe. Bone mets can be very difficult to discriminate from degenerative disease in the early stages, and he may take the attitude that to prescribe Zometa 'just in case' won't do any harm. Hedging his bets rather than concealing a definite diagnosis. I like Madiba's idea of suggesting a zap 'just in case' as well, if it persists. I can't say it won't do any harm, but it would prove a point. Tim Tim wrote: << I wonder if the onc is just playing it safe. Bone mets can be very difficult to discriminate from degenerative disease in the early stages, and he may take the attitude that to prescribe Zometa 'just in case' won't do any harm. Hedging his bets rather than concealing a definite diagnosis. I like Madiba's idea of suggesting a zap 'just in case' as well, if it persists. I can't say it won't do any harm, but it would prove a point. The dr. who prescribed the Zometa is my 2nd opinion oncologist--through same health care plan at different facility. My 1st onc. pawned me off to regular dr. That was when my dr. was out of town and I saw young internist whom I had never seen before. She was very thorough. She ordered x-rays, stat, and when I brought them back to her she said they were normal. She also ordered ekg (cause it was left arm, I suppose) and ultrasound of carotid artery--as I said very thorough but obviously not experienced in bone issues. Since the pain continued my husband then called my oncologist who looked at xrays or report of xrays which said there was a bone spur. She, internist had told me they were normal. The oncologist said she should have ordered more xrays--which he did--of cervical area. The report on that was degenerative changes. However, oncologist did not mention anything about MRI done of cervical spine last May. That showed something on the cervical spine. Report of that said if there were symptoms there should be further follow up. I have no idea what type of symptoms they were talking about or if any of this is even related, although I have a strong suspicion that this is all somehow very much related. One point is--is that I am having to coordinate everything. Nothing would be done if it weren't for my persistent calls. I should not have to be my own advocate and case carrier--for gosh sakes I am the 'patient' who is not supposed to know what needs to be and/or 'should' be done. > ...called my oncologist who looked at xrays or report of > xrays which said there was a bone spur. She, internist had told me they were > normal. The oncologist said she should have ordered more xrays--which he > did--of cervical area. The report on that was degenerative changes... Um, your oncologist is diagnosing symptomatic bone spurs and degenerative changes? Shouldn't he be referring you to an orthopaedic surgeon if this is what he thinks is the cause of your problems? Tim << Um, your oncologist is diagnosing symptomatic bone spurs and degenerative changes? Shouldn't he be referring you to an orthopaedic surgeon if this is what he thinks is the cause of your problems? He didn't dx those--that was what the x-ray reports said, so he referred me to physical therapy. What a joke--I was given 2 shoulder strengthening exercises that seemed quite incongrous to what was going on. I did get a referral, finally, to orthopedics by my internist--through his nurse--10 days after he gave me the shot of cortisone in my shoulder. I had called his office to report that I had a patch of numbness in my forearm and my hand cramped up, into a claw-like position. My message was that I wanted further testing (i.e. MRI or PET) and/or referral to orthopedics or ? The nurse called me back and said they were referring me to orthopedics. After one week of waiting I called orthopedics on the 20th of Oct.. They had my referral--not sure what they were waiting for. I was told that the first available appt. was November 19th. I told her that I needed to be seen yesterday and was going to go privately and request that they cover it. She went and checked the books and I was given a cancellation for the next day--yesterday. Coincidentally (???), I had my choice of two different times... The orthopedist doesn't think its my shoulder but my neck. He thought I should talk with the neurosurgeon. (Huh?) However, he ordered an MRI. I asked if that would show whether or not I had shoulder mets. He said it would. I took the referral for the MRI to the area where the appt's are made for such. The receptionist looked at the referral and called the dr's office to see if he wanted it with/without contrast since I heard her mention rule out mets. He said without. She told me that she was giving me an afternoon appt (as opposed to an evening one) since they do contrast in the afternoon and she was going to talk to another dr. about it. This was the receptionist, for G-d's sake... Last night I kind of lost it in frustration. I find this whole experience unbelievable. I feel like they are doing everything possible to avoid a good evaluation and accurate or most correct dx. My husband said if the gal calls me and says they are not doing contrast he would call them and argue. I am glad he offered to do that. Sigh....Meanwhile the pain in my shoulder again worsened last night...It seems okay this morning... There is something very wrong with the way dx's and info. about them are being used. If 70% of all people dx'd w/b.c. are found to have bone mets at some time and 18% of all women w/b.c. are found to have mets to the shoulder--and if my b.c. was an aggressive type involving 3 different types that were aggressive, 9 pos. nodes, and extensive lymphovascular invasion, logic suggests almost a no-brainer here--and shouldn't they be obligated to rule out mets first??? > << Um, your oncologist is diagnosing symptomatic bone spurs and degenerative > changes? Shouldn't he be referring you to an orthopaedic surgeon if this is [quoted text clipped - 3 lines] > He didn't dx those--that was what the x-ray reports said, so he referred me to > physical therapy. That is treating them, not passing them to an appropriate consultant for diagnosis. > The orthopedist doesn't think its my shoulder but my neck. He thought I should > talk with the neurosurgeon. (Huh?) Fair enough, this is what is supposed to happen if the problem runs across disciplines. What worried me was that your onc didn't pass it on when it went out of his speciality. The orthopod is saying he can't see any source of pain, and it could be coming from the nerves where they pass through your neck. That tends to produce a band of pain which is not touch sensitive and reacts to spinal massage. > However, he ordered an MRI. I asked if > that would show whether or not I had shoulder mets. He said it would. You could equally well be looking for mets in the cervical vertebrae. Really the only way to diagnose these things is to have the relevant specialist rule out all other possible causes. That's why oncologists (correctly) shy away from it. > If 70% of all people dx'd w/b.c. are found to have bone mets at some > time and 18% of all women w/b.c. are found to have mets to the shoulder > shouldn't they be obligated to rule out mets first??? It's damn difficult to 'rule out' mets because it can present in so many ways. It has to be a process of elimination the other way around. They do the obvious tests with isotopes and x-rays, that is usually conclusive. If not, the only thing is to biopsy a tumour, and if you can't identify a tumour to biopsy then you are stuck until (if and when) it grows. Markers may tell you that "there is something going on" but not what or where. I'm worried about this 70% figure you quote, it doesn't sound right, or it is out of context. I know quite a few people who have had bc, and less than half have developed mets of any sort, (although one died last year who had been clear of bc for 20 years before getting a recurrence). This sounds a bit like one of those statistics like "100% of people die at some time". True, but not just now. I don't believe this in any way translates to "because you have recently had bc you have a 70% chance that your current problems are mets". I am sure that for example, the percentage proceeding to stage IV within five years of surgery is much lower than this (under 25% I think?), so whatever the whole-life figures are, you are looking at the short term situation yourself. Tim > I'm worried about this 70% figure you quote, it doesn't sound right, or it > is out of context. I know quite a few people who have had bc, and less [quoted text clipped - 7 lines] > this (under 25% I think?), so whatever the whole-life figures are, you are > looking at the short term situation yourself. Exactly, Kaye is a bit fixated on that 70% figure. It means 'by the time they die' about 70% have mets. Signaturemadiba Madiba wrote: << Exactly, Kaye is a bit fixated on that 70% figure. It means 'by the time they die' about 70% have mets. Um, that was what I meant, too, and do believe I expressed it that way--at least I thought I had. Also, I don't appreciate that negative value judgment nor the sarcasm which not nly makes me feel embarrassed but has the propensity to sway other peoples opinions in a negative way or even more so. (Although one who tends to accuse others of negative traits has often been accused by others of having/doing the same). My point was with that figure (which you had confirmed in a previous post), the symptoms I am experiencing, and with all that I had re. b.c. diagnostic criteria (3 types of aggressive b.c., 9 positive nodes, and extensive lymphovascular invasion), that my chances of developing bone mets were quite high. It seems that it would be more likely to be that than another cause, especially since in my past I have had some back injuries due to fall/car accident (which healed up nicely) but symptomatically were so different than what I am experiencing now. With the above trauma-related incidents, the pain became constant and then improved. With what I have now--the pain has been increasingly worse both in severity and duration although there are gaps when I am not experiencing it. I have had differing opinions. I suspect my primary oncologist believes it is mets but does not want to dx and treat--from the statements he made--or that they (our non-profit HMO) may have a time-based criteria time needed (i.e. one year) before tx is offered if what is going on is inconclusive. I kind of got that feeling from the 2nd oncologist I see through our health care policy as well. The orthopedist I saw does not think what I have going on is shoulder related. However, my private internist, whom I saw for the first time in 6 mos. (for check-up), does. I, of course, hope that none of my symptoms are b.c. related but am also trying to be realistic, too, and include 'common sense' in my analysis of what I fear. And, since this is a support group is why I bring those fears and concerns up for discussion--here. On the outside--and at work--I get more than enough kudos and cliches's. I smile pleasantly and am quite polite, gloss over these comments in my mind, do best to forget (for much of the time ) and get on with my work or give attention to others' needs and concerns. My point was with that figure (which you had > confirmed in a previous post), the symptoms I am experiencing, and with all > that I had re. b.c. diagnostic criteria (3 types of aggressive b.c., 9 positive > nodes, and extensive lymphovascular invasion), that my chances of developing > bone mets were quite high. This is true, but not on the basis of that bc-population, whole life figure. Given 9 lymph nodes involved, the probability of a metastasis within five years is something like 70%. As bone mets represent the largest group of bc mets, then the probability of bone mets in this period is something like 50%. Lymph node status is the strongest predictor for metastasis, and breaks even at about four nodes. From this, you could estimate the probability that a mets-like symptom at this time will in fact be mets (which is what you really want to know), I guess it would come out something like 25%, you need to know the incidence of non-mets events and I -am- only guessing. You could ask your onc. -that-, he might be able to give you a sensible answer if asked the right question. If you derive that risk on the basis of the whole life probability the risk comes out much smaller, like 5%. Simply divide how many cases of mets occur by the total of backaches (etc.) suffered by all bc patients over their lives. This is because it is a broad average which doesn't take account of significant data like cancer stage. So I agree with you that the risk is significant, and I agree with Madiba that the statistic you are quoting doesn't prove that, and so that you are relying on it irrationally. It is the wrong statistic, even if it happens to be something like the right number. Tim Tim wrote << This is true, but not on the basis of that bc-population, whole life figure. Not quite sure what you mean but I was referring to what I had read and what madiba had confirmed. What I read was that 67% of all who are dx'd with breast cancer are eventually dx'd with bone mets as well. I had been somewhat surprised at that amount although had read that more than once. Then, from what I gathered, that % was verified for the most part by madiba who wrot that the incidence was 70%. I was coming from that perspective and not even considering an arbitrary 5-year time-line. I believe that my assumptions are based on reality and common sense. Period. Now if one wants to look at stats--if all with b.c. are eventually are dx'd with bone mets than my chances are greater that I will someday get them than not. In addition, because I have a significant # of positive nodes, that seems to me that my chances of eventually being dx'd with bone mets is even greater. Now, based on the fact that my path. report was changed from stage II to stage III (clinically), based on that info. my chances for developing bone mets is even greater. Personally, I am not so sure that I wasn't at stage IV and think at least two of the oncologist I saw would not disagree. Because I am on Arimidex, I do realize that I have an even greater chance for developing increased degenerative changes. I very much want to believe that is all I have. The symptoms I am experiencing in my back and shoulder/arm can be associated with bone mets, although they may also be indicative of 'degeneration' (whatever that encompasses. In fact those specific areas are common areas in which bone mets occur. Now, if one were to use logic, the likelihood of what is taking place seems more likely to be possible bone mets than the alternatives. Another aspect that is contributing to my thoughts on this was that both the above areas showed increased uptake on the PET scans and at least the L4/L5 regions showed the same on the bone scans as well as MRI's. I do not believe than anything had been reported in the arm/shoulder area on previous bone scans and I haven't yet had an MRI for that. At the same time previous scans before my b.c. dx. had indicated degenerative changes in other areas (i.e. knees). Yet, those areas did not show up on the PET scan or bone scans. Again, logic leads me deduce that there is an even greater likelihood that the areas showing up on the most recent scans as being areas of increased uptake may be possible bone mets whereas the areas that only showed degnerative change (but did not show up on nuclear scans) would not. I do very much hope that I am proved wrong here, but common sense suggests to me the alternative. I am also hoping that the changes I have made and additional measures I am taking might possibly delay detectable mets and keep things in check until better treatments are discovered. BTW, I hate statistics and really don't want to more accurately come up with %-age based probablilities. My path. report was 'bad news' and realize that I have a greater chance of being on the negative side of the things that go wrong. So what else is new? At the same time I have beat the odds in other situations and hope to do the same here, too. Oh, and as far as something being a recurrence, I will again mention what one of my 2nd opinion oncs said--'when people talk about the cancer coming back, where does it come back from--the pathology lab?' In other words, unless it is a new cancer, it was always there. Cancer generally is not seen until it reaches the size of about 10 to the 9th power I believe--that may be a bit large and am too lazy to go back and check out--but there are alot of cells there before it is visible. It has to start from somewhere and generally breast cancer grows slowly. So, just because one cannot detect the cells doesn't mean that they are not there... I know this post doesn't have an overly positive flavor and am almost hesitant to post. Again, it is a reality that at times seems overwhelming but I keep getting glimpses of inspiration that make me hold onto the belief that I may have a chance for this to go into long-term remission...thinking of Lance Armstrong and my husband's aunt (dx'd stage IV, had a lumpectomy w/rads--refused chemo--with mets in 4 organs who went into spontaneous remission. She did not have a positive attitude--was a former nursing professor who refused to believe the cancer was gone for the longest time. This was almost 10 years ago and she is now in her late 70's or early 80's). > Tim wrote << This is true, but not on the basis of that bc-population, whole > life figure. [quoted text clipped - 8 lines] > time-line. I believe that my assumptions are based on reality and common > sense. Period. It's these words "eventually" and "someday". On the one hand you are talking about the risk that you will get cancer again when you are maybe 75, and on the other hand you are talking about the possibility that you have it -now-. These are very different animals, and almost unrelated. I understand that you are trying to assess how likely it is that the pain in your shoulder is due to mets. For that purpose this statistic is irrelevant. The 5-year statistics are more appropriate because they more closely reflect the situation you are in, and have subdivisions you can identify with. The fact that 5 years is an arbitrary cut off is only significant if you happen to be close to it. As a general rule when chosing statistics always pick the smallest set that you are in. > Oh, and as far as something being a recurrence, I will again mention what one > of my 2nd opinion oncs said--'when people talk about the cancer coming back, > where does it come back from--the pathology lab?' In other words, unless it is > a new cancer, it was always there. I think "resurfacing" is a better description than "coming back". A "recurrence" describes a new primary cancer or a new tumour cloned from an old one, local or distant. To be meaningful it has to be qualified. If we can talk about daffodils coming back in the spring, then we can talk about cancer coming back. Tim Tim wrote << I understand that you are trying to assess how likely it is that the pain in your shoulder is due to mets. For that purpose this statistic is irrelevant. The 5-year statistics are more appropriate because they more closely reflect the situation you are in, and have subdivisions you can identify with. The fact that 5 years is an arbitrary cut off is only significant if you happen to be close to it. >> I am not looking beyond the present. I was told that my chances for early recurrence were very high. Besides having 9 positive nodes, being Her2+, and having extensive lymphovascular invasion, the main tumor (pleomorphic lobular) characteristics were not so positive. It was also described as aneuploid. In addition to that I had high grade dcis with extensive comedo necrosis and the separate tumor in the nipple within dermal lymphatics which was felt to be a less common, although still presentation of IBC. Re. the pleomophic invasive lobular: Pleomorphic lobular carcinoma of the breast is a histological variant of infiltrating lobular carcinoma with a poor prognosis. Histopathology Volume 36 Issue 2 Page 156 - February 2000 doi:10.1046/j.1365-2559.2000.00810.x http://modpath.uscapjournals.org/cgi/content/abstract/16/7/674 leomorphic lobular carcinoma of the breast is a variant of infiltrating lobular carcinoma that has poor prognosis 4) Poor prognosis patterns (Grade 3): - Solid variant - large sheets of uniform small cells with round nuclei. - Pleomorphic lobular carcinoma - pattern resembles classical lobular carcinoma but the nuclei are grade 2-3, mitoses are easily identified, apocrine change is common, and ER is negative. - Signet-ring cell variant (>20% of cells should be signet-ring type) http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/Breast/Management /SynopticReportForm1of6/SynopticReportForm3of6.htm << The lowest survival are those with aneuploid tumors with S-phase fraction of greater than 12%.>> Now, in regard to the above, I do hope that by having had adjuvent Herceptin and all that I am doing that I have a chance to beat the odds. I am not sure I included the article which states that those with pleomorphic invasive lobular generally have a relatively short disease-free relapse-free survival or something like that. I want to belive that I will beat the odds; yet, when I saw steady rise in alk.phos. levels over a 21 month period it does put one into reality. Coincidentally, after interventions began it has steadily decreaed over the past 9 mos (taken at 4 too 6 week intervals). My goal is not to prove that I have mets nor even to obsess on the stats. Suffice it to say that clinically speaking that I am at very high risk as at least two onc's told me. I am using what I think is common sense in my analysis of what may be going on and doing whatever appears to be a reasonable and relatively safe intervention that might help things go more in my favor. My goal, if at all possible, is long-term remission, and of course, hopefully 'cure.' << I understand that you are trying to assess how likely it is that the pain in your shoulder is due to mets. For that purpose this statistic is irrelevant. The 5-year statistics are more appropriate because they more closely reflect the situation you are in, and have subdivisions you can identify with. The fact that 5 years is an arbitrary cut off is only significant if you happen to be close to it. As a general rule when chosing statistics always pick the smallest set that you are in.>> If one were to look at it that way, the signs suggest it is more likely mets than not. Pleormorphic invasive lobular has a both a short relapse-free and disease-free survival time. IBC is quite high risk. I am not even going to discuss how the stage III, aggressive dcis would further compound the issue. It just seems to me that whatever was going on, which happened almost out of the blue--and has slowly worsened over the past year--would more likely be due to mets than degenerative change alone, based on the findings mentioned above in other post. BTW, I am not a pessimist by nature. I tend to be overly optimistic and always try to look at the bright side and live my life accordingly. Here, though, I am trying to be realistic, even if I don't naively live thinking the negative, although am concerned. > << As a general rule when chosing > statistics always pick the smallest set that you are in.>> > > If one were to look at it that way, the signs suggest it is more likely mets > than not. I don't take issue with your point that your history indicates a relatively high risk of mets happening. But there is also a relatively high risk of other back problems, which applies right across the population, and in particular among people of middle age. My gut feeling is that this is the higher risk, so any given event is more likely to be 'minor'. For example, when my wife did get spinal mets, she also had a couple of unrelated pains that came on in the same year (eg left hip), which were probably a more consequence of having done a lot of jogging over her lifetime. So in her case only one of three events was mets. I think this is comparable. I am glad to here your alk.phos. levels are declining. That at least is good news. Tim << I don't take issue with your point that your history indicates a relatively high risk of mets happening. But there is also a relatively high risk of other back problems, which applies right across the population, and in particular among people of middle age. My gut feeling is that this is the higher risk, so any given event is more likely to be 'minor'. >> Normally, I would agree, but I never had back problems before. I did have some lower back probs which cleared either with the Celebrex or combo of meds I was taking--it hurt to stand in one place--pain was excruciating. In my past I had a couple of minor back traumas--but generally with back pain it generally affects range of motion. We have several relatives with a variety of back and even shoulder problems--that resemble the 'norm' for such. Mine are very atypical, and until recently had never encountered another soul in real life or elsewhere with a similar pattern until I met a gal on another support group who does have bc mets to those areas. That, of course may be coincidental, with even some ascertainment bias, but our experiences are more similar than anyone else I met. I also found an oncology nursing guide on line which discusses the pt. that sciatic pain in those with breast cancer are often an indication of mets to the involved area. The MRI showed either a cyst or mass. The spine dr. who recommended surgery said he could not rule out mass and could not get clean margins w/surgery. The oncologist recommended against surgery for those very reasons unless absolutely necessary. That was for what was going on in the lumbar area--which was highlighted on PET and other scans before this cyst/mass appeared on the MRI. << I don't take issue with your point that your history indicates a relatively high risk of mets happening. But there is also a relatively high risk of other back problems, which applies right across the population, and in particular among people of middle age. >> True, but I am involved in fitness training and exercise, and overall feel as if I am in excellent shape. I do suppose there could be some added wear and tear because of that but my functioning profile does not fit with someone who has chronic back or shoulder problems. The scans suggest possibiliy of mets could not be ruled out. I hope, if they are, then the interventions I am doing will keep them at bay. My gut feeling is that this is the higher risk, so any given event is more likely to be 'minor'. For example, when my wife did get spinal mets, she also had a couple of unrelated pains that came on in the same year (eg left hip), which were probably a more consequence of having done a lot of jogging over her lifetime. So in her case only one of three events was mets. I think this is comparable. I am glad to here your alk.phos. levels are declining. That at least is good news. > Madiba wrote: << Exactly, Kaye is a bit fixated on that 70% figure. It means > 'by the time they die' about 70% have mets. [quoted text clipped - 5 lines] > one who tends to accuse others of negative traits has often been accused by > others of having/doing the same). My, you are touchy. No offense was intended, I thought this was a forum where open discussion was possible. Your indirect insult is noted, don't expect further replies from me. Signaturemadiba Madiba wrote<< My, you are touchy. No offense was intended, I thought this was a forum where open discussion was possible. Your indirect insult is noted, don't expect further replies from me.>> Thanks for clarifying and accept that no offense was intended. No indirect insult was intended on my part either. I really do appreciate your input and yes, this is an open forum and do think it is important to share and discuss all aspects. Each of us comes here with differing experiences re. b.c. along with different pass; yet we are all basically here for one purpose--to share info as well as give and receive support re. b.c. I try to come from a positive perspective and will take care to make sure that I continue to do that as well. Madiba, I again want to apologize if you felt in anyway offended by my response to your post. There was no offense intended, although it was in response to an offense that I felt personally. Your analysis may have been not that far off-base; however, I am a bit more sensitive than usual because I have been dealing with what to me is an overwhelming situation. (Plus, I have a hard time with negative sarcasm--makes me want to crawl into the corner and hide). My survival instincts, albeit somewhat crude (in terms of base level of knowledge which is limited and has many gaps), have been my guide in this unchosen and frightening journey. Your posts and feedback have been an invaluable resource for many, including myself, and hope will continue. << Madiba wrote<< My, you are touchy. No offense was intended, I thought this was a forum where open discussion was possible. Your indirect insult is noted, don't expect further replies from me.>> Thanks for clarifying and accept that no offense was intended. No indirect insult was intended on my part either. I really do appreciate your input and yes, this is an open forum and do think it is important to share and discuss all aspects. Each of us comes here with differing experiences re. b.c. along with different pass; yet we are all basically here for one purpose--to share info as well as give and receive support re. b.c. I try to come from a positive perspective and will take care to make sure that I continue to do that as well.>> > Madiba wrote: << Exactly, Kaye is a bit fixated on that 70% figure. It means > 'by the time they die' about 70% have mets. > Madiba, I again want to apologize if you felt in anyway offended by my > response to your post. There was no offense intended, No, that was deliberate retaliation for subjectively felt 'sarcasm'. > although it was in response to an offense that I felt personally. Aha, a harmless 'response'. >Your analysis may have been not that far off-base; however, I am a bit >more sensitive than usual because I have been dealing with what to me >is an overwhelming situation. I understand that. Sorry to have been so up-front about it. > (Plus, I have a hard time with negative sarcasm--makes me want to crawl > into the corner and hide). You sure have a lively imagination. Sarcasm was definitely not intended. > My survival instincts, albeit somewhat crude (in terms of base level of > knowledge which is limited and has many gaps), have been my guide in this > unchosen and frightening journey. They have served you well. If you really had IBC you're lucky to still be alive. In addition you've gathered a huge store of knowledge. >Your posts and feedback have been an > invaluable resource for many, including myself, and hope will continue. They will continue, but not for you. The only currency on usenet is politeness, and you overdrew your account. Signaturemadiba Madiba wrote << > Madiba, I again want to apologize if you felt in anyway offended by my > response to your post. There was no offense intended, No, that was deliberate retaliation for subjectively felt 'sarcasm'. My comment was a defensive remark or a come back about something that made me feel quite embarrassed, which was being accused or labeled as 'fixated.' 'Sarcasm' or 'sarcstic' may have not been the 'right' term. The image I had was or took was that of a child being negatively labeled by their teacher in front of the class. << They have served you well. If you really had IBC you're lucky to still be alive. In addition you've gathered a huge store of knowledge.>> I had a rarer presentation of IBC. It was not initially thought to be such and was only dx'd after surgery. I had a separate tumor (in addition to main one) that was within dermal lymphatics. I have met with 2 oncologists through our health care plan--and they indicated that it was. I have also seen 3 private oncologists plus a 4th who does second opinions only (and has co-authored a book on cancer). The last one is working together with us and told me I had the most complicated case of breast cancer he had ever seen. My first oncologist told me that I "may" have IBC. We thought, at first, his choice of words was because his first language was not English. However, he did mean 'may.' We ordered a book about breast cancer through a university library which indicated that my presentation was in the "gray" area for IBC. However, the criteria for dx of IBC have been revised and includes such. Initially, I was told by my surgeon and at least one of the 2 other ouside, private surgeons we went to for a 2nd opinion (at the suggestion of the first surgeon whom I used (and at the time hadn't felt the need for a 2nd opinion--but she advises all b.c. patients to do that) that the nipple was changing because the tumor was pulling on it. A 4th surgeon, who was in our health care plan--was the only one, however, who was right. He thought the main tumor was too far away to be pulling on the nipple area and causing the change. None of them picked up on the fact that it was changing rapidly. From the day it started, it changed daily--was sinking rather quickly into the aereola. The degree of change was more rapid than what would be expected with a slower growing breast cancer. I had first noticed a hardened area in an area that was almost above my breast within a day after a reportedly 'normal' mammogram. It wasn't a pea sized lump or round--kind of felt like a hardened muscl. I thought that it was a bruise or tissue damage from the compression of the mammogram. I showed my ob-gyn. a couple of weeks later who flippantly reminded me that my mammogram had been normal. Nine months later during the early morning hours of my 50th birthday I was awoken by a severe burning pain in my right breast. My initial thought (due to all the caffeine I had been drinking, stress, and late hours) that it was my heart but then it couldn't be because it was on the wrong side and then had the thought that it was 'referred pain' being. The burning pain went away. Two days later my breast ached. I also felt an occasional stabbing pain. We had left to go away for an extended weekend out of the area. It hurt on and off--reminded me of a mastitis infection I had had 15 years before while nursing my youngest. I thought I might even be pregnant (and had 2 pregnancy tests)--my breasts had been more tender when pregnant and for the first time ever I went the longest between periods--went 6 weeks instead of every 3 weeks which I had been doing for the past year or two. Anyway, the following criteria from the IBC foundation include having only the nipple change as being diagnostic and also indicate that one can be dx'd pathologically with or without clinical symptoms. Interestingly, IBC grows in sheets which is also characteristic of lobular. It was the dermal lymphatic involvement, though, which the oncologists said, was the pathological criteria for it being lobuar. There is an IBC email list/group that I am involved with. There is an increasing number of those with IBC who are surviving much longer. I was very lucky that my oncologist gave me Herceptin (weekly, for a year) out-of-protocol which is what I think helped get this 'beast' in control. However, my gut level feelings were that it wasn't hit 'hard' enough or long enough. As I learned about b.c. and have read stories from so many (on other support groups), I would have liked at least 2 more cycles of Taxotere along with the Herceptin--which he wouldn't. And after I had a bout of benign paroxysmal positional vertigo, followed by 3 unexplained attacks of pancreatitis, and then 5 weeks later having blood levels go 'whacky' with beginning rise in tumor markers which is why we went for outside private oncology opinions, including UCLA with one of developers of Herceptin (before seeing a 2nd oncologist through our HMO). Interestingly, of the two women I know who are still alive who had more than 10 positive nodes (I only had 9), both have one commonality--each had a full year of chemo, and at least one of those had it weekly had higher dose. She, however, doesn't remember one of the drugs--it was in number form (experimental). She was dx'd at age 32 with 14 positive nodes. She has not had a recurrence in 16 tears. There is another occasional poster to this group who had over 20 nodes positive who also had a full year of chemo. However, I don't believe either of these gals had IBC (or at least not dx'd IBC). My goal is survival--and hopefully long-term remission if not cure. And, I may be 'fixated' but that is because I have been told that I am at very high risk for recurrence. I have had stuff going on in my spine for the past 6 months and have been told that it may be non-related to cancer but that they can't rule out mets. I have had on-going pain in upper arm and shoulder for almost 3 mos and have been told the same. This past week the discomfort extended to back of head and if I lie on my back and get up, feel like I am on a rocky ship and have hard time maintaining balance. I am very afraid. I am hoping that whatever showed up on cervical x-ray and MRI is nothing more than a bone spur pressing on that area. Yeah, I guess I am fixated because of all that has and is going on. Besides my family, my only solace is work and exercise (walking with others who are doing the breast cancer 3 day which is in 2 weeks. I have raised more than my go amount). I am hoping that what is going on in the top of my neck/back of my head is not going to interfere. There is another gal doing the walk who just finished treatment for IBC. She has been told that she will be allowed to remain on Herceptin for the rest of her life--this occurred after she switched insurances (from an HMO to a PPO). She was dx'd at stage IIIb--no distant metastases discovered. I will post criteria for IBC on another post. Oops. Kaye wrote << It was the dermal lymphatic involvement, though, which the oncologists said, was the pathological criteria for it being lobuar. >> I meant to write that it wa the pathological criteria for it being IBC (Not lobular). Madiba wrote <<Kaye wrote>>... << > My survival instincts, albeit somewhat crude (in terms of base level of > knowledge which is limited and has many gaps), have been my guide in this > unchosen and frightening journey. They have served you well. If you really had IBC you're lucky to still be alive. In addition you've gathered a huge store of knowledge.>> I did this out of desperation. It is not something I wanted to do. Because of my horrific family hx, I didn't want to be paranoid about b.c. I did regular mammograms (in fact had gone a year and a half between last supposed normal one and one before that) and did partial self-exams. I didn't want to think about it--figured that with all the hype out there, if I went for regular dr's visits and did the above, I would be protected. So, I did all the 'right' stuff but the system in place didn't work for me. At the time of my dx, I was quite naive. As far as breast cancer was concerned, I thought one either had it or didn't. I had no idea what positive nodes meant (which probably was a good thing at the time--or I might have felt doomed from the start). I couldn't even pronounce the word metastases, let alone knew what it meant. It took me 21 mos. to understand my pathology report. I have done all I've done out of desperation. When dr's can't answer your questions because they don't have the knowledge--and they can't explain your diagnosis--it is a bit frightening. In fact several months after my diagnosis, we sought our first private oncology opinion with an oncologist who has published many papers and is now involved in vaccine research. It wasn't at all reassuring when he told me that he did not disagree with the treatment I was getting, but that he wouldn't necessarily have done the same--and then would not tell us what he would have done. He also recommended I have my pathology slides re-read--at a cross-town, rival university by a pathologist whom he claimed was the best in the world. We did. That pathologist confirmed almost everything, but he couldn't check the Her2+ factor which he recommended doing the FSH test on as opposed to the immunoassay. He said that only 5% of those with lobular tested positive for Her2+ and recommended it be re-done to make sure. My husband and I happened to be returning slides at the pathology lab when we saw 2 of the pathologists. We asked if we could ask a question--they were more than willing to discuss. They confirmed our thoughts--they said they were 100% sure that I was Her2+ and if there was the least doubt would have done the FSH test to confirm. My surgeon, who specializes in breasts and children, said that I was the second patient to test positive for Her2+ (at +3) in the year that they had been testing for it. I was sure that our HMO was not going to make a mistake on that one when at the time the cost of Herceptin was $66,000.00 (yep, sixty-six thousand) per year. We also learned from the university pathologist and a friend of my sisters who was a pathologist (not breast) at the university that referred us to the other one, that the pathologist whose name was on my report also had the reputation for being one of the top pathologists in the city. I also subsequently learned that the diagnosis of pleomorphic invasive lobular (which is a rarer, more aggressive variant of lobular with relatively short-relapse free survival) was often missed. I don't know how I got so "lucky" to have so many of the rarer of negative factors taking place. Again, I am glad that I didn't understand my diagnosis at the time I heard it. I am still completely overwhelmed by it. When I realized and continue to learn that some of the dr's don't even understand it, it friightens me even more. In addition, when a radiologist writes on my report--that what I have going on isn't associated with most breast cancers--and learn that he is referring to the majority (the 85% who have invasive ductal--and that I am NOT included in that group), it makes me even more scared--because the referring dr. is taking that report as 'gospel' fact--that what I have isn't likely associated with breast cancer. One example was the enlarged retroperitoneal nodes that were on my first CT scan--report said not likely associated with breat cancer. They're not--for most. However, that is the 3rd most common site for metastases for lobular. When discussing this with a radiologist/friend--he told me that he didn't know that. He is not a radiologist at our facility. However, if a private radiologist doesn't know this--and the referring dr. may not know this (although think my oncologist most likely does) but other dr's might not realize that, and if one treats patients based on what is most likely for the majority--and if you are not in that group--it further makes one less secure--and yes, even 'fixated.' I decided to try a support group through our HMO--just to see what it was like. This was at the beginning when I still didn't know as much. The group was not run that well--it involved each member sharing their story. What I didn't realize was that new people are supposed to spend the most time sharing theirs--or that was what usually happened. I was the 3rd person, so I gave a brief summary like the two before me. There was one other new person that day. Most of the time was spent with her. Now I know the big "C" (cancer) can be frightening. (I grew up with it--spending my weekends between the ages of 7 through 11 years visiting the next of my mom's relatives who was dying from cancer. My dad's mother, whom I never met died in her early 40's. One of my mom's aunt's died in her early 40's from B.C. Her daughter, my mom's first cousin died at the age of 28 from b.c. and this cousins brother died in his 30's from Hodgkins. Another first cousin died, who was like an aunt to me, died at the age of 31 from b.c. Another of her first cousins, a male died in his 40's from B.C. My mother was dx'd at age 50 (I was same age) and her sister was dx'd at age 45). Anyway, this gal in the support group goes through her story--hysterically crying. She was dx'd at stage "0" and has a 99% chance of cure. My thoughts were--'help' get me out of here. I was so depressed after that meeting. What I learned was that everyone there was in a better place than I was at time of diagnosis and in terms of what was going on. Some of the people had been in the group for more than a year. I hadn't gone until more than 4 or possibly 6 mos since my diagnosis. I never went back. However, that experience further solidified the reality I was dealing with and resulted in my delving further into learning more about b.c. I have no clue if what I am doing willl help in the long run. I hope it may give me an edge and let me be around until more treatments are available. I am frightened, and yes, fixated on what is going on--as I sit here, feeling the discomfort in the back of my neck and discomfort and strain in the back of my head--scared out of my wits that something spinal is going on that is cancer-related rather than just a strain or pinched nerve. I should be doing something more constructive--even getting my 'affairs' at the least, organized--but am avoiding that at all costs. In one hour I am meeting one of my hiking buddies (from 3-day)for a training walk--doing shorter one today. Madiba wrote: << Sheesh Kaye, looks like a hornets nest and now you want a THIRD onc's opinion? :-/ Look, I haven't seen your PET scans and I have more experience with bone scans. An experienced nuc. rad CAN differentiate between degenerative changes and mets. The difficult regions are the joints, in the long bones its easy. I don't have insight into the prescribing habits of HMOs, so I can't say why which test was or was not ordered. I get the feeling someone wants to shield you from the bad news.>> Thanks so very much for taking the time to answer--much appreciated. I am not sure anyone wants to 'shield' me from bad news but do think the HMO wants to cut down costs of treatment. And I do agree an experienced nuclear radiologist should be able to differentiate between bone mets and degenerative changes. However, as I mentioned the PET was done by a fellow student. I happened to be hanging around, waiting for one of the dr's to come out and saw some of what was going on. They--fellow students were presenting their cases. I am guessing the rad. onc fellow presented his along with the analysis. It sounded plausible and they, head dr.'s signed off on it. This was done at a major teaching university. I had been hanging around to verify that this fellow student didn't want to see any of the previous films I had brought with me. I asked him 3 times and actually brought them up to make sure. He said he had the previous years PET to compare with. The report from the previous year had recommended that MRI be done if there were any clinical symptoms re. L4/L5 region. That was NEVER done. However, there had been symptoms going on in that area--before the PET scan was even recommended. So, in my case, it seems as if I am getting the 'right' tests but there is something not 'right' in terms of the interpretations. There is definately some lack of consistency there. <<Zometa is not an osteoporosis drug, its for bone mets. Draw your own conclusions.. >> A private dr. had recommended a once/year infusion to prevent osteoporosis. I do know it is being researched for that at this time. Either way, it appeared to contribute to reduction in discomfort. Also, don't know if I mentioned it--but from time from dx my alkaline phosphatase levels had been slowly rising over a 21 month period and were just a few pts from being above normal (in Dec); it was 116; normal for our lab is 121 or <. I had first Zometa infusion the next month and began prophylactic Doxycycline. That month (January) or next my alk phos level stabilized and from then on has steadily decreased (since last February) until it is about where it was at time of my dx. Last reading was 63. BTW, I have blood draws every 4 to 6 weeks. <<If the shoulder pain does not improve on the two drugs you mention, play the onc's game and suggest a short course of radiotherapy 'just to reduce the arthritic pain'. What you don't want is to be stuck with morphine, it not very good for bone pain anyway. That's an interesting thought--and for the first time it occurred to me today. I called about the orthopedic referral that was sent in last week. I was told first available was on 11/19. I told them that was unacceptable--I would go privately and expect them to pay. Receptionist gave me to someone else who said they had a cancellation tomorrow. It doesn't hurt as bad as it did and there is improved range of motion. However, after I move it, it begins to ache or feels fatigued several seconds later--either shoulder or upper arm. Sometimes an area in my forearm will go numb and my hand will cramp up and become claw-like. Occasionally I will have shooting pains in my fingers and sharp tingling--in some of the fingers, not all of them. Sometimes my upper arm will just start to ache. It bothers me during the night. It is uncomfortable to lay on. Range of motion is good for the most part. > <<If the shoulder pain does not improve on the two drugs you mention, play > the onc's game and suggest a short course of radiotherapy 'just to reduce [quoted text clipped - 14 lines] > will just start to ache. It bothers me during the night. It is > uncomfortable to lay on. Range of motion is good for the most part. Another thing to consider is that the left shoulder joint is (presumably) being used more because of the problems you're having with lymphedema on the right. Those symptoms on the left could mean a nerve is being tweaked, not necessarily in the shoulder but at a higher level such as the cervical spine or the brachial plexus. Was arthritis a problem or at least known before the dx BC was made? The lack of coordination of all the diagnostics and drawing the right conclusions from those tests is partly due to too many MDs being involved. You need one primary care doc getting all the results and doing the coordinating. Signaturemadiba madiba wrote: << Another thing to consider is that the left shoulder joint is (presumably) being used more because of the problems you're having with lymphedema on the right. Those symptoms on the left could mean a nerve is being tweaked, not necessarily in the shoulder but at a higher level such as the cervical spine or the brachial plexus.>> Thanks so much for your response. Actually, although I am left-handed and do have lympedema in my right arm, I continued to use my right arm for physical activity. I guess I had sort of mixed dominance--i.e. wrote and ate with left but carried purse on right shoulder (and continue to do so), bowl with right hand, played tennis with right and batted (softball) with right. I always felt awlkward throwing with left and feel that I aimed better with right). I had been doing some light gardening the day before it began hurting daily and assumed that I had injured it. However, as the pain continued to increase I first called my oncologist because the pain in my shoulder had first been noted in 10/02 and had been intermittent until recently. I remembered the story of Tim's wife--his report of how her bone/spine mets had been discovered. From what I recall of his report, she thought she had hurt her back moving furniture but the pain continued. Although my analysis of what might be going on may have been premature, it was foremost in my mind. My shoulder had been hurting intermittently for no known reason since the previous October and after some light gardening--at which time I primarily still used my right arm and hand, the pain increased in both frequency and intensity and was hurting daily. I did think of a possible injury. Anyway, I called my oncologist who told me to call my regular dr. He was out of town and I saw a new dr.--young internist who was thorough. She ordered x-rays, an ekg and an ultrasound of carotid artery (am guess ing the last two were because the pain was on the left side, although I was sure it was only arm and shoulder related--but didn't question her on that). The tests were ordered stat--at least the first two. I was given films/readings and sent back to her. She told me x-ray of shoulder was normal. The pain continued to worsen over the next week. I was in severe pain at night. Sometimes my upper arm just began aching. It would wake me up at night. I could not lie on my back or shoulder. I wound up lying on my right arm (lymphedema side). At this point my husband called my oncologist. It was around 2 weeks of daily pain then. He looked at either the x-ray report or the x-rays (not sure which) and told my husband that the x-rays I had had 9 days earlier (ordered by internist stat) had shown a bone spur. He said she should have ordered more films. I never heard back from her. I would assume she would have seen that report at some time; however, she only told me her analysis of the films on day they were taken (and had not been read by radiologist yet) that they were normal. So, my oncologist ordered more x-rays. The report for those stated "degenerative changes." He then referred me to physical therapy. It took 11 weeks to get a physical therapy appt. which seemed so 'off' in terms of recommendations--2 shoulder strengthening exercises--and finally had that last week. Meanwhile the intensity of the pain was so bad, I could not brush my teeth or lift a cup of water. I forgot to mention during this time I was taking 400 mg/Celebrex daily--200 mg in a.m. and 200 mg w/dinner. << Was arthritis a problem or at least known before the dx BC was made?>> I am not sure -- but previous films after a car accident about 10 years ago had reported degenerative changes all over although nothing had bothered me. I do believe that changes in shoulder were mentioned along with knees and a few other typical areas--but again nothing bothered me. <<The lack of coordination of all the diagnostics and drawing the right conclusions from those tests is partly due to too many MDs being involved. You need one primary care doc getting all the results and doing the coordinating. >> Unfortunately, that has not been happening. Last Spring, when my cholesterol was elevated I asked my internist about taking a statin drug and commented I was especially interested because of potential benefits re. cancer. Now, mind you, he had recommended I take it more than a year before. However, at that time I wanted to wait--since I had been surprised at the change in cholesterol from normal to above normal AFTER I had lost around 30 lbs, carefully watched my diet, eliminating fats and other high risk foods, and began a regular exercise program. He had originally recommended it. So at a later point in time when my cholesterol was STILL high I asked about starting the statin drug and mentioned its possible benefit re. cancer. This was the first time I had spoken with him in over 6 mos. I had called him (after my oncologist had told me that I needed to call him re symptoms); however, I only spoke with his nurse. So, after I requested the statin drug based on his former suggestion and the possible added benefit of it, his response to me was that he had not contacted me in the past 6 mos. because he did not want to talk about my symptoms possibly being related to b.c. HUH??? Last December--I developed sudden swelling in my right leg. I called oncologist who told me to call regular dr. I did. He ordered regular ultrasound. It was normal. Now, I had had bilateral leg swelling for past 8 or 9 years of unknown etiology. In fact at time of b.c. dx, I had been seeking cause for leg and abdominal swelling. (I was concerned about possible ovarian cancer--since that those are signs. At that time I was also anemic and no testing was done to find out what that was from. I was prescribed iron which did not help). This was before dx. So, this past December, in addition to on-going bilateral leg swelling for which no cause was ever found. (A few years before my b.c. dx I was told by my daughter's podiatrist that my legs looked like that of a 70 year old woman--I was in my 40's. He ordered venogram which was normal), my right leg started swelling more than my left. So, after normal ultrasound I looked up leg swelling and b.c. It recommended a different type of ultrasound--can't recall name off-hand. My 2nd opinion onc. ordered it. That was normal. My internist never called me on problem, though. My onc. told me to call him but he doesn't want to be responsible if its cancer related. BTW, this leg swelling--decreased for the first time on its own a couple of weeks ago--the day after I walked 14.5 miles in training for the breast cancer 3-day. I had been a little nervous about all the walking I was doing with swollen lower legs (along with severe sciatic pain) but I forced myself to do it. Again, I was on 400 mg. of Celebrex / day. Oops, off on a tangent again--but this is all inter-related. Back to arm and shoulder. I finally put another call into my internist--now I hadn't seen him for this since he was out of town and tell nurse that pain is continuing and quite bad. This is last week in September. Nurse calls me back a week after I call--he wanted to review my records re such and says he wants me to come in for cortisone shot. Since I hadn't heard back from him in several days I finally call 2nd opinion oncologist. I get appt for following day. I tell him about PET scan. He increases Celebrex to 800 mg. day and orders another Zometa infusion. I start to feel better after increased Celebrex. I have cortisone 4 days later. That didn't help immediately although it seemed to take edge off shoulder pain but upper arm still ached. I also then experienced numbness in area on upper forearm, and hand cramped--like 'charlie horse' and became claw-like. I had also had intermittent tingling in selected fingers once in a while. A week after cortisone shot I then have Zometa infusion a week after that. Within a day of so of that things seem much better for the next week. Last April I had sciatic pain and had lumbar MRI which showed increased uptake in L4/L5 and either a mass or synovial cyst. I had all kinds of neurologic symptoms--tingling in feet, legs--lower but also tight band-like feeling around spine. This post is way too long so will end and continue on another. I don't mean to bore anyone--so please skip if not interested. Hi Madiba; I am currently in a clinical trial (study CZOL446E US 32) taking Femara daily, with infusions of Zometa every 6 months to see if the Zometa helps to prevent bone loss and osteoporosis. Wouldn't it be great if it does work for osteoporosis prevention? Marianne > Hi Madiba; > > I am currently in a clinical trial (study CZOL446E US 32) taking Femara > daily, with infusions of Zometa every 6 months to see if the Zometa helps to > prevent bone loss and osteoporosis. Wouldn't it be great if it does work for > osteoporosis prevention? It would indeed. Whatever happened to calcium tabs, calcitonin and lots of excercise? Went down the tube with HRT? Signaturemadiba Calcium tabs and lots of exercise (weight bearing) are still there. And the Zometa infusions are probably not really going to do much for the possibility of bone loss, but I guess a lot of us are "grasping at straws" in hope. My understanding is that HRT causes more bone loss than normal aging. I haven't heard of calcitonin before but I looked it up on the Internet. Since it involves self-administered injections, I think I'll skip that for now. Marianne > It would indeed. > Whatever happened to calcium tabs, calcitonin and lots of excercise? > Went down the tube with HRT? > Sheesh Kaye, > looks like a hornets nest and now you want a THIRD onc's opinion? :-/ [quoted text clipped - 11 lines] > reduce the arthritic pain'. What you don't want is to be stuck with > morphine, it not very good for bone pain anyway. Since this thread is going on and on (poor Kaye), and I can't figure out if Kaye is looking for symptom relief or prognosis or ??? I'm replying just as a reminder of what you said about nuking it by an "experienced radiation oncologist". Regards J J wrote<< Since this thread is going on and on (poor Kaye), and I can't figure out if Kaye is looking for symptom relief or prognosis or ??? I'm replying just as a reminder of what you said about nuking it by an "experienced radiation oncologist". Regards J >> I guess I am looking for relief and better diagnostic information about what is causing the problem. As far as prognosis, although that is probably a given in terms of ultimate concern, I am most concerned about accurate identification of the problem. It seems to me that in light of the given factors, that the risk for mets is probably greater than the risk for anything benign and am guessing that ruling that out should be a high or higher priority. I think one needs to look at the whole picture first in some cases. Unfortunately, I feel that my case would be one that warrants that consideration............... > I guess I am looking for relief and better diagnostic information about what is > causing the problem. As far as prognosis, although that is probably a given in [quoted text clipped - 4 lines] > look at the whole picture first in some cases. Unfortunately, I feel that my > case would be one that warrants that consideration............... I would guess that the Zometa is changing your bloodwork???, so it can't be relied on to monitor for mets? http://www.labtestsonline.org/understanding/analytes/bone_markers/glance.html There's no mention of PET here AFAIC (but I could be blind). http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_bone_metastasis_diag nosed_66.asp Unless you want to (have them) zap (radiation therapy) what's seen on your spine and the shoulder as madiba suggested, maybe your only recourse, for now, is to wait the 3 months and have them compare imaging tests??...but that doesn't help you now symptomatically.. I'm wondering at your seeming reluctance/hesitancy to do that? Oh, and I meant to ask you Kaye, if they're continuing to check for signs of pancreatitis ? (my understanding is it can occur, sometimes, without obvious pain, but I could be wrong). A CT-scan I think sees shadows (of inflammation). Is pancreatitis a warning on Zometa or?? what's up with that? Liver or pancreas (and back pain) would make me question/wonder...but I don't know. J-not an expert J Walton wrote << There's no mention of PET here AFAIC (but I could be blind). http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_bone_metastasi s_diagnosed_66.asp>> Where? In this article or my reports? I had a PET scan. I have no clue if I do or don't have bone mets. My shoulder first began hurting on 10-31-02 , out of the blue. It would hurt intermittently. I reported it to my oncologist. He never wrote it down. Then on 8-6-03 I did some light gardening. I was using my other arm/shoulder more; however, since that time I started having severe, daily pain of increasing intensity primarily in both my upper arm and shoulder. Once in awhile it would extend across my shoulder and upper side of my neck and even less often to the back of my head on that side. It would also sometimes hurt in my armpit on that side. I thought I had injured it. I had an x-ray that I was told was normal. The pain continued, I called my oncologist who looked either at the x-ray or x-ray report and told me that it had shown a bone spur and that the dr. who ordered it should have ordered more films--cervical xrays which he did. The report for that stated 'degenerative' changes. Now--2 mos before that I had had an MRI of the cervical and thoracic spine which had reported something going on in the cervical spine but report had stated that it should be further checked if there were any symptoms. I am not sure but somehow think that report may be referring to same report as x-ray. The pain was so severe one day it hurt to brush my teeth or pick up a glass of water. I then had a PET scan which we paid for out-of-pocket. It was done by a fellow student and signed off by the head radiologists. That report stated that there was increased uptake, particularly in the left--the side that has been hurting. However, in the clinical hx, he had WRONGLY stated that I 'may have lymphedema in left arm.' I do have lymphedema, not may have it--which I told him and it is in my RIGHT arm and was wearing a custom sleeve on that arm at time of scan. However, I do NOT have pain in that arm---pain is in the opposite arm and shoulder. I faxed letter that info. in writing and called them and asked for correction of clinical hx and re-evaluation based on corrected information. I received an apology stating that they will correct the clinical hx but not the report. I learned from my daughter who is in med. school that they can't correct the report. They also offered me a free PET in 3 mos. Meanwhile my arm and shoulder hurt daily. The PET was done one month after the daily pain started. Now, the day after the PET started I began taking the Lovastatin (which apparently also has or mat have anti-tumor properties). The pain, although daily began subsuding in intensity. 3 weeks after that I had another Zometa infusion and also increased the Celebrex from 200 mg/twice /day to 400 mg/twice /day. That seemed to help even more. I then had a shot of cortisone. That might have taken the edge off even further, although my upper arm still would ache. A week after the cortisone shot I had another infusion of Zometa. That was about 2 weeks ago and that seemed to help a little more. I finally received the referral for P.T. That was almost a joke and seemed incongruous with the discomfort I was having--was given 2 shoulder strengthening exercises. I also received a referral to orthopedics. The dr. ordered an MRI which I have not yet had but think it is only of my shoulder and not upper arm. However, he thinks it (pain) is from neck (cervical) area even though that really didn't hurt much and never had difficulty with neck movement. The week after I had the epidural I felt an area of my forearm get numb and my hand cramped into a claw like position. Other times some of my fingers on that hand--some, but not all of them, would have severe tingling-- I have no idea what it's from but did find the following references: http://www.tri-x.com/Info/Histories.html Breast Cancer - 1 A. History * A 40-year-old female with breast cancer had a lumpectomy along with chemo/radiation therapy one year ago. The patient began to experience pain in the right shoulder two months ago. B. Original Diagnosis * A bone scan was negative. A CT Scan was initially read as negative. C. PET Diagnosis * A Whole Body PET Scan found numerous lymph node metastases in the upper chest. D. Change in Treatment * The treatment plan based on conventional diagnostic techniques would have been watchful waiting. Thee PET Scan found a number of lymph node metastases, and the patient was put back on chemo/radiation therapy. A re-read of the CT after PET still could not accurately gauge extend of disease. http://www.nethealthbook.com/rheumatologicaldisease_shoulderpain.html Tumors in the shoulder: One of the causes of shoulder pain can be a tumor, either benign or malignant, that is growing in the shoulder blade or the upper end of the humerus. Benign cysts are not uncommon. Unfortunately, malignant tumors can also be found and are not uncommon either. Osteosarcoma is one of the common malignant tumors, but kidney cancer and breast cancer are common cancers that tend to metastasize into the humerus bone and the shoulder blade. About 18% of breast cancer patients develop humerus metastases (Ref. 5). "Neuromuscular complications Malignant infiltatration of the brachial plexus occurs in approximately 2.5% of all women with breast cancer.48 The tumor cusually compresses or invades the plexus from belo w with neurologic symtoms progressing from lower t |
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