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Medical Forum / Diseases and Disorders / Breast Cancer / January 2004Bone Mets??????
Hi all, I have a question.. I had my BC treatments in 2000 and since then have had a slight raising on my blood tumor markers. I had, about 3 or 4 months ago, bone scan. CAT scan, PET scan, chest xray, before a D&C, and a Mammo. All reported clear. For the past couple of weeks I have had some tender spots on the back of my head. At first I thought I might have hit it under a table in my sewing room, as I had vaguely remembered getting under it for something dropped. Well, it has been a few weeks and I forgot about it, when I noticed that there were some places still tender to the touch...They don't hurt all the time only when I touch them. I was wondering, do bone bets to the head hurt on the outside as tender spots or like headaches...in the inside...Do I go to my Primary or back to the Onc??? My next appt with the Onc is for 4 months...Should I go right away???? ...Pat from Apple Valley, CA > Hi all, > I have a question.. I had my BC treatments in 2000 and since then [quoted text clipped - 10 lines] > or back to the Onc??? My next appt with the Onc is for 4 months...Should > I go right away???? ...Pat from Apple Valley, CA I think they can hurt either inside or outside the skull. See your Primary care doctor, no harm in mentioning your concern about mets to him/her though. If s/he thinks it is cancer-related s/he will refer you back to the oncologist, but is better equipped to eliminate all the possible causes which aren't cancer related. There is no panic. Going early is unlikely to make much difference in the long term if it does turn out to be mets. The main object of treatment for mets is to control symptoms, and if the symptoms aren't troubling then there isn't a rush. Tim Jackson > > [quoted text clipped - 28 lines] > >Tim Jackson Thanks Tim, I figured as much..I think I'll go see the PC as he is really easy to get into..I guess he isn't all that popular. Good for his patients :-D ...Pat > I was just wondering something...I've seen the subject of mets come up a few times and some posts have puzzled me to a certain extent. I realize once there's mets there is no chance of cure...but doesn't it make more sense to find things early even though it has spread? Seems to me that catching something before it spreads any farther would have _some_ benefits. I never have understood the logic of this...why sit around waiting for symptoms to show up...which I would think means that it has gotten even worse, then finding it abit ahead of symptoms, perhaps through lab work or yearly scans and holding if off abit... Thanks Tim for all the help that you've given all of us over the last few years and hope I didn't offend by asking this of you...there's just alot of this that seems to defy logic...Several that I know from other bc support groups have asked the very same thing....and don't agree with this wating around instead of trying to stay one step ahead of this crud...with whatever might be available to us. Thanks in advance.Take care there/God bless annie Ultimately.....we know deeply that the other side of every fear is a freedom. "Courage"...is *fear* that has said it's prayers. > I was just wondering something...I've seen the subject of mets come up a > few times and some posts have puzzled me to a certain extent. [quoted text clipped - 6 lines] > worse, then finding it abit ahead of symptoms, perhaps through lab work > or yearly scans and holding if off abit... The traditional view is based on historical statistics which show that early intervention has not significantly improved overall survival time, symptom free survival time or remission rate. Therefore oncologists would argue that the best we can do is to maximise the symptom free period by using the treatments to reduce symptoms when they occur. It would be a waste of the one-shot therapies like chemotherapy or radiotherapy to use them when there are no symptoms and then not have them available later when there are symptoms, if they do not slow the process much. "Hold your fire till you see the whites of their eyes". A simple model of cancer growth and spread would not predict this effect, it implies a mechanism something like that the presence of large tumours in some way inhibits the growth of smaller ones. In that case there should be a potential future drug development in finding an inhibitory factor that fools (small) tumours into thinking there is a big one present and remaining dormant. So much for history. Newer treatments, especially Herceptin, have been able in some cases to apparently significantly prolong survival, although we don't really yet have a statistical base to confirm this. (One would have to find a control group who fit the criteria for benefiting from Herceptin but didn't get it, and follow them up till death.) This would suggest that in a few cases early treatment could be beneficial, the problem then is identifying those cases at a sufficiently early stage to apply the treatment. It is not easy to diagnose mets in the early stages, bone mets in particular often mimics some other temporary condition. This leads us back into the idea of screening lots of perfectly healthy cancer survivors to find those who do have early treatable mets, and all the risks and costs that that entails. It could be done, but the overall benefits so far are dubious. Tim > I never have understood the logic of this...why sit around waiting for > symptoms to show up...which I would think means that it has gotten even [quoted text clipped - 6 lines] > this wating around instead of trying to stay one step ahead of this >Courage"...is *fear* that has said it's prayers. I have also been bothered by this too. But I think it is a balance of risk verses benefits. I do think the women should be the ones to makes the decision whether or not to monitor. And I would also add that sometimes the treatments itself have side effects that are best avoided unless needed. And it also seems like the treatments can build up resistances like antiobotics. I also have strong feelings on this issue. It does seem to be the general concensus in the oncology field to not do routine scans. Some don't even do tumor markers. I think it would be different if it were themselves or their wives. There is often no symptoms of liver mets until you are in liver failure. Then it is too late. If my liver mets had been diagnosed earlier when the tumors were smaller I could have gone straight to Femara and avoided Taxotere and the subsequent port insertion, hair loss, pleural effusion, permanent damage/disabillity of my lymphedema arm and a myriad of other side effects. > I also have strong feelings on this issue. It does seem to be the > general concensus in the oncology field to not do routine scans. Some > don't even do tumor markers. The reasoning here is as follows. Giving radiation-based scans to large numbers of healthy patients creates more cancers than it detects. Current tumour markers are very unreliable as a prediction of mets. In many cases the tumour markers do not rise significantly until after the tumours have become symptomatic. So it is not very cost effective, but there is no harm in doing it if you can afford it, it gives you some chance of knowing about the mets a little earlier, for what that's worth. > I think it would be different if it were > themselves or their wives. I hope it would not. The same logic should apply to any of us. They would not want to expose themselves or their wives to unnecessary risk either, and would also want to use their resources efficiently. > There is often no symptoms of liver mets > until you are in liver failure. Then it is too late. [quoted text clipped - 3 lines] > damage/disabillity of my lymphedema arm and a myriad of other side > effects. I don't think in most cases of mets to liver that Femara whenever given would obviate chemotherapy, sooner or later. One can argue the benefits of chemotherapy at all in this situation, for some groups of stage IV patients it buys little more time than it wastes, but early use of chemotherapy has not been shown to improve outcomes. It would have been normal to be on an hormone therapy for five years after surgery anyway. Tim I would certainly buy the argument of not giving uneccessary radiation based scans to large numbers of healthy people. I would put the DCIS, Stage 1 and possibly the stage 2 folks in that category. However at stage 3 a recurrence is expected eventually. I was on Tamoxifen when I was dx'd w/ the liver mets. If they had not been so large and numerous I could have just switched to Femara to slow them down and had a lot better quality of life, whatever is left. That is the goal. Quality not quantity. > Current tumour markers are very unreliable as a prediction of mets. In > many cases the tumour markers do not rise significantly until after the > tumours have become symptomatic. So it is not very cost effective, but > there is no harm in doing it if you can afford it, it gives you some > chance of knowing about the mets a little earlier, for what that's worth. In my experience T-markers often rise long BEFORE anything can be found by the radiology dept. This is very frustrating for all concerned.  Signaturemadiba Maadiba wrote: << In my experience T-markers often rise long BEFORE anything can be found by the radiology dept. This is very frustrating for all concerned.>> I am guessing that can happen both ways. I am wondering, though, if a PET scan was then routinely done, which I am guessing may not be the case, whether or not it might confirm what is going on. I think that both the scan and tests can both be helpful indicators--and that for some types of mets, one test is a better indicator, than the next. The problem with doing these is the expense and that is one of the reasons why it isn't done. > Madiba wrote: << In my experience T-markers often rise long BEFORE > anything can be found by the radiology dept. This is very frustrating for [quoted text clipped - 7 lines] > doing these is the expense and that is one of the reasons why it isn't > done. True, the PET-scan was not and still is not a routine exam. Signaturemadiba Madiba wrote: << True, the PET-scan was not and still is not a routine exam. >> Hopefully, the cost of this technology will come down in price in the very near future and/or new and better methods for identifying active metastatic process will be developed. In addition, perhaps methods used will become more standardized. It is very hard to 'buy' the concept that early treatment of metastases doesn't affect long-term survival when identification is not based on a standardized technique and the methods used are so variable and/or inconsistent. If that, in fact, is true, why bother giving chemo in the first place. The aim is to destroy cells at the micrometastatic level. There must be better ways than the complex, yet still relatively crude methods in use today. I am not sure if 'crude' is the correct word--not sure what is--maybe less than sophisticated, although that term is also quite vague. I have read about one FDA approved blood test that is not used much--the AMAS--that supposedly has both a 95% rate of both false negatives and false positives. There is a small company in Boston that developed it. I had an opportunity to talk with the developer's son--both researchers. From what I gather they tried to maintain the patent for this and thus were rejected by the larger companies and, thus, ignored when they previously turned down offers to sell to some of them. They are now considering negotiation. It will be interesting to see where this goes. I don't have enough of a science or medical background to evaluate, but the test does look interesting. http://www.natural-progesterone-advisory-network.com/amas-test-for-cancer.htm Kaye, With all your treatments - including the herceptin your case in now in reinsurance meaning your HMO is no longer at risk for your care. Most HMO have policies between $50-100k/year so I doubt they are worried about the expense. Alex > Maadiba wrote: << In my experience T-markers often rise long BEFORE anything > can be found [quoted text clipped - 6 lines] > better indicator, than the next. The problem with doing these is the expense > and that is one of the reasons why it isn't done. Alex wrote: << With all your treatments - including the herceptin your case in now in reinsurance meaning your HMO is no longer at risk for your care >> Interesting point, are you suggesting that even if I really was at stage IV although the path report said stage IIb, since I was given Herceptin, they are not liable if anything was missed? How about now--when I am no longer receiving treatment--if they neglect to dx mets in a timely manner should that be what is taking place at this time? I think you have been implying you HMO was driven by reducing costs in your care...by weeding out un needed treatments. But insurance companies have insurance thermselves called reinsurance an HMO sets a limit how much liabity or risk they will assume for each person usually around ($50-100 per year). The point I am trying to make your HMO is not lossing money on you after a certain point..... therefore has nothing to gain but trying to reduce costs on high cost cases since they are not assuming the risk. Alex > Alex wrote: << With all your treatments - including the herceptin your case in > now in [quoted text clipped - 5 lines] > receiving treatment--if they neglect to dx mets in a timely manner should that > be what is taking place at this time? Alex wrote: << I think you have been implying you HMO was driven by reducing costs in your care...by weeding out un needed treatments. >> I don't think that they are signaling me out. I think that is how they do this for everyone. You may remember my post about what my onc. said about how bone mets are differentiated from arthritic activity. He didn't answer my question. Instead he said that it didn't matter in terms of long term survival if one treated for 3 years or waited a year and treated for two. I know of several major errors or limitations of our HMO in several areas--with other people. One acquaintance by their neurosurgeon. She did bring legal action in the prescribed manner and did get a settlement and had her surgery elsewhere. All I want is interpretation that is consistent with actual results as indicated and what is going on to the best of their ability. I do not think our HMO is the only facility in which the concerns I have occur--it happens privately as well. They are doing some things very well and I have no complaints. I just don't write about the positives here since many are not related to breast cancer. They have been fabulous with our girls, and I have had some very good experiences as well--including cancer-related. My greatest concern at this point in time is interpretation of films/scans. We are going to get an outside reading on our own. We could petition that they do that but we are just doing it ourselves at this point. > I don't think that they are signaling me out. I think that is how they do this > for everyone. You may remember my post about what my onc. said about how bone > mets are differentiated from arthritic activity. He didn't answer my question. Maybe he doesn't know and won't admit it. Why don't you include the type of imaging & the conclusions (of your various imagng tests), listed by date, to your post (text above) and crosspost to sci.med.radiology and ask them for an opinion ? J J wrote: << Why don't you include the type of imaging & the conclusions (of your various imagng tests), listed by date, to your post (text above) and crosspost to sci.med.radiology and ask them for an opinion ?>> Thanks for the suggestion. I didn't know there was such a place. Tim wrote<< I don't think in most cases of mets to liver that Femara whenever given would obviate chemotherapy, sooner or later. >> However, latest research indicates if there are only a few liver lesions--up to around 3, then surgical ablation can be done and possibility of cure is still possible. I did have the scans, but my Onc. decided after they were starting to rise to discontinue, them. He seemed to think that if you were unaware of a problem you would be better off. . Quality of life issue. I think if there was something I could do to prevent mets. That I would be better off. He took me off Tamoxifen stateing that my original Onc did not treat me very scientifically. My tumor was slightly er+.....I was stage II B Lobular....I took tamoxifen for about 2 years and have been off for about 9 months..Maybe I should insist on starting again, or something else?...PAt I am calling my PP this week....Pat From Apple Valley, CA >I also have strong feelings on this issue. It does seem to be the >general concensus in the oncology field to not do routine scans. Some [quoted text clipped - 8 lines] > > Pat wrote: << .I took tamoxifen for about 2 years and have been off for about 9 months..Maybe I should insist on starting again, or something else?...PAt I am calling my PP this week....Pat From Apple >> Pat if at all possible you might want to get a 2nd opinion from a larger cancer center, although realize it would be a bit of a distance. I don't think hormonal treatment alone is that unusual depending on whether or not one is pre- or post- menopausal along with one's age. I am guessing that the City of Hope would be the closest although Loma Linda University might be just as close. I can't give a recommendation for either since I am not aware of what is going on that much with either at the moment re. breast cancer. I was also dx'd pathologically at stage IIb lobular but had a lot more going on which warranted higher staging, although that wasn't done until later. |
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