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Medical Forum / Diseases and Disorders / Breast Cancer / January 2004J....positive visit...
To J and all who made suggestions re. my next course of action. I hope this is at least partially coherent--yawn--took an Ativan for an MRI (and then realized I probably should have taken only half) that I didn't have. I was in the machine--and they did the procedure twice but tech said that the neck coil wasn't working, I will have to have the appt. rescheduled. That gave me a bit of extra time before heading off to an appt with the rheumatologist to whom my internist (the one who doesn't want to discuss or consider if any of the symptoms I am having are b.c related--same one). I was hesitant about dealing with yet another dr to whom I thought I was being referred because the MRI of my shoulder said that what was likely was rheumatoid arthritis. The orthopedist who sent me for that didn't agree. He thought what was going on was cervical/neck related. When I asked him if he was going to tell that to my regular dr (the one who referred me to him) his response was 'no.' So, I am guessing my regular dr. referred me to rheumatology based on that erroneous or unconfirmed report. Fortunately that was not the case. The dr., a relatively young call who had done her training at Harvard, was a really 'with it' and together physician with lots of common sense. My mouth almost dropped open when she suggested a proactive approach in regard to my concerns--finding out whether they were or weren't cancer-related was what she thought was the top priority. Thank you. In fact she recommended an MRI of the arm and shoulder whichw ould include the brachial plexus and humerous bone. I didn't even have to suggest it. My husband and put in a call to my oncologist and regular dr. The latter's nurse called back yesterday and said it wasn't indicated. My oncologist has not yet called back. However, my ob-gyn said she was going to call him after I saw her a couple of weeks ago. The area on my non-lymphedema upper chest by armpit seems swollen--more so than lymphedema side--and I had experienced discomfort in the under arm (non-lymphedema side) off and on. She ordered an MRI which would cover the humerous and brachial plexus area. I didn't have to get into any discussion re how my symptoms didn't correspond with arthritis but do correspond enough with bone mets to the shoulder that that she be ruled out. I am glad this is finally going to get done and that I wasn't placed in a patronizing position and my concerns were not at all 'dissed' (in this regard). So the need to postpone the MRI may have been a blessing in disguise. Hopefully both can be done together within the next week or so. > The dr., a relatively young call who had done her training at Harvard, was a > really 'with it' and together physician with lots of common sense. My mouth [quoted text clipped - 9 lines] > I am glad this is finally going to get done and that I wasn't placed in a > patronizing position and my concerns were not at all 'dissed' (in this regard). Me too Kaye, me too, hope you can get a definitive on all this finally. Your tests and doctors make my head spin... <smile> I do read all the posts (concerned my "name in lights" will put others off, hope not) Hang in there and I'll be watching for more news Hugs Kaye J << Me too Kaye, me too, hope you can get a definitive on all this finally. Your tests and doctors make my head spin... <smile> I do read all the posts (concerned my "name in lights" will put others off, hope not) Hang in there and I'll be watching for more news Hugs Kaye J Thanks, J. What I don't understand is why one of the dr's I seen didn't respond and take this very simple positive action in the first place. It would have saved a great deal of man-power and thus would have been more cost-effect, and then also saved all the emotional baggage this has involved. It was like she 'got' it. I was all set to question the rheumatoid arthritis suggestion mentioned on the MRI scan of the shoulder--but didn't have to say a word. In fact, she was right to the point--saying that under the circumstances I was most at risk for bone mets more than anything else at this point. What planet were all those other dr's and therapists on??? Now, I don't think that my story is all that unique as far as cancer treatment issues. I am just one who was taught to question and try to look at things from a logical perspective. I wonder how many others are not dx'd promptly and forced to go on a wild goose chase? I think the doctor said you are at most at risk for bone mets since that is the most common area for mets with breast cancer. So ....you had the blood test and it was fine, you are going to have the shoudler MRI....what other tests do you feel you need done? What would make you feel secure ? I can't help the think if you were being followed at an Academic Medical Center your care would be handled very differently. That your questions would have been answered. Alex > << Me too Kaye, me too, hope you can get a definitive on all this finally. > Your tests and doctors make my head spin... <smile> [quoted text clipped - 19 lines] > from a logical perspective. I wonder how many others are not dx'd promptly and > forced to go on a wild goose chase? Alex wrote: << I think the doctor said you are at most at risk for bone mets since that is the most common area for mets with breast cancer >> Supposedly I am at high risks for mets, period because of the degree of lymph node involvement but just as much because of the extensive lymphovascular invasion and the aggressive of the different types of b.c. found. In addition, because it was lobular, in addition to greater risk for bone involvement I am also at high risk for mets to the retroperitoneum/retroperitoneal, gastric, and pelvic areas. << What would make you feel secure ? >> I've thought about that. Here are the ones that pop into mind immediately: --If they went back and did the 'right' test for the liver to differentiate whether what was there was or wasn't an hemangioma if that is at all possible. --If the scans were compared with each other, rather than with only the most recent one --if the scans were compared by someone who was more specialized in different types of breast cancer --if the specialists consulted and coordinated their findings --and if I weren't the one who was discovering all the inconsistencies ;-) Kaye I hate to say this to you....if you went to an Academic Medical Center such as UPENN, Sloan Kettering, Dan Farber( breast center clinic) all these questions would be addressed and answered instead of getting the run around. The HMO is obligated to provide you care appropriate for your medical condition. It sounds like the staff at the HMO although high quality do not have the exposure to deal with a complex case as yours. You have the right to ask the HMO to allow you to seek the right care for you. If they refuse you they per NCQA have to have your case reviewed by an outside consultant in the breast cancer field. If they deny you this access ...you have to think long and hard a. Are you over reacting and need to deal with this situation by seeking alternative methods ...such as paying out of pocket. or.buying a commercial indemnity plan seek some counseling to deal with this situation. I don't think you fractionated - patient driven care is giving you the care you can live with. > Alex wrote: << I think the doctor said you are at most at risk for bone mets > since that is [quoted text clipped - 12 lines] > --If they went back and did the 'right' test for the liver to differentiate > whether what was there was or wasn't an hemangioma if that is at all possible. I f you see an academic medical specialist they would know where or not to pursue this issue based on the volume of patients who had similar issues > --If the scans were compared with each other, rather than with only the most > recent one > --if the scans were compared by someone who was more specialized in different > types of breast cancer Again this would happen in an Academic Medical Center > --if the specialists consulted and coordinated their findings > --and if I weren't the one who was discovering all the inconsistencies ;-) Most Academic Medical institutions have electronic medical record so everybody sees the same information. Some of the inconsistencies are minor are you have to let them go....and trust the care you are receiving. Also medical students are part of your care and often dig deep and find things since they are graded on how throughly your case is reviewed. Just my thoughts....Alex Alex wrote: << if you went to an Academic Medical Center such as UPENN, Sloan Kettering, Dan Farber( breast center clinic) all these questions would be addressed and answered instead of getting the run around. >> Well, I have seen two ot the top oncologists at UCLA and that's where they did the PET scan (but done and read by 'fellow' student. I am willing to go almost anywhere if I can be guaranteed that they will have the time to weed through what is/isn't important and not make some lame comparison between to obscure scans. I have paid out-of-pocket for many a private consultation. It isn't exactly 'easy' financially either. I would go through and petition the HMO but again want to be guaranteed the most 'honest' of opinions--not one that coincides with current insurance coverage benefits. << I don't think you fractionated - patient driven care is giving you the care you can live with.>> What we are doing now is having the scans re-read, privately, outside the HMO. "I would go through and petition the HMO but > again want to be guaranteed the most 'honest' of opinions--not one that > coincides with current insurance coverage benefits. The HMO has to pay an outside consultant to render his opinion...that being said your request would be reflected to your policy. It sounds like you have gone through this process before. It is great that you have seen 2 ULCA oncologists...did they have an opinion regarding your care? Pet Scan too ..it sounds like you have had all most every test in the book! Alex Alex wrote: << It sounds like you have gone through this process before. It is great that you have seen 2 ULCA oncologists...did they have an opinion regarding your care? No, I have never gone through the process of petitioning our HMO but probably should have. I did see 2 UCLA oncolcogists and learned that the value of a second opinion is only as good as your insurance. The first one I saw--supposedly one of the top--spent half the time going through my records and then coming back and talking--presenting his agenda, not leaving any time open for questions. Basically he said that he didn't necessarily disagree with the treatment I was getting but at the same time let me know that was not what he would have necessarily used. Then , he wouldn't tell us what he would have done. He was quite patronizing in his approach. He also let us know that our HMO should be giving me the Neupogen differently than they way they were doing it. They changed for awhile and then went back to their way. I did see him later again--almost a year later and he was better, but still non-commital. Then I saw a 2nd onc there--one of the developers of Herceptin. My appt. with him was somewhat 'stilted'--or at least it felt that way. I saw him at a time when I thought I needed more chemo and was concerned about future termination of Herceptin. He was very rigid--and told me Herceptin just for one year. I have since learned of someone else who switched to him and he agreed to allow her to stay on Herceptin (for the rest of her life). She, too, had been told -- one year only of Herceptin --until she switched insurances... > Alex wrote: > << I don't think you fractionated - patient driven care > is giving you the care you can live with.>> > > What we are doing now is having the scans re-read, privately, outside the HMO. Ah, I wondered what happened about that. Maybe the answers will come from there? J J wrote: ...Kaye wrote: << > What we are doing now is having the scans re-read, privately, outside the HMO. Ah, I wondered what happened about that. Maybe the answers will come from there? J My husband brought her the scans last week. Originally we didn't give her the reports--said she didn't want them. I later talked to her briefly to verify --- but before she looked at anything and said that having the reports would make things alot easier. I shouldn't have said anything, I guess--hope I didn't sabotage my chances to get an unbiased opinion. Meanwhile tonight again, as in almost every night, my shoulder aches... Hi J, thanks for your response. I was wondering whether or not you were a 'he' or a 'she'-- just curious ;-) and what type of work, if any at this time you do or have done professionally. And what type of science/medical training, if any, you have received, Hope you don't mind the questions. And while I'm at it--what country/state do you live in? Again, just curious, and do appreciate your thoughts. Thanks in advance > Hi J, thanks for your response. I was wondering whether or not you were a 'he' > or a 'she'-- just curious ;-) and what type of work, if any at this time you > do or have done professionally. And what type of science/medical training, if > any, you have received, Hope you don't mind the questions. And while I'm at > it--what country/state do you live in? Again, just curious, and do appreciate > your thoughts. Thanks in advance Yes, J I would like to know a bit about you, we know you are not an expert, cancer survivor ( but have been effected by cancer through family members) but what is your reason for being interested in this group. Alex > Hi J, thanks for your response. I was wondering whether or not you were a 'he' > or a 'she'-- just curious ;-) and what type of work, if any at this time you > do or have done professionally. And what type of science/medical training, if > any, you have received, Hope you don't mind the questions. And while I'm at > it--what country/state do you live in? Again, just curious, and do appreciate > your thoughts. Thanks in advance 1) prefer to keep readers guessing 2) nothng of interest except my mother was a nurse and I read all her books, almost became a veterinarian (and have been told by some teachers and many veterinarians that I would have made a good one too, but unfortunately I have allergies to some animals so vet's assistant pays less unless a person wants to be a meat inspector. I was interested in helping live animals not poking holes in dead meat, so I changed careers), have read every book about diseases I could get my hands on when time permitted (before the internet), excelled in biology and pretty good at anatomy and chemistry (or was) 3) Canada 4) my interest here: learning and once in a while answering questions. If I find something here that would help on a.s.c. then I take it over there (and vice versa). Every time, I decide I will no longer post (and just lurk) someone or something draws me back, like my name in headlights "J" 5) there's 2 good reasons why I change my "munged" e-mail address but I forget why :-) Hope that answers your questions. To summarize, I cannot (or do not want to say) remember why I started reading here, but have grown to care about you all. Maybe I can go back to lurking? Thanks for your interest Alex and Kaye J J wrote: << To summarize, I cannot (or do not want to say) remember why I started reading here, but have grown to care about you all.>> s'okay, but what have you done professionally? Your support and assistance are very much appreciated. No, J, please don't go back to lurking. Your posts are interesting and informative. Nice to see another Canadian here, I was thinking I must be the only one. Anyway, it's obvious that you don't want us prying into your life, and that's okay. That's one of the nice things about newsgroups like this; we can reveal as much or as little as we want. Marianne > No, J, please don't go back to lurking. Your posts are interesting and > informative. Nice to see another Canadian here, I was thinking I must be the > only one. Hello Marianne, I had a longer reply going yesterday a.m. but my computer "kakked" and I lost it all. (awful keyboard, hit the wrong key combination..if only I knew which was the "wrong" one. I know what it feels like on most newsgroups. There's usually a much larger ratio of Americans to any other country, so we feel outnumbered ? and some of their tests or protocols (or even medication names) seem somewhat foreign. I ran some searches in the Google archives and as best I can tell, there's 3 of us right now, on this newsgroup, from Canada. You replied to one just a while back. There's been 6 or 7 Canadian posters here over the past 8 or 9 months alone, one knows me from another newsgroup. So there's no telling unless a very detailled search in the archives, exactly how many posters from Canada have been through what you are going through and might be out there lurking unless they only check in once in a while and watch for specific subject lines. I might, in some way, be intimidating them from posting. I have strong opinions about things and sometimes that puts posters off. So I was thinking that if I say that I'm going away, AND you post a "Roll Call - Canadians" post, you might get lots of lurkers to come out. And if the others want to join in, all they have to do is reply and change the subject line to "UK" or "USA" or "Australia" or whatever country they are from. As best I can tell the last roll call here was early october and continued through early November so maybe one's due anyway? Who knows, Catharine H might be available before this one ended. (I sure hope so, I watch for her posts too)...hoping she's okay and establishing well after her move. Another thought that came to mind was that some of them might be here http://forum.bcans.net/index.cgi Actually the lady who posted that, didn't seem to mind posting her e-mail and offer to be of help, so here's the post <http://groups.google.com/groups?q=+Canada+OR+Brunswick+OR+Alberta+OR+Calgary+OR+ Winnipeg+OR+manitoba+OR+Scotia+group:alt.support.cancer.breast&start=40&hl=en&lr =&ie=UTF-8&scoring=d&as_drrb=b&as_mind=12&as_minm=1&as_miny=2003&as_maxd=13&as_m axm=1&as_maxy=2004&selm=3e694ad6_4%40corp-news.newsgroups.com&rnum=48> Not that I'm encouraging you to leave here, but I'm offering 3 different ways to connect with other Canadian breast cancer persons. Oh and thank you very much for your kind words. All my best, J J wrote: << Your tests and doctors make my head spin... <smile> Mine, too! :-) << Hang in there and I'll be watching for more news>> I'm trying--just went for a 3 hour hike in the local mountains with my 3-day team. By the time we got back I was surprised at how warm it was--72 degrees F at 11:00 in the morning...I heard about the temperatures on the East Coast--Boston? Keep warm! Kaye, I just wanted to say that my thoughts are with you as you go through all these medical visits. Having spent a goodly amount of time in the hospital myself undergoing more investigations and invasions than I care to list, your situation is particularly touching. I pray that the result will be some silly, easily fixable thing. Take care. ...lisa Lisa wrote<< I just wanted to say that my thoughts are with you as you go through all these medical visits. >> Thanks so much for your support .<< I pray that the result will be some silly, easily fixable thing. I do too. I feel better knowing that one blood test, AMAS, was notmal but am uneasy about my left shoulder and upper left arm--which have hurt daily, primarily at night, for the past 5 mos and are worsening in terms of the discomfort. Could it be arthritis? Have you seen a orthopod ? With your MS have you taken steriods? If you have you are high risk for your joints to where down. Alex > Lisa wrote<< I just wanted to say that my thoughts are with you as you go > through all these [quoted text clipped - 9 lines] > primarily at night, for the past 5 mos and are worsening in terms of the > discomfort. Alex wrote << Could it be arthritis? Have you seen a orthopod ? With your MS have you taken steriods? If you have you are high risk for your joints to where down.>> Yes, I saw the orthopedist. Although the radiologist report stated arthritic activity -- possible rheumatoid arthritis, the orthopedist doesn't think it is due to arthritis. I do have normal arthritic wear for my age as most everyone does. The orthopedist thinks that it is neck related. I asked the orthopedist if he was going to tell my regular dr (who referred me to the orthopedist). He said, "no." I guess they just don't confer. My regular dr. then made the referral to the rheumatologist whom I saw this past Thursday. She is the only one whom I think is making any sense. She ordered the MRI of the upper chest and already have an MRI order for the cervical spine--was unable to have that done on Thursday cause the machine was down. I have not had steroids in over 2 years--and only had that for the chemo. I am not on steroids for M.S.--only interferon beta (Beta Seron). My ob-gyn said the area near the lymph nodes on that side is enlarged. I did have feelings--but only briefly of numbness on a patch of forearm and a couple of fingers have gone numb. That might be brachio-plexis-related. I am not even sure what the brachio-plexis is. I really don't care--just want the optimal and most appropriate treatment that will enable me to reach my goal--long-term remission, and possible cure, if there is ever a chance for that... Nobody is cured from invasive breast cancer - the "cure" is not available yet in 2004....yet most live and productive lives and die from other diseases other than cancer. The short duration you had steriods with chemo is not enough to cause bone destruction. Three years is a mile stone ! Every year out is year that makes your overall survivior longer. Alex > Alex wrote << Could it be arthritis? Have you seen a orthopod ? > With your MS have you taken steriods? If you have you are high risk for your [quoted text clipped - 20 lines] > goal--long-term remission, and possible cure, if there is ever a chance for > that... J wrote: << The short duration you had steriods with chemo is not enough to cause bone destruction. I am well aware of that--and never suggested such--was just responding to a question asked of me about it. |
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