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Medical Forum / Diseases and Disorders / Breast Cancer / June 2004Kaye--why not go down to MD Anderson??
Hello Kaye-- I'm a very occasional poster here (and much more a lurker), and was wondering why you don't go down to MD Anderson in Houston for another evaluation of your case? I think that a large cancer speciality clinic like that would be better able to advise you on your case, espcially it seems like your current doctors can't or won't help you. I went down there 3 years ago for a workup/evaluation when I got some conflicting reports from my yearly mammogram, etc.--and would not hesitate to go back down there again if warranted, even though I no longer have health insurance. Their website has a way that you can *self-refer* yourself to them--and since you're having problems with your doctors, I'd suggest doing that instead of trying to get your doctors to refer you. Just like anything else, however, the squeaky wheel gets the grease, and so you'll have to keep calling their patient referral specialists in order to get an appointment quickly. That said, I had by far the best and most comprehensive breast exam, etc when I when there 3 years ago--and this was in the *eval center*--and not the *breast cancer* clinic per se. Hope this helps-- Jean in VA  Signature"If you are going through hell, keep going." Winston Churchill Jean, That is an excellent suggestion, but I believe Kaye has already sought an expert opinion, but I agree if her case was reviewed by a team perhaps they would have a better insight. Alex > Hello Kaye-- > [quoted text clipped - 28 lines] > > Winston Churchill Alex and Jean suggested getting 2nd opinion at M.D. Anderson which I have thought of and have not entirely ruled out. However, on another grpoup someone recently reported a problem with getting a second opinion there--again 2nd opinions are often only as good as one's insurance. That is not the way it is supposed to be. I was quite surprised. The day before my appt. at UCLA my daughter received a call wondering if I were still with the same non-profit HMO. Hmmmm....At my appointment I briefly reviewed some of what had transpired re. what was going on where I was being treated. However, I did not say we still had that insurance nor that we were going through them. I had told them we were paying privately. We could have requested our HMO cover a second opinion but didn't-- were just doing it on our own. However, the report that was written up stated in two places that I was being treated through our HMO. Basically, the oncologist did not want to even see us unless I had already been dx'd with a recurrence and asked us such on several occasions during the appointment. Someone else wrote about a similar experience that they had at M.D. Anderson. I am not sure that the difficulty I am experiencing is unique to me or is becoming more common place amongst those with breast cancer--because of the vast numbers and expense to treat. The rationale behind this is the adage that it doesn't matter in terms of overall survival if recurrence is treated early. Latest research contradicts such but that policy hasn't been changed--at least not in the U.S. My concern is that I have a local recurrence-- in contralateral and same side axillary nodes as well as supraclavicular nodes based on symptoms and suggestion of scans. Again, I question the quality of the imaging. If I am at all correct the only reason I could see would be because they have not yet conformed to new staging recommendations for treatment. Although regional recurrence is serious, if 'right' treatment is given, cure is still possible. However, 'right' treatment (depending on extent, location, etc.) could be quite difficult and costly. However, if the delay dx'ing regional problem, eventually there should be a systemic problem which they have protocol in place for treatment. Kaye, No matter what the insurance is - it can be a hassle. When I was diagnosed I had 2 insurances at the time both - Point of Service meaning no referrals and could go anywhere I choose to go, and was still asked ( and NOT in a very nice way either).how I was going to pay my bill. Local reccurances is treatable and curable but would be rare with the amount of surgery you had. Alex Alex wrote: << Local reccurances is treatable and curable but would be rare with the amount of surgery you had. >><BR><BR> I know but symptoms are possibly suggestive of such, particularly the worsening lymphedema arm (with on-going, continual lymphedema treatment), the scans which suggest the possibility of supraclavicular node involvement, the ache in upper arm (non malignant side) along with night pain in that shoulder, and ache in armpit---left (non-malignant side) since last August and in malignant side for past 2 months. Surgery was 38 months ago. Jean Barto wrote: << why you don't go down to MD Anderson in Houston for another evaluation of your case? I think that a large cancer speciality clinic like that would be better able to advise you on your case, espcially it seems like your current doctors can't or won't help you. >> I mentioned in a previous post another poster from diff. groups experience getting a second opinion. The same thing has happened to me twice now. In addition, I have been told that they don't want to see me until there is documented evidence of recurrence. The most recent dr. I saw--breast specialist told me that in my case he feels pretty sure that there is something going on but again until that is documented and location is listed, doesn't even want to see me. He saw my worsening arm and confirmed that is most probably due to recurrence. However, he will not offer any advice until it is on record. They don't care about the weird way the tests were done to minimize showing such adequately. And, even if there is a local/regional recurrence, if a documented recurrence is reported elsewhere first, that will be the focus of the treatment. It doesn't matter that the other is/was obvious. There is something very 'wrong' with this system. I am guessing that the deciding factor is determined by "managed care." It doesn't matter what reality indicates, what matters is where they place you in their pre-ordained system. Sigh...SIGH...and dried up tears... |
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