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Medical Forum / Diseases and Disorders / Cancer / May 2005oncologist advice needed
Hello, I am 33 years old male with diagnosed Von Hippel Lindau syndrome.So far,I developed retinal hemangioblastoma and pancreatic cysts.During the follow up(I undergo regular MRI's of the brain,spine and abdomen) bone scan was done,and they found abnormal uptake of the radiotracer in carpal and metatarsal bones(I hope I said it right).My CEA was slightly elevated,5.4,and I am a non-smoker(it appears that in non-smokers,upper limit is 3,and for smokers,that value is 5).That bone scan really didn't help,except it made me anxious.Subsequent MRI of the both hands was done,it was normal.Anyone has any idea what should be done(if anything)? > I am 33 years old male with diagnosed Von Hippel Lindau syndrome.So > far,I developed retinal hemangioblastoma and pancreatic cysts.During [quoted text clipped - 6 lines] > was done,it was normal.Anyone has any idea what should be done(if > anything)? Don't get overtested. That carries risk too. CEA is explained here http://www.medicinenet.com/carcinoembryonic_antigen/article.htm I checked my bone scan and your description sounds similar: mild osteoarthritic changes in the wrist/hand area. Actually mine's scattered throughout my body. They tell me osteoarthritis is a "wear and tear" arthritis, gets worse the more we overuse or old bumps, with aging, eventualy, in the right persons, show up as arthritis. Since you say VHL is rare, you can join others here http://www.vhl.org/ Hope this helps, J-not a doctor Thank you very much,J.I really do appreciate your kind answer.I am aware of vhl.org website,thanks for that too.I know about the risks of getting overtested-but,you know,I just have to undergo MRI's(in fact,I don't,but they tell me if I don't it could be possible to overlook some small lesion-and,to be sincere,I get very tired of repeated tests sometimes).I do think this is some kind of arthritis(my father has it,pretty bad case),regarding that bone scan,but one never knows in such a case.I have heard of one good oncologist that has a habit of posting here(I think Steph is the nick),I hoped he would have found the time to give some advice.I still have that hope.Thank you once again for your kindness. > Thank you very much,J.I really do appreciate your kind answer.I am > aware of vhl.org website,thanks for that too.I know about the risks of [quoted text clipped - 7 lines] > time to give some advice.I still have that hope.Thank you once again > for your kindness. J said it all. Tests ordered for no good reason are worse than no tests at all. Thank you for your answer,Steph.If you can think of some advice,I would be grateful. > Thank you for your answer,Steph.If you can think of some advice,I would > be grateful. Don't go down the diagnostic death spiral of slightly-abnormal tests leading to more and more tests.......... > Tests ordered for no good reason are worse than no tests at all. I prefer to think that people are never hurt by extra information, just by their reaction to it. A test result will not hurt, only it's interpretation can. If given the choice, I would always opt for testing. Then armed with the result, I would combine it with clinical observation to decide what (if anything) should be done about it. -- I am not a doctor. >> Tests ordered for no good reason are worse than no tests at all. > > I prefer to think that people are never hurt by > extra information, just by their reaction to it. I see many people hurt by extra, especially erroneous, information. > A test result will not hurt, only it's interpretation can. And any test will be interpreted. > If given the choice, I would always opt for testing. > Then armed with the result, I would combine it with clinical > observation to decide what (if anything) should be done about it. > > -- I am not a doctor. Then you'll be one of those people who has an annual full body scan, I suppose. > I see many people hurt by extra, especially erroneous, information. No, only actions hurt people, not information. Any doctor taking radical care decisions based on only a single inconclusive test doesn't deserve to practice medicine. If a test shows a small abnormality and nothing else is wrong, a proper attitude can be "watch carefully and see". I find this attitude much better than "don't run the rest at all, stay in the dark, and hope nothing is wrong." >> If given the choice, I would always opt for testing. >> Then armed with the result, I would combine it with clinical >> observation to decide what (if anything) should be done about it. >> > Then you'll be one of those people who has an annual full body >scan, I suppose. No. The cost is too high, the current technology is not precice enough (yet), and annual full body CT scans may increase my radiation exposure. With my current finances and risk tolerance, an MRI scan every 5 years would be OK for me. I see absolutely no downside to doing this. Thank you so much for replying.It makes sense what you are talking about,although sometimes going through so many tests can be irritating.I think that Steph has a point-besides,he is a good oncologist.Going through unnecessary exams can drive people mad(literally) sometimes. >> I see many people hurt by extra, especially erroneous, information. > [quoted text clipped - 22 lines] > scan every 5 years would be OK for me. I see absolutely > no downside to doing this. One day you will, I suspect >>> Then you'll be one of those people who has an annual full body >>>scan, I suppose. [quoted text clipped - 8 lines] > > One day you will, I suspect I'm open minded enough to listen. Feel free to tell me what downside there could be, given what I've said previously. (That the results of a single test won't phase me in the absence of any other problems, and that my reaction would be a rational "watchful waiting"). >>>> Then you'll be one of those people who has an annual full body >>>>scan, I suppose. [quoted text clipped - 15 lines] > and that my reaction would be a rational "watchful > waiting"). No test is 100% specific or sensitive. They all have false positives and negatives. If there is a 3mm lung nodule on your scan, what do you do? Watch and wait? Not much point in doing a screening test then. Biopsy? Risky, and again not 100% accurate. Confirmatory tests? Sure, now you get your 30 or 40mSv when they do a CT scan. Over the years, I've seen more than a few healthy people damaged, some severely, by unneccessary procedures chasing some meaningless minor abnormality on a scan. > If there is a 3mm lung nodule on your scan, what do you do? > Watch and wait? Not much point in doing a screening test then. > Biopsy? Risky, and again not 100% accurate. Confirmatory tests? > Sure, now you get your 30 or 40mSv when they do a CT scan. It is difficult to be sure of what I would do, but I propose this approach: If a 3mm nodule seen on MRI is 'inconclusive', then at that point it becomes worth it to take the (very small) risk of addition radition from a CT scan. If the CT scan is inconclusive, I would ask what the risks are of a biopsy. If the risk is small, I'd do it. If the risk is out of proportion to the expected benefit (catching the cancer early), I'd do "watchful waiting". I'd wait 3 months (or whatever time is appropriate), and do an MRI again. If there's no change, then it's nothing to be worried about. If there are now 2 lumps, or it's grown, I guess it means that it is indeed cancer. The advantage is that hopefully I caught it early enough to have surgery fix it, and therefore gain years of life. The downside is that I pay $$$ and sufer 3 or 6 months of stress while I wait to know. For me, the choice is obvious. For others, perhaps less so. I'm a big proponant of treating each patient as an individual, and catering to each person's specific risk tolerance and life choices. Steph, thanks for your opinion,I really do appreciate it.I heard that your professional credentials are truly excellent.However,it seems that I would have to go some new MRI's,as well as abdominal/pelvic CT-I am experiencing some changes in my bowel habits,as well as tickles in my left hand.I really don't like so many tests,but I guess it comes with the teritory,unfortunately.Best wishes. > Steph, > [quoted text clipped - 4 lines] > left hand.I really don't like so many tests,but I guess it comes with > the teritory,unfortunately.Best wishes. I'm not at all anti-test, just anti-pointless test. If you have some new symptoms, they should be investigated. What I think is sad and dangerous is perfectly healthy people taking tests, simple or complex, in the absence of any evidence of benefit. I agree,completely.Only people that have symptoms should visit their doctors(maybe annual physical exam,I think it would do).Going through whole-body CT's is really crazy(I read somewhere,you would know better than me,Steph-that radiation dose received during whole body CT is almost as high as dose received by Hiroshima survivors-I think the source is FDA),and healthy people shouldn't undergo these tests,definitely.Not to mention that sometimes even slightly abnormal test may lead to a whole battery of new tests-only to conclude that nothing is wrong. |
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