 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Prostate Cancer / December 2007I'm on the way to the medical oncologist
This is from the cover page of the stack of documents that I'm taking from my GP. It's a note from my Urologist. In April 2007 ... "presented with an elevated PSA of 37.8. In 2003 it was 2.6. He was found to have Gleason 6 and 7 adenocarcinoma of the prostate at the right medial mid gland, right medial base, right lateral mid gland and right lateral base. There is a tumor nodule visible on the ultrasound extending and distorting the bladder neck. This was also biopsied and was Gleason 7 and 90% of the tissue in this area was positive for cancer. A CT and bone scan were negative. I have recommended Lupron therapy followed by IGRT because of the bladder neck involvement..." I had my first one month Lupron shot in April and one every three months since May. I went to weekday IGRT all through July and August for 39 treatments. I have many of the side effects. Loss of libido, loss of a lot of body hair, pain in my shoulders, hot flashes every one hour and ten minutes and at times I get extremely tired for about a day. Also have constipation. I have been able to keep my full time engineering desk job during all of this without any sick days. I walk twenty minutes every morning, ten push-ups and some other exercises daily. I take Caltrate, Selenium, Vitamin E, L-Lysine, Zinc and Ester C every day. When I went in for my August shot, the urologist said that my PSA was .1 and that he wanted me on Lupron for another three years. When I went in for my November shot I asked him if exercise would help the joint pain in my shoulders. He said the joint pain was coincidental and not associated with the Lupron. His only knowledge of side effects were the hot flashes. I remembered countless posts on this forum saying that people like me should be using a medical oncologist, so I decided to change at that point. QUESTIONS: Is the shoulder pain coincidental? Should I push the medical oncologist to stop the Lupron? My hope would be to stop it and monitor my PSA. If it goes up, then go back on it again. Should I push for another CT and bone scan? Any other thoughts? Just asking for opinions and not medical advice. I’d like to go to the Dr. this time fully armed. Thanks, >QUESTIONS: >Is the shoulder pain coincidental? I stopped ADT in August. One of the many problems I had was a sometimes severe pain in my right shoulder. I can't definitely say that it was a SE of the ADT; but, I know of nothing else that might have caused it. The frequency of the shoulder pain has greatly diminished since I stopped ADT. >Should I push the medical oncologist to stop the Lupron? My hope would be to >stop it and monitor my PSA. If it goes up, then go back on it again. That's a tough question. I offer my experience and give no advice. After being on ADT for almost 10 months, I decided to quit because the QOL issues were not worth the possible extension of my life by some unknown period. I'm getting quarterly PSAs. Although I have no plans to re-start ADT, I will leave the option open. I've been living with periodic PSA tests, and the mental/emotional problems that go along with those periodic tests, for a long time. I think I've gotten used to the stress cycle and can deal with it. In the final analysis, it's not a matter of pushing the medical oncologist to stop treatment. That can happen by just saying "No". Any decent physician should support the patients well-informed decision - whatever that decision is. >Should I push for another CT and bone scan? I've no thoughts on this. >Any other thoughts? This problem of balancing the side effects of ADT against the potential benefits is a tough one. But, the problems of deciding to have an RP, instead of radiation, 13 years ago was a tough decision at the time, too. Each of us who faces this situation has to do what we believe is right for our particular situation. I wish you the best in making your decision. If you can get to the point of being comfortable with your decision, in my opinion it's the right decision. >Just asking for opinions and not medical advice. Id like to go to the Dr. >this time fully armed. Always the best plan. Happy Holidays and good luck. Burney >Thanks, RP in 1995 (age 52) RT in 2000 ADT (Casodex) 10/06 - 8/07 burney dot huff at mindspring dot com > QUESTIONS: > Is the shoulder pain coincidental? [quoted text clipped - 5 lines] > this time fully armed. > Thanks, With a starting PSA of close to 40 before starting treatment, the odds are pretty high that some PC cells have already escaped the prostate area and were unaffected by your radiation treatments (there are others on this group who have access to the appropriate tables and can probably give you the exact percentage). Therefore, if you just stop the Lupron, the existing PC will start growing fairly rapidly. You will be hard pressed to find a doctor who won't recommend continuing Lupron for someone with your circumstances. However, if you are interested in cutting edge science, animal studies in 2005 have shown that intermittent ADT followed by high T and low DHT is around 5 times more effective than continual ADT. The only doctor in the U.S. that I am aware of who follows this treatment protocol is Dr. Leibowitz in L.A. You can view his case histories of men with PC treated with high T/ low DHT at: http://www.compassionateoncology.org/pdfs/TRTcase_reports_03_07.pdf Before making any decisions be sure to read the standard PC books and check past posts on this newsgroup. The more you educate yourself, the better. Ed Friedman Hi Ed, The problem with Dr. Bob is that he is not taking any new patients. Not sure if that is because he is selective of who he takes or not. Ron S. -- Message posted using http://www.talkaboutsupport.com/group/alt.support.cancer.prostate/ More information at http://www.talkaboutsupport.com/faq.html > Hi Ed, > The problem with Dr. Bob is that he is not taking any new patients. > Not sure if that is because he is selective of who he takes or not. > > Ron S. Ron, I'm sorry to hear that. Does this include his new partner, Dr. Javadi? I'm assuming that his partner will be following Dr. Bob's exact protocol with consultations in difficult cases. Ed Friedman My brother has recurrent psa after 7 1/2yrs of undetectable with doubling a little over 3 mos. He sent compassionate oncology an email with his info and received a reply from Maria Regina Regalado, admin. assist., stating that they weren't taking new patients and would put him on a waiting list if he wanted to consult in the future. Haven't tried his partner. Ron S. -- Message posted using http://www.talkaboutsupport.com/group/alt.support.cancer.prostate/ More information at http://www.talkaboutsupport.com/faq.html Hi Ed, The problem with Dr. Bob is that he is not taking any new patients. Not sure if that is because he is selective of who he takes or not. Ron S. -- Message posted using http://www.talkaboutsupport.com/group/alt.support.cancer.prostate/ More information at http://www.talkaboutsupport.com/faq.html > QUESTIONS: > Is the shoulder pain coincidental? I had shoulder pain and fretted over it. Turned out to be arthritis. Everytime I have new pain, I think it's a tumor. I haven't had one yet. Having heard stories here, I suspect it's a common phobia. > Should I push the medical oncologist to stop the Lupron? My hope would be > to > stop it and monitor my PSA. If it goes up, then go back on it again. Without a tumor, I would say that is your decision based on age, PSADT, life expectation without cancer, etc. But, with a tumor already identified, unless you have evidence that it is destroyed, I just don't think it's a good idea. However, your onc is definitely the one to ask. > Should I push for another CT and bone scan? If you haven't had one since radiation, I would say you should be considering a CT/PET.  SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04 10/11/07 Non Illegitimi Carborundum On December 21, "Quillback" wrote: (snip) > QUESTIONS: Is the shoulder pain coincidental? I doubt that the uro, having said that the only SE of ADT is hot flushes, is a reliable source of information on such matters. Consulting a med onc is an excellent idea. I doubt that it is coincidental. See the PCRI article on androgen deprivation syndrome (ADS), which clearly states that joint pain can be one of the SEs of ADT: http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html I hope that the uro took steps to treat/prevent the osteoporosis that is an inevitable SE of ADT. > Should I push the medical oncologist to stop the Lupron? My hope > would be to stop it and monitor my PSA. If it goes up, then go back > on it again. No one here should be giving advice on that point. That's for knowledgeable professionals to do. Having said that, I'll say this: It could be a serious error, especially as such SEs can be handled. FWIW, (very little) I did so re: the joints with physical therapy. > Should I push for another CT and bone scan? Annual nuclear bone scans can be very helpful in discovery of bone mets. Ask the med onc. I have my doubts whether it would be fruitful at this time, but I'm not a medic. Good luck. Let us know how it goes. Regards, Steve J "I believe it is a mistake for many urologists to be involved in the endocrine therapy of prostate cancer. Let me state why. Urologists are surgeons and many times surgeons rush to a treatment without really understanding what they are doing. The old joke in medical school was that surgeons do everything and know nothing, that internists know everything and do nothing, that psychiatrists know nothing and do nothing and finally that pathologists know everything and do everything -- but it is too late." -- Stephen B. Strum, MD > This is from the cover page of the stack of documents that I'm taking from my > GP. It's a note from my Urologist. [quoted text clipped - 38 lines] > this time fully armed. > Thanks, If I understand correctly, your urologist suggested radiation therapy, perhaps in an attempt to cure the cancer, and, as if often the case, hormone therapy to supplement the radiation. There is some evidence that HT makes prostate cancer cells more susceptible to destruction by radiation. (The invovlement with the neck of the bladder presumably excluded surgery as an option, even if it had be otherwise a possibility.) You should discuss this all with him to be sure you understand what he is trying to accomplish. If the cancer can be cured by this method, you would not continue the HT indefinitely. On the other hand, your cancer could have already have spread to distant sites. That is more likely because of the high PSA, but it is by no means certain. Only if it becomes clear that the cancer has metastasized to distant sites will it be necessary to have HT indefinitely. Even in that case, when to begin treatment and how to do it depends a lot on the doctor, who should be a medical oncologists specializing in prostate cancer, and of course on the patient. Before you start making decisions, you ahve to understand just where you now stand and what may happen in the future. On one here can advise you about that. I'm not a doctor or any kind of expert, but here are some inexpert thoughts about your questions. > QUESTIONS: > Is the shoulder pain coincidental? I don't know. I had gradually increasing joint pain after using Lupron, but it was in the small joints - fingers and toes, not the big joints. I checked the website at TAP pharmaceuticals and read the "label" information on Lupron. Joint pain is very clearly indicated as a possible side effect of the drug. The longer you are on the drug, the more likely it is. LOTS of patients report it. So it appears to me that your doctor either did not read the label for Lupron, or has forgotten what it said. In my case, I was able to completely overcome the problem with exercise. I built up to massive amounts of hand exercise - exercising the muscles and joints many times during the day and even at night each time I woke up. I did that after reading arthritis books that said that exercise can be highly beneficial for arthritis. So whether your pain is related to the Lupron or to another cause, you might try exercise. I recommend trying very large amounts of light exercise, emphasizing movement and flexibility rather than strength. If and when you can tolerate more, add strength exercises - gradually increasing the difficulty but being careful not to overdo them. As I've said, I'm not a doctor. This advice may not help. But if you are careful not to do too much, it's hard to see how it could hurt. > Should I push the medical oncologist to stop the Lupron? My > hope would be to stop it and monitor my PSA. If it goes up, > then go back on it again. That's a very tough question. I think what your doctor is recommending is probably the consensus view of what to do for a case like yours. I suspect that the great majority of specialists would agree with him. The theory here is that an extended period of androgen deprivation will kill or weaken the cancer cells during the entire period when they are also suffering from the effects of radiation. Letting up the ADT and waiting to use it again if the PSA goes up might, conceivably, allow some tumor cells to recover that would otherwise have died. However, I don't know that anyone has any solid information about how long a period this should be. On the other side of the issue, it is conceivable that your radiation did or will (I'm not certain from your posting as to whether you've had it yet) completely eliminate the cancer, and that continued ADT is not needed and is giving you side effects for nothing. Or alternatively, it's conceivable that the combination of radiation and ADT is not going to save you no matter what, and you might as well get off and take a breather, opting for intermittent ADT. Your doctor appears to be taking the conservative view, trying to maximize your odds of a longer lifespan at some cost of "quality of life". It's a reasonable position. The opposite position might also be reasonable. Unfortunately, there just isn't enough knowledge or fine enough medical tests to determine which of the two reasonable positions is the right one for your case. I _think_, but am not sure, that I'd be inclined to go with the doctor's recommendation for as long as I could, and quit the Lupron only if I hated it so much that I'd be willing to take a chance on dying sooner in order to get off it. It's a very individual decision. > Should I push for another CT and bone scan? I'm no expert, but I would think that a CT and bone scan will be useless at this time. The reason is that, if they didn't show anything before ADT, they certainly won't show it now that you are on ADT. You may well still have cancer. However, it's likely that it's growth is being suppressed by the ADT and that nothing will show unless and until the PSA begins to rise again. CT scans are now thought to have small but measurable risks to the patient. I don't know if that's true of bone scans, but I'd think that any exposure to unnecessary radiation should be avoided. So I'd be inclined against them at this time. > Any other thoughts? You might ask for a consultation with a medical oncologist who is more familiar with the effects of ADT and can give you better advice on how to combat the side effects. Unfortunately, many surgeons and radiation oncologists have relatively little understanding of the biology of hormone therapy. It's just not their specialty. Hot flushes and joint pain can be treated with at least some success and sometimes with complete success. Loss of libido is tougher, but I found, to my great surprise, that I was able to engage in and enjoy sex while on Lupron - I just needed to work (much, much) harder to get started. It might be a good idea for one of your doctors to be monitoring your testosterone level from time to time to be sure that the Lupron is doing what he thinks it's doing. Some patients, for example Steve Kramer, have reported that their T levels were above the recommended level for ADT even though they were on Lupron. It might also be a good idea to monitor other blood values. In my own case, my doctors found seriously elevated liver enzymes indicating dangerous conditions in the liver. They finally concluded (after ruling out everything else that they could) that it was due to the Lupron. When I stopped the Lupron, the problem went away. > Just asking for opinions and not medical advice. I'd like to go to the > Dr. > this time fully armed. > Thanks, Best of luck to you. Alan > ... > You might ask for a consultation with a medical oncologist who is [quoted text clipped - 3 lines] > understanding of the biology of hormone therapy. It's just not > their specialty. Oops. I see that you are seeing a med onc, not a surgeon or rad onc. I'm not sure from your posting whether he's the guy that didn't know about joint pain from Lupron or not. Just to be sure, you might get a copy of the Lupron "label" from the TAP or another website and bring it in with you. Alan |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.