Originally Posted by worriedwife44
My husband was diagnosed with Prostate cancer last Feb. he had a PSA 27 and a Gleason 9. We opted for open Radical Protetectomy because he is only 45.
He had surgery in May the after biopsy found it in one node.
He then began Lupron and Casodex and had radiation. His PSA was 0.1 in Dec. and is now risen to 0.6. The urologist wanted to do chemo but the oncologist wants us to go to UCSF to see about clinical trials. Just wondering if anyone has any suggestions?
I'm so sorry you both have had to go through the rough diagnosis, then the surgery, and now the rising PSA after the radiation and hormonal therapy, especially at your young ages. That's quite a load!
I have faced a challenging case but have done very well with just intermittent hormonal blockade (no surgery, no radiation, no cryo, no etc.) plus a supportive program of diet/nutrition/supplements, exercise, stress reduction (not so easy, right?), and bone density medication (Fosamax, later Boniva). That has given me an introduction into the territory you and your husband will be traveling, and I can give you some leads and tips. However, I am a layman as far as medicine is concerned and have had no enrolled medical education.
Was any additional work to estimate the size and spread of the cancer before the surgery or radiation? From your post, it appears there wasn't, and that is not uncommon; many doctors seem to take the approach that they will do the straightforward next step and see how the patient responds as an indicator of the extent of the disease. If you have additional information, that could help: the number of cores taken at biopsy and positive; % cancer for each positive core; location of positive cores; special findings at the biopsy or post surgery pathology such as peripheral neuropathy; and whether the cancer was on one side of the prostate only based on the surgery specimen. Obviously the positive node indicates the cancer had escaped the prostate, but were the surgical margins positive or negative? Were any scans done: bone, CT, Fusion ProstaScint, other? An especially important clue is the velocity of PSA rise in the year before diagnosis, if you know it; do you have the dates and PSA levels before surgery? Any of this that you know could help board members comment from their experience, and all of it is information you and your husband should have handy. Have you obtained copies of all the reports of tests, of doctor's exams, and of the surgery and radiation? Those can be invaluable when consulting experts.
Your comments about the recommendations of the urologist (chemo) and the oncologist (clinical trial) suggest to me that, while both may be fine and dedicated physicians - probably are, they are not very familiar with the ins and outs of treating challenging cases of recurring prostate cancer. Chemo is an option, as is a clinical trial (especially at UCSF), BUT
there are quite a few tactics that could be done short of those approaches, and should be done in my opinion. Please keep in mind that I'm a layman, but I've gone over what may be next for me, which involves some of the same issues facing your husband and same options, and I'm pretty familiar with this territory after talking to and following the advice and teaching of expert medical oncologists for years now.
Just a word about clinical trials: they are, of course, vital for the advancement of medical science, and it's good for all of us when fellow patients enroll in them. On the other hand, researcher/physicians, including researcher/physicians at major institutions, are often hungry for enrollment of additional patients in their trials, and I'm personally convinced that they are not picky about ensuring those patients have exhausted other options that are often helpful. Bottom line: I believe that many of us are enrolled in trials too soon. I think that can cost us years of quality of life and even shorten our life spans. I'm convinced it's particularly true in circumstances like your husbands, where more sophisticated and expert hormonal blockade and other useful therapies could be a better match to his case.
On the other hand, some of the physician researchers at institutions near you have well-deserved international reputations as experts. UCSF and Stanford both have highly sophisticated and advanced cancer imaging technology and expertise. Dr. Eric Small at UCSF is a brilliant researcher/physician treating challenging cases. In fact, he is the leader, as far as I can tell, in researching the medication leukine, which could be an excellent fit for your husband's case. Dr. Small is also a leader in researching the vaccine Provenge; Provenge is not yet approved by the FDA, but this very expensive vaccine ($40,000 - $60,000 for a full course of three infusions) does seem to help at least 20% of patients, a number which increases if chemo is also given. Your husband might be able to get in the trial - possibly getting the vaccine for free (don't know about that), though that trial is near conclusion.
Dr. Small is also involved in other research that may prove of great value to us. He's one of my heroes, though I have never met or heard him talk.
You could research his research by using www.pubmed.gov
(our taxpayer dollars at work, and a site we can use on this site because it is Government sponsored, searching for, for example (omit quotes): " small e [au] AND prostate cancer ". I just did that and got 166 hits!
You can click on the blue hypertext of those that look interesting and get a brief description (abstract) of each paper for which there is an abstract (not all have them, but most do).
But getting back to your husband's situation, here's a brief overview of some tactics that are often used by experts. First, since about 10% of patients do not respond to Lupron but can respond to other drugs in the same class, he could switch to one of the other drugs, such as Zoladex. Second, a third drug, Avodart or finasteride, could be added to the hormonal blockade. (I'm on all three when I'm not taking an "off-therapy" vacation.) A switch could be made from Casodex to one of the other drugs in the class, or to ketoconazole (with hydrocortisone), though that move is probably premature. Transdermal estradiol (estrogen through skin patches, which minimizes cardiovascular risk) could be used. Leukine, mentioned above, could be added; about half of patients respond from what I recall, and I think a higher percentage is responding as expertise improves. There are other options, including simultaneous chemo.
The best book I know that lays a lot of this out is a very easy to read book by Dr. Charles "Snuffy" Myers, "Beating Prostate Cancer: Hormonal Therapy & Diet." He is an expert medical oncologist specializing in prostate cancer in Virginia, and he has the "advantage" of having had a challenging case of prostate cancer himself. Diet/nutrition/supplements, exercise and stress reduction all seem to help, and the book is also strong on the nutritional side.
I hope this post is not too long already, but "bone mineral density" also is important. It appears your husband has not had a bone density workup. This is very
important, but that is often not recognized by doctors who are not experts in challenging cases of prostate cancer. In part it's important because decreased bone density is epidemic among prostate cancer patients, and in part it's important because the bone density drugs can help control or even roll back bone metastases.
It took me the better part of a year to persuade the two fine urologists initially treating me that I needed a BMD assessment, back in 2000. I had a DEXA scan at age 57, and it showed I already had lost significant bone density and had developed "osteopenia," well on the way to osteoporosis. A Quantitative CT scan (QCT) is a better technology for men who have arthritis or calcification of arteries, but your husband is young enough that a DEXA might be fine; it worked for me. (The book "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano, is another very important resource for you and your husband, and has a good section comparing DEXA and QCT scans. It is very strong on explaining sophisticated hormonal blockade.)
If your husband has lost bone density, the doctor will probably want him on a bisphosphonate drug plus calcium and vitamin D3 supplementation. (The Primer has excellent coverage of the bisphosphonate drugs.) The most powerful bisphosphonate, by far, is Zometa, which is administered by infusion frequently for metastatic prostate cancer. It actually has had at least fair success in not only rebuilding bone density but also in minimizing, stabilizing or even reversing and eliminating bone metastases!
In rare cases, a serious jawbone side effect has occurred, known as osteonecrosis of the jaw (ONJ).
Well, this has gotten really long. Are you still with me? I'll close with a thought about contacting Dr. Small's office. Even if it were inconvenient for your husband to hook up with him, his office might be able to recommend a medical oncologist expert in the problems your husband is facing. I know of several in the LA area, but there are probably a number in the Bay Area.
Keep your spirits up!
Enormous progress has been made in prostate cancer in just the past few years, building on decades of advancement. Another reason for reading Dr. Myers' book is that it delivers a whopping dose of optimism!
Good luck to you both and I hope you post here frequently.
Take care and good night,