Hi Vinudev,
I would like to welcome you to this board, though of course it's not a board any of us would like to have to know about. :)
I have learned a lot about the areas in which you are interested, and I'll intersperse some comments in green in an excerpt of your post. If you have read my story, you know that I have been on intermittent hormonal blockade - almost entirely triple hormonal blockade in fact, with supporting drugs - as my sole therapy for a challenging case, though with no detectable metastases. I've given several detailed progress reports and updates, if you are interested in such detail. Jim
Hi! folks, I have been reading this board for the last few weeks.You guys are amazing and brave! Its been reassuring to read so many success stories as we start this journey ourselves.
Thank you for your words. One thing prostate cancer can do - for you or for a close family member - is give you a greater appreciation for life! :angel:
This is about my FIL, age 67, who has recently been diagnosed with high grade prostrate cancer that has spread to his bones. Needless to say, the family is in a state of shock and anger but we need to make some decisions soon.
While for most patients prostate cancer is a slow growing disease allowing ample time to react to the diagnosis, to do research, and to start treatment, in your FIL's case acting soon would be wise, as you are aware.
His PSA was at 73.2 at first diagnosis but came down to 59 with some antibiotics.
That leads me to think that some degree of prostatic infection is involved as well as cancer. His response is encouraging, as it indicates the PSA due to cancer is considerably lower than you would have thought at first. However, high Gleason Score cancers, including those of 9, tend to underproduce PSA, making it now as satisfactory an indicator as it is if the Gleason Score is 6, or even 7, sometimes 8, and occasionally 9 or 10.
There are several other markers that can be used to gauge the situation in cases where the PSA is not fully reliable. You really need to have the book "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD (an expert medical oncologist specializing in prostate cancer) - it's highly valuable for all of us, but I think it's indispensable for those facing advanced prostate cancer. While the PSA remains a somewhat useful clue, other markers include PAP (Prostatic Acid Phosphatase, Primer - many pages in the Primer as shown in the index, and p. D22), CEA (Carinoembryonic Antigen, Primer p. D7), NEA (Neuron Specific Enolase, Primer p. D21), CGA (Chromogranin Alpha, Primer p. 63 - half page discussion & p. D7 of the Glossary). The Primer also addresses these briefly elsewhere, especially on page 64 in a chart showing their relative effectiveness whe the Gleason Grade is high ("Figure 30 [in my original edition] "Presence of Tumor Markers Other Than PSA Relates to Gleason Grade." The Primer also discusses the role and importance of comprehensive tumor marker data and analysis on pages 64 - 66. The Prostate Cancer Research Institute (PCRI), a non-profit organization to which Dr. Strum, Dr. Myers, Dr. Sholz, Dr. Lam and others have contributed their expertise, has published some information in this area (and others) that could be helpful. (If you read some of their information to patients, check the dates; some information may be out of date, but overall their information is outstanding.)
He has bone pain in his back and the Bone scan showed multiple hotspots.
In the US, in addition to having some kind of hormonal blockade therapy, he would probably be put on the very powerful bisphosphonate drug Zometa, with supportive calcium and vitamin D3 supplements, the amount of the latter judged based on 25-hydroxy vitamin D test results. While Zometa's main claim to fame is protection of bone mineral density (BMD), it also has remarkable effectiveness in decreasing the rate of growth of bone metastases, or of stabilizing them with no growth, or of reducing them, or even of eliminating them - truly an awesome drug. :D :angel: However, there are some unusual but potential serious side effects (chiefly, osteonecrosis of the jaw - ONJ) that deserve preventive measures or careful management.
The biopsy results came back as cancerous 3/6
That's actually a silver lining to the dark cloud: shows the cancer hasn't just gobbled up everything in its path.
with a gleason score of 4+5.
The Gleason Score is very important; do you know if a pathologist expert in prostate cancer did the reading? Obviously distance and culture may make communication about that difficult. One solution could be to have the biopsy specimens re-read in the US at one of the centers mentioned in the Primer for excellence in pathology, or by another clearly expert center.
I understand from reading here and other sites that he is facing some long odds. His doctors have recommended bilateral orichechtomy+ Casodex over triple hormone therapy. They are unwilling to discuss why they prefer one over the other.
That actually looks like a pretty good recommendation to me, though I would dearly like to have the third element added - Avodart if feasible, but finasteride if not (one of the drugs I'm on, by the way, along with Casodex and Lupron, with Boniva and the statin simvastatin in support). Many doctors even in North America are not yet on board in adding the third class of drugs, and North America is where expertise first has been established in that approach. More below on orchiectomy vs. a drug to reduce testosterone.
It's really regrettable that doctors anywhere will not discuss their reasoning. Perhaps you can find some published studies or medical papers and send them to them.
btw, he is in India and I and my DH(his son) are in NY. So communicating with his docs has not been easy. I am just trying to understand the options to make sure he has all the information needed to make the right choice.
My questions are :
1) Is there a reason to prefer ADT over surgical castration, other than to maintain sexual activity?
There are some pros and cons to consider. Yes, it's not just sexual activity. When possible, research is showing that it is beneficial for men to get a vacation from hormonal blockade; you can't do that after an orchiectomy unless you give a testosterone supplement, which is usually forbidden with a metastatic patient. The benefits of resuming testosterone affect many body systems, including the muscles, bones, mind, etc. However, adverse side effects from surgical removal of the testes can be managed in the same way that such side effects from using the drugs are managed.
A recent Japanese study of types of hormonal blockade at many Japanese centers had some very interesting results. It showed that their orchiectomy plus antiandrogen (Casodex) patients did better than the equivalent drug (like Lupron, Zoladex, etc.) plus antiandrogen patients.
2) If you have made the decision to have surgery yourself or with a family member, why did you prefer orichectomy vs ADT?
I did not have an orchiectomy, but I know something about its advantages. One obvious point is it is far less expensive, especially if it is likely that vacations from the hormonal blockade are unlikely to be practical for the patient, which is often the case for well-advanced patients. A second, often key, advantage is speed of relief, especially if bone mets are causing pain. It can bring rapid relief, often within hours from what I have heard. (By the way, I'm a layman survivor with no enrolled medical education.)
3) In such an advanced case as his, is it better to go for broke and make sure there is no more testosterone produced from the testes?
I don't believe the general case is clear cut yet, but that Japanese study hints that an orchiectomy might be the superior approach.
4) If you or your family member has had orichectomy, are the side effects(like hotflushes, irritability, moodswings) of hormone deprivation permanent?
First, using countermeasures for potential and actual side effects of blockade is very imporant whether the hormone deprivation is permanent or temporary, unless the duration is quite short (just a few months, which would not be your FIL's case). PCRI has published material on that in their newsletter. I posted about some of the main issues in the thread "Disturbing lack of bisphosphonate therapy for bone density, mets," response number 5, on 5/19/2009. One thing to remember is that not all patients get each of the side effects, and for the ones each of us does get, the severity varies a lot. The hot flashes, for instance, are often much less intense and frequent in older men than in younger men.
My understanding is that the side effects we do get can be permanent, unless the therapy is intermittent, but countermeasures can make a great difference. (If intermittent, most of us have full recovery from each effect within a few months.) The Primer has information on the major side effects as seen in a group of patients in the author's large practice that specialized in prostate cancer, their time of onset, their percentage of occurence in patients, and their severity in Table 13, page 153 (original edition). Two other side effects, impotency and a bone density decrease, are discussed on pages 151 and 142-143 respectively. For instance "hot flushes" occur in 1 to 2 months in 48% of patients; 23% have mild flushes (grades 0 and 1), and 19% have more burdensome flushes (grades 2-3). As you can see, 52% do not experience this side effect!
Of the side effects listed, including the other two, I have experienced a degree of decrease in potency, a degree of loss of bone density, perhaps some decrease in mental sharpness but not emotional changes that I am aware of, no bone pain but some joint soreness (mild for me, and in the early months of each round after starting/restarting Lupron), mild gynecomastia, no anemia, hot flashes and sweats that were never a great burden but that are hardly a nuisance during this third round on full therapy, no weakness, and no increase in cholesterol issues. Fairly effective countermeasures are available for each of these, though full relief may be unattainable.
Perhaps the most serious potential threat is a decrease in bone density due mainly to a lack of adequate testosterone. Fortunately, with modern bisphosphonate medications (Fosamax, and now Boniva for me, with associated calcium and vitamin D3 supplements), that threat should no longer be a major concern, rather a minor concern at most.
5) Where can I read more about hormone therapy as it pertains to advanced cases-I got Dr. Myers book and was a little dissapointed he didn't talk about any of his cases(success or otherwise) with bone metastases.
The Primer is excellent. So is the PCRI, including its newsletter PCRI Insights. Personally, I also find the Prostate Forum newsletter that Dr. Myers publishes to be worth its weight in gold. He deliberately wrote his book in easy to grasp, straightforward language. The newsletter also is in that style, but at times it gets a bit more complicated, and he lists the medical research references behind each of the sections of the newsletter. Another source, though typically written in medical jargon, is www.pubmed.gov, a site we can use on this board because it is sponsored by the Government. Often medical papers will use the accepted more formal term for hormonal blockade: "androgen deprivation therapy." As an example, I just went to that site and searched for (without the quotation marks) " prostate cancer AND androgen deprivation therapy " and got 1,780 hits. If you click on the hypertext authors lists, you will get abstracts of the studies for each study that has an abstract.
I am sure I will have many more questions as the days go by!
Thanks in advance
vinudev
Please keep the questions coming. It's especially confusing in the early days. It gets better.
Take care,
Jim :wave:
