Bringiton
I am sorry for your diagnosis.
Gleason 9 sets you at high risk for metastases and progressive cancer. Cure is difficult in these cases but doctors for young guys do recommend a stronger radical attack on the cancer which may be the suggestion given to you.
I have read about
a few cases of patients in similar situations that did the complete sequentials (RP, RT, HT, etc) just with the intent in debulking. These may provide longer survival periods but at the cost of nasty side effects and poor quality of life.
Most probably your oncologist gives priority to patients’ QoL than to longer period of survivorship, so that he does not recommend the “mother of all therapies”.
You, together with your family, are the ones that must decide and choose what you think it better in your life including finances. Your sex life is at risk and you may not father another child. In my lay opinion as a PCa survivor with experience in dealing with RP plus RT plus HT (but with Gs of 6) and for the many PCa cases I have followed along my 14 years of PCa, I would recommend you to do more investigations on the available choices, find about
their risks and side effects, and then decide in something that is acceptable to you and your wife. Your “… good physical condition…” is important and should be kept.
In any case, the first step is to get a “definite” conclusion of your real present status.
Your comment of “…hormone resistance disease and probably small cell carcinoma…” has no meaning if it is not defined. You are still too early in the HT treatment to judge refractory, and the pathologist report does not comment on “guessing”. This is the only “thing” that tells you about
the type of cancer found and it should be followed. Guessing does not assure you good outcomes. If the report is ambiguous then you need a second opinion on the biopsy slides from specialised laboratories, such as at JH and Bostwick.
There are cancer cells that produce little or no PSA serum at all. In these cases the PSA cannot be used as the marker of progression or for decision making as it is usually done.
The decrease in the last PSA indicates that at least one of your types of cancer cells respond to hormonal manipulations. Refractory is not yet suggestive to exist. This is better diagnosed when the testosterone is low (at castration levels) but the PSA progressively increases. Firmagon is doing its job and you may need to add other HT “components” depending on your status and need. Get a T test for a reliable answer.
Xgeva (denosumab) is a kind of bisphosphonate to prevent bone loss due to cancer. I wonder why it has been recommended if you got a clean bill (no uptake in bone metastasis) from the C11 scan. Have you got any result from a DEXA scan ? (osteoporosis). The negative Pelvic MRI (…no activity…) also does not provide a clue on the lymph nodes status. The doctor’s recommended lymph nodes dissection makes part of the radical surgery. This may be his approach to treat GS9 patients. Other urologists (surgeon) probably would suggest a different protocol.
From the data you share here, the oligometastatic prostate cancer is not diagnosed yet. This is a condition when a fewer number of metastases (cancer tumours) are found through image studies. These examinations are done with “refined” techniques and high resolution Tesla 3 MRI machines in combination with reliable contrast agents. The one in the “market” approved by FDA is the USPIO (ultra-small superparamagnetic iron oxide contrast agent) that is said to identify metastases in lymph nodes. The technique is unique and done in only two places in USA and the Netherlands.
You can find details in the net. Just type USPIO in a net search engine.
Overall, you should look for specialized PCa medical oncologists if you want to get a better unbiased recommendation. Surgery or radiation therapies are the only ways to obtain cure but HT (ADT) can provide long periods of control on the disease. Radiation in confirmed metastases cases is more recommended (than surgery) but in advanced cases this is reserved to latter attacks in spot areas that could be those referred as oligometastases or painful cancer in bone.
At CSN forum you may find few threads on Oligometastatic cancer cases.
Best wishes and luck in your journey.
Baptista
