I was on AS for 2.5 years followed by Dr. Ehdaie and MSK. Biopsy in April showed progression to Unfavorable Intermediate Risk and the need for definitive treatment. MRI and biopsy show no signs of cancer outside the prostate.
Appointments yesterday with Sean McBride, head of Radiation Oncology at MSK as well as Dr. Ehdaie to recommend a treatment plan.
Dr. Ehdaie is a surgeon and recommends surgery. While I am a huge fan of Dr. Ehdaie and have confidence in his expertise, I am not in favor of surgery due to higher GU and ED risks vs. radiation.
Dr. McBride ruled out brachytherapy due to the size of my gland. He thinks I am good candidate for SBRT (MSK Precise) because the disease is confined to the prostate. He also suggests 4 months of ADT because it significantly improves the odds of biochemical recurrence free survival. While I would love to avoid the side effects of ADT, I can't ignore the improved odds for a cure. He says Orgovix daily pills would be better than Lupron because Orgovix has much quicker testosterone recovery after the end of the ADT than Lupron. The faster T recovery makes me feel somewhat better about the short course of ADT. I could wait a month for the results of a Decipher test to determine whether ADT is needed but the Doctor is 80% confident it will indicate higher risk disease and the need for ADT. Therefore, I am leaning toward starting the ADT soon rather than waiting for the Decipher report to begin.
My wife and I are moving to the central coast of California in Oct/Nov and I would like to complete the treatments at MSK before we start our journey west. If I start ADT soon, I can get through the treatments by Labor Day. I would like to speak with an LA (?) based doctor who can provide a second opinion and ultimately monitor and treat me if needed after our move.
Questions for Tall Allen and others:
1. Does it make sense to proceed with Orgovix now rather than wait the extra time for the Decipher test considering our time constraints and more importantly the increased odds of cure.
2. What are your thoughts on Orgovix rather than Lupron?
3. I would like to reach out to either Dr. Kishan at UCLA or Dr. Dorff at City of Hope for the second opinion and post move care. Which of these do you recommend? Is there someone else I should consider?
4. What other questions do you suggest I ask Dr. McBride?
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rosenjpj
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I can't answer your specific questions, but I will say that a mere 4 months of ADT is (to me) a "walk in the park" and nothing to be concerned about. I'm currently 10 months in to a prescribed 2 years of ADT (Eligard 3-month injections and abiraterone+prednisone daily) and, while challenging, I'm convinced it's worthwhile. If you only have 4 months of ADT, you should be able to push through with exercise, then recover any lost muscle mass fairly quickly as your testosterone recovers. In any case, good luck with your treatment!
I don't understand. SBRT is only 5 treatments, so you should be finished by mid-June? Unless, you are taking a few months of Orgovyx pre-SBRT to shrink the prostate (how big is it?) - is that's what's happening? Orgovyx acts quickly, so it only has to be started a couple of weeks prior and continues for about 4 months.
1. I don't see the point of waiting for Decipher, or even getting it. RTOG 0815 showed the importance of getting short term ADT in preventing metastases in all intermediate risk patients (GS 4+3 or GS 3+4), so even if Decipher shows you are at the lower end of risk, I think 4 months is prudent.
2. As Dr McBride says, it acts fast and your testosterone levels will return to normal faster when you stop it. That means that compliance is very important. Missed doses can have a big effect.
3. Dr. Kishan is an RO and he is excellent. I love Dr Dorff, but she is an MO and has a completely different skill set from what you need. That said, I found that I really didn't need the services of a RO after treatment. You will get periodic PSA tests starting after Orgovyx, which you can handle with an email to Dr. McBride. You may find a urologist to be useful -hopefully not - if you have urological issues.
4. Ask Sean if the twins like Tina Turner, or are they too young (3 year olds) for her? Seriously, ask to see the plan when it is done. I think it helps patients understand how precisely the prostate is targeted, and provides a lot of confidence. I know your RO takes great care in contouring the prostate and organs-at-risk, which is important to avoid toxicity. Also, ask him if he intends to give a boost dose to areas of known cancer.
Thanks TA. Prostate gland is 75 cc which is what ruled out brachy. I think he wants me on Orgovyx pre-SBRT to shrink the size of the gland. Timing involves getting the paperwork sorted, ordering the Orgovyx, getting insurance squared away, etc. So if we start Orgovyx at the end of June and go a month, that places us in mid to late July for the SBRT. He plans to have the 5 doses spread over two weeks rather than ten days to mitigate urinary side effects.
Item 1: I was thinking the same way and it's good to have your validation.
Item 2: I am highly motivated to be compliant. Appreciate the warning and will take it to heart.
Item 3: I get your point about not needing an RO after treatment. However, I am interested in a second opinion. Since we're moving to California it makes sense to me to have someone in California for the consult. Based on your comment I would guess that Dr. Kishan would have the skill set (RO) needed to advise on this plan?
Item 4: Good idea to ask Sean to see the plan. Didn't think of that. I will also ask about the boost to known areas of cancer.
Final item. There are two trials I am eligible for. First (NCT05169970) is with Zelefsky investigating SBRT only (no ADT) for Unfavorable Intermediate Risk. Would use Decipher to determine whether radiating the pelvic lymph nodes is needed. Second (NCT04997018) is with Victoria Brennan and it uses MRI Guided SBRT with boost of additional 5 Gy to dominant lesions. Your thoughts on whether either one of these would be worth participating in rather than SBRT and Orgovyx?
It allows Nubeqa to be used if the Decipher score is high. These trials involving Decipher are about whether it should really make a difference in the hormone therapy. I don't like that it uses metastases to determine success/failure. IMO, clinical recurrence should be treated. It is a fine point I'm making- it only means I think you should drop out of the trial to get salvage treatment in the unlikely event that you have a local recurrence.
My feeling about the other two, is that Sean can potentially boost the dose to the dominant intraprostatic lesion (DIL) even without a trial. This will depend, I think, on proximity to the urethra:
I chose Dr. Kishan because I am going to have MR guided SBRT and that is his area of expertise. He validated my plan which was very reassuring. I think he is terrific and recommend him highly if you are thinking of radiation.
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