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Thanks Colleen. We are doing ok. The emotions come in waves. Just when you feel like you've got a handle on it, you get a phone call that sends your heart racing.
Hubs did see another Northwestern urologist who said he really didn't recommend surgery in this situation because of the location of the tumor (bulging out the back side of the prostate, too close to rectum). BOTH urologists said the Decipher test was not needed and shouldn't have been done. 2nd one also said that an ISO PSA was not needed either. That we're probably getting more information than we need. (whatever). He mentioned something about Luminal B. I don't even remember what that is in reference to. The Uro did seem ready to be available to assist with symptoms when they arise. Overall, we liked him much better than the 1st one.
Met last week with MO's assistant (a PA-C). She seems very on top of things. Spoke very candidly about how often their patients have experienced side effects on the 2 meds of choice for him (Orgovyx & Nubeqa). And that a lot depends on where the testosterone level is to start. If it's high, you will suffer more side effects. Also said the Tempus XG (?) does not show any pathogenic mutations from a hereditary standpoint (yippee I hope) and that the remainder of the test will take 3-4 weeks to get results that address his specific cancer.
Hubs was scheduled for colonoscope in Dec 2026, but they said get it done before anything else. So he did that Friday and so far, everything was good. Only 1 polyp removed. Results in 7-10 days.
So, with that done, it was decided to start the 2 meds on Saturday. So far so good. Then we get a phone call today lining him up with the preliminary appts for the hydrogel and fiduciary markers Aug 11; CT simulation on Aug 18 along with MRI on the same day. WHOA! I thought he would take the medications for about a month to reduce the size of tumor BEFORE anything else was scheduled. Am I missing something?
Replies to "Thanks Colleen. We are doing ok. The emotions come in waves. Just when you feel like..."
@dmx I totally am on board with your confusion; there is NO WAY his prostate will shrink that quickly.
The entire treatment protocol is based on the simulation so how accurate can that be when organs and glands are not where they should be??
I am not an oncologist, but I think that even placing the rectal spacer is very ‘iffy’ given the proximity to the rectum; a lot has come out recently regarding spacers; they’re good, but subject to certain conditions and the ability of the operator to get it exactly where it needs to be…hardly an ideal situation in your case.
Since he is on a powerful ADT combo, there is absolutely NO RUSH to do anything - these meds will arrest the cancer, shrink the gland and make any treatment - even surgery - easier and more likely to have a successful outcome. It could take 3-6 months to get the desired shrinkage necessary.
You asked a very intelligent question so right there, you know more than the average person going into this. Keep your head, advocate for what you know to be correct, and don’t allow yourself to be cowed by someone in a white coat!
Phil
@dmx, there's so much information coming at you. Decisions to be made. Appointments to be kept. It's alot. you're doing a great job!
It sounds like you have good guidance from your husband's doctors and by having had a second opinion, you can move forward with the treatment plan with confidence and with doctors with whom you have a good rapport.
I can help you find helpful discussions about what to expect with radiation. Can you remind me, what type of radiation will he be getting? How many sessions?
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@dmx If the ADT has started that is about 25 days before the simulation. A test of PAM50 expression would be required to determine if it was Luminal B. It is associated with multiple cancers (usually breast). More aggressive but also more responsive to ADT. Do not assume your husband has this from the comment. Your MO should be able to tell you with the genetic testing. The 2 drugs (Orgovyx, Nubeqa) usually have fewer side effects than other ADT drugs but are still very powerful. Are you doing MRI photon or proton? If the lymph node is in the pelvic area the beam can be shaped to include it usually at a lower dose (flame was mentioned previously) so it can be treated in same sessions as prostate.