Got some answers for stage 4 prostate cancer

Posted by beaquilter @beaquilter, 10 hours ago

We had our first Urology Oncologist appointment today at UNC.
Finally have a "plan" after the PSA test started it all 5 weeks ago!
PSA was 251, CT scan showed it spread to lymph nodes, Biopsy showed gleason groups of mostly 5s, PSMA PET scan showed in lungs and bones and lymph nodes near lungs as well.
My husband is 55 and in otherwise good shape, eats right, exercises etc.... has always done that, though now he's super strict about it! No sugar, no carbs, he's thinking about cutting out fish and going completely vegan! (He only ate salmon this last month and an AWESOME "salad" with cilantro, bean sprouts and other things. He's also taking supplements now.
So here's the plan:
ADT injection (Degarelix) soon, either this week or next.
ADT pills (Zytiga with Prednisone)
Later Chemo, 6 sessions 3 weeks apart.
Radiation is maybe later, they are not sure yet, they want him to start with these things first and see how it changes levels.
They did say that what used to be "months left" is now years, that about 50% make it 4 years.
Emotionally we're kinda numb, my husband says he feels apathetic.
He was against the hormones a month ago when it was all new to us, but now we know there's really no other way, Pluvicto will only come into the picture if the cancer is testosterone resistant, so they're guessing 18-24months, but will keep testing everything often.

I'm hoping the ADT injection will make him feel better (pee less often) and no side effects or minimal. Then it'll give him the mental energy to fight! Physically he's in good shape, but mentally he wants to give up already and die.
We have a good church support and friends who are praying for us and checking in, and telling him to fight for himself, for me and for our 4 kids (ages 9-22!)

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

ecurb | @ecurb | 10 hours ago

Jeffmarc is the man to talk to, he ll show up soon. A veteran prostate cancer patient of 14 years.

northoftheborder | @northoftheborder | 7 hours ago

Thank you for the update, and best wishes from everyone here.

Just a thought, from a layperson with no expert knowledge. It might be worth asking them about the modern ARSIs (the -lutamides). I've been on Apalutamide + ADT since 2021 for my stage 4, and I've seen no progression yet. The TITAN study using Apalutamide + ADT as a first-line treatment for metastatic castrate-sensitive prostate cancer (mCSPC) failed to reach median overall survival in its 52.5 month run (over half of participants — some of whom had already had metastatic cancer for a while — were still alive after 4 1/2 years, which is a very promising result).

Zytiga (+ Prednisone to deal with the side-effects) is still a helpful and very common treatment, but it's a bit on the old side by prostate-cancer standards. It could be that it's the best treatment for your husband's case (and I know some oncologists still prefer to stick to the older, pre-TITAN approach of starting on Zytiga first and progressing to the -lutamides only after the metastatic cancer develops castrate resistance), but also, it's something that doctors and insurers sometimes default to just because it's much less expensive (it's out of patent), so it doesn't hurt to ask *why* they chose it at the next appointment, just to make sure.

I also insisted on strong treatment up front. I don't know what would have happened if I hadn't, but I ended up with 60 gy of radiation to my prostate (close to the maximum) and 20 gy to my spine after the tumour was surgically debulked, and the oncologists now think that might have made a big difference for my prognosis. If your husband wants to fight (a hard choice, I know) it's important to tell the oncology team, over and over if needed, that he wants to "throw the kitchen sink" at it. You're both active partners in this, and it's OK to push for what you want. But if not, that's OK too, of course.

surftohealth88 | @surftohealth88 | 4 hours ago

I am new here, also representing my husband. I am still learning about this disease and can not be of much help but I just want to send you best wishes for future treatments and may they be outstandingly successful and bring PC completely under control, /\. I think that perhaps your husband is still in the phase of disbelief and shock and I am sure that fighter in him will be soon awaken. In the meantime maybe you can buy this book , I found it very useful and even inspirational since it gives ideas of how to help combating cancer with vitamins, supplements and nutrition. It is written by doctors and it has chapters that cover cancer prevention as well as what to do during cancer treatments and after. The title of the book is: "How to Prevent and Treat Cancer with Natural Medicine". Sending virtual hug < 3

jeffMar | @jeffmarc | 2 hours ago

Degarelix is The worst way to get ADT. The doctor has to give you a shot in the stomach every month. I think they do this because they make the most money off of it. You can get a Lupron Shot every three months or six months and not have to go back so often. It would be even preferable to get Orgovyx, A pill you take once a day.

You say your Gleason Score is all fives. The Gleason score consist of two number, If both are fives, then you have a Gleason of 10 the highest. Is that what it shows for you just two fives or is it five and four

You need to get genetic testing to find out if I could be a factor. Does anybody else in your family have cancer? You can get it here for free, takes 2 to 3 weeks to get the results and a genetic counselor will call you. The link for the free test is

Prostatecancerpromise.org

Don’t check the box that you want to have your doctor involved or it will greatly delay the test. Certain genetic problems like BRCA2 Have drugs that are specifically helpful for those people.

Don’t believe the numbers they give you for longevity, They are wrong so often it’s incredible. Most doctors won’t even give you that guess.

It does sound like you’re getting the right treatment to start with. Too bad you didn’t start this as a new conversation because more people would probably see it and reply to it.