1. < Prostate Cancer
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New to all of it

Posted by dmx @dmx, Jul 13 2:49pm

Husband (D) 75yrs, active, good health, chronic conditions under control (he is the star patient with all of his doctors). Here we go:

3/2025 PSA: 4.94 (uro did nothing)
5/2026 PSA: 5.6 (uro ordered more tests)
7/2026 PSA: 4.34. (it went down????)

5/2026: MRI PiRADS 5
5/2026: ISO PSA 13.1
5/2026: PSAD 0.25

6/2026: PET Scan, PSMA RADS: 5, Expression 5/5
6/2026: BIOPSIES: 10 cores as follows
A: Adenocarcinoma: 4+5 = 9 in 75% w/perineural invasion
B: Adenocarcinoma: 4+5 = 9 in 25% of sample
C: Adenocarcinoma: 3+5 = 8 in 45% of sample
D: Benign prostatic glands & stroma w/chronic inflammation
E: Benign
F: Adenocarcinoma: 5+4 = 9 in 65% of sample w/perineural invasion
G: focal, high grade intraepithelial neoplasia (HGPIN)
H: Benign
I: Benign
J: Benign

7/2026: Decipher 0.99.

We have 2 Centers of Excellence in Chicago: Northwestern and Univ of Chicago (both are a pain to get to). Also have Northwestern Medicine Cancer Center which also has Proton Center in the suburbs (assume this location is considered part of the Ctr of Excellence).

There really hasn't been a lot of discussion from doctors on how to decide what to do.

Uro said "surgery" without showing us any images whatsoever and said it's up to us. Only said "it's aggressive" and "you don't need genome/genetic testing". We're getting a new Uro.

RO at Proton Ctr suggested Radiation + ADT (start as soon as possible). He was the most thoughtful, explained the most, AND showed us the images for the first time. HE is the one that told us the 3 criteria they use to classify: PSA (10+) Gleason, Clinical T Stage. Husband doesn't fit with PSA <10. But said it's T3b. (our first official stage diagnosis)

After looking at the images again, he was changing his mind, saying, based on the images, he thought traditional radiation would be better because he could "bend the beam" around the prostate with their equipment (it has the MRI guided assist) and try to stave off damage to the rectum. I asked "can you do traditional on the prostate itself and then do the proton on the lymph?" He said I gave him something to think about!

Question: do RO's only do ONE type of radiation no matter what? (I am a little familiar with accelerators.). Why wouldn't you do both types to fit the individual's situation? Lymph glands are not very big so proton makes sense to me.

Saw 2 different MO's. The one at NW was very thorough (although they treat more than just prostate cancer) and recommended ADT medication PLUS the ARPI med. (They all blather on about the proven studies; which is fine.).

The other MO said he'd need radiation after surgery anyway. Neither showed us images (isn't seeing believing?).
The NW MO ordered more tests; including something from Tempus. And that we would have a 1 hr appt with nurse specialist just to go over the medications. The other MO gave us a sample bottle of Orgovyx and a nurse came in the room and said once you start, don't stop.

All said, surgery vs radiation & medications have similar outcome; as all the doctors have said and so does the documentation. We are leaning toward the Radiation + meds.

Got Dr Walsh's book. I'm about halfway through.

Comments? Advice? All are appreciated. Thank you to everyone!
I'm not new to being a caregiver. I cared for my mom who had a rare brain disease, am currently caring for 92yr dad and now the husband.

(just read a 16pg review on "Androgen Receptor Pathway Inhibitors and drug-drug interactions in prostate cancer" (2024). There's a great table in there of the "Actual & Predicted drug-drug interactions with ARPI's and commonly used drugs.)

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

Profile picture for wheel1
wheel1 | @wheel1 | Jul 29 5:27pm
In reply to @jeffmarc "@clevelandguy Since I was 75 I have had 4 surgeries where I had to be put..." + (show)
Profile picture for Jeff Marchi @jeffmarc

@clevelandguy
Since I was 75 I have had 4 surgeries where I had to be put under. I’ve never noticed any long-term effects From anesthesia. Had surgery in June And I was awake and out of recovery room clear headed in a little over an hour after surgery. Had a knee and hip replaced since 75.

Besides that I’ve been put under five times since 75 to do Cardioversion to stop my Afib.

Not sure it’s really a big deal to be put under.

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@jeffmarc
Jeff, you are an animal. I think most over 75 generally want to avoid surgeries. Anyway in regards to Prostate surgery, surgeons don’t want patient’s older than 75, but that is for a combination of reasons, primarily of I think known life expectancy actuarial rates and overall health. Heck 80 year olds run marathon, although I did read once where as soon as this old guy finished he checked out with a heart attack.

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Jeff Marchi | @jeffmarc | Jul 29 6:04pm
In reply to @clevelandguy "@jeffmarc Never said that, what I said was that at 75 with the anesthesia and surgery..." + (show)
Profile picture for clevelandguy @clevelandguy

@jeffmarc Never said that, what I said was that at 75 with the anesthesia and surgery combined it might be easier to do radiation instead. Just my opinion like we all have. It’s up to each individual to decide their course of treatment. The person was asking for comments so I gave them mine. We all comment here based on our own opinions or is yours the only one that matters?

Dave 3+4

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@clevelandguy
You said this “ At 75 I would think that it might be easier to avoid the affects anesthesia could have on your body plus recovering from surgery.”

What effects do you feel anesthesia could have? It puts one to sleep and they wake up. The way you said this, it seemed that you were implying that anesthesia would cause more than just putting somebody asleep and waking up because they were 75 or older. As I said, I’ve had it done multiple times after 75 no additional “effects” Yes, in a small percentage of cases memory issues can happen, but they are temporary in almost all cases.

I would encourage somebody 75 or older to have radiation because they may not be physically able to have surgery, or it could be dangerous for their health. If someone’s in great shape, it’s a tossup.

Most people have to recover from radiation. They have a few different side effects. In some cases, it lasts a lifetime, as we have heard on this forum, and I have heard from people in the online meetings I go to every week. Whether you’re 75 or 55 radiation can be problematic. Two different people who have been contacting me in the last few months, had urinary issues and diarrhea problems during radiation, both around 70.

Just trying to increase information about the 2 options.

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clevelandguy | @clevelandguy | Jul 29 6:22pm
In reply to @jeffmarc "@clevelandguy You said this “ At 75 I would think that it might be easier to..." + (show)
Profile picture for Jeff Marchi @jeffmarc

@clevelandguy
You said this “ At 75 I would think that it might be easier to avoid the affects anesthesia could have on your body plus recovering from surgery.”

What effects do you feel anesthesia could have? It puts one to sleep and they wake up. The way you said this, it seemed that you were implying that anesthesia would cause more than just putting somebody asleep and waking up because they were 75 or older. As I said, I’ve had it done multiple times after 75 no additional “effects” Yes, in a small percentage of cases memory issues can happen, but they are temporary in almost all cases.

I would encourage somebody 75 or older to have radiation because they may not be physically able to have surgery, or it could be dangerous for their health. If someone’s in great shape, it’s a tossup.

Most people have to recover from radiation. They have a few different side effects. In some cases, it lasts a lifetime, as we have heard on this forum, and I have heard from people in the online meetings I go to every week. Whether you’re 75 or 55 radiation can be problematic. Two different people who have been contacting me in the last few months, had urinary issues and diarrhea problems during radiation, both around 70.

Just trying to increase information about the 2 options.

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@jeffmarc
Boy you just won’t let this go. This comes from the National Institute of Health: Anesthesia carries higher risks for older adults due to age-related changes in organ function, slower drug processing, and pre-existing medical conditions. Common complications include postoperative delirium, cognitive dysfunction, and prolonged physical recovery. If you’re 75 you could have problems or not have any. Just saying in my opinion maybe, just maybe radiation could be a safer solution. Why can’t you seem to understand that?

Dave 3+4

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heavyphil | @heavyphil | Jul 30 6:13am
In reply to @wheel1 "@jeffmarc Jeff, you are an animal. I think most over 75 generally want to avoid surgeries...." + (show)
Profile picture for wheel1 @wheel1

@jeffmarc
Jeff, you are an animal. I think most over 75 generally want to avoid surgeries. Anyway in regards to Prostate surgery, surgeons don’t want patient’s older than 75, but that is for a combination of reasons, primarily of I think known life expectancy actuarial rates and overall health. Heck 80 year olds run marathon, although I did read once where as soon as this old guy finished he checked out with a heart attack.

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@wheel1 Old guy? Last summer, our local orthopedic surgeon - who was also a Juilliard piano virtuoso - dropped dead after the last leg of a Triathlon. He was 56!
Phil

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Colleen Young, Connect Director | @colleenyoung | Jul 30 11:06am

Guys, guys, guys. I declare a truce. Please 🙂
Reminder the Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/

4. Respect all members.
- Use respectful language.
- Treat others with respect, even when you disagree.
- Disagreement is okay, but personal attacks are not. Personal attacks will be removed.

It seems to me that you agree on more than you disagree. When considering treatment options, age is a factor. When surgery is a possible option, considering the effects of general anesthesia and recovery can weigh into the choice one may make when comparing surgery vs radiation (if they are treatments offered).

Everyone is different and a person's personal preference along with age should be considered. Here's what Mayo Clinic has to say about surgery and general anesthesia.

"General anesthesia is safe. Most people don't have complications from general anesthesia. This is true even for people with serious health conditions. Your risk of complications is more closely related to the type of procedure you're having and your general physical health.

Older adults or those with serious medical problems are at increased risk of confusion after surgery. They're also at higher risk of pneumonia, stroke or a heart attack after surgery. This is particularly true if they're having more-extensive procedures."

- General anesthesia https://www.mayoclinic.org/tests-procedures/anesthesia/about/pac-20384568

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Colleen Young, Connect Director | @colleenyoung | Jul 30 11:16am
In reply to @dmx "Thanks Colleen. We are doing ok. The emotions come in waves. Just when you feel like..." + (show)
Profile picture for dmx @dmx

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?

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@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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