Asking for info / Venting a bit before tomorrow's appointment

waltk · February 20

I first posted back in December when I was getting scheduled for a biopsy.

Here is my story so far. I should probably just wait for tomorrow's appt with my urologist, but want to go into that appt with some knowledge of what to expect. My wife is the worrier. I am supposed to be the rock. Need to know a few things so I can wrap my head around it before tomorrow. My apologies if this is too much information.

58M. I have had some prostate issues in the past. Two TURPs, 2015 and 2018. I will admit, I never really looked at my PSA in any of my blood work. Too trusting of my docs I guess. VA healthcare.

I know I have prostate cancer. Biopsy results:

Left base - Gleason's 9/10, 1/2 cores, volume 12%. Left mid and left apex, benign tissue.
Right base - 9/10, 2/2 cores, volume 62%. Right mid - 9/10, 2/2, 75%. Right apex - 9/10, 2/2, 75%

Bone scan from 2/14 shows some degenerative issues, from old breaks, both knees, etc. Also shows "diaphyseal uptake in mid left femur" that is "somewhat concerning", as well as "orbital uptake on the left" also "somewhat concerning". Recommendation of “plain film to exclude prosthetic metastatic disease”. Finally, “soft tissue distribution is essentially normal with slight asymmetric left renal uptake as compared to right”.

Had PSMA scan yesterday, won't know those results until I see urologist tomorrow.

Went back through and looked at my PSA over the years. Prior to 2020, just over or under 1.0. Between 2020 and 2023 moved back to upstate NY when my dad passed. No PSA in bloodwork for those years. Moved back to TX in 2023. Labs since then show PSA 5.70 on 11/17/2023, 7.67 on 2/20/2024, 24.3 on 8/13/2024, and 109.30 on 2/18/2025.

Now that I have somewhat educated myself on PSA, I am kind of ticked off that my VA primary care doc did not refer me to urology in 2023. I am very upset that when it went to 24.3 in august 2024, my primary care doc said "well, your PSA is a little elevated, but we already have you going to urology" (because I reported some urinary issues). I really think that she should have told me 24.3 is very high, get the urology consult done right away.

Anyway, I have researched all of these things. Probably too much so, as I am sliding down a slope of negativity. Regardless of what I find out tomorrow morning, I have to hold it together for my wife. She is 67. I am the one that is supposed to be here for her. I would appreciate any input. Be straight, just give me the good, bad, ugly.

I do know that I know I am losing the prostate. Roboknife probably.

Thank you.

icanbeatthis · February 20

stay strong same thing happened to me with primary doctor I went through radiation treatments 1 year ago if anything positive it made me and my wife appreciate one another more you are the ship but she is the anchor best of wishes

Buff1977 · February 20

https://csn.cancer.org/discussion/329027/asking-for-info-venting-a-bit-before-tomorrows-appointment

Walt looks like you have lots of disease, especially on the right half of your prostate. I am guessing you didn't have the old finger check when you had the checkups with the rising PSA. I had a 31 PSA, when I went in with "urinary" issues. After he physically checked the prostate, he gave me this look that told me I had cancer and it wasn't good. I ended up having a biopsy (13 cores, why 13 and not 12, I don't know why) All 13 cores tested positive for PC. My Gleason was 4+5 (9). I also had seminal vessel involvement. Started out with ADT to lower the PSA and then evaluated what I wanted to do to try and beat this crap. I think the insurance companies were just starting to approve the PET scan for use in almost all cases back in 2020 (when I was diagnosed with PC) My PET showed no lymph node or bone metastasis. My team consisting of Urologist, radiation oncologist, and oncologist recommended HDR brachytherapy along with some external radiation. I also continued on the ADT and later added Zytiga. My treatment went as well as i could have hoped for. My guess is you will be given a choice of surgery vs. radiation given your Gleason (is it a 9 or is it a 10 ?) They will probably tell you that your odds are 50-50 with either treatment (life expectancy) Lots of stories on this forum involving surgery vs. radiation. I am guessing again but with that Gleason you may get radiation even if you choose to have it removed. Just my 2cents ! Good Luck !

Buff

centralPA · February 20

Had PSMA scan yesterday, won't know those results until I see urologist tomorrow.

Does your care provider have a patient portal? Or whoever did the PSMA? In all of my scans (and in the last two months I've had two MRIs from two different sites, a PSMA from a 3rd site, and a bone scan from a 4th) I've seen the results before the doctors. For almost all of them, I've seen the results a few hours after the scan.

When I see the doc, I want to basically know what he is going to say, or at least the options he will pick from. I don't want to learn anything new from him, like a PSMA result. I need to digest them over time. I want to show up with questions, not think of them on the fly.

If you don't have access via a portal, then I would do whatever is possible to have them faxed or emailed in advance so you can discuss them, having noodled on them for a while.

Best of luck!

Old Salt · February 20

You have good reason to vent; it appears from your post that at least one of your medical 'advisors' failed and it is a warning to others to become knowledgeable about prostate issues as soon as there is a warning signal.

Considering your current situation, it seems to me that you need more 'advisors' on your team than just a urologist.

Finally, surgery may be out of the question if there is evidence of metastasis.

Wheel · February 20

if surgery is on the table, with your Gleason numbers it would almost likely be with adjuvant Radiation +Hormone treatment after your surgery recovery.

Clevelandguy · February 21

Hi,

Once you get the results of the PET scan it should help formulate your way forward. Since to me this seems fairly involved with other indicators I would get a second opinion from a different set of doctors/hospital network. It sounds like your cancer is aggressive, take the time to get a good diagnosis and treatment path.

Dave 3+4

waltk · February 21

Just a quick update.

Yep, it has metastasized and spread. Into lymph nodes and bones (multiple locations). Being scheduled for additional CT scans early next week to look at some of the specific locations to see if any can be ruled out. Starting hormone therapy immediately after those CT scans (Xtandi and Lupron). Then referral to oncologist. It looks like I can see the oncologist my urologist is referring me to, then also go to the VA (Audie Murphy) for a second opinion. That at least gives me two data points to compare and work from.

That is all I have for right now. Just wanted to put in a quick update. Going to go hold my wife for a bit then start planning.

Thanks to everyone who replied.

centralPA · February 21

Sorry to hear that.

Well, you know what you fighting now, that uncertainty is gone. Get after it, we’ll be here to help, shipmate.

Asking for info / Venting a bit before tomorrow's appointment

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