Joining the Reluctant Brotherhood (and Update on Progress)

Posted by jcbagley @jcbagley, Nov 22, 2024

Well, I've unfortunately had to join you all out here recently - but thank you SO much for providing such valuable conversations so far for a 'newby.' Here's a brief bit of info about me with my question at the end. I'm Jay and 71 years old and fairly healthy considering my age. I work hard at diet and exercise and want to stay healthy. I went to my Urologist after a referral from my GP in August this year. My PSA, which I watched regularly, went from 2.7 in October of 2022 to 9.93 in August of 2024. While I was waiting for the upcoming appointment date PSA went to 12.12 by September '24. Urologist said we need to do biopsy. Scheduled that for October (late - took that long to have an open appt time). PSA was 17.8 when I had biopsy. I had a PSA test today to have a PSA number for next week's scan date. Results of biopsy came back with:
7 of 12 samples cancerous with Gleason Scores as follows:
9 - 40% Grade 5 (4 + 5)
8 - 80% Grade 4
8 - 15% Grade 4
8 - less than 5% Grade 1
6 - 25% Grade 1
6 - 20% Grade 1
6 - 40% Grade 1
I have a PSMA scheduled for next week (took that long for that date to arrive) and have a follow-up appointment with the Urologist to talk about treatment options in mid December. That's the earliest available there too. I live in a rural area of Western Colorado and am frustrated about the length of time it seems to take to get appointments. I've read LOTS of information on my own so far, most of which I discovered though this board so thank you so much for all of that. Here's my assumptions/thinking of what I do next based on reading all this information here. I should probably get a second opinion as I feel like my PC is high risk and spreading fast since my PSA number has increased so rapidly in a very short period of time. I probably should go to a Center of Excellence place for help. Looks like I'll need surgery or radiation of some kind if the cancer is only in the prostate or surgery AND radiation if it is metastasized. I'll know if it is outside the prostate after next week's scan I think. I should collect the name/type of machine the PSMA Pet scan is done with AND the exact name of the agent used for the scan. I haven't been able to think much beyond this point since it's all so new and I'm really spending too much time worrying right now. 🙂 My question is basically if there's any other guidance, ideas, input from all about my understanding so far? I really appreciate and value your support. Jay

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

Colleen Young, Connect Director | @colleenyoung | Nov 29, 2024

In reply to @jcbagley "Jeff, thanks you SO much for this reply. You’ve hit on exactly what I was thinking..." + (show)

@jcbagley, just checking in. Any updates? How are you doing?

jcbagley | @jcbagley | Nov 29, 2024

In reply to @colleenyoung "@jcbagley, just checking in. Any updates? How are you doing?" + (show)

Thanks for checking in Colleen. Next week gonna post an update hopefully. Got results, it’s in lymph nodes but haven’t seen doc yet. Rural area, real slow in moving forward. Registered just today at Mayo in AZ getting ready for connection there soon. Thanks so much for your support.

jcbagley | @jcbagley | Dec 13, 2024

This is my update after posting my initial post about joining the brotherhood (reluctantly) and to discuss my PSMA results related to one lymph node lighting up slightly.
My local urologist said the lymph node is most likely cancer but they wouldn’t know for sure until they did pathology on the removed prostate. I suspected I would probably end up with surgery but was more concerned about the possibility of cancer elsewhere.
Thanks to the wonderful support and information I’ve received here I was able to get enough good info to ask the right questions on how I move forward. The local urologist doesn’t have enough experience for my liking. I finalized my appointment with the Mayo Clinic in Phoenix today. It’s next week. I’ve also scheduled an oncologist at Mayo for consult if needed for a little bit after next weeks appt. Today is the first day for a while I’ve felt like have started movement in the right direction. Makes me happy. Thanks Colleen and all for being there.

Jay

survivor5280 | @survivor5280 | Dec 13, 2024

In reply to @jcbagley "This is my update after posting my initial post about joining the brotherhood (reluctantly) and to..." + (show)

Good for you for being your own advocate! I did the same. I was lucky to have a world class urologist that I'd used for a previous cancer, but even with that I still spoke to scores of doctors before I settled on my decision. We can feel well knowing that we might make a bad decision but that it is our own and not dictated by anyone else. I hope the very best outcome for you - and for me, as I'm getting it out in 5 weeks.

michaelcharles | @michaelcharles | Dec 14, 2024

In reply to @jcbagley "This is my update after posting my initial post about joining the brotherhood (reluctantly) and to..." + (show)

Sounds like you are on a good track.
Best wishes

chipe | @chipe | Dec 14, 2024

In reply to @jcbagley "This is my update after posting my initial post about joining the brotherhood (reluctantly) and to..." + (show)

You are always your own best advocate! Congratulations, you have now put your health decisions into the best hands possible, your own. 🙂

bens1 | @bens1 | Dec 15, 2024

In reply to @jcbagley "This is my update after posting my initial post about joining the brotherhood (reluctantly) and to..." + (show)

Jay: That’s great that you are starting to get your hands around the issues. Were you able to get the decipher test? As you have probably read, it does make a difference in your doctors recommendations as to what treatments you receive.

Colleen Young, Connect Director | @colleenyoung | Dec 26, 2024

In reply to @jcbagley "This is my update after posting my initial post about joining the brotherhood (reluctantly) and to..." + (show)

Jay, how did the appointment go? How are you doing?

jcbagley | @jcbagley | Dec 26, 2024

Hi all(Coleen too for the bump for a update),
Saw the Urologist at Mayo Phoenix and the medical Oncologist on the same day. (Traveled from Colorado) Urologist said they would not offer me surgery due to my age and aggressiveness of the cancer. After the MRI at Mayo I now know I have 3 tumors on the prostate, the one lymph node that slightly lit up on the earlier PSMA image confirmed cancer, the seminal vesicles has it, another lymph node has a “new” small tumor not shown on the PET scan, and there is a suspicious place on my pelvic bone. The Medical Oncologist gave me the initial dose of Degarelix and said that will change to Lupron in a month. I back home now and have an appointment with a local medical oncologist on Jan. 6 so they can help with required monitoring on the hormone therapy. I have an already scheduled consultation with radiology at Mayo on January 13th. I hoping to turn that into an internet discussion where I may be able to learn enough about what type of radiation to do before traveling that distance for a quick consult. I was referred by the local urologist to a local radiologist, but I haven’t seen him yet. I’m a little Leary about the local person mainly from his experience level. He is a fairly new doctor. I would at least like to hear from Mayo since I’ve started the ball rolling there. (Stats for new readers: Gleason 9 - 7 of 12 samples positive, PSA on day of PSMA scan18.9. PSA 3 months earlier was 8)
Thanks still for all the support to everyone out there. It’s been extremely helpful so far.

Jay