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Joining the Reluctant Brotherhood
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
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Welcome Jay. I'm sorry about your Diagnosis but welcome to the discussion board. As far as your question, Your medical team is approaching this as cautiously as possible. Joining us here is a good step. Ask your Uroloigist if there are in person support groups in your area. You might investigate going to a meeting and seeing if it's for you. My urologist invited me to a webinar for patients about PC and I found it helpful, you might ask about that or do some searching for open webinars. Do you have a public library someplace close? you could search for some articles there or use google Scholar that provides access to free articles. You aren't alone. If your anxiety is getting to you, ask your PCP for something to help your mind stop grinding.
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1 ReactionYou have a Gleason nine, none of the other numbers matter the highest number is all that counts. That is very aggressive and you are really wasting time with the urologist The urologist is not a cancer specialist. They are urologist and surgeons. You want a lot more options than just surgery as you well know.
You probably want to get a decipher score, which can show how critical it is to get quick treatment since it gives you an idea of the risk of spreading and death.
Get the PSMA pet test and then go with the results to a center of excellence. Recently a list was posted of where to find them. Were you able to find that information? Maybe someone can post it again. There is a mayo clinic in Scottsdale, Arizona, that would be an excellent place to start if it’s not too far. If you go somewhere like that, you can get treatment much quicker than you’re getting it now. Knowing that you have a Gleason nine, with a quickly doubling PSA , they will definitely not hesitate to treat you quickly.
There are groups that help cancer patients get hotel rooms for free or very low cost. Do a search on the web and you will find out that information if it is necessary.
You should get a hereditary genetic test to see if you have anything in your genetics that can cause prostate cancer. Do you have a family history of cancer? If you go to Mayo clinic, they will have you get one.
To try to cut back on your cancer growing, you should cut out all red meat, eggs and milk. They tend to exacerbate prostate cancer. There are a lot of prostate cancer nutrition videos on YouTube. You might go check them out.
The information you get about the machine that you’re having your PSMA pet scan done is really not useful. The PSMA results are all that matters. Which chemical was used to do the scan is really not critical information either.
There are a lot more treatments than radiation and surgery. HIFU, cryotherapy and TULSA-PRO are just some of the other options.
Jeff, thanks you SO much for this reply. You’ve hit on exactly what I was thinking so it’s great to have a confirmation of that. I do plan on connecting with Mayo in Phoenix area as that is closest to me. Great new info to me on choices other than surgery or radiation. I’ll get studying for sure. Next Tuesday for the scan can’t come fast enough for me. Thanks again. Jay