Newly diagnosed

Posted by vinny59 @vinny59, May 13 8:46am

Hello, new to group, short history, had Squamous cell carcinoma of the head and neck in 2006 , in 2011 I was diagnosed with stage 4 Non Hodgkin's Lymphoma I'm in remission of both. Then my PSA numbers started to go up from .02 to 7.3 within two years. Had a MRI of prostate it showed lesions, biopsy showed gleason grade group of 5, and gleason score of 5+4. 8 out 12 biopsies showed positive. with three sites with perineural invasion. Had bone scan that showed a suspicious lesion in the hip. Finally having my PMSA Pet Scan the 21st . Still up in the air with treatment choices, any insight if the PSMA scan comes out positive for metastasis? So Sorry for the long thread!

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

(Layperson writing)

I'm sorry to hear about your new diagnosis, but welcome to our little community.

I'd handle any advice you get here carefully, because your situation is complicated by your other cancers, even though they're in remission. Your oncology team will be doing a careful balancing act to get you the best outcome for the minimum risk.

Just in general terms, stage 4 oligometastatic prostate cancer (just a few metastases) is very manageable now with a combination of androgen deprivation therapy (ADT), androgen-reception-signal inhibitors (ARSI), targeted radiation, and occasionally even early chemotherapy (mainly if the cancer is already castrate-resistant or has gone past the oligometastatic stage).

Some of these have tough side-effects and conflict with other treatments, though, so your path may be different. In any case, I wish you the very best, and look forward to reading about your progress and your victories.

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@northoftheborder

(Layperson writing)

I'm sorry to hear about your new diagnosis, but welcome to our little community.

I'd handle any advice you get here carefully, because your situation is complicated by your other cancers, even though they're in remission. Your oncology team will be doing a careful balancing act to get you the best outcome for the minimum risk.

Just in general terms, stage 4 oligometastatic prostate cancer (just a few metastases) is very manageable now with a combination of androgen deprivation therapy (ADT), androgen-reception-signal inhibitors (ARSI), targeted radiation, and occasionally even early chemotherapy (mainly if the cancer is already castrate-resistant or has gone past the oligometastatic stage).

Some of these have tough side-effects and conflict with other treatments, though, so your path may be different. In any case, I wish you the very best, and look forward to reading about your progress and your victories.

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thank you so much for your response, my oncologist is going to start with Leuprolide but have to wait for PSMA scan first

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vinny59: if you use radiation, try to pick a narrow margin machine with built in MRI not fused images, and if the doctor says ok, 5 hypo fractional treatments. Protect your healthy tissue, where you can. My brother had prostate cancer that metastasized and they used the Mridian machine, as I did in Florida. He went on to being managed by a medical oncologist and his team at Weill Cornell in New York city with additional treatments of drugs. Most of his Pancreas and his spleen were recently removed because he also has pancreatic cancer and a past with colon cancer. Physically he was never in good shape and I think that also affects side effects and tolerance.

Try to take one step at a time and educate yourself as much as you can so you can collaborate with your doctors related to any negative side effects from drugs, if you have any. They will give you educated guesses that will change based on your feedback. Use Spaceoar, if you have radiation, to help protect your rectum. Get second or third opinions from centers of excellence or a doctor equivalent, where you can. Workout in whatever way your body will let you for anxiety relief and body maintenance.

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thanks for your response , once I get the PSMA scan done we can get a game plan going, and great point about educating myself, that's why I'm here, to get as much insight as possible to make an informed decision on treatment. Honestly I'm looking for quality of life not length of life.

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My opinion is: RADIATION THERAPY/ADT also like Arbiterone, as well as considering using Pluvicto to find those cancer cells throughout the body. I m stage 4 Gleason 9/10- metasticized to pelvic lymph nodes. I m 18 months into this with a PSA of < .01

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thanks for your response I wish you the best with your treatment , so looking at your PSA number they are getting it under control? , did they target the Pelvic lymph with radiation?

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vinny59 (@vinny59) One variable that you haven't mentioned is your age since if you are 70+ I would recommend radiation but any younger I would go with removal. The reason is that the long-term outcomes are better with removal. I was 73 when I received SBRT Proton treatment for my cancer in 9/2020 at Mayo Rochester. My PSA was 11+ with a 4+3 Gleason score. After radiation my PSA has remained at < 0.1 However, upon further thought, I would go against my suggestion due to your other multiple cancers; get it removed.

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@dandl48

vinny59 (@vinny59) One variable that you haven't mentioned is your age since if you are 70+ I would recommend radiation but any younger I would go with removal. The reason is that the long-term outcomes are better with removal. I was 73 when I received SBRT Proton treatment for my cancer in 9/2020 at Mayo Rochester. My PSA was 11+ with a 4+3 Gleason score. After radiation my PSA has remained at < 0.1 However, upon further thought, I would go against my suggestion due to your other multiple cancers; get it removed.

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I will be 65 in July , thank you for the insight

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One more thing that is bothering me, sorry for the rant, but I was approved for my PMSA Pet Scan on the 23rd of April, turns out the place that I was approved from, did not want to take my Blue Cross insurance, told my urologist office where to send the new script , they have dragged their feet and just sent it to the new place. So I have to wait for approval again! Feel like I wasted 3 weeks for nothing, can't start hormone treatment until I have that scan. Hope it does not affect my outcome ......

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@vinny59

thanks for your response I wish you the best with your treatment , so looking at your PSA number they are getting it under control? , did they target the Pelvic lymph with radiation?

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Yes they did- 28 visits. I walk 3x/ week 1.2 miles in 25 min. For exercise. I m 75.

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