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PSMA scan report is in : (((

Prostate Cancer | Last Active: 6 days ago | Replies (101)

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Profile picture for pamperme @pamperme

I had a radical prostatectomy in 2022 and the pathology showed the tumor was 40 percent of the prostate, Gleason 7 3,4 30 percent 4, cribform, EPE with 2 margins questionable, Pt3a. Went two years with PSA <.02 and then rose to .15 after a year. They did a decipher test and it was .92.
They took a psma test and had 3 locations on the ribs with low suv. They then put me on Orgovyx for three months and took another scan and the ribs had approximately the same suv therefore they felt it was not cancerous since the low testosterone would cause the cancer to have no psma and would have lowered the suv. This is something you could have done, go on adt for three months and see if the suv stays the same or goes down. They also tried to biopsy a rib which showed nothing but told me showing nothing did not mean it was not cancerous since it is hard to make sure it was taken in the exact spot.
I am getting IMRT radiation for BCR and they are doing the larger area being the lymph nodes and prostate bed for the first 25 radiation sessions and then 13 additional sessions to the prostate bed area. I have completed the 25 sessions of the larger area and 4 sessions of the smaller area and will complete the radiation and 6 months of Orgovyx on June 18.
The radiation has caused bowel issues and some sensitivity to penal area but no more than expected because they had warned me.
The Orgovyx has been more of issue to me. It emotionally has affected me and has changed myself. It causes me brain fog, hot flashes,tired, makes me feel weak. There is no question that doing things physical things makes me feel better. I am on several other drugs which could be cotributing and the radiation also definitely contributes to the tiredness. I am very satisfied where I am at and am looking forward on June 18 to start the process back.
I am not a Dr but if I was in your husbands situation I would ask if I could be put on Orgovyx and take another psma after 3 months and do they feel this would be a good method. Both my Dr and Sloane agreed this was a way to do it. Also I would be asking if the radiation they intend to give him was going to cover the lymph nodes which I expect it is. If the specific lymph nodes show up cancerous they may be able to target it specifically Wishing you and your husband the best.
Also wishing the prostate cancer could be eradicated for everyone. While a slow cancer it sure can be persistent
Timmy

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Replies to "I had a radical prostatectomy in 2022 and the pathology showed the tumor was 40 percent..."

@pamperme

Hi Timmy - thanks soooo much for sharing this 🙏💗 ! It is brilliant idea !
I really hope that our doctor will be open to that suggestion. It would be so important to know what is really going on with that inguinal node : (((

I am so sorry to hear that Orgovyx had such bad effect on your body and mood : (((, it is unbelievable how side effects differ from patient to patient in all aspects of PC care and treatments, there is just no way one can prepare or anticipate anything related to PC *sigh. I can only imagine how eager you are to stop ADT and finally get back to "normal self". Just one more week - you are almost there !!! *hugsssss

Once again, thank you for finding time to write such detailed post and for sharing your experience, it is greatly appreciated and extremely helpful.

I am wishing you super fast recovery and forever remission form PC 🍀✨.
Hopefully science will soon find the way to obliterate this obnoxious disease once and for all.