The only way is up !

[Simo69]

Hello from across the pond. I've been a member for quite a while and have followed your exploits with interest . I guess I could do with some help now so here goes.

I was diagnosed in Sept 2018 but have reached a stage where the onco says that I am terminal. I have tumors in my penis, i am on chemotherapy at the moment. Please read my profile for more details.

It us quite rare where I live for the cancer to take this route, my onco has only seen 4 cases in 10 years. Just wondering if any body else has or knows someone with this .

Simo

[Tall_Allen]

That is indeed rare. Have they biopsied any of the penile tumors? - I'm wondering if it is urothelial, sarcoma, or somesuch.

[Simo69 in reply to Tall_Allen]

Thank you for the rapid reply. I have only been told at this stage that it is prostate cancer of the penis. Also as is the case with aggressive cancer, my psa was staying low, around 0.28, makes a mockery if it all dosnt it ? I may get more information after my 2nd chemo session next week when I see my oncologist. I haven't had much luck getting any feedback from uk prostate forums either.

[Tall_Allen in reply to Simo69]

If you send me the results of your biopsy and IHC analysis, I would be happy to interpret that for you. If you haven't had a biopsy of the penile tumor and IHC, you might ask for it.

As you know, the most aggressive kinds of prostate cancer express little or no PSA. That means you have to use scans to monitor whether a therapy is working.

[Simo69 in reply to Tall_Allen]

Many thanks for that Tall Allen, I will ask the questions. I have a scan booked for tomorrow incidentally, thorax,abdomen and pelvis. I will post the results in due course.

[j-o-h-n]

From the west side of the pond (our east, your west).

I just review your condition on the Net and it seems like a rare one. You might want to review some before you see your doctor.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 06/09/2020 7:16 PM EST