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Cancer in penis

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User
Posted 06 Dec 2022 at 13:39

Well, I started here in 2011. Yesterday they told.me biopsy of penis lump is prostate cancer related. They will do a CT scan of chest and abdomen to see if it's gone anywhere else.

Felt destroyed last night. Is there anyone out there who knows about this? It's quite rare apparently.

Thanks

Roger

User
Posted 06 Dec 2022 at 20:01

Really sorry to hear this Roger. I’m really sorry I can’t be of any help but this will just bump your post up in the hope that someone else can offer advice.

Wishing you all the very best.

User
Posted 07 Dec 2022 at 05:26
If it's the only met ask if they can treat it with focal therapy or surgery.
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User
Posted 06 Dec 2022 at 20:01

Really sorry to hear this Roger. I’m really sorry I can’t be of any help but this will just bump your post up in the hope that someone else can offer advice.

Wishing you all the very best.

User
Posted 06 Dec 2022 at 23:25

So sorry to see this - it is extremely rare and I can think of only one other person on this forum in the years that I have been a member. Prognosis is generally not great but there have been isolated cases where the cancer has been controlled for many years, even with penile mets. How long did you stay on the bicalutimide after it was reintroduced? 

In 2019, I questioned why you had not been offered chemotherapy, abiraterone or enzalutimide - 3 years on, I would expect them to be offering you apalutimide asap with or without chemo - I can think of no reasonable explanation for why they have delayed so long. 

Edited by member 06 Dec 2022 at 23:30  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Dec 2022 at 23:32

Thanks for reply. Yes, been on zoladex since 2011. Consultant says they may use a modern anti androgen depending on scan result.

 

 

 

 

 

They told me I would go on bicalutamide when psa is 10. It was 8 in July 2022

Edited by member 15 Dec 2022 at 13:23  | Reason: Not specified

User
Posted 07 Dec 2022 at 05:26
If it's the only met ask if they can treat it with focal therapy or surgery.
User
Posted 12 Dec 2022 at 20:11

I have  CT scan tomorrow dec 13th and meet with oncologist day after. Though Secretary says they wont have results then. 

I've been on zoladex for 11 years on and off. Nothing else. A drug that is 40 years old!!. Now, I read that if you have penile mets, there's probably mets elsewhere. It's getting close to Xmas, I'm going to demand some tablets on Wednesday. Can I do that? time is ticking away and I want to do something.

 

Edited by member 12 Dec 2022 at 20:36  | Reason: Spelling

User
Posted 12 Dec 2022 at 23:18
Well if you were my brother, we wouldn't be settling forbicalutimide or a 'wait and see' approach - I think you have been treated rather sloppily, to be honest
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Dec 2022 at 12:31

Update: I had CT scan Tuesday and saw consultant Wednesday. The scan was clear, hooray! The very small nodule of prostate cancer can be surgically removed. They have never seen prostate cancer cells on penis. Very relieved. Next step is to do bone scan but chance of significant mets is low. 

User
Posted 15 Dec 2022 at 12:38

Toby, good news that you can have some treatment. Has anyone mentioned a PSMA scan. My CT and bone scans found nothing but a PSMA scan found a tumor, not sure what your current PSA is.

Thanks Chris 

User
Posted 15 Dec 2022 at 12:42

Chris,

Don't know about PSMA scan. I guess MRI would do the same. My PSA was 8.1 in July. Two years ago it was 5, so not going up rapidly

User
Posted 15 Dec 2022 at 22:14
An MRI scan and a PET / PSMA scan are completely different things - it is like the difference between standing on a ship to watch the horizon with sunglasses on and with binoculars. The problem in your case is that a PSMA or other PET scan may find other tumours and make your consultant decide not to operate on your penis :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Dec 2022 at 23:56
Or it my find another spot that can be treated..
 
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