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equusAz
Posts: 15
Joined: Mon May 22, 2023 9:16 am

New here

Postby equusAz » Tue May 23, 2023 5:52 pm

Hey All!

So...gonna be as upbeat as I can here. Recently diagnosed with prostate cancer. Not too bad - suposedly. At least not as far as they can tell. PET scan will tell the truth. So far looks like surgery is going to be the way to go, and at the appointment with the urologist (consultation on surgery) he said if he removes the prostate, at the least one nerve will be removed which will greatly increase my chances of ED. I already do have some ED as it is (47yo, not overweight - but I do take Slidinafil once in a while due to *ahem* issues). So I'm not excited about that. However, I know my journey is just starting and I've been reading on here and educating myself as much as possible about what I may go through. Forwarned is fore-armed as they say. So yeah. Thats my story so far.

1day2Bbionic
Posts: 64
Joined: Sat Apr 30, 2022 3:38 pm

Re: New here

Postby 1day2Bbionic » Tue May 23, 2023 6:55 pm

Welcome to the forum. When I first came to this forum I knew very little of how widespread and frustrating ED is too many men. I have learned so much valuable information here from real people going through real problems. Some failures but lots of success too, it gives me hope to know Im not alone in this fight and there are answers out there.

User avatar
bldoink
Posts: 3683
Joined: Mon Apr 03, 2017 12:58 am
Location: Fl.

Re: New here

Postby bldoink » Tue May 23, 2023 10:45 pm

Welcome to the forum. I'll be glad to help where I can. I've been on the post RP ED journey for 11+ years. I did start when I was 10 years older than you so I certainly feel for you there. Sometimes life throws us a curve. We just have to make the best of it.

Good luck.
R.R.P 2011 Mayo Jacksonville, Dr. Michael Wehle. Nerve sparing - badly damaged. C in margin. V.E.D, Viagra and PGE-1 (80mcg/ml) injections @ ~ 14 units. Originally Edex20, then compounded PGE-1 - cost. Inject. 10+ yrs. It works. Treasure coast of FL.

Old Guy
Posts: 2471
Joined: Tue Mar 31, 2020 4:31 pm
Location: Ohio

Re: New here

Postby Old Guy » Thu May 25, 2023 11:41 am

Welcome. FT is the best place on the internet to learn about ED. Sure wish I had found it long before my ED days started.
Nov. 8, 2019
4+ years, Coloplast Titan OTR
Married 36 years to my beautiful young bride
Always here to answer questions if you PM me

Lost Sheep
Posts: 6133
Joined: Mon Jul 04, 2016 11:16 pm

Re: New here

Postby Lost Sheep » Mon May 29, 2023 1:20 am

equusAz wrote:Hey All!

So...gonna be as upbeat as I can here. Recently diagnosed with prostate cancer. Not too bad - suposedly. At least not as far as they can tell. PET scan will tell the truth. So far looks like surgery is going to be the way to go, and at the appointment with the urologist (consultation on surgery) he said if he removes the prostate, at the least one nerve will be removed which will greatly increase my chances of ED. I already do have some ED as it is (47yo, not overweight - but I do take Slidinafil once in a while due to *ahem* issues). So I'm not excited about that. However, I know my journey is just starting and I've been reading on here and educating myself as much as possible about what I may go through. Forwarned is fore-armed as they say. So yeah. Thats my story so far.

Welcome to the forum, equusAZ. Not so welcome is the news that brought you here, so you have my sympathies.

With the diagnosis, you should have had a discussion with your medical team about how agressive the cancer is. Did they do a biopsy? Pathologists/Urologists score the sampled tissue and that gives a prediction of how aggressive the cancer is and thus how aggressively to treat it. And whether prostatectomy or some sort of ablation or other targeted therapy is appropriate. There have been great strides in radiation therapy to kill off cancer cells and in my research I ran across this article (though it is from 2014, it is good reading and I am sure things have improved and improved therapies are available.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4463293/

Newer Cryotherapy and immune system therapies are being investigated, too.

So, I (for myself) have not committed to prostatectomy yet. My diagnosis was given to me April 12 2023 and it has been quite a ride. MRI after a suspicious digital rectal exam followed by a biopsy that gave me a Gleason score of 4+3 7 (the numbers indicate aggressivents and the order of the numbers indicates the balance of aggressiveness). Then a bone scan to see if the cancer has metastisized (PCa tends to go to the bones preferentially.) Bone scan was clear. I had a PSMA-PET scan (which is more sensitive than the bone scan) last week and do not have the results yet. I figure more tests may be more expensive, but may save costs and problems of treatment/surgery.
Lost Sheep
AMS LGX 18+3 Nov 6, 2017
Prostate Cancer 2023
READ OLD THREADS-ask better questions -better understand answers
Be part of your medical team
Document pre-op size-photos and written records
Pre-op VED therapy helps. Post-op is another matter

User avatar
still_crazy
Posts: 67
Joined: Sat May 06, 2023 10:05 am
Location: FL

Re: New here

Postby still_crazy » Mon May 29, 2023 1:33 pm

Welcome Equus.

I can certainly relate, being about 5 months post prostatectomy. I had an aggressive Gleason 9 cancer that had invaded the nerves on one side and the surgeon was not advising trying to save the nerves on the other side due to the possible presence of cancer cells near it. So yeah, I ended up with full ED, but at least all of the surgery margins and lymph nodes were free of cancer and my PSMA Pet scan indicated no spread beyond the prostate.

I'm fairly new here, but this site is a great place to find the info you need on penile rehab, and getting erections by other means like VED + constriction rings or injections (and if all else fails, an implant). I never thought I'd be able to inject into my penis for an erection, but it turns out, it's not so bad after you get used to it. Also, http://atouchysubject.com is another good resource for post prostatectomy rehab, although there is no discussion board, just some videos and FAQs that are helpful.

First get rid of the cancer, then move on from there. Your sex life will be different, but if you have an understanding partner, you can discover some new things together.

Best wishes and good luck.
Age 66. RALP Jan-2023. Non-nerve sparing.
VED exercise most days, Trimix T-106 (30-1-25), 25 units.
Bending trauma around age 50, resulting in mild Peyronies.

equusAz
Posts: 15
Joined: Mon May 22, 2023 9:16 am

Re: New here

Postby equusAz » Mon Jul 03, 2023 9:38 am

Lost Sheep wrote:Welcome to the forum, equusAZ. Not so welcome is the news that brought you here, so you have my sympathies.

With the diagnosis, you should have had a discussion with your medical team about how agressive the cancer is. Did they do a biopsy? Pathologists/Urologists score the sampled tissue and that gives a prediction of how aggressive the cancer is and thus how aggressively to treat it. And whether prostatectomy or some sort of ablation or other targeted therapy is appropriate. There have been great strides in radiation therapy to kill off cancer cells and in my research I ran across this article (though it is from 2014, it is good reading and I am sure things have improved and improved therapies are available.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4463293/

Newer Cryotherapy and immune system therapies are being investigated, too.

So, I (for myself) have not committed to prostatectomy yet. My diagnosis was given to me April 12 2023 and it has been quite a ride. MRI after a suspicious digital rectal exam followed by a biopsy that gave me a Gleason score of 4+3 7 (the numbers indicate aggressivents and the order of the numbers indicates the balance of aggressiveness). Then a bone scan to see if the cancer has metastisized (PCa tends to go to the bones preferentially.) Bone scan was clear. I had a PSMA-PET scan (which is more sensitive than the bone scan) last week and do not have the results yet. I figure more tests may be more expensive, but may save costs and problems of treatment/surgery.


First off - sorry for the delay in replying. I've been lurking here quite a bit.

They did a biopsy, for me the agressiveness is the ammount of cancer. It came up as 4+3=7 for most of it - intermediate, but the fact is my PSA went from 4 to 10 in one year. Also, my prostate is average/small size. I did meet with an oncologist who was non-commital on radiation therapy, and after all of this I did go back to my primary Urologist (who does not perform surgery) and my PCP, and both agreed surgery is the prefered option.

1. I'm much younger than the average patient, and while RP can be seen as drastic, seeing as this hit early and seems to be agressive despite gleeson, its probably aggressive - also 80% of the prostate is involved.
2. Subjecting someone young to radiation is not ideal and could cause issues further down the line.
3. PSMA showed its contained entirely to the prostate with no involvement outside (FYI doctor said the PSMA was some of the clearest / resolution he'd ever seen - i.e. I remained as still as possible and breathed as shallowly as possible).

I'm currently scheduled for my RP on the 10th.

MARKOS2018
Posts: 465
Joined: Mon Aug 22, 2011 5:20 pm

Re: New here

Postby MARKOS2018 » Fri Jul 28, 2023 11:37 am

Sorry to hear about your cancer but you’re hopeful that it is contained. Seems you are fortunate your doctors are thorough.

Best to you and start the VED therapy if you have the energy. I lost my right kidney to cancer and understand what your going through.
Titan implanted by Dr Eid Due to Peyronies, Implant was the only option for me.


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