New diagnosis

[Wakeyguy63]

Hi

I'm Neil, 62, I had my prostate cancer diagnosis in late December 2023. Live in England.

My Gleason score 4 + 3 =7.

Initial PSA test was a staggering 15.6. I'm average height, normal weight, 75 kg.

A non smoker and generally fit and well with no other conditions, nor do I take any medication for anything else.

This was just a random PSA blood test, instigated by me, no symptoms at all. So imagine how shocked and upset I was when tthe esults came back.

I'm due to have a radical robotic-surgery prostectamy with the next the coming weeks.

Just wondering if there are any tips, or hints some if you guys who have already had this survey could give me please.

My husband has been an absolute rock so far in supporting my fears and anxiety.

My consultant is very sure the cancer is still within the prostate so , I've opted to get it removed. I'll put up with the two main side effects as and when they hit me. ED and the incontinence period.

In my sex life, I'm neither top or bottom, but masturbating is something I hope I can resume in the future. I've read a lot about the various options, ie, pumps, tablets etc. It's all mind boggling to me just now.

Thank you for reading.

Neil

[Tall_Allen]

IMO, your intended treatment is a disaster for gay men. My best advice after hearing from many gay men who have had a prostatectomy is... don't!

Here are my reasons:

prostatecancer.news/2021/12...

We have all gone through the shock and the "just cut it out" phase. It passes with time, and there is no reason you can't take your time. There is no rush!

prostatecancer.news/2016/08...

You owe it to yourself to find out about the other alternatives, especially SBRT and HDR brachytherapy. I suggest you talk to Alison Tree at Royal Marsden and Peter Hoskin at Mt. Vernon Hospital in Northwood.

Read this:

prostatecancer.news/2018/10...

[Leeaussie5]

I was in much the same spot as you. I did ok with rp. I managed my ed with cialis/tadafil but then after a few years in I found I didn’t need it (except when planning a big night out!). I had a urinary specialist Physio that taught me how to strengthen my urinary sphincters in advance of surgery. I get it from Tall Allen - I do miss making cum. One thought - have you had a full body scan for prostate cancer? I don’t know of any other way to be sure there are no metastatic tumours. I don’t know if it is available on the nhs. I am in Australia and such scans are not covered by Medicare for prostate cancer. (Outrageously they are covered for breast cancer). Best of luck.

[Wakeyguy63 in reply to Leeaussie5]

Hello Lee

Many thanks for reaching out to me. Much appreciated

I have had a body , bone scan recently. All was clear. My surgeon is very sure my 4+ 3 Gleason rated cancer is still within my prostate. I've got my pre op appointment today, so hopefully will have further news.

If after the operation, I'm well enough to start penile gymnastics training, I will. I'll gey a medical vacuum pump. I've heard of penis shrinking following the operation. I'm not the most endowed man around so can't afford to be loosing a lot of length. They say a vacuum pump can help keep size in check??

I'll keep in touch.

Neil

[Leeaussie5 in reply to Wakeyguy63]

Good to hear your being so positive. I started on cialis about a month before surgery. One night in the first week afterwards, I woke up with pain. You cannot imagine my joy that it was a mild hardon pulling on the catheter. At that point you know you will recover.

[cpl901]

Stressfull situation. Take your time. Surgery is non toxic but takes his side effects with. I think i did a good choice (58 yo). No cum, no mess. Still orgasming, different, more intens ?! I m 4 months after RP and still in rehab (penile). Regularly PSA testing is stressfull. If you go for surgery choose the right surgeon. If you go for RT too...

[Leeaussie5]

let me know how you go. Best wishes

[Wakeyguy63 in reply to Leeaussie5]

Thanks Lee, I sure will. Had my hospital pre op assessment today!, My next call will be my RP admissions date! I'd best get some Cialis stocked up, think I'll probably need it!!

[cpl901]

Lee did a good job, starting with penile "rehab" before surgery. I m doing it after. It s still ok, but i may be should have done more before. I remember just when i woke up from surgery testing the "brain-penis comunication nerve" putting the wright movie on in the brain and touching if something was moving downstairs..and it was... so i felt ok. Now i take Cialis sometimes but i don t like the side effects (nose, eyes, headeake,...) but it helps for rehab.

[ejefowe]

Lots of good advice has been given to you Wakey. My case was similar to yours. 65 years old. Robotic surgery after 4+3=7 Gleason. Post surgery result.... Cancer remained within the capsular prostate gland and so most likely did not spread. PRE-HABILITATION for 3 months before the operation with a pelvic floor physio is key! When my catheter was removed post surgery, I was immediately dry at night. The 3 months following surgery with the physio was all I needed to get me 99.999% dry during the day. To keep your penis's length and girth you must start penis Rehab about 1 month after catheter is removed. Daily "pumping" replaces your nocturnal erections and keeps the tissue stretched. Get a VACURECT and watch videos from "A Touchy Subject" on YOUTUBE. You can also look into trying injections. If you are fortunate, your erections will come back. Mine did not, but I am still able to orgasm after pumping, injections, or with "soft-cock". THANK GAWD!!!! Like you.... I was worried. As long as your husband is willing... the 2 of you can find a new normal! Don't give up!!! PLUS... I would highly recommend looking for online or LIVE support groups. The exchange of experiences and information is PRICELESS....and very helpful.

[Jaffa_2001]

Hi Neil

think long and hard before making your RP decision. The side effects are no stroll in the park and can impact upon your life for the rest of it!

My partner got naffed off real soon with its impact on our sex lives, and once I was single again, it is amazing how difficult it is as a gay man to date again.

No cum, semi hard erections, blue pills and the occasional leakage are not readily acceptable by most prospective new gay partners.

I speak from heartfelt experience here sadly.

If I had my time all over again, I would not have rushed my RP decision. The NHS should have explained it all to you, but when I had my pre-op they did not exactly give me any idea of how down I would feel afterwards when my erections were not happening.

It took 2 years before I got a stirring downstairs.

Make sure you have ALL the information.

All the best - Brian.

[Chuck67]

I had a RP in 2021, I was 53. Everything still works!! I don’t have any problems at all.i didn’t need pumps or pills, I have a loving partner and we went through this together. I came out the other side a little different but life goes on and you move on when there is not the drama surrounding a fresh cancer diagnosis to focus on. Stay strong, make the right decisions for you. I wish you every good fortune on your journey.

[Wakeyguy63 in reply to Chuck67]

Thank you for your reply. I'm pleased to hear you recovered well. So good to hear.

I'm just waiting now for my date for the operation. Thanks. Neil

[Hidden]

you have time …suggest you don’t rush unless you feel you must get it out…that you will only be happy if it’s out. There are other options for 4+3. Find a support group in the UK. Lots do zoom meetings. It provides very good local info and in much more detail. Also google Dr Mark Emberton…London. He is a leader in the field with lots of helpful online videos. I’m 3+5 = 8 and I’m taking a much less damaging route. I’ve been researching for 4 months. If you do a little more research online you will see that all the leading Urologists say “ there is no rush!” Explore your options! If your Urologist has only suggested radical surgery…it may be the only procedure he does. Get 2nd and 3rd opinions. Any good Urologist will expect you to. I live in Chicago and I’m researching in Europe too because they are often ahead in research.