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New diagnosis. Advice about treatment

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User

Posted 04 Feb 2022 at 18:59

Thank you Ian for your kind words and advice. So glad to hear the NHS has been on top of things for you and your treatment so far. Long may that continue and best wishes. Loving the support on this forum!

User

Posted 04 Feb 2022 at 21:08

This is the first I've heard about PCa causing ED. I was diagnosed just over 2 years ago at 68, with a slightly more advanced cancer, a bigger prostate and PSA of 9, but had absolutely no problems getting an erection at the time.

I couldn't have RT due to suffering from colitis, and surgery was only partially nerve-sparing, so I do have ED now. However, I have an undetectable PSA and practically no incontinence, so overall I'm pretty happy with how things have turned out.

I would ask for an honest opinion about whether hubby is ever going to get full function back whichever option he takes. After all, if he is going to suffer from ED anyway, it isn't worth worrying about that particular side effect.

However, I agree with Lynn; there are other options to surgery/RT these days and I would see if one of those is possible.

User

Posted 04 Feb 2022 at 22:48

My husband was operated on within two weeks of seeing the consultant on the NHS . We are in Kent. This was July 2021. He opted for prostate removal , he wanted to be radical as his father had died of prostate cancer. My husband had been on active surveillance for about 8 years so we always thought time would catch up.

The incontinence side was a worry but it hasn’t been as bad as we feared. He was back running after 12 weeks albeit with Tena 3 pads. Now I think the pads are ‘just in case’.

Both his follow up blood tests have seen psa undetectable , so for us it has been the right decision and a relief not to have to continue with worry and additional treatment plans. He was Gleason 7 and was 67 when operated on .

User

Posted 05 Feb 2022 at 00:06

Hiya, the diagnosis is near identical to mine; I ended up going the HT/RT route which side effect wise, besides the obvious impact on 'downstairs functionality', has been pretty good to date compared to some of the 'journeys' you read about; all details in Bio. Whichever path you end up choosing all the very best of luck! Any Qs plse ask away. Cheers.

User

Posted 05 Feb 2022 at 11:25

I am 74, fit and otherwise healthy and my diagnosis last September was very similar. Gleason 3+4 and T2b. My lesion was shown as close to the capsule. I was steered towards the RALP route and had the op in November. I must confess that after making my decision, doubts surfaced as to whether I should have more thoroughly evaluated less invasive focal options. What vindicated my decision, in my mind, was that the post op pathology on the extracted gland revised the staging to T3a and I am happy I am rid of it. I may not have known that without the op. That said, 13 weeks after the op, my continence is only now showing slow improvement but this may be hindered by a previous surgical procedure and my age. As long as you have consulted, considered and agreed on a decision, be at peace with it and don't let doubts creep in. I did and it only served to cause me further stress. Enjoy your holiday!!

User

Posted 05 Feb 2022 at 15:39

Thanks everyone again. We’re are really appreciative of all the comments. Feels like we’re still edging towards RP but it’s early days yet with lots more info and advice to come I’m sure.

User

Posted 05 Feb 2022 at 20:56

Many thanks for your message Music Man -( I couldn’t send a private message yet).

User

Posted 11 Feb 2022 at 16:36

Hello everyone. Just a quick update from last week. Hubbie has been talking to the team at UCLH all week, as well as a top consultant (friend of a friend) and a private consultation too.

He has many treatment options open to him (he is very lucky in that respect). The tumour needs to be treated but was quite close to being “Active Survellience”.

He narrowed treatment down to either RP or focal treatment (HIFU). After chatting to all the various consultants today, he thinks he’s going with HIFU.

It’s very him - something slightly experimental and “high tech sounding”! It’s a bit more risky I believe as it’s only been around a few years, slightly more recurrence etc. but quality of life is what is driving his decision, and he’s happy with that. He’ll worry about recurrence if/should it happen down the line.

If anyone on here has any knowledge of HIFU I’d be very grateful for any advice.

Thanks all for your wonderful advice and support. Will let you know how it goes later on.

User

Posted 11 Feb 2022 at 18:00

Hi Susie,

I have a good friend who had it some time ago, no problems with it and I believe he is sorted now!

I did enquire of it for myself but my psa and gleason is too high.

Look into it and every success!

Blessings

Ian

User

Posted 11 Feb 2022 at 19:58

Hi Susie,

HIFU is a niche treatment for suitable men that have not reached the stage where the more radical treatment of Prostatectomy or Radiotherapy of one type another is required. It is also used as a salvage treatment for failed Radiotherapy. HIFU can also be repeated (which is what I had - 2015 and 2021). It is most usually a day procedure that enables a man to have it and very shortly be able to walk away, although he is asked to be accompanied and not to drive for 24 hours due to the possible long term effects of the anesthetic. I found there was some initial pain which was less on my second treatment, as I took some of the provided pain killers. My catheter was removed after 8 days and with it the irritation it caused. Also, as soon as the catheter was removed urine frequency was back to normal with no leakage. It has not caused any side effects. (I had RT as primary treatment in 2008 and it led to ED, so I cannot say whether or not it would have been a factor if HIFU had been my primary treatment.)

I had my HIFU at UCLH where they are the leading exponents of Focal Therapy in the UK. The risk of a fistula forming is now far lower, the Professor who did my treatments had not had one in over 900 treatments she administered.

In short, the side effects are less with HIFU than for RT or Prostatectomy but the chances that you may need further treatment in due course, more Focal treatment or more radical treatment are generally thought to be more likely than having Prostatectomy or RT as primary treatment.

Barry

User

Posted 12 Feb 2022 at 07:20

Thank you guys - very reassuring. Will update in a few weeks with any news

User

Posted 12 Feb 2022 at 16:07

Just starting on the prostate cancer diagnosis, 69 years old, my PSA is 412, had an MRI scan & nuclear bone x-ray, waiting for the results.

User

Posted 12 Feb 2022 at 16:40

Originally Posted by: Online Community Member

Just starting on the prostate cancer diagnosis, 69 years old, my PSA is 412, had an MRI scan & nuclear bone x-ray, waiting for the results.

David,

Wishing that your results are favourable and that a treatment plan if formulated soonest.

This forum is really supportive and full of knowledgeable people.

User

Posted 12 Feb 2022 at 17:05

Hello David

It might be useful if you started your own thread so that postings about your treatment etc will be all together.

Ivan

User

Posted 13 Feb 2022 at 08:33

Hi I was diagnosed in September 2016 at 70 with PSA 2.19 Gleason 3+4=7 with 5 cores out of 20 positive and had the choice of Robotic surgery or Brachytherapy and went for the Brachytherapy as i felt it less invasive option and possibly less side affects.

I am 5 years on with PSA 0.05 and signed off by Specialist in 2021.Click on my Avatar for my journey so far.

It was difficult to decide on what option to take at the time but i think it was the right decision for me. I don't think i am cured and take one yearly PSA test at a time and try to get on with life but i am more worried about catching Covid than the Prostate cancer.

Good luck John.

User

Posted 13 Feb 2022 at 16:51

Thank you john. Very similar diagnosis to my husband. Very difficult decision, but he seems happier now it’s made. I’m still a little on the fence……I’m still a “whip it out and hopefully cure it” kind of girl! I think of HIFU as a bit more of a “treatment” than a cure - but time will tell. Good luck.

User

Posted 13 Feb 2022 at 16:58

In reality, they are all 'treatment' rather than cure - about a third of men have recurrence after surgery. The benefit of something like HIFU is that the men tend to go into it with a realistic expectation so if it works, brilliant, but if it needs to be repeated, it's no big deal. Men who go for radical treatment may struggle much more when there is a recurrence because they hadn't anticipated it or the surgeon perhaps glossed over the risks ... or just emotionally, they really desperately wanted it to work.

Oncologists will tell you that there is no cure for cancer - all any of us can hope for is a very, very long remission.

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

User

Posted 13 Feb 2022 at 17:28

This is giving me hope for my hubby, thank you xx

User

Posted 14 Feb 2022 at 08:16

Thanks Lyn. You’re absolutely right - he does expect more treatment down the line with HIFU and is OK with that (especially as the after effects aren’t quite as invasive).

He was genuinely shocked to hear that a RP has a recurrence rate even when tumour is localized.

User

Posted 16 Feb 2022 at 18:06

Susie if your considering more less invasive focal therapy look at IRE

I posted my experience on here so have a read. I go to Germany in two weeks for my first post operation MRI checkup

best wishes snd good luck

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