New diagnosis. Advice about treatment

Hi Susie
I expect Hubby, will be given the choice of Having his Prostate removed, or a combo of Hormone therapy & Radio therapy..

I was PSA 27 back in 2018, by the time all the tests were done, it was Jan 2019 & they decided it was 3 + 4 - slow growing. 
I went for the latter treatment - which takes a lot longer, but no surgery involved. I'm pretty well OK now, though I did get & still suffer a bit with Rectum damage, from the Radio therapy. Not really a major problem. It is probably a 2 year stint, all in all.

E.D., may well be anxiety - very understandable, HT will cause it too - but treated with Tadalafil - it can get better !
In that respect, I'm virtually back to normal now - though pretty dry ! Less mess I suppose, looking on the bright side.

My HT was started in the spring of 2019, & RT was Oct - Nov the same year - 20 visits to Addenbrooks, Cambridge. (Thankfully, just before Covid got started as a huge fear) My PSA went pretty low, & has stayed there - latest PSA 0.25, Dec 2021 - which they say is not a concern.

None of it, is very pleasant - but ignoring it, is probably not an option, either. As the quality of life, after you have kicked the bucket, is an unknown quantity !😪

Edited by member 03 Feb 2022 at 17:28  | Reason: Not specified

Hi Susie. I can fully empathise with the waiting for diagnosis. I found the wait a nightmare. You may get a recommendation from the MDT on a preferred treatment route, although it's your choice in the end. I followed the recommendation and opted for surgery (later this month). If you OH still works then the surgery option would mean more time off work. Also there could be some waiting time for surgery, whereas HT/RT could start straight away. Certainly worth finding out what the local surgery waiting times are as it seems to be a postcode lottery. It's not an easy decision but once you have spoken with both the urologist and oncologist (and asked every question you can possibly think of) then you will be much better placed to make a decision. I would certainly want to avoid foregoing any holidays already booked and this may well be possible in your husband's case. Good luck. Chris

Hi,

The back pain is likely to be unrelated.

After surgery he should be walking as if nothing happened within 3 months probably much earlier.  In the early days there is a good chance of leaking with each step and not realising but it's no reason not to walk, just carry a spare pad or two. It improves every day with dryness lasting longer.

If he has hormones, I've no experience but have read the best plan is to step up exercise/ diet adjustment immediately to hold back body changes which are harder to turn back than hold back.

All the best,

Peter

Ask his Doctor for either Tadalafil (Cialis) or Sildenafil (Viagra) tablets, to hopefully help with ED, and make your two hols like second honeymoons!

Best of luck going forward.

Cheers, John.

The relief of a "less than" at the 3 month appt should not be underestimated either!

Cancel your holidays and get it sorted!

Hi Susie,

I had a diagnosis in January with levels of much higher that your husband.

Was given the option of surgery or EBRT with HT.

I chose the EBRT route. The consultant said even if I went for surgery, they would still carry out radiation treatment anyway. I am 71 years old, fit and active and have no symptoms, I only knew something was wrong when I 'happened' to go for mass testing and the results came back high.

From the initial suspicion, I was seen pretty rapidly through the whole process and once I saw the oncologist, he started me on a 28 day course of tablets to limit the 'spike' of the first injection there and then. I had the first injection yesterday and will continue every 4 weeks or switch to 3 months if all ok.

My EBRT will be starting in about 3 months . I live in Sussex.

I too was concerned about NHS under pressure etc. but I have found no problems in getting dealt with at all levels.

There is no wrong choice and each route could have its challenges.

Be at peace in what you decide and enjoy each day as a gift.

There is much wisdom on this forum which I truly appreciate.

With every blessing,

Ian

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.

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.

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.

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.

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

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 

That’s great

Wishing you all the best 

They didn’t do the pet scan as standard practice. We paid for that after our second opinion didn’t agree about the bone mets so wanted it confirmed.

He was sent for the bone scan though as a slight something showed up on his MRI. I think some seem to do the bone scan as part of the diagnostic process but like you say maybe when PSA is higher x

Not really - if the cancer has metastasised in the lymphatic system, removing a few pelvic lymph nodes isn't going to solve it. 

Some surgeons remove a couple of lymph nodes in every RP to check whether there is any sign of cancer - if so, adjuvant RT might be offered rather than waiting for the PSA to rise. Other surgeons take a number of nodes routinely but this is becoming less common because of the increased risk of lymphodema later. And some surgeons will only take nodes where the diagnosis is T3 and nodes looked suspect on the scans.