Help with next steps...

I think I am set on the surgery as it seems to give the best possible outcomes. I think I read that RP is more effective than bracy, and with a gleason 9 I am in no mood to mess about and will just have to roll the dice when it comes to future erections. I will ask them about why the RT on top, I haven't got much beyond the whole surgery thing at the moment. 

About the HT, they mentioned moving me onto a 6 weekly HT injection after the surgery, which I guess would be the full dose HT? Not getting much in the way of side effects after 10 days on the 50mg bicalutamide, apart from feeling dog tired around about 6pm. Does the 50mg slow progression down like they say? My main concern right now is to get the cancer out before it spreads, and if throwing money at it might help then I would do that. My NHS surgeon seems to be pretty good, he is the head guy there, so maybe waiting a few extra weeks for someone with a good track record is better than rushing through with the soonest available private surgeon?

My understanding...... My prostate was like a dye-soaked sponge. Where it rests on the prostate bed, some cancer cells can leach out into surrounding tissues. My radiotherapy was to the prostate bed and several remaining, nearby  lymph nodes.

If you did want to explore going private, it might be worth asking your urologist's secretary whether s/he does private work and whether it would actually be any quicker. My husband went private but not due to speediness, simply that he wanted the surgeon who was already looking after my dad, father-in-law and mother-in-law ... it is good to keep it in the family 😂

What we didn't realise was that going out of the NHS meant we had no access to a clinical nurse specialist or any district nursing care, no right to incontinence products and it was a huge battle to get back into the NHS for referral to the ED clinic. As self-funders, we pay about £300 per consultation (4 per year), £75 for each PSA test, I think the op was about £8000 with hospital inpatient service, food, physio, anaesthetist charges, etc and I can't remember how much the last scan was. John was fortunate that they allowed him to have his RT on the NHS but we still pay to see the oncologist. It all adds up to a lot of money over the last 9 years and we will continue to pay for as long as J is around.

When Dad had his RP 20 years ago, it cost him about £18,000 because it was still experimental. He still sees the surgeon privately but only once a year if he can help it. Dad has never had any support from the CNS. It is a postcode lottery though; some members here have been able to have the op privately and have then had great support from their district nurses, etc so if you are seriously considering it, ask how the after care works in your Trust.

I've had all my PSA tests done at my GP's surgery with zero hassle (and zero cost), and now my private medical insurance is about to end due to my forthcoming retirement, transferring to NHS follow-up care involved nothing more than my consultant asking his secretary to move me from his private to his NHS list. It really couldn't have been easier.

Best wishes,

Chris

It's not that simple. Surgery (RP) and radiotherapy (RT) broadly have similar outcomes, but there are situations which make one better than the other, and you might factor in the different side effects too as some may be of more concern than others to you individually.

RP tends to be good for patients able to handle surgery, and for cancers which are contained (T2). If the cancer in the prostate is located away from the rear and lower prostate capsule surfaces, nerve sparing is likely to be possible, enabling recovery of erections, at least to some extent in most cases. RP is not likely to work if the cancer is right up to or past the prostate capsule (T3), as it won't remove the cancer which has likely escaped into the prostate bed (T3a) or seminal vesicles (T3b).

RT on the other hand treats both the prostate and the area around the prostate, and is thus better for T3 staged cancers. It's also more suitable for patients less able to tolerate significant surgery (i.e. more relevant as you get older). It is less likely to impact erections immediately, but can do so many years later. It can also cause bowel problems, almost always after treatment for a couple of weeks, but can do later too, and less commonly, bladder problems. It increases the chances of other cancers decades ahead, which is is something to consider if you're younger (as you are).

Having both RP and RT means you get both sets of side effects. I would ask why that's being recommended, rather than just RT (maybe two types, External Beam RT (EBRT), and Brachytherapy). That way, you get just the RT side effects. If they think there's a good chance it's a T3, they will require you to have at least RT, because RP alone won't give you significant remission if it's T3.

OK, so you are taking the 50mg bicalutamide to prevent a flare when you start an LHRH agonist hormone treatment such as Zoladex, and maybe to give some slowing as the Zoladex is being delayed until after RP. Zoladex injections are 12 weekly (although the first one might be a 4 week dose), or Prostap is 3 monthly.

10 days is too soon to see most of the HT side effects. I created a list of HT side effects which hit me, and ones which haven't hit me (at least, yet), which you might find interesting.
https://community.prostatecanceruk.org/posts/t21321-Hormone-treatment-lack-of-support-from-NHS#post216465
Everyone is different and will get different of the possible side effects, and after different periods of time, but it might give you an idea. In my view, it is well worth knowing what the side effects are, because some can be worked around. Some of these won't happen on the 50mg bicalutamide dose (ask me if you want details), only when you move to Zoladex. Here's a more generic list of HT side effects with more description of each one and workarounds:
https://community.prostatecanceruk.org/posts/t21321-Hormone-treatment-lack-of-support-from-NHS#post216433

The 50mg bicalutamide will at least slow the prostate cancer, but it's really so you can start the injections, which should stop it, at least for some time. HT makes the RT much more effective, which is actually the main reason it's given, usually for 3-6 months before RT and 18-36 months afterwards. Prostate cancer mostly grows slowly anyway, and even a month or so waiting for RP without any HT (for those having just RP) is quite normal and not of any concern.

Exercise is something else you should look at. There's now plenty of evidence that it slows progression of prostate cancer, and reduces many of the side effects of HT. You probably won't be able to exercise for a while after RP though.

Edited by member 01 Jun 2019 at 09:57  | Reason: Not specified