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User
Posted 01 May 2022 at 20:55

I have just been diagnosed with localised aggressive PC and am faced with the difficult choice of surgery or RT with HT

I am a fit and active 58 year old -gym 3/4 times a week and golf twice a week-with a relatively young family

Big concern other than the obvious, is quality of life during and post treatment and would appreciate any guidance/experience please 

Also, I have read in a thread about Proton Beam treatment and would welcome any further info

thanks

 

User
Posted 02 May 2022 at 08:18

Hi Joe, could you post your PSA, stage, Gleason score and if the lymphnodes and bones are clear?   That will help the more experienced member to give you advice.

Otherwise there is also Brachytherapy (both LDR and HDR) as an available treatment and there is the Vitus Klinik in Offenbach Germany doing Nanoknife (but that is private) plus other treatment options are HIFU (I think there are 6 hospitals in the south of England doing that on the NHS and cryotherapy.

Wishing you all the best

 

User
Posted 02 May 2022 at 09:01
Both treatments have excellent long-term success rates, so it really does come down to a question of which set of side-effects you find less objectionable. If you haven't already done so, download the information sheets from this website.

Personally I went down the HT/RT route (strongly recommended in my case) and found it all very tolerable.

Best wishes,

Chris

User
Posted 02 May 2022 at 09:07

Hi

Thanks DW and Chris so much for your replies.

I am T3a and Gleason 9 and am having CT and bone scans this week although they have indicated that they are reasonably confident that these should be ok.

I guess like everyone I hope any of the treatments will do the job, and I am trying to figure out best option for quality of life post treatment, particularly for my young family.

thanks for the help!

 

User
Posted 02 May 2022 at 09:23
With a T3 diagnosis RT is likely to be your best option. There's a very high probability that surgery will not remove all the cancer and that you'd subsequently require RT anyway. Why end up with the side-effects of both surgery and RT when you can go for RT in the first place?

Best wishes,

Chris

User
Posted 02 May 2022 at 09:27

Hi Chris 

thanks for this which does make sense and kind of confirms my initial thoughts.

cheers

User
Posted 02 May 2022 at 12:18

T3 G9 and diagnosed in the 50s is the same as me. I had HDR beachy, EBRT and HT for two years. Very few post treatment side effects, two years of HT is bearable, your wife may miss the sex. If you keep going to the gym you will lessen the chances of fatigue and weight gain. I would be surprised if you were offered surgery.

Dave

User
Posted 02 May 2022 at 15:06

Thanks Dave!-that’s good to hear.

Obviously the issue of side-effects will play a big part in my decision moving forward and your comments certainly seem to reaffirm why I’m beginning to think would be the right course of treatment for me so much appreciated!

 

Obviously the issue of side-effects will play a big part in my decision moving forward and your comments certainly seem to reaffirm why I’m beginning to think would be the right course of treatment (although not happy about the sex issue!!)for me so much appreciated!

cheers

 

 

 

User
Posted 02 May 2022 at 15:20

Can I ask if you have any further info on the Nanoknife treatment please as sounds interesting 

thanks

User
Posted 02 May 2022 at 16:23

Hi Joe,  if you google the Vitus Klinik in Offenbach, Germany you should find their web-site.  They do deal with international patients (I looked into this as a possible treatment for OH, but he refuses to spend the money) or you can try and google University college London hospital as they have an information sheet on their website. You would need a referral from your hospital.

User
Posted 02 May 2022 at 16:39
Joe, I don't think you'd be suitable for Nanoknife at T3. Check by all means, but I'd be surprised if you were!

Cheers,

Chris

User
Posted 02 May 2022 at 18:01

Thanks!

User
Posted 02 May 2022 at 18:02

Thanks Chris - I thought that may be the case but will make a call to check 

User
Posted 02 May 2022 at 20:41
Joe,

If you are being offered surgery they must feel there is a good chance of removing all the cancer and if this is the case you might be a suitable candidate for Focal Therapy of which Nanoknife (Irreversible Electroporation) is one possibility. Much would depend on the position and extent of the tumour. Few hospitals are able to offer it, so it is rarely mentioned.

You also mentioned Proton Beam. The only places that are able to offer this in the UK, to the best of my Knowledge are The Christy in Manchester, UCLH in London, if they have their Cyclotron in operation yet or some of the Rutherford Centres. Proton Beam has theoretical advantages over Photon based RT and indeed has proved very effective for some cancers but the few comparative trials have not demonstrated advantage for Prostate Cancer.

Suggest you download or order a hard copy of the 'Tool Kit' that not only provides more information about the disease but gives the pros and cons of various treatments, although you will not necessarily be suitable for all.

Barry
User
Posted 02 May 2022 at 21:39

Thanks Barry-that’s an interesting point which makes sense.

I’m meeting with the surgeon and oncologist on Wednesday so can ask them but will also download the toolkit and maybe contact UCLH myself 

thanks again

 

 

User
Posted 03 May 2022 at 02:35

With a G9 T3a, I would be asking about HDR Boost (HDR Brachy, plus external beam radiotherapy to prostate, seminal vesicles, pelvic lymph nodes) and hormone therapy. This is a good compromise between hitting the cancer hard, but generally not excessive side effects. The external beam RT is done at a reduced dose and serves to mop up any micro-mets (mets too small to show on scans) which have gone into seminal vesicles or pelvic lymph nodes. The HDR brachytherapy boost takes the dose given to the known cancer in the prostate to a high level, with the intention of ensuring none of it escapes.

I was not such high risk as you (G3+4, T3a, PSA 58) and went for this at oncologist's recommendation. At 3½ years since diagnosis and 2½ years since radiotherapy, I would almost not know anything had been done. There are no guarantees of course, and it's still too soon to know how well the treatment worked - it will be another year probably before I know that. But I would say I'm in much better shape than I ever imagined I would be at the outset, and everything still works (except no semen, obviously).

I found the hormone therapy OK for a couple of years (they'd probably want you to do 3 years because of the G9). You have to exercise to maintain muscle and bone density, and you have to do penile physio if you want that to work again afterwards. Some people do get it bad, but most cope knowing there's an end-date. (It's much more of an issue if you're on it lifelong.)

User
Posted 03 May 2022 at 10:24

Thanks for the reply which does help 

can I ask why you chose this route rather than surgery?

User
Posted 03 May 2022 at 21:02

Hi Joe, yes, you can ask anything.

I went in originally, naively saying I wanted it taken out. They recorded that as my preference (I didn't know that until much later, when I got a copy of my medical records). Each time I saw a consultant (I ended up with many appointments over a long diagnosis), they always updated me on prostatectomy, but also told me about radiotherapy. I asked about nerve sparing, and was told unlikely given it was quite widespread in the prostate. They also thought there was a significant chance I'd need radiotherapy afterwards, incurring both sets of side effects, so why not just have radiotherapy in the first place? I had actually already decided on radiotherapy, but I didn't think to say I'd changed my preference.

When I was passed over to oncology, we talked about HDR Boost, and joining the PIVITOLboost trial. My oncologist thought, as a high risk patient, it was important I did one particular arm of the trial which is not something you get to choose on the trial (it's a random choice), so they treated me according to that trial arm (which was one of their standard protocols anyway). The specific part I went for was including pelvic lymph nodes in the external beam treatment at a reduced dose, supposedly to mop up any micromets (mets too small to show up on scans), given that's where they expected the cancer to go next in my case. They said it was rare to get any long term side effects from doing this. Also, it was thought erectile dysfunction might be less with this route than with doing it all as external beam (and that's already less than with prostatectomy). I did make it quite clear that sexual function was quite important to me, and I've been lucky in that respect - everything still works fine, and rather unusually, it mostly did all through the treatment too except for loss of libido and more difficult to orgasm.

I do actually have a long term side effect, rectal bleeding from the radiotherapy. In my case it's minor, painless, and causes no incontinence, so no impact on quality of life. I'd still make the same choice again.

User
Posted 03 May 2022 at 21:58

Thanks Andy-that’s really helpful!

I will use your experience when I talk to them tomorrow for the first time, and I’m now thinking given my stage, that an op might not be the best option.

Very interested to hear of your experience re sexual function which is likewise a big consideration for me so that is great to know.

Thanks again 

User
Posted 04 May 2022 at 14:02

 

Hi Andy,

I have just returned from consultations with both the surgeon and the oncologists and rather weirdly the oncologist has prescribed exactly the same course of treatment as you had

The surgeon suggested that as a man in his late 50’s he would recommend I had surgery asap

So may I ask how old are you?

Hope you don’t mind but obviously now trying to make a crucial decision as to whether I have surgery quickly or go down the same path as you which seems preferable given your comments on side effects, etc.

thanks again 

 

 

User
Posted 22 Sep 2022 at 15:05

Quick update…been on hormone therapy since end of May this year and pleased to report little side effects, other than small weight gain around waist which has been mitigated by exercise. Actually, I find the regular exercise very beneficial in terms of positive mindset and generally wellbeing.

I had my brachytherapy operation last Friday which went very well-went to hospital at 7 am, admitted at 7.30, had a spinal anaesthetic at around 10 am followed by operation immediately after. Returned to day ward for lunch and down to radiology dept at 2.30pm for actual HDR treatment which took 45 mins. before return to ward for rest of day and night, before discharge at midday the following day. 
I found the whole procedure relatively straightforward and painless (a little sore around the wound but nothing major at all) and have been able to return to work within a couple of days.

I will now begin 25 days of radiotherapy at the beginning of next month so we will see what that brings 🤞

Hope this insight may help anyone facing the tough decision on which way to go treatment wise

 

User
Posted 22 Sep 2022 at 15:31

Thanks for the update Joe. That all sounds similar to my treatment. RT was no problem, it is disruptive to the working week, but that was the only problem for me. Presumably you will be on HT for another two years.

Dave

User
Posted 22 Sep 2022 at 16:19

Hi Dave

Thanks for the reply-good to hear you had little problem with the RT 🤞

On HT for two years as you surmised but so far so good

cheers

 
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