New to this and a bit lost

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

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!

Hi Chris 

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

cheers

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

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.

Thanks!

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.

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.)

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.

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 

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.