Can't sleep for worry

Hi Joe

Good to hear from you again. In some respects, we are similar travellers both having had prior HOLEP.   Like you I had a very large prostate.  I hoped it had regrown to a similar size which would explain the PSA level.  My MRI gave a size of 36cc.  This size may, however. be beneficial in relation to treatment and possibly avoiding urinary retention.

I am pleased you found my advice of use, and your further research has taken you forward.

Re Cyberknife.  You may wish to check things out, but like brachytherapy, I am not sure if both are possible after HOLEP.  I have no specific references, it was just something that may have registered en passant.

I am envious of the speed of your tests.  I have had my MRI (sans gadolinium) but then have a 4-week wait (2 weeks to go) for a transperineal biopsy (which I had to push for) then 5 to 6 weeks for the results.

My preference would be for active surveillance but given my last PSA of 13.37 and a 14mm tumour this may not be possible.  Like you, once I have the biopsy results, I should be in more of a position to decide.  At this moment in time, I am 100% against HT.  It scares me more than the RT.  In my region, there is no choice of specialist or hospital.  You have to accept what you are given.  In the case of RT, IIRC at my local hospital it is VMAT IMRT.

I did explore private HIFU, and the new 5-day RT with no HT at the Royal Marsden.  The HIFU is around £20k the latter starts at £30k plus other hospital expenses.  I wouldn't anticipate much change from £25k to £35k respectively, once travel and accommodation were factored in.

Given that I am ambivalent about the HIFU and there is possibly not a great deal of difference between modes of RT therapy other than treatment duration, it would be difficult to justify the costs.  I would add that I have not as yet undertaken a more than simple first look at the different RT modes and results.

I have spent a little time trying to separate HT from RT treatment, and so far have not found anything really definitive.  As you seem a bit interested in the no HT option please let me know if you discover anything on this subject should you decide to investigate further. 

Have you looked at the NHS Prostate Predict Tool?   https://prostate.predict.nhs.uk/tool  Useful when considering conservative versus radical treatment (which may be more relevant to you) and the associated timeline of side effects for each option.  In my case, and if conservative treatment was possible, there is about a 3% gain in opting for radical treatment over 6 years.  It makes you think!

My wife bravely used a similar nomogram to inform her decision regarding not to opt for AI (aromatase inhibitors) for BC.  There are distinct similarities these hormone therapies have on the female and male bodies.

Joe,  I would be interested in your stats to make comparisons, and possibly swap notes on the way forward.  

BW

D

HI D,

I’m unsure if you have access to a medical library, but:

Conclusions: Patients who received RT as definitive treatment for prostate cancer after prior HoLEP had low risk of serious acute and late side effects. HoLEP can be safely performed and should be considered in patients with significant bladder outlet obstruction and large prostate volume before RT.

Laughlin, B. et al.  (2023)  “Toxicity and outcomes after external beam irradiation for prostate cancer in patients with prior holmium laser enucleation of the prostate: Early experience.”  Cancer Rep (Hoboken).  Available on: https://pubmed.ncbi.nlm.nih.gov/35790091/

 I'll ask the consultant for sure today, but he was the one who brought it up when I had my first consultation.  I'll let you know what he says.

Joe

Hi Joe

Just a quick random search brought up this video.  At 10min 20secs approx, it verifies they have to be more 'thoughtful' with treatment after HOLEP.  It can be more challenging - particularly for surgery - as I said previously.

https://www.youtube.com/watch?v=G77lXZzV484&t=639s

D

Hi D.  I had my appointment with the consultant.  It was pretty much as I expected.  My overall Gleason is still 3+4, but some of the core samples were 4+3, so off active surveillance and headed for treatment. I had discussed possible treatments at our first meeting, and after doing further research, I think Stereotactic RT is the best route for me. It was the consultant's suggestion in the first place.  I've been referred to the Royal Marsden in Sutton, Surrey.  I did ask specifically about HoLEP and RT.  He said that often they do HoLEP first to de-baulk the prostate and then about a year later do the Stereotactic RT.  This also goes along with some of the things I've read as well.  I'll ask again when I see the uro-oncologist at the Marsden.  I'll definitely have a look at the video as well.  One thing is for sure, though, the Marsden seems to be leading the way in this treatment.  It will still be up to them if I'm offered the treatment, but the consultant I saw today seemed pretty confident.  I'm super exhausted now, but will do a general update first.  Then I'm going to his the sack.  Thanks again for your interest and support.

Hi all.  I wrote an update to D, but I thought I would offer a general one all of you that have been supporting me over the last few weeks.  I had my appointment with the consultant after by biopsy two days ago.  It was pretty much as I expected.  My overall Gleason is still 3+4, but some of the core samples were 4+3, so off active surveillance and headed for treatment. I had discussed possible treatments at our first meeting, and after doing further research, I think Stereotactic RT is the best route for me.  I've been referred to the Royal Marsden in Sutton, Surrey which seems to be leading the way in this treatment.  It will still be up to them if I'm offered it, but the consultant I saw today seemed pretty confident.  I'm super exhausted now.  Going to his the sack.  Thanks again for your interest and support.

The following may be of interest re SBRT  www.uclahealth.org/.../sbrt-prostate-cancer

Are you opting for 5-day tRT without HT? ie

https://www.astro.org/News-and-Publications/News-and-Media-Center/News-Releases/2023/High-cure-rate,-low-toxicity-maintained-with-short 

I have to investigate further re the implications of HOLEP and RT fraction.  I tend to speed read and cover ground quickly., but superficially.  I did come across something of significance concerning ED and the continence effects of higher fractionated RT after HOLEP.  I will have to try and find it again for a more focused investigation. 

D

Hi Joe2005,   Sorry to hear about your case, just wish I could address the whole forum, with mine, but briefly, very briefly, my brother apparently died of PC , and i had not been informed about it by him, so this got me seriously researching the topic, as I am allegedly more prone to the same situation, wellI have read so many medical reports on the top, I could write my one book, Time passed by and eventually my yearly check showed a higher PSA than normal ( explain normal to me please Dr ) no chance, needed to get things moving right away, bone scan, DRE, Mri, and on and on, well having read and learned so much about the subject, I questioned the medics on every thing they told me about. I informed my GP that I was to make a complete lifestyle change, he was not interested in the least, so I now run my case, with much less input from the medics now apart from my 3montly PSA tests, which now sit about 9.5 but it is not an accurate figure to base a prognosis, just a medical reason to feed the Pharma industry more money, well not from me. MY LIFE IN MY HANDS from now on, four and a half years later my PSA has hardly changed, I am fitter, healthier, mentally brighter than ever, and hope to continue for a while yet. This has not been an easy rout to take at all, dedication, a nd the will to keep going spur me on, sorry I said brief, well I just can't stop and there is so much more I would like to say, BUT I am controlling my PSA by what i am now eating, believe it or not, no more processed foods, no dairy, no cakes, no sweets, no cheese, etc etc, I have gotten used to eating completely different now, and I feel great, so dont you give up, believe in yourself, and ask questions, Take care

That's an interesting post Oliver.

Like u when I was diagnosed in 2013 I cut out as much rubbish as I could particularly sugar and some dairy , red meat.

Treatment started in 2017 and now 10 years later things look OK and I have further cut back on sugars, no biscuits/sweets etc, etc, 

The worry always is that the cancer can return and I have read so much about how sugar feeds the cancer.

As a matter of interest what are your PSA readings since this all started for you

Thanks

Steve

Thanks Grundo for your response, always thought no one would show any interest  really, as I am told by I have said in my previous comments, I have so much to inform the general public about PC I could write a bookothers my method of personal treatment would appear out of Kilter with the majority of persons, both patients and medics, because I question everything they tell me, and I mean everything, even if you have an MRI scan, my medics would advise the use of a contrasting agent, to give clearer images, so I asked, what would you be adding in the scan process, a product named Gadolinium but that comes in packaging with a skull and crossbones on it doesn't it, no reply, so I asked how would I get rid of it out of my bloodstream, his answer you would simply pee it out he replied, how much would come out I asked, about 99 percent, what about the other 1 percent, no answer, so I told him, that stops in ones brain, he looked bemused. I also have very controversial views on Hormone therapy, but just in case I may offend you, I shall say no more, unless you ask me to, as I have said earlier, I could write a book on the topic.

Since my diagnosis, and I knew I would get a diagnosis, Strange, research showed me that over 80 percent of guys get it, a lot do not show symptoms, throughout their lives, others is it more serious, but a Is have said, my life is just great at present, mentally and physically, and i wonder why the majority of patients have to feel so down about it, that sounds a bit selfish I know.

Since I changed my life plan, I have lost over 3 stones in weight, got off Statins for Cholesterol, no high blood pressure medication, ( Last week my BP readings were 115 75 76 ) testerone levels ok ( another controversial issue )

I see the problem with it all a being around blood, food, lifestyle, fitness, might be totally wrong, who knows, certainly not the medics, just in it for pharma reasons, and NHS targets.

Anyway, enough of me blathering on, sorry, I have not as yet had any medical intervention, my PSA at present is 10.1 up from 8.6 four years ago

Another saying I have is " I dont mind dying, but I dont want to be the cause "

As a final thought, why is not more money put into researching the cause, and not so much on the cure, think about it ? money loses and influences to me.

Take care

I would say fairly unusual to have a PSA going up from 8.6 to 10.2 in 4 years.

Mine went up from about 4 to 12 in 4 years.

Possibly your  diet a lot to do with that.

Not sure if u have had a Mri  but would be worth having one at some point  mainly to see if anything showing and if so size.

Regards

Steve