Can't sleep for worry

Hi Grahame (Oliver).  Apologies for my tardy reply.  I decided to go offline for a while.  Reading forums, researching treatment plus all the bad news in the world was really beginning to bring me down.  A bit overwhelming.  In answer to your question, I am 62 and was diagnosed with PCa when I was 59, having previous been diagnosed with Benign Prostate Hyperplasia (BPH) about 1 year and a half earlier.  At my BPH diagnosis, my PSA was 7.8.  My prostate was large (not a world record), about 70 gs.  I did not have significant LUTS, so no treatment but annual PSA checks.  Given the size of my prostate, I was told that even a PSA of 10 wouldn't be a worry. 

A year and half later, I asked my GP to check my PSA - I was having blood drawn for an unrelated problem so it made sense to tack it on.  She did and it came back at 14.8.  She pushed the button for NHS rapid assessment.  Two weeks later (this was during the pandemic) I had a phone consultation with a urologist that said my PSA has dropped to 9.8 (good news) and that they found a lesion (not do good news).  He was recommending robotic radical proctectomy as soon as possible - there were openings for pre-ops the next week and surgery the week after.  He did not recommend radiotherapy for a number of reasons, but mainly because I was young and if the cancer came back, any further surgery could be very tricky with serious incontinence and almost certain ED as a side effects. Kind of made my head spin. 

There's been a lot of cancer in my family (like you) - grandmother, sister, nephew, including the breast cancer that eventually took my mother.  So I took his recommendation; a big package of info from he Royal Marsden in London arrived a couple of days later.  A day or so later, he called again saying that they had had their group meeting and decided that a biopsy and most likely active surveillance was the best course of action considering my age and that my Gleason was 3 + 4.  The rest of my trip is scattered amongst my other posts, except to add that when I had HoLEP to relieve LUTS a year ago, my Prostate was 80 gs.

I add in the this information just to put my thinking on a few of the points you've raised into perspective.  Firstly, your PSA has been creeping, but not soaring.  I don't know how large your prostate is, but 8 to 10 might not be that much of an increase.  As other's have said, your regime may well be keeping your PSA down, which is great.  And PCa is often a slow growing variety. 

Big Pharma isn't making much off of me, expect for over the counter stuff like paracetamol, and topical stuff when I was catharised...except for a single course of Tamsulosin, to help ease my plumbing problems after a nasty case of prostatitis after my second biopsy.  I kind of tilt my head and scratch my chin when I read about conspiracy theories and collusion between medics and big pharma.  Drug fees are negotiated by the NHS and generally speaking are a fraction as they charge, say, in the US (poor sods).  But coming from a business background, much is possible when there's a bob or two in the offering.  One never really knows.  So I certainly accept your point of view as your experience and point of view...My Dad used to say 'whatever floats your boats' 

There are positive papers and info on reliable sites about Hormone Therapy, not a cure but as a treatment for PCa, particularly Stage 4; a friend recently was diagnosed with Stage 4 PCa and has had an excellent result - just one case I know.  However, Like D, it's not for me.  Not now, anyway.

The thing is, the reason I've been reading this forum, and why I posted this thread in the first place, is because I value the experience, input and support of others.  Especially when I'm in a muddle or stressed out.  It really helps.  And having opposing or unconventional opinions often helps me to challenge my own thinking, which is very important.  Thanks Grahame.

Hi Joe

I note like me you are not keen on HT.  As part of your research have you found anything of significance you can share?  I find that information is pretty thin on RT without HT, particularly the % gain with HT.

D

Hi D.  I'm seeing the oncologist today. I'm a nervous, to be honest and had another restless night.  I will post results of the meeting later. 

In the meantime, here is the summary of the results from PACE-2, research undertaken my the Royal Marsden, on Stereotactic RT via Cyberknife.  https://www.icr.ac.uk/media/docs/default-source/default-document-library/pace-b_efficacy-results_general-sumary_-final58ee5acb659564f3a772ff0000325351.pdf?sfvrsn=c27b3e69_0

This was conducted without HT, and the results were good.  Incidentally, from what I've read, LINAC, and MR LINAC treatment have very similar outcomes to Cyberknife, but have slightly higher incidences of side effects; both appear to be infinitely less invasion with far, far few side effects that radical prostatectomy.  The main problem being availability of treatment centres.  Each time I read about this, I feel so bless to be living where I do.  The closing line of the summary linked above says it all: "We recommend that this new SBRT treatment should be made available to everyone with this type of prostate cancer and that it should become standard of care." 

I do not want to get political at all, but I'm hoping that the government which has been underfunding the NHS has a change of heart.  And if it must be looked at in pure financial terms, while the cost of 'tooling up' is high, it is far less expensive than cheaper treatments and then managing ongoing side effect for years afterwards.  However, everything is changing really fast.  While I do not believe that the rate of change is due to a seditious collusion in the medical-industrial complex, i do think it might be because of over cautiousness to invest in 'the next big thing.'  It's just a thought. 

From the things I've read, HT has been given for two main reasons: 1. to control PCa that has metastasised outside the prostate and into lymphs, bones, liver, etc.  2. To improve the efficacy of RT, robbing the cancer of Testosterone which has been proven many times over to accelerate PCa growth - kind of a one-two punch.  You're right...there isn't a lot of data or papers written on the subject.  I think this is in part to changing ideas about, primarily, radiotherapy.  Anything published before, say, 2015 is pretty much out of step with current thinking for low to medium risk cancer.  Stereotactic appears to be the way forward - there are multiple sources on this and pretty easy to find on Google scholar.  IMRT + HT is cracking the proverbial walnut with a sledgehammer.  Both, especially HT, seem to be limited to stage 4, where 'cure' is highly unlikely, but both can manage the PCa for ever increasing amounts of time.  I have a friend with personal, positive experience with this.

Anyway, that's where I'm at for the moment.

Thanks again to everyone, once again, for the care, concern and support you've offered!

Hi Joe

Hope all went well today with the oncologist.  You will probably have your treatment plan when you report back.

Thanks for the PACE B reference.  I have looked briefly at it in another format.  This one did mention standard RT without  HT as having much the same outcome as the SBRT without HT.  They obviously had to stndardise the control without HT for comparative efficacy.  IIRC from another paper, the SBRT group had a 96% PCa success rate whereas standard RT (IMRT?) had a 95% success rate.

I noticed in this paper that there was slightly more urinary irritation but less bowel irritation in the SBRT group, and the converse in the IMRT group.

Importantly, both groups had virtually the same outcome at 6 years, and without HRT.

This higher Gy over 5 fractions seems to be following on the heels of what they have already been doing for a few years, with breast cancer.  

I think the experimentation with these reduced treatment times may be due to cost pressures in many instances. I have personal experience of this in another context, and I believe it definitely originated as a cost pressure.

I previously contacted the Royal Marsden and they said that  "the 5-fraction stereotactic radiotherapy for private treatment of prostate cancer will be administered via either Cyberknife or MR Linac machines".  In 2021 there were only 2 MR Linac machines in the UK, and one of them was at the Royal Marsden.

Re your comment on HT for stage 4 PCa, I think they also give it for concern over possible micrometastasis in lower grade PCa.  It is a general concern with all cancers, like low-grade breast cancer for example, which can pop up again decades later, as in Olivia Newton-John.  It is a bit of an individualised lottery as to how our bodies deal with potential micrometastasis.

Again there are similarities with breast cancer where women are given endocrine therapy and aromatase inhibitors in conjunction with surgery and radiotherapy.  These drugs can also have a deleterious hormonal effect as in men, but with emphasis on oestrogen rather than testosterone.  As with men, many women can't tolerate the endocrine therapy due to physical and QOL issues and end it early or opt-out.  Both men and women have to undertake their personalised risk/benefit analysis., and there's the rub!

BW

D

Hi all,  Just to update...I had my consultation with the oncologist.  She was super nice and very informative.  Going forward, I will be having radiotherapy on the MR LINAC unit at the Royal Marsden in Sutton, Surrey.  I had originally hoped that I would be eligible for the new Cyberknife, but after HoLEP surgery last month, my prostate has shrunk.  It needs to be a certain size in order for gold 'beads' to be inserted that the machine tracks when administering the radiation.  MR LINAC has similar results, but it does mean treatments are a bit longer, about 45 to 60 minutes, and I need to lie on the MRI table for that long.  There are still 5 treatments, spread out over 2 weeks; about every other day.

Because a couple of my core samples from the biopsy are  4+3, I have been offered HT, a 6 month course.  I don't have to have HT.  The curative rates at 5 years run for me, given all of the variables specific to my case average 96% with HT, 92% without.  There are some things about me that make HT unattractive...they are hard for me to share.  I think I'm going to turn it down.

Anyway, I was told that HT causes the same side effects that menopausal women endure like hot flashes and mood swings, emotional instability.  But in men, there's also weigh gain, impotence (which should dissipate once treatment is finished), potential osteoporosis (unlikely for the short course I will be offered) and other minor bits and bobs.   

This is all going to move pretty fast from here on.  I'm having a load of tests tests, starting next week to establish baselines before treatment.  I'll have another meeting with the consultant before treatment begins.  It's all becoming very real now.  I'm struggling with it all.  I find it difficult to shake everything off.  The kind folks at Maggie's suggested that I speak with an oncology psychologist, which i am going to pursue. 

Here's the deal, right...there are many, many positives.  I am trying so hard to focus on them.. But for some reason, I'm still feeling pretty low.  And not sleeping very well.  Thinking this all through has been over whelming.  We'll see how the next few weeks go.  I'll keep you posted.  Thanks, every one, for your continued support.

Hi Joe

I think that things are looking ok, I assume that tumour is contained within the gland especially as HT is being offered as an option.

If they are offering that then obviously a low key affair so excellent chance that will be successful.

I think you'll be ok , good luck for when the treatment starts, let us know if u have any more questions.

Best wishes

Steve 

Hello Joe2005 

Thanks Joe for sharing. I fully understand just where you are at - you have had this journey building over the last 3 years and it's here and about to start - and you don't fancy taking the plunge 

It's not uncommon and there's no shame in it - in fact you are brave enough to put your fears down and share them within the Community.

I am aware that you are going to seek help from an oncology psychologist - why not give the team on our helpline a ring on 0808 808 00 00 (8am - 8pm 7 days a week) - I am 100% sure that they can sort you out with a little extra help you need to see you through this.

We as a Community are with you on this journey - we've all worn the T-Shirt at some time (I've still got my hormone one on!!).

If I can do anything else for you just let me know. keep us posted as to how you get on.

Best wishes - Brian.

Thanks Steve.  Yep, the cancer is still within the prostate and pretty well defined, so they are expecting a good result. You and Millibob were two of the first people to respond to my original post and I greatly appreciate both of your comments here.  I realise that no one has a completely smooth ride when it comes to PCa.  I've had a few bumps along the way, so I think it makes me wary of unknow factors.  I'm hoping that in about 2 1/2 months I'll be in a much better place.  Many thanks, once again,  Cheers, Joe

Thanks, as always Brian for your insights and calmness.  I also greatly appreciate that you've been following along since the beginning certainly with comments, but also with subtle reminders you're still there by liking posts.  I draw immense comfort from this.  I'll also do 'my story' thing you've mentioned.  I'll have a little down time so I'll take advantage of it.  I'll let everyone know how things progress.

Cheers

Joe