External Beam RT and HDR Brachytherapy - my path

Good news Andy I’m really pleased to hear you’re ok.
your contribution and knowledge on this forum is so much appreciated.

all the best moving forward,

Derek

That’s great Andy. Keep up the resistance.. 

Phil

Brilliant new Andy, I hope in 5 years time I’m in your position. Your knowledgeable contributions on this forum are invaluable and it’s so nice to see you helping raise awareness. I find Maggies so rewarding knowing that perhaps I’ve helped a few new members who come in so scared….and go away with hope for the future.

Cheers to you!

Derek

Great news Andy. For those of us on a curative pathway that's where we all aspire to be (and remain). Chris

Great news Andy. All the best!

I saw your note re rectal bleeding. I'm sure you checked everything out as is your way, but my experience may be of interest. Three years after RT/LDR Brachy I started to have rectal bleeding, sometimes weekly and my confidence dropped. It didn't help being on anti-coagulants which I had started 3 years previously. Earlier this year I had a flexible sigmoidoscopy that confirmed no tumours etc, in my lower bowel but noticed some radiation proctitis. 

Then I vaguely remembered somewhere on the web where one person attributed this bleeding to eating nuts. (my thoughts that this is akin to passing sandpaper as I don't think they are digested well). I then recalled my high consumption of cashews, macadamia, brazil etc as I liked to snack on them. So three months ago I stopped eating all nuts, also ensuring nothing was in muesli etc. I'm delighted to say that the bleeding has since stopped...

Vince

You can't do better than that Andy and the 5 year mark is a milestone of course. Congratulations!

Jules

Today is my last day taking MCP (Modified Citrus Pectin). I started taking it when I was diagnosed 6 years ago. Of course, I'll never know if it did me any good. Now is probably a good point to stop anyway, but this is somewhat forced as it's no longer available in the UK except at really silly prices. I was buying it direct from Swanson in the US, but they stopped shipping to the UK, and their UK reseller is really silly prices. Fortunately, I still had 2 years stock at that point, but that's now run out.

I finished hormone therapy in Dec 2020, but never managed to lose the weight gain - actually put more on. A month ago, I was doing an awareness event in Guildford market, and bought a large flapjack to keep me going - that was the only thing I had time to eat. Spent the next few days on the toilet. Having lost some weight, I resolved not to put it back on, and so far I've succeeded. Last time I was down to 71.5kg was 3 years ago.

I also put on weight during my (salvage) HT, curiously I became most aware of it after the treatment had in theory stopped. I have lost about half that gain but seem to have found a new equilibrium - which conceivably could simply reflect a lower post-treatment testosterone level.

J-B, sorry, only just noticed your post.

MCP (Modified Citrus Pectin) was something I read about in research papers when I was doing lots of reading at diagnosis. It's citrus pectin which has been broken into shorter molecules. Normal citrus pectin molecule is far too long to be absorbed through the gut wall, so it just passes through you as fibre. MCP is absorbed through the gut, and the properties of the shorter molecules are quite different. Some research has shown that it might prevent circulating tumour cells from binding to other sites and forming mets. Trials were done on rats showing this to be the case, and unexpectedly, it seemed to also cause existing soft tissue mets to shrink (mechanism for this is unknown). Some very early trials were done in people which looked interesting, but they haven't been followed up. There's no big pharma to pay for trials on MCP because it's a cheap (compared with drugs) food supplement which is already available. Funding for more research would need to come from charities or governments.

I decided it was harmless (there have been a very few cases of citrus allergies generated), and I'd give it a go in case it was of any benefit, so I took it throughout my treatment. When I was having my template biopsy, the standard instructions are to stop all supplements, but I didn't want to stop MCP (actually I bumped up the dose). My request was sent off to a senior pharmacist, who came back a few days later and said it was fine to continue on it - the pre-op nurse said she'd never had a pharmacist say a patient could continue on a supplement before.

Basically, MCP is something which had had a little research, which looked worth continuing, but there's been no funding or researchers interested in doing so. I have mentioned it to researchers a few times, and none have ever even heard of it. (My oncologist had, but didn't have any opinion.)

I also worried in case it's one of these things that lowers PSA readings without reducing extent of cancer (like Saw Palmetto does), thereby invalidating PSA test results. However, my PSA has not risen since I stopped taking it, so that looks unlikely in my case.

I will never know if it did me any good, hence it's not something I recommend to others. Also, since Brexit, it's no longer available in the UK except stupidly expensively (more than I would have paid for it), so having finished treatment, I stopped taking it when my stock acquired pre-Brexit ran out.