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User

Posted 28 Feb 2021 at 07:38

I had private treatment, Jacques (work medical insurance) and my case certainly went to an MDT.

As Franci was alluding to, nearly everybody gains weight during HT. You may struggle to combine HT with weight loss.

Best wishes,

Chris

User

Posted 28 Feb 2021 at 07:44

Hi Jacques, if I may explain, in your first post you posed a question about which treatment course you should follow. I answered as no one from the Radical prostatectomy side had chipped in. I do not regret my choice, it was based on my own experience of my father having RT. Unlike you I only had 2 choices so the decision was easier.

Re HT and weight loss my only experience is what I have read on here - all negative. So your best shot at shedding pounds is before the HT starts.

The surgeon I saw said keeping thin was a the best defense he knew against getting cancer and avoiding recurrence so it it would be beneficial to you to lose as much as you can.

Edited by member 28 Feb 2021 at 07:45 | Reason: Not specified

User

Posted 28 Feb 2021 at 08:48

I didn't really have any choice, as radiation would effect my gut too much (I already have colitis, albeit mild). However, from the nomograms I've seen, the best chance of avoiding recurrence is HDR. From what I recall adding HT to that didn't change outcomes very much. However, others know more about this than me, so don't take my word as gospel.

Whatever treatment you're going for, I would suggest losing weight. I can easily lose a kg a week if I want and I'm only 67kg to start with.

User

Posted 28 Feb 2021 at 09:08

Thanks for the clarification. Having read your blog what you experienced sounded somewhat traumatic. Sorry you had limited options but have somehow got through and adapted. My father died of PC. He was old school and left it too late before complaining about it (Aged 82 back in 1990). Luckily (or not?) he left me a legacy. At least caught early and apparently stable.

I totally get what HT does to a man and the body. This will require a total life changing approach - especially with diet and exercise. As standard they've already stuck me on Bicalutamide. Being a nonsteroidal antiandrogen im guessing i'm already on HT. Still, it's not impossible to lose weight, it needs a complete rethink. I read (above) someone saying about snacking. I understand snacking is difficult to overcome but it isn't impossible to overcome. When it comes to weight lose those are the things you need to overcome. Getting into the right mindset is key. Something like 'this' is a good incentive to kick start that mindset.

As said earlier, I've adopted over the last 12 months intermittent or extended fasting. Other diets didn't work. I lost a good amount of weight. 20kg. Put about 15kg back on, because I adopted my old bad habits over last 4 months. I don't do that 16/8 nonsense, but literally OMAD. Occasionally, maybe every 3 months fasted a full +48 hours - drinking only black coffee or water. Nothing else. The most enlightening occasion, which I will do again, is 120 hours. Sounds mad? It wasn't. It was actually an amazing experience. I had so much energy. Wired. Felt 'clean'. It promotes Autophagy. Cellular regeneration. Cancer need glucose to survive. Promote ketosis then cancer cannot survive. Who knows?

I guess there is logic to it. I might even try starving this cancer by fasting after tonight. Dump those standardised tablets I was given (Bicalutamide). Do a two or three week stint (easy enough) and arrange a PSA test to see what comes back. If favourable then maybe an MRI? Nothing to lose. Only gain, if it clears things.

Not sure if people know but the longest fast was 382 days. The man lost 12st. Didn't die. He had plenty of reserve energy stored as fat. This he burnt via Ketosis. We have all been conditioned to eat little but often. 5 meals a day. Snacks. Processed foods. Those ideas were bad ideas. If you are not hungry at breakfast why eat toast? Because you are told you should have breakfast? Listen to your body, but be careful. Certain foods you must avoid. There are good books worth reading by Dr Jason Fung about this for anyone who wants to look at losing weight easily.

Interesting article on fasting and Cancer:

https://blog.supplysideliberal.com/post/2018/4/3/how-fasting-can-kill-or-slow-down-cancer-cells-while-leaving-normal-cells-unharmed

Edited by member 28 Feb 2021 at 14:38 | Reason: Link to article on Cancer and fasting.

User

Posted 28 Feb 2021 at 17:44

Lifestyle changes are advisedly best as an adjunct to not an alternative to medical treatment. Fasting m,ay help but won't cure.

Don't dump the Bicalutamide tablets. They are being given for a reason as part of a protocol. If you mess with that, you reduce your chances.

Just my half pence worth.

Edited by member 28 Feb 2021 at 17:46 | Reason: Not specified

User

Posted 28 Feb 2021 at 18:19

Don't stop taking the bicalutimide tablets. Assuming you're due to have an HT injection in the next few weeks, the reason you're on bicalutimide is to prevent "tumour flare" when you get the injection whereby the tumour can rapidly increase in size. It's really important to prevent that.

Best wishes,

Chris

User

Posted 28 Feb 2021 at 18:27

To be honest I do not know as yet what course of treatment I will go for. This cancer I have was discovered only because I had a slightly raised PSA level of 3.4. I was told by the surgeon that it was likely that if I had done nothing for 5 years there would be a 100% chance I'd still be alive other than if I was killed by other means and not this cancer. This medication is given as per their guidelines on all diagnosed cases. Part of protocol - as you say. I do not see the point of taking these whilst I have not yet decided what course of treatment I will go for. I do not think they will make a huge difference to this cancer short term if I took them or not. At the moment they are doing me more harm with fatigue, hives and skin rash I'd rather not take them until I've decided what route I will take. At that point I will follow whatever instructions the specialist gives me and take whatever tablets they offer. It's early days.

Don't know why people get so excited by cancer. s*** happens.

Edited by member 28 Feb 2021 at 18:36 | Reason: clarity

User

Posted 28 Feb 2021 at 18:30

Not assuming anything. Nothing's decided. This cancer I have was only found because I only flagged a slightly raise PSA of 3.4. Once decided we'll do what needs doing.

Edited by member 28 Feb 2021 at 18:35 | Reason: Not specified

User

Posted 28 Feb 2021 at 19:25

I sort of agree with you about not taking the medication until you know what treatment you will decide on.

Prior to covid I don't think you would have been put on HT until the treatment decision was made. I can only guess that now things are being delayed by covid they are putting everyone on HT as a holding measure.

In your first post you described Active Surveillance as just delaying the inevitable. I would probably agree with you on that, but I would say that delaying these unpleasant treatments is a very good idea, of course not to the point of letting the cancer get too far advanced.

I would say that if Active Surveillance is still on the table don't start the HT. If you have already decided against active surveillance you may as well start the HT, as it will help any treatment you do have. Of course if the side effects are unbearable that is another story.

I do agree it is better to take a relaxed view to a cancer diagnosis, but sadly for some people the disease is more advanced and the prognosis not so good.

Dave

User

Posted 04 Mar 2021 at 20:07

Hi Jacques

Hope you find the solution you are looking for. Great experience on this forum. I'm sure you know >1kg weight loss per week often has negative long term effects on the body. You obviously have great will power .

Regards

User

Posted 05 Mar 2021 at 09:39

Thanks for your message but that statement is just not proven. Don't know if you realise that living has a negative impact? You die eventually.

User

Posted 01 Apr 2021 at 14:26

Update: Finally decided course of action for my PC. Switching from Private to NHS now I'm in the system. Not difficult and a 'bonus' in some respects. I will undergo Brachytherapy followed some weeks later by a course of 5 weeks of External Beam Radiotheraphy. Should start this August. From Sunday my Bicalutamide has been increased from 50mg to 150mg daily plus an additional weekly dose of Tamoxifen 20mg to keep boobs in check. Next blood test in June. Time to get fit. Losing weight, which is helpful. Not all too terrible tbh.

User

Posted 01 Apr 2021 at 17:56

Good to hear you've got a definite plan of action now. I too was on 150mg/day bicalutimide as a primary HT. It's a relatively uncommon treatment it seems, but my oncologist reckoned it generally has fewer side-effects than the injected forms of HT. I didn't have too many side-effects; the main ones were weight gain, fatigue, and for a month or so feeling that my head was full of cotton wool and an inability to think clearly. Fortunately that passed.

Best of luck for the treatment,

Chris

User

Posted 01 Apr 2021 at 20:56

Alltrades,

Here's a link to my post that summarises my experiences of HT/EBRT/ LDR Brachy. My Avatar gives a brief summary (click on the left). I felt a huge relief once I'd made my decision as it was really stressing me out deciding which way to go.

https://community.prostatecanceruk.org/posts/t26895-My-HT-EBRT-LDR-Brachy-Experiences

As an update, I have virtually no remaining side effects since my treatment in Dec last year.. Last month I had my first meeting with the consultant since the treatment. He was very pleased with the procedure and subsequent scan. My first blood test gave undetectable psa, but I think that's only to be expected as the HT is still in my system. The crux will come in my next blood test scheduled for Aug....that's when I will become nervous awaiting results!

User

Posted 02 Apr 2021 at 06:30

An encouraging read. After both Brachytherapy and EBRT how long were you taking HT thereafter? Am I right in reading you had EBRT before Brachytherapy? My schedule in August is Brachytherapy followed by 5 weeks of EBRT some 5 weeks after Brachytherapy.

Edited by member 02 Apr 2021 at 06:48 | Reason: Not specified

User

Posted 02 Apr 2021 at 08:09

The normal time to be on HT is two years, although in my case I asked my oncologist if I could stop after 18 months, and he was happy to agree because current research shows that the outcomes from 18 and 24 months are pretty much the same.

I started HT (150mg/day bicalutimide) in August 2018, had my RT in Feb/Mar 2019, and stopped HT in Feb 2020.

Chris

User

Posted 02 Apr 2021 at 10:42

Seems strange to continue HT after having had procedures. Guess there must be a reason for it although I'd like to be on it as little as possible.

User

Posted 02 Apr 2021 at 11:53

It’s because of the way that RT actually works. The radiation damages the DNA strands in both the cancerous and the surrounding healthy cells. Healthy cells are usually able to repair their DNA (this is largely why RT is split over many sessions, to give them time to do so), but the repair mechanism in cancer cells is usually faulty, so that eventually the damaged cells die. HT is continued because it suppresses the ability of the cancer cells to reproduce while giving time for them to die. This can take a very long time. That’s why men who have had prostate RT usually see the nadir (minimum value) of their PSA around 18 months after treatment.

Best wishes,

Chris

User

Posted 02 Apr 2021 at 14:54

Originally Posted by: Online Community Member

Great description, of a complex process.

User

Posted 02 Apr 2021 at 20:32

Alltrades,

You asked re. clarification of order of events.

- Feb 20. Started HT for 1 yr (4 * 3 monthly injections)

- Oct 20. EBRT (20 fractions)

- Dec 20. LDR Brachy

They used to do 18 months HT, but found that 1 yr worked just as well. Note that they have a really high throughput in Edinburgh so assume that they know what works best for them.

Explanation re HT post procedure by Cheshire Chris seems to make sense.

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