Side effects of hormone treatment and pelvic floor exercises in prep for SBRT

Thanks for sharing this. I have just read it out to hubby to help him realise that he is not alone. He also suffers with PTSD which, combined with the hormone therapy, makes him extremely anxious and emotional. He knows that he overeacts at times and needs constant reassurance but can't help it. He had 33 sessions of EBRT almost 4 years ago and since then his nocturnal wanderings have reduced to once a night, unless he is stressed when it can increase to 3 or 4 times a night. Hubby had a planning scan yesterday and is due to start SBRT on distant mets next Monday - his issue is that he is going to have to stay away from home for the duration as it is too far to travel daily, so stress levels are up. Like you, his side effects are manageable and we still have a good quality of life, but are certainly more restricted in what we can do now.

I am glad that you seem to have a supportive team behind you and hope that you get some answers. I know that they do recommend not to go overboard with the pelvic floor exercises - more is not necessarily better. Have you downloaded the squeezy app which reminds you when to do them?

Hello Axel H  thanks for the update - I know where you are with the Hormone therapy - I have been on it for 27 months with another 9 to go!!

I had the issue of my Prostate growing into the urethra and restricting my pee. The answer to that was an operation called a TURP and yes it worked for me. As Alwayshope said above, don't overdo the Pelvic Floor Exercises as that can cause issues, the App is great because it tells you when to do them and how many. Again something that worked for me but not for everyone for the hot sweats is Sage tablets - after about 2 weeks the ceased!!

I hope the above is of some help - you are not alone!!  Keep us posted as how you get on.

Best wishes - Brian.

As regards peeing and getting up in the night it is a good idea to go onto decaff tea and coffee - we like strong tea and coffee and find that Yorkshire Decaff Tea, Kenco Decaff instant coffee and  either Satrbucks or Lavazza decaff Coffee for coffee machines  - starbucks Decaff for pod machine. If you can cut out caffeine altogether there are other drinks such as herbal teas you can try and rooiboos tea - I don't like them so stuck with the decaff.   Try not to drink anything after 6pm and while you are sitting down watching TV in the evening elevate your feet - you may find you then go to the loo quite a few times in the evenings - spoils a film so I tend to record so we can stop and start it but can stop the 4 or 5 times to the loo at night.  I also try to drink most during the morning having only 2 mugs of tea and one of coffee in the afternoon.  I drink water in the mornings 1 glass as soon as I wake and then one mid morning and one before lunch.

As for Hot flushes wear layers so that you can take them off to cool yourself and use sheets and blankets rather than a duvet - if you are able.  You can buy a cooling spray and use - anything that women use for their hot flushes should also work for us so take tips from them.  Sage Tablets work for some but if nothing else works you can get medication from your GP to use too.  Don't suffer in silence if a side effect is really getting you down ask for advice, or if there is a medication to help.

I found exercising all the way through my treatment including whilst going through Radiotherapy helped a lot with fatigue , mood swings and I only put on about 5lbs or so during the whole time.  I have generally eaten healthily and although I have a sweet tooth managed to only eat a couple of biscuits a day and the odd ice cream.  I became very good at restricting myself to these treats which I have carried on doing - feel so righteous ;)

I have been told since my PCa when I too was put on tamsulosin that it is one of the best, maybe the best medication.  Everyone has different experiences so always discuss with your consultant as they may be able to tweak dosages or medications to suit you if they are able to. 

When you go for your Radiotherapy then any symptoms/side effects you get should be reported to your radiologists as soon as possible because they can advise and prescribe medication to help.

Good Luck

Hi all. I’ve begun to become aware of mood swings as a side effect of the hormone treatment.
As someone who has managed to control the mood swings from PTSD and being neurodiverse (ADHD/Autism) . These side effects from the hormones are slowly unraveling all of the long-term and very expensive treatments to stabilise my moods. I was pretty grumpy with my wife and made her cry this morning. This I feel ashamed of myself and this upsets me because I think the world of her and as she has a chronic illness, she isn’t well herself! She is very supportive and doesn’t deserve that kind of treatment. I don’t feel that I get taken seriously when I mention this.  There seems to be an inability by doctors etc to understand that there’s more than one thing going on but, we just roll along with nothing more than trite suggestions of ‘have you tried mindfulness?’ or ‘why don’t you go for a walk?’ or ‘have you tried lavender oil?’ I regularly meditate and practice mindfulness that’s how my PTSD and neurodiverse issues have been controlled for years. 

Hello Axel H  - I fully sympathise with you - I have been on HT now for 27 months and still have 9 months to go!! 

I think I have had all the side effects at some point - it's not good. Like you I am a Gleason 9 and T3a and on my "dark days" I try and remember I am on a "Curative Pathway" and the side effects are something I must live with.  If you have been reading other threads on the forum you will know I had a Sh*t week last week - the HT really got to me - but I have bounced back.

Can I make a few of suggestions to you if you don't mind:

* Macmillan have an agreement with BUPA to provide free Counselling Sessions and if you think this may help -here's the link -

https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-suppor

* Do you have a "Maggie's" near you. This is a charity that supports cancer patients.and their family. You can just drop in, have a brew, a chat and get plenty of help and advice - again here's the link -

https://www.maggies.org/

* Please give our support line a ring on 0808 808 00 00 (8am to 8pm 7 days a week) The great folk there will be able to offer you some extra help and advice.

I do hope the above helps, if I can do anything else for you please come back to me - you don't have to fight this alone.

Kind Regards - Brian.

Hi Axel H, sorry to hear you and your OH’s problems. As if PCa wasn’t enough!

I know nothing about PTSD so feel free to ignore my rambling, but your note must have taken amazing strength to write, with such an open and honest account of your feelings.  You sound like a really nice guy and I hope you are able to tell your OH what you said to us.  Good luck to you both.  David

Hi Axel.

Please don't beat yourself up. I am the wife of someone with PTSD and have had to cope with the mood swings, although hubby gets more downs than ups, particularly when he is stressed. We know that you cannot help it at times and it is amazing what a 'sorry' and a cuddle can do, plus occasionally a bunch of flowers. My husband does have antidepressants which I can increase and decrease depending on his state at the time. I know that not everyone likes taking them but they do work for him.

As I said before, hubby has just started SBRT. His first session yesterday made him as sick as a dog for a couple of hours so I would ask about antiemetics (thanks Worriedwife  for the heads up). Today he's fine but off his food a bit. Next session tomorrow.

I hope your abdominal pain has subsided now. Sending you a hug.

Dear all,

Where would I find this Squeezy app I keep seeing mentioned? I think it may help me keep up with the exercise

cheers.

Hi Beerandrocks .

Here is the link to it.

https://squeezyapp.com/

Cheers