After Effects of Radiotherapy and Hormone Therapy Are my Experiences the same as yours?

Hello Seeking Clear Horizons 

I don't think there's such a thing as a "daft" question. We are all on this journey we didn't want to take and for me after 3 years everyday is a school day.  In answer to your questions (and this is how I feel)

1 - I wasn't the fittest person when I started my 3 years on HT (like you Decapeptyl - 6 monthly jabs) and having just completed my 3 years on HT - I am not as fit as i was 3 years ago. I can walk about a mile before the aches and lower back pain start - My GP tells me it's a combination of old age, RT and being overweight - he agrees my weight increase is a direct result of HT as it's all in the last 18 months of the 3 years HT. I am 69 years old. His advice, keep on the Calcium and Vitamin D and keep walking - further if possible!!

2 - I haven't had any pain in either the breast area or nipples, but the nipples are very sensitive. I have, however a lovely pair of "moobs" (thanks NHS!). In all honesty the "moobs" don't bother me.

Sadly the only indication of RT being successful is a lower PSA which should reach it's nadir (lowest point) 18 months after RT has been completed - the side effects (if any) can manifest themselves any time in the next 20+ years!

I think I would be composing a list of questions for the Consultant on 10 December 2024.

Best wishes - Brian.

Hello again Seeking Clear Horizons . No questions are daft so keep asking them. I think the decapeptyl is contributing to the joint and muscle pain as well as the tender nipples and breast enlargement (gynaecomastia) and certainly my husband has developed a nice pair of 'moobs'. There is a drug called Tamoxifen which might help with the breast pain or alternately the breast buds can be irradiated which should also reduce any further enlargement. My husband does have physiotherapy from his osteopath and uses painkillers for the bone and muscle pain, along with exercises and some resistance band work. I have linked in an information sheet on the decapeptyl.

https://www.macmillan.org.uk/cancer-pinformation-and-support/treatments-and-drugs/triptorelin-for-prostate-cancer

For your meeting with the oncologist I would check whether you should have a blood test along with a PSA before you meet. This might give an indication of how well the radiotherapy is working but also how your body is coping with it and the hormone therapy.

Many thanks for your input and insight, Brian. It really is very much appreciated.

Thank you for your feedback.

I forgot to mention that I have a blood test this coming Wednesday (which should reveal the latest PSA level) before I see my Consultant next week. 

Thanks for the additional link you sent and sharing your experiences.

I don't think your GP is quite correct.

I don't believe the RT will have any impact that far outside the treatment target area - radiotherapy is very precise nowadays. It does temporarily reduce your hemoglobin levels for 1-2 months after radiotherapy, but your body should replenish this unless there's some other problem. That can cause additional fatigue for these weeks after RT (as does the effort the body puts in to healing the tissues, which is mostly invisible).

However, hormone therapy does affect bone, and can cause Mastodynia (breast gland pain/sensitivity). For bone health you probably need to be on a Calcium, Vitamin D3, and Vitamin K2 supplement, but check with your doctor as there are conditions and other medications which can't be taken with these. It's also essential to be doing exercise which stresses bone (walking is good for this, but things like cycling and swimming aren't (they're good for maintaining muscle mass which you should also be doing).

Mastodynia is a common first side effect of breast gland growth (Gynecomastia). Assuming you don't want this, ask your oncologist if you can be prescribed Tamoxifen. (Some people can't have it due to history of VDT or cardio issues.) It stops the Mastodynia pretty instantly (although it takes a few weeks to build up the working level in your blood). It usually stops breast gland growth, and can reverse recent breast gland growth, but not anything long-standing. It has no effect on breast fat growth (which is not accompanied by Mastodynia). You should get your liver function checked when you've been on Tamoxifen for a few months, and a couple of times a year after that, to make sure your liver is coping with it.

Many Thanks, Andy, for your insight and feedback. Every day is a "school day" with a subject such as this one, and every day is a learning curve is attained!

You have given me much to think about and additional questions I shall need to ask when I next get a chance to meet with my Hospital Consultant.

Much appreciated!