I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Radiotherapy and hormone treatment

User
Posted 30 Aug 2019 at 12:36

Hi to you all: the members past experience on this site has been invaluable in the past to me and my Partner ,so I am hoping someone will be able to offer us some help again. My partner has now moved to the stage of needing a course of radiotherapy over almost 7 weeks on the prostate bed and hormone tablets concurrently. Armed with the invaluable knowledge I have already picked up from this forum I asked if he could be given tamoxifen prior to hormone tablets to avoid man boobs which I know my partner Lynn(he’s Welsh) would hate. We were told they do not use tamoxifen for this but she suggested he could have radiotherapy to his chest tissue at the same time as his preliminary visit to do measurements and position etc . Our query which I hope someone will have experience of is this,Firstly ,how effective is this radiotherapy to the breast tissue.? Secondly will it needed to be repeated should he need another course of the hormone tablets later? Hope someone can offer assistance on this .Many Thanks Anita and Lynn 

User
Posted 30 Aug 2019 at 17:22
Hi Anita,

we also live in an area where Tamoxifen is not prescribed and I have learned from a friend today that our neighbouring Trusts don't allow it either. If they are willing to give him a zap of RT then it is certainly worth trying - however, the NHS' own advice is that it needs to be done when he starts taking the hormones. I am assuming that he will be on HT for 3 or 6 months before they start the RT and if they wait until then to give some rays to the breast buds it will probably be too late.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2019 at 09:12

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Hi Anita, we also live in an area where Tamoxifen is not prescribed and I have learned from a friend today that our neighbouring Trusts don't allow it either.

I struggle to imagine why any CCG wouldn't prescribe Tamoxifen for HT-induced gynecomastia.

It's one of the cheapest drugs available (costs next to nothing, providing the 20mg tablets are prescribed - other tablet sizes are around 40x more expensive).

It's much cheaper than the single RT blast, and it's more effective.

For those whose livers don't like Tamoxifen, they could fall back to the RT blast.

To be fair, I think you still struggle to imagine that any uro / onco / hospital / CCG does things any other way than the way you have experienced in your own case. You should have learnt by now that the postcode lottery on PCa rules out any sweeping generalisations on treatment. 

As it happens, our CCG does not approve ANY treatment for breast growth; they seem to consider it an insignificant side effect. Bizarrely, a member on here has recently had breast reduction surgery on the NHS in our area due to the mental anguish his moobs have caused him. Breast reduction costs a lot more than tamoxifen or a shot of RT! 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2019 at 15:10

Lyn,

I don't think my hospital prescribes tamoxifen, or daily low dose tadalafil, or metformin to prostate cancer patients, and doesn't offer the breast bud RT blast.

It's a matter of arming yourself with the information (and this forum is a fantastic place place do do that), and then if necessary going in search of research to backup your request, and putting that to your healthcare professionals. I won't pretend it will always work, but that's mostly worked for me. In the case of tamoxifen, I had to ask different people about 3 times, before the request went to an oncologist (who I never met) who prescribed it. The first 2 tries were met with a refusal ("we don't do that"). The request for breast bud RT blast was always a refusal, but in retrospect I prefer that I went the tamoxifen route, after having read comparisons of the two methods.

It does help that I have an excellent GP, but that's because I tried various of the GP's in the practice, and stuck with one I thought was particularly good. If you don't have a supportive GP, then it's probably worth looking for another one.

Also, make life easy for your healthcare professionals. I turn up to appointments with things like a spreadsheet of all my blood test results, which is much easier to access and read than anything they can get from their computer, and another spreadsheet which is a diary of all significant tests, treatments, etc, so I can easily say "I've been on Zoladex for 8 weeks" or whatever the query happens to be. I also keep a list of all my medications with doses, why they're taken, since when, etc. and I must have given out around 6 copies of that over the last 3 months treatments. The response is always the same - "Wow, I wish everyone did this". So do it. It's all on the NHS computer and hence unnecessary in theory, but clearly it's a massive help to them. When they see that you understand your disease and treatment, they are much more likely to listen to your requests for specific medications, because you probably understand why you want them too. If there are things people don't understand about their disease or treatments, then ask here.

Not everyone wants to know about the disease. I had my brachytherapy with 2 others who wanted to know nothing about it, didn't even want to look at their catheters. That's a coping strategy which probably worked for them, but wouldn't work for me. The knowledge I've picked up along the way has modified my treatment path, something I would have missed out on without it.

Show Most Thanked Posts
User
Posted 30 Aug 2019 at 17:13

Which hormone therapy is he on?

Bicalutamide is the one most associated with gynecomastia, and starting tamoxifen at the same time is often done. (That's not the 3-4 week dose of 50mg bicalutamide to prevent a testosterone flare when starting something like Zoladex, but the long term 150mg dose.) You need to have a liver function test (LFT) a few months afterwards to make sure your liver is coping with the tamoxifen.

All the hormone therapies can cause gynecomastia, but it's rarer with the others.

The radiation blast to the breast buds has around a 50% success rate. A 1-2% rate of damage to heart muscle has been reported, but no known cases where this has caused any problem and it's only come to light when heart is being imaged for some other reason. There's no agreement on when it should be administered, and some say before symptoms, some say only on onset of symptoms, and some say within a month of starting HT. It would not ever need repeating if it worked. I don't know if it can be repeated if it didn't work.

Tamoxifen has a 70% success rate. You typically start on 1 or 2 x 20mg/week, but it can be raised up to 20mg/day providing your liver copes OK.

NICE says men starting HT must be offered the RT blast, but it seems this is very rarely done, and Tamoxifen is probably more commonly used.

User
Posted 30 Aug 2019 at 17:22
Hi Anita,

we also live in an area where Tamoxifen is not prescribed and I have learned from a friend today that our neighbouring Trusts don't allow it either. If they are willing to give him a zap of RT then it is certainly worth trying - however, the NHS' own advice is that it needs to be done when he starts taking the hormones. I am assuming that he will be on HT for 3 or 6 months before they start the RT and if they wait until then to give some rays to the breast buds it will probably be too late.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2019 at 07:14
Thank you for your messages
User
Posted 31 Aug 2019 at 08:47

Originally Posted by: Online Community Member
Hi Anita, we also live in an area where Tamoxifen is not prescribed and I have learned from a friend today that our neighbouring Trusts don't allow it either.

I struggle to imagine why any CCG wouldn't prescribe Tamoxifen for HT-induced gynecomastia.

It's one of the cheapest drugs available (costs next to nothing, providing the 20mg tablets are prescribed - other tablet sizes are around 40x more expensive).

It's much cheaper than the single RT blast, and it's more effective.

For those whose livers don't like Tamoxifen, they could fall back to the RT blast.

User
Posted 31 Aug 2019 at 09:12

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Hi Anita, we also live in an area where Tamoxifen is not prescribed and I have learned from a friend today that our neighbouring Trusts don't allow it either.

I struggle to imagine why any CCG wouldn't prescribe Tamoxifen for HT-induced gynecomastia.

It's one of the cheapest drugs available (costs next to nothing, providing the 20mg tablets are prescribed - other tablet sizes are around 40x more expensive).

It's much cheaper than the single RT blast, and it's more effective.

For those whose livers don't like Tamoxifen, they could fall back to the RT blast.

To be fair, I think you still struggle to imagine that any uro / onco / hospital / CCG does things any other way than the way you have experienced in your own case. You should have learnt by now that the postcode lottery on PCa rules out any sweeping generalisations on treatment. 

As it happens, our CCG does not approve ANY treatment for breast growth; they seem to consider it an insignificant side effect. Bizarrely, a member on here has recently had breast reduction surgery on the NHS in our area due to the mental anguish his moobs have caused him. Breast reduction costs a lot more than tamoxifen or a shot of RT! 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2019 at 15:10

Lyn,

I don't think my hospital prescribes tamoxifen, or daily low dose tadalafil, or metformin to prostate cancer patients, and doesn't offer the breast bud RT blast.

It's a matter of arming yourself with the information (and this forum is a fantastic place place do do that), and then if necessary going in search of research to backup your request, and putting that to your healthcare professionals. I won't pretend it will always work, but that's mostly worked for me. In the case of tamoxifen, I had to ask different people about 3 times, before the request went to an oncologist (who I never met) who prescribed it. The first 2 tries were met with a refusal ("we don't do that"). The request for breast bud RT blast was always a refusal, but in retrospect I prefer that I went the tamoxifen route, after having read comparisons of the two methods.

It does help that I have an excellent GP, but that's because I tried various of the GP's in the practice, and stuck with one I thought was particularly good. If you don't have a supportive GP, then it's probably worth looking for another one.

Also, make life easy for your healthcare professionals. I turn up to appointments with things like a spreadsheet of all my blood test results, which is much easier to access and read than anything they can get from their computer, and another spreadsheet which is a diary of all significant tests, treatments, etc, so I can easily say "I've been on Zoladex for 8 weeks" or whatever the query happens to be. I also keep a list of all my medications with doses, why they're taken, since when, etc. and I must have given out around 6 copies of that over the last 3 months treatments. The response is always the same - "Wow, I wish everyone did this". So do it. It's all on the NHS computer and hence unnecessary in theory, but clearly it's a massive help to them. When they see that you understand your disease and treatment, they are much more likely to listen to your requests for specific medications, because you probably understand why you want them too. If there are things people don't understand about their disease or treatments, then ask here.

Not everyone wants to know about the disease. I had my brachytherapy with 2 others who wanted to know nothing about it, didn't even want to look at their catheters. That's a coping strategy which probably worked for them, but wouldn't work for me. The knowledge I've picked up along the way has modified my treatment path, something I would have missed out on without it.

 
Forum Jump  
©2024 Prostate Cancer UK