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Side effects and after effects of treatments

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User
Posted 28 Jul 2016 at 21:19

I have just discovered this valuable site. My main problems arise from dealing with the side effects and after effects of hormone therapy for prostate cancer. I started with Bicalutamide but am now on Triptorelin. I do not feel able to talk about the effects with friends and feel unable to raise these issues with the consultant. I meditate regularly every day and have found this helps in maintaining an equilibrium. Would value any helpful comments or tips  that anyone can offer. With good wishes to anyone who reads this.

User
Posted 29 Jul 2016 at 08:51

Hi and welcome Martin

Typically early HT side effects are hot flushes, fatigue and ED. We openly discuss anything PCa related here so let us know your feelings.

Ray

User
Posted 29 Jul 2016 at 08:45

hi martin, have read your profile but are you willing to tell us more ie when diagnosed, your gleason score and any scans/tests you have had.
if you can not talk to the consultant write down your issues and let him read them
have you spoken with the nurses on this site it may help as its not face to face
click on any ones profile to see about how they are

all of us on here are ready to help

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 29 Jul 2016 at 09:18

Hiya Martin,

Yes, feel free to discuss it all here: if you find it difficult, then consider changing your user name to protect your anonymity (if you haven't already!).

But I'm still not clear why you don't discuss these issues with the consultant; that's what they're paid for! :-)

User
Posted 29 Jul 2016 at 09:21
Martyn,

Welcome from me too. Many of us here have experienced HT side effects and have discussed how to cope with them. I would say though that since diagnosis ,I have lost all my inhibitions in discussing where I am with this disease and have found talking to medical people far easier as a consequence.

John
User
Posted 29 Jul 2016 at 09:54

Hi Martin
I guess you are talking about fatigue , libido and erectile dysfunction. All very worrying and bothersome , and if kept bottled up slowly destructive. It's good you have meditation which is great for handling stress. I'm afraid even if you aren't comfortable , you need to try to become the sort of person who can wear his heart on his sleeve if you want the best you can get with help. This includes big discussions with your partner and very frank conversations with health professionals. Difficult I know for some , but these medics have seen and heard it ALL. Especially with ED etc.
Alternatively if you feel you could speak over the phone without the need for eye contact , then phone the nurses on this website who are experts also. Take care and best wishes

User
Posted 29 Jul 2016 at 22:21

Hi Martin,

You are not the only gay man on this forum and I can assure you that gay men receive as much support as men that are not.

Barry
User
Posted 10 Aug 2016 at 19:06
Hi Martin,

I had slight bone thinning as a result of HT, I was prescribed Adcal-D3 tablets which I take twice daily.

Arthur
User
Posted 15 Aug 2016 at 15:49

Martin, try messaging Sean using the private message facility - there are a number of recognised reasons that gay men might find it more difficult to talk to straight medics about the side effects of PCA treatments. Sean is involved with a PCA support group and may know of something similar in your area.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 29 Jul 2016 at 08:45

hi martin, have read your profile but are you willing to tell us more ie when diagnosed, your gleason score and any scans/tests you have had.
if you can not talk to the consultant write down your issues and let him read them
have you spoken with the nurses on this site it may help as its not face to face
click on any ones profile to see about how they are

all of us on here are ready to help

regards
nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 29 Jul 2016 at 08:51

Hi and welcome Martin

Typically early HT side effects are hot flushes, fatigue and ED. We openly discuss anything PCa related here so let us know your feelings.

Ray

User
Posted 29 Jul 2016 at 09:18

Hiya Martin,

Yes, feel free to discuss it all here: if you find it difficult, then consider changing your user name to protect your anonymity (if you haven't already!).

But I'm still not clear why you don't discuss these issues with the consultant; that's what they're paid for! :-)

User
Posted 29 Jul 2016 at 09:21
Martyn,

Welcome from me too. Many of us here have experienced HT side effects and have discussed how to cope with them. I would say though that since diagnosis ,I have lost all my inhibitions in discussing where I am with this disease and have found talking to medical people far easier as a consequence.

John
User
Posted 29 Jul 2016 at 09:54

Hi Martin
I guess you are talking about fatigue , libido and erectile dysfunction. All very worrying and bothersome , and if kept bottled up slowly destructive. It's good you have meditation which is great for handling stress. I'm afraid even if you aren't comfortable , you need to try to become the sort of person who can wear his heart on his sleeve if you want the best you can get with help. This includes big discussions with your partner and very frank conversations with health professionals. Difficult I know for some , but these medics have seen and heard it ALL. Especially with ED etc.
Alternatively if you feel you could speak over the phone without the need for eye contact , then phone the nurses on this website who are experts also. Take care and best wishes

User
Posted 29 Jul 2016 at 11:39

Thank you, all , for your kind responses to my first email. I was diagnosed with prostate cancer in July 2013 after having had surgery and chemo for bowel cancer and radiation therapy for lymph node problems. Side effects from hormone therapy treatment include enlarged painful breasts (had radiation therapy to reduce pain), which I don't like anybody to see, hot flushes (alleviated somewhat by acupuncture), fatigue (for which I went on a very helpful Macmillan fatigue management course), loss of libido and ED problem. From chemo and HT I've also experienced numbness and tingling and nerve pain in feet and lower legs.

I think I do indeed need to open up to the consultant and friends about these issues and their impact on my life rather than keeping it all within myself.I see the consultant again in August following blood test for the PSA count. I will try to find out if there is any alternative to HT in my situation.

Think I've been wary of discussing matters openly not only because of reactions to my side effects but also because of being gay.

Once again, many thanks for all your comments which have already helped me open up about things.

Martin

User
Posted 29 Jul 2016 at 13:19

Originally Posted by: Online Community Member


Once again, many thanks for all your comments which have already helped me open up about things.


Martin



 


Does that include being a Birmingham City fan?          http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

User
Posted 29 Jul 2016 at 22:21

Hi Martin,

You are not the only gay man on this forum and I can assure you that gay men receive as much support as men that are not.

Barry
User
Posted 10 Aug 2016 at 17:12

Hello Everyone


I've found all the comments very helpful. I'm taking a list of side effects and after effects of treatments with me to give to the prostate cancer consultant at my next hospital appointment this Friday. 


Also, when I attended my surgery recently regarding another health issue, I was informed by a nurse that I was scheduled to be seen about how I was dealing with cancer treatments.


Feel grateful for the way support is shaping up.


Best wishes.


 

User
Posted 10 Aug 2016 at 18:01

Hi Martin

Although I didn't and still don't many here take Vit D to guard against osteoarthritis and have had a bone density scan.

You might wish to add those to the list

Good luck

Ray

User
Posted 10 Aug 2016 at 18:13

Thanks, Ray. I'll follow that up as I think that I may be prone to osteoporosis now. Cheers.

User
Posted 10 Aug 2016 at 19:06
Hi Martin,

I had slight bone thinning as a result of HT, I was prescribed Adcal-D3 tablets which I take twice daily.

Arthur
User
Posted 15 Aug 2016 at 15:49

Martin, try messaging Sean using the private message facility - there are a number of recognised reasons that gay men might find it more difficult to talk to straight medics about the side effects of PCA treatments. Sean is involved with a PCA support group and may know of something similar in your area.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Aug 2016 at 15:10

Thought I'd let you all know that I have in fact now seen the prostate cancer consultant. I showed him a list of side effects and after effects of treatment from the bowel cancer, problems with the lymph system and finally prostate cancer.  I'm glad I found the courage to do that ! He was sympathetic and compassionate in his approach. I made clear action I was already taking on some issues and areas where I'd welcome advice in particular(eg loss of libido and ED). The chat with the Macmillan Nurse afterwards was also very helpful.


I'm using Vit D and Calcium supplements to help the osteoporosis situation.  I'm keen on good nutrition and find my daily meditation helpful.


I feel I've progressed !


Best wishes.

User
Posted 18 Aug 2016 at 15:11

Thought I'd let you all know that I have in fact now seen the prostate cancer consultant. I showed him a list of side effects and after effects of treatment from the bowel cancer, problems with the lymph system and finally prostate cancer.  I'm glad I found the courage to do that ! He was sympathetic and compassionate in his approach. I made clear action I was already taking on some issues and areas where I'd welcome advice in particular(eg loss of libido and ED). The chat with the Macmillan Nurse afterwards was also very helpful.


I'm using Vit D and Calcium supplements to help the osteoporosis situation.  I'm keen on good nutrition and find my daily meditation helpful.


I feel I've progressed !


Best wishes.

User
Posted 18 Aug 2016 at 17:34

Hi Martin

Nice one, hope the progress continues.

Ray

User
Posted 22 Jan 2018 at 17:37
Hi everybody
I have had total prostectomy about 3 years ago with good success on partial nerve spearing but about an year ago because my PSA started going up again I had to undergo salvage radiotherapy
Well everything g was working quite fine even though I have been in cialis 5 mg daily
Since about 6 months after radiotherapy I have bee starting having more and more problems with ercections although I continue to take my daily pill
Well sometimes I am a bit frustrated but hanging in there ...
Well I am wondering g if it is the radio or that cialis has less effect because I am getting used to it!!!
Definitely not much morning erections and need to work around it quite some time before something happens

Well here I am in any case also to help anyone who need. To have someone to talk to....Here I am
User
Posted 22 Jan 2018 at 18:05

Cialis doesn't become less effective over time so it sounds like this is ED caused by the radiotherapy, unless you are also on HT in which case it could be that.

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