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Wanting to come off Zoladex early

User
Posted 04 Dec 2022 at 10:14

I was diagnosed with with a T3b Gleason 9 locally advanced prostate cancer, August 2021, age 56.

I chose brachytherapy, 82% success with 5 1/2 weeks radiotherapy and 3yrs Zoladex,  compared to 60% success with  7 weeks of radiotherapy and 3yrs Zoladex.

Had my brachytherapy and radiotherapy in April/May.

For me, I am struggling with no testosterone due to Zoladex. I have fatigue, difficulty with memory, muscle/joint aches and pains, tingling in my feet and hands. Also the lack of erections and libido has a negative impact. Do others have all of the side effects? 

I am a teacher and manage to whizz through my day on adrenaline.

Now I am thinking of stopping Zoladex implants next May, a year after treatment, 2yrs earlier than recommend. Basing this on quality of life for me, but also on data, which I asked about. Being on 3yrs Zoladex gives a 90% chance of success after 10yrs, compared to only 1yr of Zoladex which gives 87% success after 10yrs. For me an easy choice due to small margins.

Has anyone else decided to stop early due to side effects and quality of life? How long to return to feeling normal? 

Many thanks for your time and support.

User
Posted 04 Dec 2022 at 12:50

This was posted on your other thread, when I had less details. The following member hated zoladex and stopped early.

https://community.prostatecanceruk.org/default.aspx?g=profile&u=49973

I've left the original post below as is. The fact you have found that it changes success from 90% to 87% is very helpful. Considering your adverse side effects you should come off.

 

***********************************

Hi paddyman, I don't know anything else about you: age, diagnosis, treatment. Different people react to HT differently. Assuming you have had RT then the main benefits were before RT during RT, and progressively less value over about 18 months post RT (it takes about 18 months for irradiated cells to all die). If you stop HT it will take about six months for your body to start making testosterone so in essence you are getting another six months of HT like it or not.

So by now HT has done about 90% of the work it was required to do. If all the cells are already dead or severely weakened, the extra 10% is not required. If HT is making your life a misery, then stopping now means you will get two more years of improved quality of life at a very small risk of losing a few years at the end.

If you are over 70 you ain't got many years left so make the most of them, stop the HT. If you are under 60 giving the treatment the best chance might give you another 20-30 years of life, try and persist at least another year of HT.

Whatever you decide don't base it on what some random guy on the internet, who knows nothing about you says.

Edited by member 04 Dec 2022 at 12:59  | Reason: Not specified

Dave

User
Posted 04 Dec 2022 at 13:19

Thank you for this. I base my decisions on facts and personal experiences. Interested to know others view points.

 

User
Posted 04 Dec 2022 at 21:52

Originally Posted by: Online Community Member
For me, I am struggling with no testosterone due to Zoladex. I have fatigue, difficulty with memory, muscle/joint aches and pains, tingling in my feet and hands. Also the lack of erections and libido has a negative impact. Do others have all of the side effects?

Yes to all of the above. You've carefully figured out all the stats and come to the conclusion that one year should be enough, on balance and I think many people here would agree [against Drs advice I should add]. I've just pulled out at 2 years into a 3 year course of Zoladex. Andy, who often posts here and knows a great deal about all matters PC, stopped at 21 months and is now well into the recovery stage so his experience is helpful. For me at 2 years the side effects have diminished significantly [though of course libido cannot recover on Zoladex] so it's almost tolerable but I've still chosen "out". 

One thing that is never discussed is that zoladex itself has the potential to shorten your life through adverse cardio-vascular effects, raised cholesterol levels, weakened bones and a couple of other things.

See how you go with it. You might feel you can get through to 18 months when you hit the 12 month mark but if not you know where you stand in terms of probability.

 

Jules

User
Posted 04 Dec 2022 at 22:09

Originally Posted by: Online Community Member

One thing that is never discussed is that zoladex itself has the potential to shorten your life through adverse cardio-vascular effects, raised cholesterol levels, weakened bones and a couple of other things.

Agreed the side effects can have an impact on longevity. For people on it for a few years I would guess most of these are reversible though I suspect bone density is a one way street post 50 year old. For those on lifelong HT I guess the cancer will probably kill you before zoladex does, but I bet zoladex would be a close second.

Dave

User
Posted 05 Dec 2022 at 06:40

Hello Jules,

Thank you for your feedback. It is good to hear from someone who has made the choice to come off early.

I wasn't aware that libido won't come back?

Hope all is going well for you.

User
Posted 05 Dec 2022 at 07:09

Jules, I was also on Zoladex 6 months prior to treatment, been on it now for 12 months. Want to come off it 12 months post treatment.

User
Posted 05 Dec 2022 at 07:35

Originally Posted by: Online Community Member

I wasn't aware that libido won't come back?

My course was two years HT, which I completed. It then took nearly a year for libido to return, but it is now just as strong as before, if not more so. ED is a problem, but tablets help with that.

Edited by member 05 Dec 2022 at 07:36  | Reason: Not specified

Dave

 
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