Hormone therapy

Dear Cody,

Thank you for getting in touch with us, and welcome to our Online Community. My name is Pauline and I am one of the Cancer Information Nurses on the Macmillan Support line.

I am glad to see that you have found our online forum for prostate cancer. I hope you are finding this useful.

I am sorry to hear that you are having difficulty coping with fatigue. This can be a challenging symptom. Fatigue can be caused by hormone treatment, however because this is a new symptom, we would encourage you to report it to your treatment team. This is because fatigue can be caused by a number of other things such as a drop in the number of red blood cells.

Each person’s experience with fatigue is unique to them and is dependent upon the cause of the fatigue.  Some people find that it gets better with time, others find it gets worse and some people find that it varies from time to time. If hormone therapy is the cause of your fatigue, then for most people it will improve on completion of your treatment.

When a person stops the hormone therapy the testosterone levels usually increase, however they may never go back to what they were completely.

Worrying about cancer coming back after treatment is a common concern. It may be helpful to have a chat with your doctor about your own personal risk of a recurrence. The risk of your cancer coming back is calculated taking into account a number of things such as your PSA level, Gleason score and the stage of your cancer.

Following your treatment you will continue to have regular check-ups/follow up appointments.  This will give you a chance to ask questions and deal with any ongoing side effects

Please feel free to give us a call on our helpline, 0808 808 0000 (7 days a week, 8am-8pm) or email us if you would like to discuss further.

Ref PG/AR

Best Wishes

I contacted my oncologist who said I could stop at my next hormone treatment and this might help with my figure swelling and tiredness and testosterone. 
My Gleason score was 8. My RT was completed in October last year. I’ve had hormone Prostap since last June. My PSA is >0.2 undetectable. 
I was told I should do 2 years initially. 
I’m unsure whether to take this advice and stop now or continue for another year to make sure?

What are the statistics? On chances of recurrence?

Would it be better to see it out for two years?I can put up with the swelling body if as I hope I can get back into shape later. 
My nurse is to phone me back to see my thoughts next Thursday. 

Hi Cody

Thanks for getting back in touch with our online community. My name is Sarah one of the Macmillan cancer information nurses.

It is good to read your nurse is phoning you back to talk through your thoughts, on stopping the hormone therapy. Your hospital team will be the best to support you with this, knowing your individual diagnosis. Again your team will be able to talk through about statistics in relation to your diagnosis as each diagnosis is unique to that individual.

Medical teams use models such as the predict prostate cancer tool to help with making treatment decisions. You may find it helpful to look at the NICE guidelines for the management of prostate cancer. These may help you with your thoughts about stopping treatment.

It is important to think about your own health at this time as this can help reduce side effects and help your wellbeing.

Treatment decisions can be difficult, it may be helpful to talk things through with family and friends. Or you may find it easier to talk it through with one of our specialist cancer information team.

If we can help with anything else, don’t hesitate to get back in touch.

Best wishes

Sarah S

Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref/ CF/SS

Here are my details:

Gleason 8 T2a N0M0

3/6 samples tested Gleason 8 only on one side of prostate 

seen 3/5/22 on HT Prostap then RT 20 fractions completed 19/10/22

HT continued Current PSA .2

When I complained of tiredness Oncologist said I could stop HT. I was due another year. 

HT side effects are not unbearable. If it would benefit me to continue to complete 2 years I could and probably would do so. I’m just wondering if it is necessary or worth it. I have had conversations with a nurse twice but not with the oncologist which I would like to have. I haven’t had advice but just been told that the oncologist would allow me to stop. 

What’s the best advice? 

thanks

Hi Cody,

Thanks for getting back in touch.

My name is Carole and I’m one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

It sounds as if you have unanswered questions, and this is making it difficult for you to make an informed decision about treatment.

Treatment recommendations are usually based on national guidelines.

It can be difficult for an oncologist to say what might happen if a treatment plan changes, but they are best placed to advise.

I’m not sure from your post if your specialist nurse spoke to the oncologist, or whether you have asked the clinical nurse specialist to arrange for you to see the specialist. It might be helpful to get back in touch with the specialist nurse and explain that you are looking for more specific information. You could ask for a clinic appointment or if you prefer, for the consultant’s email address, so you can ask the questions you feel you need answered.

Sometimes it can help to talk to someone who may have had similar questions about treatment. Prostate Cancer UK offer one-to-one support from trained volunteers, who can listen and share their own personal experiences.

I hope this is helpful.

If you have further questions, please don’t hesitate to get back in touch.

Sending best wishes,

Carole

Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or email us. 

Ref/ HK