I can have removal or Hormone/Radiotherapy

Hi T

Do u know what the MRI says in terms of tumor size?

Steve 

Hi Steve.,

thanks for replying.

Short answer is no. There is obviously a lot that I have not been told. I will try to find out and let you all know.

Thanks

Dave

Hello Trainerman001 . You ask the question why do you need HT for so long after having radiotherapy. Basically the radiotherapy continues working to kill off the cancer for 18+ months after the initial treatment. The hormone therapy ensures that the cancer is denied its food and weakens it allowing the RT time to do its job. It has been shown that the combination of RT and HT have a better outcome than RT on its own for men with an intermediate or high risk cancer. With these types there is a chance that the cancer may have seeded to other spots so the idea is to disable them and stop them from developing further with the HT.

Whether you choose the surgery or the RT/HT route is a very personal decision so basically do your research, check what is available in your area but also whether you could travel to have a particular treatment elsewhere and keep asking as many questions as you want in order to have a better conversation with the oncologist and surgeon to allow you to make the right decision for you.

As a starter I have put a link to a useful book which you can download for free.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

My husband has been on HT for 4+ years and yes it does affect him. He has advanced metastatic prostate cancer so will be on it for life. His biggest battle is with the fatigue and the advice everyone will give you is to get as fit as possible in order to help counteract the muscle loss, preferably introducing some regular gym sessions into your routine. Loss of libido happens for most men pretty quickly so it is important to look after your penile health to minimise the potential shrinkage in the penis and scrotum. This may involve taking tablets in order to maintain blood flow and manual stimulation can help as well as possibly using a vacuum pump. Basically use it or lose it, plus it helps to improve the time to recovery after HT stops. The radiotherapy side of things he found pretty easy but the fatigue did build up the more sessions he had. He has had no long term side effects with his bowels or bladder from the RT. The short term side effects were quickly dealt with by the radiotherapy team who offer excellent support. Was the treatment successful, yes, there has been no recurrence in that area for 4+ years. Everyone is different in that some men have few side effects, others experience the whole range whilst on HT but most men find it tolerable and certainly we still have a good quality of life - it is better than the alternative.

I am sure others will be along with their experiences but at the moment you don't have all the information you need in order to make an informed decision on your treatment options.

Hi Dave

Ok, If u can get the Gleeson score , MRI report showing size of tumour and if near gland edge.

Also last few PSA results.

With that info I can hopefully give u better advice

Best wishes 

Steve 

Hi Dave (Trainerman001 ), I agree with the others that you need more info before you can make a decision.  One thing to remember is that with either route it is possible that micro cancer cells may already have spread out and are undetectable although the risk is generally low and you are on a curative path.  Make a list of the pros and cons of each treatment as it is a personal choice.  Feel free to ask any questions, the guys and girls on here are brilliant.  Brian (Millibob ) our gang leader is travelling home from holiday today but will probably introduce himself when he is back and the shock of returning from the heat has hit him. David

Thanks to you all for the really helpful answers. As it happens, I have an appointment tomorrow with Urology and will try to get the answers to all of these questions.

Back soon with answers I hope !

Grade group 3 consists of Gleason 4+3, i.e. risk group = intermediate unfavourable. 

But I suggest confirming your Gleason score directly with your consultant, while also obtaining the info suggested by other posters.     

BTW I am just an amateur, slowly climbing the learning curve.  However I am seemingly at risk of a similar decision point in the near future.   

Hello Trainerman001 

And a belated warm welcome to the Macmillan online community from me too (just returned from 24c to 4c from holiday as David2017 said above - it's a shock!!).

Yes as others have said you do need your PSA results Gleason Score and TNM staging before you can make an informed choice of treatment. Both treatments come with their downside but nothing that can't be overcome. I do hope you get some answers from Urology tomorrow.

If you live in England and have full access to your NHS App some of the details may well be there.

I am just on my lat month of 36 months of Hormone Therapy/ Radiotherapy - if you want to read all about it just click on my user name or avatar. (I did have a few issues along the way - but not ones everyone gets!)

Feel free to ask any questions however trivial - we are all happy to answer these.

Best wishes - Brian.

Thanks for all the continued advice.

I have just returned from seeing Consultant and it really was not the most rivetingly successful of days.

Gleason? .. don't use that. But I would be a 4+3

Tumour.. can't measure

My last two PSAs?? 10.4 then 9.8 but the reduction is not significant.

Active surveillance ?? NO because I am a 4+3 not a 3+4. (though the biopsy showed mostly grade 1 with just 1 or 2 spots of Grade 3 and I thought that made me a 4)

If I had no treatment it would definitely get in my bones, but we don't know when.

I thought if you had anti-androgen injections etc it targeted/blocked the testosterone going to the cancer .... No, wrong. Have a full set of side effects old boy.

They want me start tablets tomorrow, injections in 2 weeks. I have to confess the side effects worry me greatly. I will be 72 when they finish the jabs. Do I fancy 3 years build up of boobs, shrinkage of tackle, forgetting what a love life is, weakening bones, weakening muscles, weakening brain (no ribald comments in the back there) etc etc and so forth. Guess the answer to that !

It has been really great reading all of the stories and inputs from you all and I sincerely thank you. Right now, my head is spinning though.

David

Hello David Trainerman001 

All I can say is Hormone Therapy works. There is a solution to the side effects - Moobs - Medication. Penis - Use it keep the blood flowing. Love Life - we have found new ways of having fun and it's been good. Bones - Calcium and Vitamin D Tablets. Muscles & Brain - Exercise and Keep busy.

Yes it;s a challenge but two words kept me going spoken by my oncologist "Curative Pathway".

You have an important choice to make surgery or HTRT (I didn't have a choice but am a wimp so surgery would have been out). We are all different and don't all get all the side effects.

Ask any questions and I wish you well - stick with us and keep us posted.

Best wishes - Brian.