Partner diagnosed - advice on treatment

Hello Peejay sorry to see you here, this forum is amazing and you will get plenty support and advice here 

My partner was diagnosed 8 weeks ago, all details are in my profile, he is T3N0M1b, widespread bone mets. He started on hormone therapy straight away, monthly Degarelix injections. 

He has been offered 3 treatment options moving forward, one of those is triplet therapy and the consensus seems to be to go hard and fast and hit the PC with everything and anything straight away......it looks like my partner is not going down this route at the moment, he is swaying more towards adding in another oral hormone tablet and keeping chemo for later on.....his reasons.....because he is so well at the moment, he has had a fantastic response to the hormone therapy and quality of life is so much more important to him. Alot of men breeze through the chemo, many experience difficult side effects but I guess the treatment can be stopped if it becomes intolerable.

Our oncologist certainly didnt put any pressure on regarding treatments, she actually seemed to sway more towards our option 2. 

We have done alot of research too and there are lots of studies advocating for the triplet therapy and how it can increase life expectancy but there are no studies to say that having the chemo later on doesnt have the same effect so we are just gonna wing it! Try not to google, stick to here for advice and of course your medical team.

Thats his choice though which I completely stand by, his choice will always be the right one. There are many people here who had triplet therapy, many who had treatment before triplet therapy was offered. 

See what your options are and make sure you have a list of questions for your oncology appt.

Triplet therapy does need to be started with 12/13 weeks of your first hormone therapy treatment, time scales are really important for this treatment.

Good luck and all the very best ️

I don’t know about triplet therapy but it’s a common start point after or with HT (hormone therapy).

before I was diagnosed by or even saw an oncologist I was put on HT. my PSA shot down to next to nothing from 90 in a couple of weeks, stopping the cancer in its tracks. So HT is the way to go I’m most cases.

Welcome to the forum and I’m glad you have asked a question in this friendly and informative support group where you will get answers from people who have experienced something like what you’re going through. But we are all different inside and that is worth bearing in mind when you read up about treatments. Try not to Google anything because you will probably bet scared for no reason. Stick with asking questions here if you can.

This is a couple disease and partners are affected too. So you will have questions and need as much support as your partner. I wish you well. Take care.

Hello Peejay 

A warm welcome to the group from me, although I am so sorry to find you here.

In simple terms, yes Hormone Therapy is the best start to treatment before your oncology appointment. Prostate Cancer lives on testosterone - hormone therapy removes this. If there is no testosterone in the body the cancer is deprived of it's food and stops growing and spreading.

Triplet therapy is fairly new and needs to be started within 12 weeks of the diagnosis - it hits the cancer hard and fast and we have plenty of Community members who have gone down this route and done well.

As your partner is a M1b it would help to know where apart from the prostate and lymph nodes the little sods have gone "walkabout" in your partner's body.

You don't say when your meeting is with Oncology but it's best if you are both there (you need to gt as much out of the meeting as possible and 4 ears are better than 2). Here's a list to help you sort out your questions for your partner's team.

Questions to ask Your Team.

Feel free to ask any questions here - however trivial, someone will have an answer for you.

Best wishes - Brian.

Thanks Brian that’s really helpful. Will chase up the oncology appointment as no date yet. 

Hi Peejay,  My husband was diagnosed early last year he is on the triplet treatment and is doing really well. 

Thankyou good to know! we can push for it hopefully with the oncologist. 

Hello Peejay

im sorry to hear of your partner’s diagnosis. The first few months of getting through all the tests and determining a treatment plan are really hard on the emotions as our lives and future plans seem to get totally disrupted! Once the treatment is sorted it does get easier.

we are not supposed to post links here to various web pages etc and most of us only have a ‘specialist’ inside knowledge of our own experiences. There are different sources of ‘specialist’ knowledge out there. The ‘Dr Google’ sort is the least reliable. There is reputable advice from Prostate Cancer Uk but I have not looked to see what they have to say about triplet therapy.

when I was researching for my husband I looked specifically for academic, peer- reviewed papers which contain a more reliable evidence basis. You can find these via a search on Google itself but a more specific search on ‘Google Scholar ’ eliminates the more spurious scribbling of the less well informed. I have just found one evidenced based, peer reviewed paper about triplet therapy  quite easily.

I felt that doing this research at the beginning gave me a sense of control and also provided us with questions to ask at consultations.

At the end of the day, your partner makes the final decision as it is his body. My husband was adamant he did not want surgery and I supported that decision. I did a lot of research on the use of the Space Oar to protect the bowel from radiation damage. It is not available on the NHS but I asked him to consider having it done privately. He refused to consider it and, although I thought was mistaken, , I had to respect his own decision and support him and hope he was right and I was wrong

I do hope that your partner receives the best and most appropriate treatment for his future wellbeing. I also hope that you also get the support you need. It’s a tough and uncertain journey but there is still life with prostate cancer and that life can still be enjoyed.

Thankyou for your kind words. I have looked at a few research papers so far. Also read sir Chris Hoys book which gave me some insight and comfort. Although very good, I don’t feel as if we have had detailed information from Urology so far - standard reply was refer to Oncology - for now he’s not in a great deal of pain which is the worst part for both of us. He had to give up self employed work. I appreciate having this space to hear from others going through the same. 

Hello Peejay 

In the NHS urology do the standard tests and if you are not having surgery to remove, they pass you onto oncology.

i assume you are aware that T4 is usually incurable and the treatment is given to manage the cancer and extend life as much as possible.

T4 - The cancer has left the prostate and is in other nearby organs.

N1 - The cancer is in the pelvic lymph nodes.

M1b - The cancer has gone "walkabout" in his body and is in his bones.

We have Community members here who are T4 and are 10/12 years past their original diagnosis and still enjoying life to the full

This link will help you to understand triplet therapy:

Prostate Cancer UK - Triplet Therapy.

If I can help with any further information please let me know.

Best wishes - Brian.

Yes thankyou Brian we are very aware of the diagnosis. Not quite sure how extensive the bone mets are, we know ribs are involved plus others but they didn’t elaborate when I asked where else so that’ll be a question for Oncology. Thank you so much for your positive response re. 10-12 years! And I’ll be reading all the links later!