High risk Prostrate Cancer - confused

Hello Wispmydog,

Like your husband I am 56 fit and healthy and was diagnosed with prostate cancer in August there a week before my birthday . My PSA was 46 and a Gleason score of 8 with a spread to the seminal vesicles and a single spot on my pelvic bone with a single lymph node positive  . The rest of my bone scan was clear as was my CT scan . I was started on DECAPEPTYL SR 11.25mg hormone treatment every three months . Surgery isn't an option for me as the cancer has spread slightly. My consultant says I'll need both chemo and radiotherapy treatment so I'm waiting to see what treatment starts first.

The important thing to remember is as per my consultant is that today , prostate cancer survival and treatment is excellent with modern medicine and he expects me to be here for many years yet. Just to get on with my life I was told.

It is a worrying time and it certainly rocks your life initially . Just stay positive and be strong.

Hope this helps you in some small way.

Hi Ghostly Comet

It does help in some big way so thank you and for taking the time to reply.

Strangely my husband was diagnosed in September a day before his Birthday!

Its a bolt out of the blue isn't it ?...one minute life's fine then - BOOM! never to be the same again.

I know compared with many other cancers Prostrate is as people say 'a good one' (?) to have...

I will try to stay positive and keep my husband ( who doesn't want to know too much) on track. Suspect we ( what am I saying!) HE will go down the hormone route too then radiotherapy but concerned the 'high risk' tag means it will be back and hence don't want to limit our options too much now by first choices.

Thank you again and VERY best of luck with your treatments.

Wispmydog

Hi Wispmydog and welcome to the forum where nobody wants to be. I'm sorry but as it has already spread to the seminal vesicles surgery won't be an option. Your oncologist has already started him on hormone treatment with Bicalutamide so they are clearly heading down the hormone therapy & radiotherapy route. He will probably get a hormone injection in the next week or two.

I suggest you read the Prostate Cancer Toolkit from the PCUK website. It will answer a lot of your questions, but please come back here and ask about anything you don't understand as someone here will have been through the same thing.

Hello wispmydog. I was diagnised in mid August and was told mine had spread outside the prostate to the seminal vessels. I then had a bone scan and 2 lesions were found in my (r) ileac bone. Surgery not an option. Prescribed Bicalutamide for a month and then started on Prostap monthly injections. In between had radoitherapy to bone lesions. Have had 3 Prostap injections now and start radiotherapy x 6 weeks mid November, then Chemotherapy. (The enemas arrived today). Side effects from Prostap have been very regular hot flushes and sweats(now I know what women go through) and have been referred for accupuncture x 10 seesions to try to aleviate flushes sweats. I found the info pack from Macmillan I was given on diagnosis very helpful and as they suggested wrote down questions I wanted to ask my Oncologist which was better than trying to remember everything.Last week I visited my nearest 'Maggies Centre' and it was a pleasant, comforting place talking to those in the same boat none of us want to be in. I have accepted my diagnosis but my wife hasn't. 

         Hope your husband treatment(s) goes well.

With best wishes, Graham. 

Meant to say previously that there may be new ongoing treatment trials that your husband may get on . My consultant mentioned it to me. Check out prostate cancer survivor stories on YouTube. It's amazing just how long one can survive with prostate cancer these days , I personally found it reassuring. 

Good luck

Colin

Thank you for your reply Seamus 47 ( clearly a fellow dog lover)

I know you reply to a lot of posts so well done.

I will look at the Prostrate Cancer Toolkit as you suggest.

Perhaps that will explain why you can still see reference on line to RP for prostrate, seminal vesicles and lymph nodes. Maybe its to do with having enough 'margins' ?

Thanks again.

Wispmydog

Hello Graham

The info on the Prostap injections was really helpful as was the thought of accupuncture as a possible relief from side effects.

You seem to have hit the road running with all your treatments!

I'm sorry your wife is struggling to accept your diagnosis. I find it amazing how quickly after the initial worries of waiting test results and diagnosis we all adapt to what everyone calls the 'new norm'. Life goes on, work, walks, family gatherings just peppered with NHS letters flopping through the letter box and trips to the stern faced consultant!

Good luck and thanks again for your reply!

Wispmydog

Thanks Colin I will steal a look at YouTube ( when my husband isn't about as he really fights his illness with ignoring its presence which works for him whereas I like to know all there is to know).

In the ongoing treatment trials do they use placibos too? That would worry me.

Thanks for the positivity.

Good luck to you too.

Wispmydog

Regards the placibos I don't know for sure , but my consultant did say that they don't stop the treatments that your  on as they work . Instead the trials work along with your treatments so there's nothing to loose . 

If I get offered any trials I'll update you with any info that I can . It'll be a few months down the line yet I imagine as they like you to be on the hormone treatment for a few months first to prepare the body for best results from the radiotherapy and chemotherapy treatments according to my consultant . All the best

Colin

So sorry for your husband's diagnosis, it's such a shocking and terrifying time. As people have mentioned there are many different treatments available, I think ive had most of them since my diagnosis in march hahaha his body will adapt to the hormone tablets and injections after a few months and the hot sweats do settle down. I was recommend evening primrose for the sweats and it certainly helped. Also some changes to my diet have helped.