Recent diagnosis and treatment plan

Hi Aubutied1c171 

my husband is on Abiraterone daily with a steroid . He also had Prostap injections every 12 weeks. His PSA had been undetectable since the beginning of the year and he had radiotherapy over Xmas & new year . 6 in total as he is not on a curative pathway due to a rogue lymph node  . However he is doing great .

He has been lucky with very few hot flushes and no excess weight  . But does suffer from ED and severe fatigue . His Oncologist expressed that he should exercise as this helps with the fatigue . He walks every morning and hits the gym at least 3 times a week.  

hope this helps and feel free to ask any questiin

Best wishes 

Liz & OH xx

• Thanks yes, reading about the fatigue does worry a bit, I still have teenage dependants and if possible will need to work, till retirement, still don't get understand yet how the oncologist said it was potentially curable if in lymph nodes, but can only hope for the best

Your Oncologist is correct. It depends which ones are involved . My husband’s is outside his pelvis beside his femoral artery so they can’t zap it . However , the hormone therapy has put it to sleep as I already expressed his PSA is undetectable . 

not everyone had symptoms or if they do are different . My husband’s is is neatly 74 so TBH  he never stops . If he’s not exercising he’s in the garden or man she’s doing something .

If are not sure you could ask for a second opinion .  

you will hear from other in this forum and they can give you an unsure to their personal PC journey . 

Hello Aubutied1c171 

Welcome to the group although I am so sorry to find you joining us - I am a T3a and Gleason 9 - I had a shadow on my pelvis on my MRI scan and my Radiotherapy was to the Prostate and Pelvic Lymph nodes with the intention of me remaining on a "curative pathway" (I love those 2 words!!).

I don't believe any consultant who gives a prognosis of life expectancy - we have people on the group who were given 12/18 months and are going great 8 years later!! It's amazing what a positive outlook and attitude can do!!

You can read my entire journey by clicking on my name or avatar - happy to answer any questions.

Best wishes - Brian.

Thanks for your reply Brian, the oncologist did say the the expectancy was based on 'the stats' taking into account my age and general health, and hopefully a positive reaction to treatment, he also seemed to intimate that there were no long term stats yet based on this specific hormone therapy so it could possibly be longer, it's difficult not to ask the how long have I got question, before I had that appt, I was assuming it was the 37 percent get to 5 years, based on what i had read, so I am more positive than I was a few days ago

Hi Aubutied1c171 please don’t read too much into the stats, remember we are all different, our start point and how we react to various treatments.  About 6 months ago, I wrote a topic on here which may be of use to you The end - straight to palliative care! .

Hi, 

Welcome to this very informative and helpful forum.

My diagnosis isn't a million miles from yours.  I was wondering what your PSA level and Gleason score is, also the  number/type  of lymph nodes involved? Thanks

You can see my journey so far on my profile. 

All the best going forward. 

My initial PSA was 45, in the haze of my appts, whilst taking in the news, I've forgotten what my Gleason score was, there's a number of lymph nodes affected in my pelvis, but so far nothing found elsewhere 

Hello Aubutied1c171  If you Google ‘Stampede Trial Prostate Cancer’ you should find some info on the results from the Stampede trial which mentions those drugs. My onco mentioned it at our first meeting although I went down the Zoladex and RT route. I have an external iliac lymph node affected, which was included in the RT. 

Hi Aubutied1c171 My husbands prognosis was - “10 years ago you would be looking at 5 years, now with the treatment available 10 years plus is possible, because of your age maybe more.” So no one really knows and then of course in the next 5-10 years there will be new treatments that push the line of what’s curable. 
He also had Abiraterone (for life) lots of men tick over very well with it as it’s an excellent drug. Our consultant knows of a chap that’s been taking it for over a decade since trials. BW is having a break at the moment, because we had asked for a break in the treatment, but also he started to have side effects, mainly from the long term use of the steroids. Shame really as Abiraterone really puts things to sleep. Make sure you exercise a lot it is the way to fight the fatigue and watch your potassium levels - have a banana a day as that could go low with Abiraterone.

L