Prostate cancer advanced metastatic life expectancy

you should have a gleason score and a psa too !! 

have you seen a oncologist/urologist and your treatments options will be discussed at a mdt meeting .

i have been living with the same diagnosis for 6 yrs now , so there's no way they can put a timescale on your life expectancy . 

be positive and check out other ways to treat urself 

the stock answer is 3-5 years for advanced but there's no way they can tell you for certain !!

you need your gleason score and psa score to help with replies to your question .

same diagnosis over 6 yrs ago still here and reasonably fit .

be positive 

Hello Hibby78 and welcome. You have a rare form of prostate cancer which doesn't seem to have a tried and tested treatment route but what you have been offered is designed to prolong your life and with a good quality. My husband was diagnosed in July 2020 with advanced metastatic prostate cancer at the age of 76 and was immediately put onto hormone therapy. We had concerns about how he would cope with it but the reality is a lot better than expected provided he listens to his body. He also has a rare form and initially the prognosis from the Urologist was possibly 6 months but the oncologists felt that if the cancer responded to the treatment then we would have a lot longer and even now they still say they have more tools in the toolbox. Staying as fit and active as possible is important in managing the possible side effects. I am 11 years younger than hubby and definitely want him with me for as long as possible but am aware that it can be difficult for him at times so we have a pact that as long as the quality of life is there then we will keep fighting. The other thing to remember is that the HT will put the cancer into hibernation no matter where it is in the body and may help reduce some of the symptoms that prostate cancer can cause. 

Please ask any questions and we will try and help. For those of us who are on the treatable but not curable route we know that this is a marathon but the experts are very conscious of providing treatment to allow you to live with a good quality of life so it is up to us to make the best of it.

Hi Hibby78 , I can see you have had a great reply from AH already.  All I would like to add is that while HT will change your life, that doesn’t mean that the quality of life isn’t good.  HT will immediately put the cancer into hibernation but none of us can tell you, how you will react to the treatment as we are all different.  Please ask any questions and will will do our best to answer. David

• Thank you for your positive comments. My dilemma at the moment is whether to start HT or wait to see how things develop. I currently have no symptoms ( other than a slowly increasing PSA which is currently 1.7 ). I am fairly active , going dancing 2/3 times a week , visit the gym twice a week and love walking and my big concern is that the side effects of HT might change my ability to do these things. I have a visit to America in May/June  this yeviewsar to see my son and have put any decision on hold till I return and the consultant will see me again in July to re-evaluate my condition. Unfortunately  this situation is constantly on my mind and I appreciate your views.

Thanks for your comments. My main concern on starting HT treatment is the potential side effects, particularly the fatigue. I am fairly active at the moment and am reluctant to compromise this aspect of my life which is very important to me. However I need to consider the consequences of delaying treatment . 

You need to take advice from the experts about the risk of delaying treatment. With rare cancers the PSA is not necessarily a good indication of how fast the cancer is progressing particularly with visceral metastases. My husband has this problem and the only way we can tell if more treatment is needed is if he has either MRI's or preferably a PSMA PET scan. Also things can move quickly and his oncologist feels that hitting progressions fast and hard will hopefully keep on top of it.

You are obviously very active and this will help to mitigate the fatigue.

Personally, I would start the HT now so that it can work into your system, I felt a bit rough for a while at the start but I'm used to it now.

Keeping as ft as you can and eating the right things are all good things to do to maintain your strength and fitness.

Hello Hibby78 

Just a personal view - I was rushed into hospital with a PSA of 182 and suspected kidney failure. No MDT meeting (that came later) but my consultant knew it was bad and started me on Hormone Therapy there and then. Starting Hormone Therapy when I did has probably kept me as a T3 on a "curative pathway".

Hormone Therapy at least puts the cancer "to sleep" and gives you and your team time - and you need time!! Yes there are side effects - I live my life with them - but I have carried on.

If you want more time together then for me Hormone therapy is a must. You can read my journey by clicking on my avatar or ask any questions - I am more than happy to help.

Best wishes - Brian.

Hi Hibby78 , I was extremely active prior to treatment, training several hours a day and competing in sporting events. The fatigue of treatment is significant so I had to change my lifestyle to adapt. I still do sports every day ( an hour of weight lifting and 30min run today for example) but to a different duration and intensity than before, and don't participate in events. You can still have an active life while on treatment, but adjustments are necessary. The good thing is, the treatment really works and stops the cancer. Not having treatment can have other consequences which may also impact your active lifestyle in a way you couldn't control.

Hope this helps 

G