Hi francesca, I was diagnosed prostate cancer Feb 2016 it had spread to lymph nodes, spine, ribs, pelvis and a lung, stage 4 gleason 8 psa 1581, t3b I can't remember other letters and numbers,, I'm uncurable, I'm on permanent hormone therapy and cemotheropy when needed I'm living a normal life,, apart from getting older aches and panes,, hope this helps,... Billy

P.s as I said I'm not curable we just live together an uninvited guest, 

Hi Fran,

My cancer was diagnosed straight to stage 4. It's primary was oestrogen positive (hormone receptive) invasive ductal breast cancer and had spread throughout both lungs and liver before I knew I had it.

2011 was very traumatic for me and my family, and I won't pretend it's been an easy ride cos it hasn't. But I am still here today over 8 years later, and enjoying a pretty active life. My medical treatment to date has been hormone therapy (tamoxifen and Zoladex) and initial vigorous "palliative" chemo.

As far as I know, clinical trials can be accessed through your medical team if they are appropriate. I have not taken advantage of any yet, as I believe that once I have undergone one study that excludes me from others; I'm hanging on for a bit.

I totally understand where you're coming from. I was utterly terrified too. And, to tell the truth I still am sometimes as I know that it will (most likely - see always hopeful! lol) always be with me. But I also see that, after diagnosis, there might be some long time to live WITH the cancer. Modern treatments are improving, and my hope is perhaps even to survive by "surfing on the wave of new treatments".

Summer 2011, aged 44, I decided that I only had enough fight for one approach. I was tired, and had a lung full of fluid, and not breathing too well. I was trying to "come to terms with" the short prognosis as well as looking into ways I could help myself to stay in control and survive longer. I was too weak to both accept the death scenario, AND tackle the cancer at the same time. People used to give me such "sad eyes", and I used to get really cross with them, poor things! Someone even suggested that I was "in denial"! I wasn't in denial; I know exactly what I am lumbered with. But I made a decision to come to terms with the death scenario only when I had no other alternative (I think what I actually said was that "if death is a cliff I'm not walking towards it, I shall be hanging on with my fingertips and making a terrible fuss.") Different people have different valid and valuable approaches to this terror and grief, but this has been mine. And many apologies to anyone reading this who has had a very different experience or outcome as I do not mean to upset you.

There is so MUCH I would say here, but I shall sign out with a little reference to an article by Stephen Jay Gould. It is called "The Median Isn't The Message" and it helped to give me hope (realistic hope) where there initially appeared none. It has been freely available online as his family (after his death twenty or so years later of someting entirely different) shared his essay publicly.

The second thing I did was to make a decision to try to stay as fit as I could for as long as possible in order that I would be more able to access treatments if I stayed in good health.

These things helped to give me HOPE and FOCUS and to stay feeling more in control.

The terror is always there, but I have learnt to harness it in a more positive way, and to let go of those things that I have no control over. I have realised that worrying is useless unless it leads me to a fix.

Very very best wishes to you Fran, and to you Billy.

xxxxxx

Hi Billy,

Thank you so much for replying, this is very reassuring. How did you find the chemo, were you on docetaxel? How have the hormones been? Did you have radiation therapy? I like your idea of likening it to living with an uninvited guest, it makes it seem less frightening somehow. I'm looking forward to the first round of chemo being over and hoping we can go on holiday.

Best wishes,

Fran

Hi Mary,

Thank you so much for taking the time to reply, and at length. What a journey you've had, you are a true inspiration. How is your quality of life day to day, are you on the hormones permanently? My husband does long walks every day and always has done, but am thinking of other gentle fitness we can get him into. He has read a lot of Stephen Jay Gould but hadn't seen that piece, so thank you - I've shared it with him. I have decided I'm not reading any more statistics or doing any more googling, every case is different and I believe he will be a success story. I know what you mean about the 'sad eyes', some of my friends are overdoing it on the 'poor you' sympathy front and it makes me want to scream! I'll take gallows humour over that any day! Thank you again for your reply, I already feel less alone and more hopeful.

Very best wishes to you,

Fran xxx

Yes I had docetaxel I was supposed to have 10 sessions but they cut it to 6 as I was having problems with side effects,, with hormone therapy I've put on two stone and have to have meds to help with hot flushes otherwise I'm sweating day and night continuously, apart from that not bad,,.. The trouble with my cemo was I've got other medical condition, and nead permanent meds or I go into a coma which is what happened cemo stop meds working right,, oops, hope you get things sorted, best wishes.. Billy 

Hi Billy, I've added you as a friend as would love to send you a private message to discuss some more. Hope you are really well, best wishes, Fran x

Hi  Francesca...just  read  your  post  of 17th. SEPT 2019  and   wonder  if  I  may  text  you  as  in  similiar  situation  with  my  husband  who  was  recently  diagnosed  with  advanced  form  of  Prostatr  cancer  but  like  your  post  only  1  spot  on  bone  identified  on  bone  scan.would  appreciate  a  chat  via  text  with  you.

Cara20

Ann

Hi Ann,

Sorry to hear of your husband's diagnosis, it must be a frightening and overwhelming time and my heart goes out to you. I'm over the moon to say my husband has done remarkably well, 6 rounds of chemo and a stint of radiation later, he is stable and on 3 monthly Zoladex injections to keep everything under control, has a blood test every 3 months and a scan every year to keep an eye on things. His quality of life hasn't changed and he feels very well. Prostate cancer is thankfully one of the more treatable cancers and can be managed and kept under control. Feel free to send me a private message on here if you would like to discuss further.

Best wishes,

Fran x

Hi  Fran.  Thank  you  very  much  for  such  a  speedy  reply...really  appreciated it  very  much.  I   am  so  pleased  that  your  husband  is  so  well  and  getting  on  with  life..very  reassuring.   . Yes  I would  like  to  message  your  privately as  have a  few  more  questions  but  dont  know  how  to do  it!!. 

Best  wishes

ANNX