Oncology appointment

Hi JFM - So sorry to hear the news - not the best but as you say he's already on the treatment path. The hormone treatment will be reducing his testosterone and stopping the cancer cells from growing. Stage 4 is usually attributed to a Gleason Score of 8.

I am not a medic but I would anticipate its going to be an offer of Chemo on 27 July so all is not lost.

I would do your research, make a list of questions for the oncologist - what is the exact spread, how do you intend to treat it, what are the side effect, what is the time scale for the treatment and what is the prognosis. Do you have your husbands PSA figures and his T and N numbers from the diagnosis?

I know it's a worrying time and the wait until 27th July will be forever. I am sure there will be other posts after mine with further (better!!) advice.

As a community we are with you on this journey - don't be afraid to come online and ask anything - or even just for a chat.

Kind regards

Brian.

1. His PSA was initially 616 but last blood test it was down to 100 so that’s good. what are  T and N numbers? 

It is such a worrying time I am in a worst state than my husband is and I am trying so hard to not show him how upset I am. I need to be in control and sort things and I can't do it with this. All these numbers and letters are so confusing but thanks to all the lovely people on here who have been very kind and patient with me explaining things the hospital haven't told us. Don't be afraid to ask questions on here, I now feel I can. Best of luck. My husband is waiting to start chemo and the thought of it makes me feel sick, I just want to run away and hide and wave a magic wand and make it go away.y hubbie had never harmed a fly in his life, has always helped and been there for others, so why him. 

Oh Shar you have just described me to a T! I always control, sort and have a plan but I’m beat this time! 
I have to be careful that it’s not all I talk about with him that life must go on with some level of normality. On a positive note we live in a beautiful area near the sea so he’s out and about with the dog every day, our family live near and we have an active bunch of grand children. 
thanks

There is something about the sea that I find so relaxing. We love cruising but have had to cancel 3 now for this year, but looking forward to 2024. We went out to a garden centre yesterday for breakfast and as we left home we agreed that we wouldn't talk about it, but it was so hard because I was watching his every move 

Hi JFM

That's good to se his PSA levels going down like that - I am aware of people on here who had initial levels in the thousands!!

On diagnosis after the biopsy the urology department come up with a set of numbers and letters which tells everyone where you are at. If you click on the icon of the beach you will see I am a Gleason 9(5+4) T3a N0 M0.

The Gleason score is how aggressive your cancer is on a scale of 6 - 10. (the numbers making up the total tell you how aggressive it is)

The "T" stage tells the oncologist where the cancer has spread to in and around the prostate.

The "N" stage shows if the cancer has spread to the lymph nodes adjacent to the prostate.

The "M" stage shows if the cancer has metastasised (gone walkabout!) to other parts of the body.

After the "T; N and M" there are also numbers and letters which are used to give more detailed information.

As you and Shar both "like to be in control" I would advise:

* You make sure urology and oncology copy you in on all letters be it internal, diagnosis or to your GP.

* If you live in England get the NHS app and ask your GP for full access - that way I know my test results and what's going on in the background as it happens!

I hope this helps

Kind Regards

Brian.

Hi Shar - I am glad you are trying to lead a normal life. At one point I got fed up with friends and family asking how I was - we are a big family and sometimes you just want to be "normal".

I bought a badge from an online shop that says "No cancer chat today please - I am having a day off" and on a really bad day I have another that says "I suffer from prostate cancer and I don't have the energy to pretend I like you today"

It does give my time to myself and people do leave me alone and we get on with life - I almost feel like an "alien" sometime as I have cancer.  

Hope all is well with you two.

Kind Regards

Brian.

 JFM 

There's a really good publication from Prostate Cancer UK that explains the TNM numbers. You can download it here:

prostatecanceruk.org/.../how_prostate_cancer_is_diagnosed-ifm.pdf

Hello Shar and JFM, oh I so identify with what you are both going through! Where you are now, I was a few months ago. As we were going through the diagnostics , the NHS bureaucratic nightmare , the fears, the uncertainty  etc I felt as if I was losing control of , even, breathing.  We limped through the radiotherapy and, as we were drawing breath I seemed to go through a ‘character change’! I decided that we were letting cancer take over our very existence and it was ruining our lives. I was damned if I would let this state of affairs carry on.! So, we talked things through and determined we would carry on with treatment, appointments etc but would do the things we have always enjoyed to the maximum of our ability. We now do as much as we can when we want and how we want and get on with living rather than fearing dying. Of course, the cancer is always there as are the side effects of the treatment and fears. But we try to push it to the background rather than always there! We live life despite the cancer!

I hope this makes some sense and helps you both get through all the turmoil us wives go through.

one thing I found really helpful at the time was to keep a diary of each encounter and or conversation with anybody medical. I wrote down their names, contact details etc , date, time, what was said etc. this gave me a sense of control because everything was falling about around me but I had a reference point and could say, ‘ you said …..why isn’t this happening, what are you going to do about it, why have you changed your mind etc? ‘. 

as the horrible days passed and the dollops of bad news kept coming I started writing down my emotions.. that was actually cathartic and helped me let off steam without hurting anybody!

finally, we made a formal complaint about the way we were being treated. The diary, dates, names etc came in really helpful to pin point exactly what was happening ( or, more to the point, was not happening as it should) and when. 

my heart goes out to you both and to your husbands. You perhaps won’t believe it now but, if you are like me, you will get to a point where the tears stop, where you can accept, to a certain extent, what’s happening and can start to breathe again and think beyond ‘cancer’ for a few hours at a time and enjoy a treat and smile again.

love got you both x

Thank you worriedwife for such a lovely reply.