Diagnosed Monday Husband has Gleason 10 Prostate Cancer

That is an amazing and heartfelt post that I am blown away with.

You are with friends. We are her to support. We are like you, all worried and trying to be patient while wanting everything done in a day.

You are welcome to share anything in anonymity so be brave and say or ask what you wish.

You will be very nervous about how your other half is inside, its very hard to be sure of anything right now but you will both be knocked sideways.

mental health and the physical go hand in hand but this is a couples disease and what affect him affects you.

Theres are many things to read on this site and Millibo and the champions will be here soon to give great advice. Until then stay a calm as you can while waiting for the data to roll in.

This is a safe place and I wish you the very best, keep chatting if you want, we are always around.

Your pathway is unclear but you have us walking with you.

Take care.

sorry I’m no help, but I’m here listening.

Hi D , sorry to hear 

On the plus side looks like no mets although I know further scans needed.

If in vesicles still potentially curable so hopefully the scans will not show anything further.

Like you I sometimes wonder why they can't start him on HT to stop it in its tracks for now although possibly the argument could be that it affects the scans by not showing everything as it is.

I wish you sll the best and see what others say.

Best wishes 

Steve 

Hello Doodlebug, I’m so sorry to hear of your husband’s health problems and how frightened you both are. I know, from our own experience, that you are at the worst part of the journey. At the time we were going through all the tests,  I kept a diary and I wrote, ‘the dollops of bad news just keep on coming.’ I felt as if I was being swamped by it all and the fear and grief for what seemed such a loss of everything we had taken for granted were  overwhelming!

however, I now realise that all the tests were necessary for the medical team to get a clear picture of the cancer - its aggressiveness, its spread etc - to make sure they could arrive at the best treatment plan. Once the plan had been determined, we knew where we were heading and the treatment had started, things seemed to settle somewhat. 

from the support and replies from others on this forum, we learned that life actually does go on and can be lived and, most importantly, enjoyed. We have also learned that the doctors have a big tool box of options to either hope for a cure ( at best) or management and control of the cancer for longer than we dared hope!  My husband had watched his grandfather and father die of prostate cancer but the sophistication and advances in treatments for prostate cancer since then have been massive. 

and… we also found advantages!  The diagnosis brought us up sharply against our own mortality. This is both scary ( we don’t want to die) but also liberating! We realised we don’t go on for ever and so have to make the most of each and every day! We also realised how much we love and need each other! After 50 years of marriage and a lifetime of hard work , we suddenly appreciated each other so much more and drew even closer together! We both realised that we had fought through other difficult events together and, by doing so, we had the strength and experiences to help us get through this unwelcome battle.

so, my message really is, hang on in there, things do settle. Come to this forum with your questions and for support. You will find both in bucketfuls! But, also, remember that we talk from our own experiences and are , mostly, not doctors, consultants, oncologists, urologists etc. We are, though, all at different stages on this journey.

i hope you soon know the full picture and the treatment plan and wish you both all the very best. X

Hello Doodlebug561be9a1 

A warm welcome to the group from me - although I am so sorry to find you joining us.

As others have said -  the hardest part of the cancer journey is the start - the testing, the wait for results and finally the full diagnosis and treatment plan, the anxiety levels can be through the roof. Trust me things will get better and you will adjust to the new normal.

From the results you already have and your husband's other medical conditions I would anticipate the treatment path would be either HT/RT or "triplet therapy" but this very much depends on his outstanding test results. 

I can understand your husband's feelings regarding the catheter and his CKD (if you click on mu user name or avatar you can read my personal journey) I had a catheter for 10 months and CKD nearly killed me!

From the very start of my personal journey I shared everything with my wife and family (we have 4 children) and I found be doing this everyone understood what i was going through and what they could do to help - I found that by being open about my feelings and worries, everyone had a more "relaxed" attitude to the cancer and realised my team were doing everything they could for me.

As a group - we are here for you, we are all happy to answer any questions you have although we all have different experiences - we have that bond, Prostate Cancer. If you need to vent or just let off steam this is also the place to do it, a safe space.

Best wishes - Brian. 

Hi Doodlebug561be9a1 I am so sorry to hear the diagnosis and I fully understand where you are in the journey. Each visit seemed to add more bad news.  I wrote a short post earlier in the year about my experience and you might find this helpful.  

The end - straight to palliative care! 

Please feel free to ask anything and do let us know how you get on.

Thank you so much for your time and reply. Presently I am trying desperately to get someone to speak to me regarding chasing up the Staging CT scan! Left 2 messages this morning as apparently they are ‘on a call’ and will ring me back but nothing yet, all very frustrating. 
I will read your post today. Thank you again. 

You are posting on here for good information from those with experience in addition to that provided by your oncology team.

To know that you are far from alone is somewhat reassuring.Stay away from Google.Advice that I was given but became obsessive for a while.

Just one particular I have had an in dwelling catheter for around 18 months now with little problem.

Yes it’s a bit of a faff but to get a full night sleep and to be able to go out without anxiously looking for loos or secluded spots is of benefit.

Thank you so much for your reply. 

I think it is all the constant waiting for someone to say ‘ok this is what we are going to do for treatment and this is when we start.”

We waited 4 weeks for the biopsy result appointment, our journey started mid July. We also discovered then that a PSA had been done by Nephrology on 1st May, did know about it, they say they don’t know why but it was actioned upon and was only found when my husband asked GP about having a PSA test. Even that appointment we had to wait 2 weeks to get a telephone consultantion. I am still upset about the fact nothing was done in May but at the moment have left it as we are focusing on the now. 

We have told our grown up children and their partners all of the above and about the tests etc. I just don’t feel I can tell them how worried I am at present while they digest the news too. I know they are worried. Everyone is waiting for these tests now and the results. 

I will read your story later, still waiting for the call from the hospital. I’ll try again in an hour 

thank you for this safe space to open up and share my feelings. I want to get my husband to try and go to a local support group but he doesn’t want to talk about that yet so I will respect his wishes and leave it until after results and ask again. It would be good for him to have a safe space too. 

thank you. 

Thank you for your reply. I agree with not (or trying) Google. 

on the catheter side he was getting up 5/6 times a night before so yes it’s better from that point of view. I’m going to point out the positives to him next week if the TWOC fails. My concern with that would be his emotional well being but again baby steps and we will deal with that too if needed. 

Best wishes and thank you for

your support. 

Thank you so much for your message. It sounds like we have so much in common, married 49 yrs, together 50. Been through battles and come through them and I think you are right when we’ve got the tests done and know what can be offered things will be clearer. At the moment nothing is certain or can be planned as we never know when we may have the next appointment. Call

and waiting times are frustrating especially when this is someone you love going through it and you just want them to

get the best service. I know things don’t move quickly and we aren’t the only

people going through this so have to wait but sometimes it just feels so difficult. 

thank you as just opening up helps! 

Im sure I’ll be here again at some point in the future, it’s sad that others have or are going through it too but so grateful for the time given freely and support