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It’s all rather new to me

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User
Posted 04 Nov 2021 at 14:43

I went to the GP in July and had quite a few blood tests and numerous scans.

On 31st August I went for some (17) biopsies and the Dr taking them just nonchalantly mentioned that I have prostate cancer. I was expecting it but not that way he delivered it, anyway, I then saw a surgeon who performs surgery robotically to remove the Prostate. I was in favour of the surgery as it was the quickest way to get the cancer out of my body and was even booked in for surgery. In one of the many letters there was a reference of roots involved with my seminal vesicles and at the MDT meeting someone noticed that this point had not been investigated enough. Surgery cancelled and then another PET CT scan that ultimately decided that robotic surgery was a nonstarter and hormones/radiology was the better treatment plan. I started the hormone injections on Monday 1st Nov and have been pencilled in for 39 sessions of radiology starting mid January 2022. 

My post is not a moan nor a complaint and I believe what they have told me, I can be cured. Joining and posting to a group like this is not something I have done before and ITS ALL RATHER NEW TO ME.

One that upset me was the way my wife took the news, 2 1/2 years ago she was diagnosed with dementia and we were just getting on top of that and then this happened. Life isn’t always fair but we have had and have a good life so as far as I am concerned its all good.

Edited by member 04 Nov 2021 at 16:42  | Reason: Not specified

Papajambo

User
Posted 04 Nov 2021 at 22:41

Hi Papajambo, welcome. Strange way to be told, by the biopsy doctor. I had a feeling they could tell, but was not sure. When my biopsy was done 12 cores, she said "do you want to have a look at it?" Being curious I looked at a pink sliver of flesh and thought "interesting". Anyway I was diagnosed G9 With 95% involvement in 11 out of 11 cores.

I did think, I wonder where the 12th core went? Now I think she had realised the prostate was riddled with cancer and by the time she got to core 12 thought, I can't even bother putting this in the sample bag, there is more than enough evidence already. So that was the one she showed me.

I'm glad your MDT team were on the ball. It's a bit worrying that it had got as far as a surgical appointment before someone said stop.

Edited by member 04 Nov 2021 at 22:41  | Reason: Not specified

Dave

User
Posted 06 Nov 2021 at 08:02

Originally Posted by: Online Community Member
My Gleason score was 4+5=9 and I’ve stage 3 advanced cancer but remain convinced that as the oncologist says “I will be cancer free”early next year

Well I hope he is right!  Must say I am surprised that an oncologist would be so ascertive, particularly with your diagnosis.  Even with the best of treatment there is always the possibility for further cancer to be detected from very soon after treatment to years later. It  can be devastating when this happens as some of us know.  Men who have been diagnosed and those treated for PCa are therefore monitored for quite some time maybe  for years.  So I don't wish to rain on your parade but suggest you consider this pronouncement with cautious optimism.

Just to elaborate, sometimes all indications after treatment may be that all the cancer apperared to have been removed by surgery but there is the potential for a few cancer cells to have escaped or in the case of RT some may have proved radio resistant even though scans appear clear for a time.  Then there is always the possibility with RT that tumours can regrow as happened to me after 2 years of clear MRI's.

Edited by member 06 Nov 2021 at 08:15  | Reason: addition

Barry
User
Posted 12 Nov 2021 at 16:44

Really glad your wife is getting the help that she needs. In those first few days I did get in touch with counsellors as I couldn’t see a way forward and really felt that I would need help….luckily that passed and things got better after talking everything through with family and friends. And of course being on this forum had a massive impact for me. 

My husband has opted for surgery even though spread to his local nodes, he will be having them removed at the same time, but then will almost certainly need ADT within 6-12 months of op recovery. He has started on hormones already too.

Enjoy your time in Vienna and your caravan trips. We have a motorhome too so try to get away when we can….the short breaks do us good.

Wishing the very best to you and your wife.

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User
Posted 04 Nov 2021 at 22:41

Hi Papajambo, welcome. Strange way to be told, by the biopsy doctor. I had a feeling they could tell, but was not sure. When my biopsy was done 12 cores, she said "do you want to have a look at it?" Being curious I looked at a pink sliver of flesh and thought "interesting". Anyway I was diagnosed G9 With 95% involvement in 11 out of 11 cores.

I did think, I wonder where the 12th core went? Now I think she had realised the prostate was riddled with cancer and by the time she got to core 12 thought, I can't even bother putting this in the sample bag, there is more than enough evidence already. So that was the one she showed me.

I'm glad your MDT team were on the ball. It's a bit worrying that it had got as far as a surgical appointment before someone said stop.

Edited by member 04 Nov 2021 at 22:41  | Reason: Not specified

Dave

User
Posted 05 Nov 2021 at 20:58
My Gleason score was 4+5=9 and I’ve stage 3 advanced cancer but remain convinced that as the oncologist says “I will be cancer free”early next year

Papajambo

User
Posted 06 Nov 2021 at 08:02

Originally Posted by: Online Community Member
My Gleason score was 4+5=9 and I’ve stage 3 advanced cancer but remain convinced that as the oncologist says “I will be cancer free”early next year

Well I hope he is right!  Must say I am surprised that an oncologist would be so ascertive, particularly with your diagnosis.  Even with the best of treatment there is always the possibility for further cancer to be detected from very soon after treatment to years later. It  can be devastating when this happens as some of us know.  Men who have been diagnosed and those treated for PCa are therefore monitored for quite some time maybe  for years.  So I don't wish to rain on your parade but suggest you consider this pronouncement with cautious optimism.

Just to elaborate, sometimes all indications after treatment may be that all the cancer apperared to have been removed by surgery but there is the potential for a few cancer cells to have escaped or in the case of RT some may have proved radio resistant even though scans appear clear for a time.  Then there is always the possibility with RT that tumours can regrow as happened to me after 2 years of clear MRI's.

Edited by member 06 Nov 2021 at 08:15  | Reason: addition

Barry
User
Posted 06 Nov 2021 at 19:50
Hello Old Barry, many thanks for your comments but I’ve got to be positive as my wife took the news very badly and if I were to be all doom and gloom I don’t know what the affect would be for her so it’s all positive from me.

I don’t look on your comments as neither negative but more grounded, especially as you’ve gone through this as you shared with me.

Take care and best wishes for the future.

Papajambo

User
Posted 06 Nov 2021 at 23:14

Hi Papajambo,

I think that’s a really good attitude to have. You have to be positive and push for the best to happen. I think it’s very normal and natural for both parties (husband & wife) to be really scared when you get this news as I know we are! Most of our days are spent getting on with life though and enjoying everything that comes our way. We of course have our more difficult times (mainly waiting for answers and treatment) but thankfully fewer than our good times. 
Best of luck to you both 😊

User
Posted 07 Nov 2021 at 12:59

You will see if you click on my profile and read my biography that I too have policy of being optimistic. As long as you base your treatment on the facts, how you think about your life is up to you and thinking positive is usually more fun than thinking negative.

So though I agree with Barry, that the words "cancer free" are unusually optimistic, I would be quite happy to run with that unless proved otherwise.

Dave

User
Posted 07 Nov 2021 at 13:09
"In remission" is the term that oncologists usually prefer to use. I'm not sure that cancer can be "cured".

Best wishes,

Chris

User
Posted 12 Nov 2021 at 15:53

Hello Elaine, we most certainly are getting on with life, however, my wife needed (and still gets)help from the mental health crisis team. She fell to bits. We are also getting some buddy support via the McMillan  for her.

We are planning a quick short trip to our favourite city, Vienna early next year, planning trips with our touring caravan etc. 
Radiology is being scheduled for mid January 2022 and then the unusual check ups etc 

Papajambo

User
Posted 12 Nov 2021 at 16:44

Really glad your wife is getting the help that she needs. In those first few days I did get in touch with counsellors as I couldn’t see a way forward and really felt that I would need help….luckily that passed and things got better after talking everything through with family and friends. And of course being on this forum had a massive impact for me. 

My husband has opted for surgery even though spread to his local nodes, he will be having them removed at the same time, but then will almost certainly need ADT within 6-12 months of op recovery. He has started on hormones already too.

Enjoy your time in Vienna and your caravan trips. We have a motorhome too so try to get away when we can….the short breaks do us good.

Wishing the very best to you and your wife.

 
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