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Gleason 9 but only M1a

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User
Posted 24 Mar 2019 at 07:55

Hello,

 

it’s the first time for me writing in a forum. I read some of your posts and I hope somebody with similar experiences can help me or give me some information.

 

My husband Paul (70) was diagnosed with T4 N1 M1a, Gleason 9 (4+5), PSA 360. The oncologist said it is as bad as Gleason 10 and he would have to live about 2 years, maybe less, maybe more. I thought before it is not as bad, because it hasn’t spread to bones or organs (yet) but the oncologist said this could be even worse because the cancer is not growing in a “normal” way. It has spread to a lot of lymph nodes in the pelvic area and back and his kidney is affected too.

 

The biopsy was at the end of December, now it is March, he started hormone therapy tablets a week ago and they probably won’t start the Chemotherapy till May. That seems to be a long wait for me. He has got new symptoms every day and lots of symptoms are normally side effects (night sweats, feeling sick, headaches, constipation, pain in groin/belly/back, fatigue...) of therapies but he hasn’t even started yet. How can that be? Is his testosterone level maybe low already, is there a chance that the hormone therapy won’t work?

 

Lots of questions and no answers but maybe there are no answers and we just have to wait and see. I am just worried a lot and don’t know what to do.

 

I hope somebody can give me some advice or share similar experiences.

 

Thank you!

 

Mairi

Edited by member 24 Mar 2019 at 10:30  | Reason: Not specified

User
Posted 24 Mar 2019 at 13:04
Maori, you said your husband hasn't started hormone therapy yet but also that he started on HT tablets a week ago. Which is it? If he is on hormone therapy he may well be experiencing rather a lot of the usual side effects at once whereas most people don't experience quite this impact. The HT will hold the PCa at bay and reduce the prostate size ready for the chemo to deal with the spread when it is started. Don't panic, things will likely improve from now on.

AC

User
Posted 24 Mar 2019 at 14:29
I’m not entirely sure , but I think M1a indicates spread to lungs which may be why the diagnoses is quite dark. I had lots of pelvic nodes cancerous and I am G9 aged 51. I recently had nodes involved in abdomen and a kidney affected. More scans soon. Best wishes and luck to you
User
Posted 24 Mar 2019 at 17:37
Hi Mairi,my OH was diagnosed over three years ago T3 N1 M1a Gleason 4+5 PSA 23 .

His is in the para aorta nodes , no bone involvement.

We’ve never asked or been told a time scale but he started on hormone tablets and then the 3 monthly injections .

He then proceeded to have 6 sessions of chemo in which time his PSA went down to 0.01 undetectable which it has stayed ever since.

Gary worked all through chemo and still holds down a full time job .He is currently (for 3years now) been on arm j of the stampede trial and doing well.The main downside is the fatigue ,we now have a new normal life ! .

Keep strong and once the medications take effect and you see results it will get easier .

Ask away any questions and I’m sure someone will come along and advise or share their experience.

Best wishes

Debby

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User
Posted 24 Mar 2019 at 13:04
Maori, you said your husband hasn't started hormone therapy yet but also that he started on HT tablets a week ago. Which is it? If he is on hormone therapy he may well be experiencing rather a lot of the usual side effects at once whereas most people don't experience quite this impact. The HT will hold the PCa at bay and reduce the prostate size ready for the chemo to deal with the spread when it is started. Don't panic, things will likely improve from now on.

AC

User
Posted 24 Mar 2019 at 14:29
I’m not entirely sure , but I think M1a indicates spread to lungs which may be why the diagnoses is quite dark. I had lots of pelvic nodes cancerous and I am G9 aged 51. I recently had nodes involved in abdomen and a kidney affected. More scans soon. Best wishes and luck to you
User
Posted 24 Mar 2019 at 15:22

Originally Posted by: Online Community Member
Maori, you said your husband hasn't started hormone therapy yet but also that he started on HT tablets a week ago. Which is it? If he is on hormone therapy he may well be experiencing rather a lot of the usual side effects at once whereas most people don't experience quite this impact. The HT will hold the PCa at bay and reduce the prostate size ready for the chemo to deal with the spread when it is started. Don't panic, things will likely improve from now on.

AC

 

Thank you for your answer. I’m sorry that was a bit confusing. I meant the symptoms were there during the last two months before he even had started with hormone therapy. Yes I hope it will start getting better.

User
Posted 24 Mar 2019 at 15:47

Originally Posted by: Online Community Member
I’m not entirely sure , but I think M1a indicates spread to lungs which may be why the diagnoses is quite dark. I had lots of pelvic nodes cancerous and I am G9 aged 51. I recently had nodes involved in abdomen and a kidney affected. More scans soon. Best wishes and luck to you

Thank you Chris! M1a means the cancer has spread to distant lymph nodes. In his case pelvic and retroperitoneal lymph nodes and that’s affecting one of his kidneys. Nothing was found in bones and organs. Best wishes to you too!

Edited by member 24 Mar 2019 at 15:52  | Reason: Not specified

User
Posted 24 Mar 2019 at 17:37
Hi Mairi,my OH was diagnosed over three years ago T3 N1 M1a Gleason 4+5 PSA 23 .

His is in the para aorta nodes , no bone involvement.

We’ve never asked or been told a time scale but he started on hormone tablets and then the 3 monthly injections .

He then proceeded to have 6 sessions of chemo in which time his PSA went down to 0.01 undetectable which it has stayed ever since.

Gary worked all through chemo and still holds down a full time job .He is currently (for 3years now) been on arm j of the stampede trial and doing well.The main downside is the fatigue ,we now have a new normal life ! .

Keep strong and once the medications take effect and you see results it will get easier .

Ask away any questions and I’m sure someone will come along and advise or share their experience.

Best wishes

Debby

 
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