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Hubby has just been diagnosed

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User
Posted 13 Feb 2025 at 20:07

On Monday Hubby & I went for his biopsy results and it showed he has prostrate cancer, it seems it's spread outside the prostrate and in his lymph nodes, 17 samples were taken and 13 showed cancer and his Gleason score is 9, his PSA is 24. He's just starting HT, I'm looking at all sorts of supplements a GP friend has said might help boost his immune system,  whilst the consultant said "we are not talking weeks or months, but years" it still worries me and  I'm so scared and trying my best to keep positive for both of us. He is really positive and says it is what it is and we'll be ok. I think he's more worried about the side effects of the HT just now.

We are just waiting on the results of a bone scan now. It's all just such a shock and a lot to take in.

I'm glad I found this site, so apologies now if I ask too may questions, I'm just trying to help & support him the best I can.

User
Posted 14 Feb 2025 at 09:34

Hi Chris,

sorry to hear the news, and sending my best wishes to you and your husband.  It is so scary when you've just had the diagnosis but the good news is, even with metastatic prostate cancer, the treatments available today are so much more advanced than they were 10, or even 5 years ago.  This is why your consultant is able to say that you're looking at years, not months.  

You mentioned looking at supplements etc that can help:  it's definitely a good idea to eat healthily and exercise:  if you're both relatively fit and active then that's a big help.  However, if I could share something that my consultant told me when I was diagnosed back in 2019:  I asked similar questions about diet and lifestyle, and he said to try and have good eating and exercise habits.  But, he added:  "Don't make your life all about the cancer.  Remember to do things you enjoy, too."  Over the years, I've found that advice to be very wise.

All the best, and do keep us posted about your husband's treatment. 

Craig

 

User
Posted 14 Feb 2025 at 21:17

Hi Chris,

Your hubby is so lucky to have you by his side…it’s amazing the number of wives/partners on this site to support their beloved. We men find it difficult sometimes to talk about their health  problems, even more so when it’s ’down below’ so it’s good when women like you can do it for them😊 I was like that until my wife dragged my along to Maggies 6 months enter I wa diagnosed and it transformed the way I deal with my PCa. I was a member on here for months and months but didn’t post, I only became brave enough after my first visit to the Men’s Cancer Support Group. I go most weeks and was there today helping support other men going through the same as me…we had 2 men join the group 3 weeks ago and they were really struggling. Today they were completely different people and able to openly discuss their journey and how they were coping mentally.Everyone always comes away feeling so much better than when they go in.

i won’t kid you that a bumpy ride is not ahead of you, but I would say that if your  hubbies care and treatment path is as good as mine, he has a good future ahead of him. There’s  no doubt that this is the worst part of the journey, lots of waiting around for tests and not knowing what the future holds, but once a treatment plan is in place you both should feel more at ease. tell hubby to just wait and see what side effects the HT brings, I know men through Maggies who have little or no side effects, others like me are not so lucky. But it hasn’t stopped me having fun…well as much fun as my treatment has allowed me to. I think that is so important in getting through this journey for both of you, do lots of nice things together, even simple things like going out for a coffee and spending time talking to each other. it real has helped me doing lots of nice things, being good to myself and family and having lots of treats.

So I wish you both all the best and we’re ALL here to help in anyway we can.

Derek

User
Posted 13 Feb 2025 at 20:07

On Monday Hubby & I went for his biopsy results and it showed he has prostrate cancer, it seems it's spread outside the prostrate and in his lymph nodes, 17 samples were taken and 13 showed cancer and his Gleason score is 9, his PSA is 24. He's just starting HT, I'm looking at all sorts of supplements a GP friend has said might help boost his immune system,  whilst the consultant said "we are not talking weeks or months, but years" it still worries me and  I'm so scared and trying my best to keep positive for both of us. He is really positive and says it is what it is and we'll be ok. I think he's more worried about the side effects of the HT just now.

We are just waiting on the results of a bone scan now. It's all just such a shock and a lot to take in.

I'm glad I found this site, so apologies now if I ask too may questions, I'm just trying to help & support him the best I can.

User
Posted 14 Feb 2025 at 07:00

Chris, welcome to the club nobody wants to join.Ask as many questions as you like, and there are no silly questions. There is a number at the top of the page for the sites prostate cancer nurses, I have found them invaluable over the years.How old is your husband.

Thanks chris

User
Posted 14 Feb 2025 at 16:48

Sorry you are here ,my husband Gary’s stats were almost identical. PSA 23 gleason4+5 spread to lymph nodes.He was 55 and I was 52 .

The worst part is waiting for the results,he had early chemo with HT then onto a trial . Things have moved on since his diagnosis 9+ yrs ago . He still works and we have a near normal life ,apart from sex life . We holiday often and enjoy life . His PSA has been undetectable for nearly 9 yrs . Take each day at a time and feel free to ask questions on this site .There’s a whole lot of experience here .

best wishes 

Debby 

Edited by member 14 Feb 2025 at 16:54  | Reason: Not specified

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User
Posted 14 Feb 2025 at 07:00

Chris, welcome to the club nobody wants to join.Ask as many questions as you like, and there are no silly questions. There is a number at the top of the page for the sites prostate cancer nurses, I have found them invaluable over the years.How old is your husband.

Thanks chris

User
Posted 14 Feb 2025 at 09:34

Hi Chris,

sorry to hear the news, and sending my best wishes to you and your husband.  It is so scary when you've just had the diagnosis but the good news is, even with metastatic prostate cancer, the treatments available today are so much more advanced than they were 10, or even 5 years ago.  This is why your consultant is able to say that you're looking at years, not months.  

You mentioned looking at supplements etc that can help:  it's definitely a good idea to eat healthily and exercise:  if you're both relatively fit and active then that's a big help.  However, if I could share something that my consultant told me when I was diagnosed back in 2019:  I asked similar questions about diet and lifestyle, and he said to try and have good eating and exercise habits.  But, he added:  "Don't make your life all about the cancer.  Remember to do things you enjoy, too."  Over the years, I've found that advice to be very wise.

All the best, and do keep us posted about your husband's treatment. 

Craig

 

User
Posted 14 Feb 2025 at 16:48

Sorry you are here ,my husband Gary’s stats were almost identical. PSA 23 gleason4+5 spread to lymph nodes.He was 55 and I was 52 .

The worst part is waiting for the results,he had early chemo with HT then onto a trial . Things have moved on since his diagnosis 9+ yrs ago . He still works and we have a near normal life ,apart from sex life . We holiday often and enjoy life . His PSA has been undetectable for nearly 9 yrs . Take each day at a time and feel free to ask questions on this site .There’s a whole lot of experience here .

best wishes 

Debby 

Edited by member 14 Feb 2025 at 16:54  | Reason: Not specified

User
Posted 14 Feb 2025 at 19:01
Thank you everyone, hubby is 70 this year, but we are resigned to keep positive and live life to the fullest a best we can, its nice to know your not alone.

Keep safe

Chris.

User
Posted 14 Feb 2025 at 21:17

Hi Chris,

Your hubby is so lucky to have you by his side…it’s amazing the number of wives/partners on this site to support their beloved. We men find it difficult sometimes to talk about their health  problems, even more so when it’s ’down below’ so it’s good when women like you can do it for them😊 I was like that until my wife dragged my along to Maggies 6 months enter I wa diagnosed and it transformed the way I deal with my PCa. I was a member on here for months and months but didn’t post, I only became brave enough after my first visit to the Men’s Cancer Support Group. I go most weeks and was there today helping support other men going through the same as me…we had 2 men join the group 3 weeks ago and they were really struggling. Today they were completely different people and able to openly discuss their journey and how they were coping mentally.Everyone always comes away feeling so much better than when they go in.

i won’t kid you that a bumpy ride is not ahead of you, but I would say that if your  hubbies care and treatment path is as good as mine, he has a good future ahead of him. There’s  no doubt that this is the worst part of the journey, lots of waiting around for tests and not knowing what the future holds, but once a treatment plan is in place you both should feel more at ease. tell hubby to just wait and see what side effects the HT brings, I know men through Maggies who have little or no side effects, others like me are not so lucky. But it hasn’t stopped me having fun…well as much fun as my treatment has allowed me to. I think that is so important in getting through this journey for both of you, do lots of nice things together, even simple things like going out for a coffee and spending time talking to each other. it real has helped me doing lots of nice things, being good to myself and family and having lots of treats.

So I wish you both all the best and we’re ALL here to help in anyway we can.

Derek

User
Posted 22 Feb 2025 at 16:22

So we've been to see the oncologist who will be treating hubby, he's advised that pending the bone scan report, if there is no sign of the cancer spreading to the bones he can treat him with Abiraterone but it will come at a cost, ££850 per month. In the meantime he's now on HT and will be having high dose radiotherapy once his prostrate has shrunk a little.

So fingers crossed it's not spread, and then its a no brainer, no question that we will pay.

Just wanted to find out more and wondered if anyone else had this treatment?

Edited by member 22 Feb 2025 at 16:24  | Reason: Not specified

User
Posted 22 Feb 2025 at 17:08

Why do you have to pay for the treatment? Do you live outside the UK? Is this drug not provided by the NHS?

User
Posted 22 Feb 2025 at 17:55
We are in the uk, but the drug recommended is not on NHS !
User
Posted 22 Feb 2025 at 18:50

Oh how frustrating and completely wrong. If that is the drug most beneficial to your husband the NHS should fund  it. My husband has private medical care and whether that would cover the cost of the drug I don’t know. Private medical care should mean you can choose your surgeon, where your procedure takes places, own room etc but not the medication you are given.

User
Posted 22 Feb 2025 at 18:55

Just looked up about the drug please see link

https://prostatecanceruk.org/prostate-information-and-support/treatments/abiraterone

It seems they do prescribe on NHS in certain circumstances.

User
Posted 22 Feb 2025 at 19:33

Chris, the Abiraterone situation is a bit of a minefield, I am due to start it in about 3 months. It does have to be used in conjunction with other drugs ,in my case zoladex and bicalutamide. 

Are you seeing the oncologist privately, I am having issues with my GP , insurance company and private consultant regarding prescriptions. As said Abiraterone is available on the NHS but you have to meet the right criteria. I thought metastatic spread was a requirement to be suitable for Abiraterone.

I am also a bit confused with the cost and have seen figures ranging from £800 a month to £3000 a month.

Thanks Chris 

https://www.england.nhs.uk/wp-content/uploads/2024/12/2424-Abiraterone-acetate-metastatic-prostate-cancer-interim-clinical-commissioning-policy-proposition-post-pan.pdf

 

Edited by member 22 Feb 2025 at 19:37  | Reason: Link added

User
Posted 22 Feb 2025 at 22:09

Hubby is having treatment solely through NHS, starting with zoladex and bicalutamide. We were told the Abiraterone could start in 3 months along with radiotherapy. Only if the bone scan is clear will we have to pay.

So good job we've got savings to cover it.  It's still a no brainer for us, Keeping positive and I'll do anything that helps my hubby. It seems the treatment with Abiraterone will be for 2 years, so in total abut £22K, yet costs seem to vary depending on where you are treated.

Its just so so wrong that tests for Prostrate are not done as a regular routine for all men when it seems issues are so prevalent and could be treated early and help prevent more health problems.

Then to be charged for drugs to help alleviate the cancer if you don't fit the criteria or live in the wrong area.

Sorry but I think I'm going through the anger phase now, but I'm more angry of the system and the frustration.

 

Edited by member 22 Feb 2025 at 22:15  | Reason: Not specified

User
Posted 22 Feb 2025 at 22:44

Chris, I have a consultation with my oncologist in Thursday, for various reasons I am considering coming back to the NHS. My private hospital nurse has told my insurance company that I am entitled to Abiraterone and prednisolone on the NHS. 

I have lymph node involvement but no bone spread,the difference is that I have had surgery and salvage RT. The usage for Abiraterone in England only changed in the last couple of months, I wonder if your consultant is up to speed. 

I don't know how the nhs charging you for the Abiraterone works. 

In my paper today it says the public no longer has faith in the NHS, no wonder you are getting angry, but don't spend to much negative energy on being angry. 

Thanks Chris 

 

User
Posted 23 Feb 2025 at 08:17

Hi I can sympathise with your anger and I feel the same. It’s part of the grieving process. Mine has calmed down as hubby diagnosed last July but if anything crops up in the media, my anger quickly returns. Although I understand why psa screening was problematic, to withdraw it suddenly leaving men to be diagnosed late is…sorry I can’t find the words…

I hope you can get the treatment on the NHS, I read it’s not available in Scotland but is in England 🤞

User
Posted 23 Feb 2025 at 09:06

I think there should be PSA screening for all men over the age of 50 even if only every three years like breast screening. I know many men recently diagnosed with this disease and none of them were symptomatic and either had a test because of a work medical, family history prompted them or gentle nagging from family members.

Then to add to no screening an apparent lottery as to whether you can get the medication best suited to your situation is very frustrating to say the least.

User
Posted 23 Feb 2025 at 09:51

I agree and to complicate things we’ve been told due to my hubbys advanced diagnosis our son and hubbys brother are at high risk and screening from age 40 recommended. If my hubbys grandfathers liver cancer was a secondary to prostate cancer we’d never have known, so makes it worse for those who get it via genetics. 

User
Posted 24 Feb 2025 at 21:23

Hi

Your husband is in a similar position to me.(TPB 18/23 cores involved ,Gleason 4+4=8 seminal vessels and one lymph node involved) Had a PSMA CT scan just to check if it had spread, luckily it had not .With the above the Oncologist recommended Abiraterone /Prednisolone which I have been taking for the last 6 weeks, this caused blood pressure to rise but I was put on Amlodipine to regulate it and it’s OK now.I can’t understand why you are being asked to pay for this treatment as it’s on the NHS in England.

You are not alone in all this.

 

 

 

 

 

 

 

User
Posted 31 Mar 2025 at 16:16

So the update is that the bone marrow scan showed a spread to his right shoulder blade (scapula lesion), but we were told very minute. He was offered chemotherapy, but was told it would make him ill for 12 months. So he's decided he would rather carry on feeling fit, doing the things he loves and taking the hormone therpay injections with double treatment of either Enzalutamide or Apalutamide, following up with radiotherapy.

He's since had another PSA /  testosterone blood test and his PSA has fallen from 27 down to 3.7 in a matter of 6 weeks. The relief!

I'm making sure he's taking supplements to keep his immune system good, and he's doing a fast, whihc was recommneded by a GP and nurse.

Ive got him a radar key from Disabikity Awareness and a toilet card from MacMillan - just he get taken short.

Are ther any other practical things folks have done to help with ease things??

 

User
Posted 01 Apr 2025 at 02:31

Hi Chris,

Really sorry about your husbands diagnosis. It’s such a shock and as others have said definitely the worst part of the process.

What was the scan your husband had? Mine had a nuclear bone scan initially and it showed cancer in his pelvis. Another doctor we saw wasn’t sure this was correct and he then had a PSMA pet scan which confirmed it wasn’t in his bones….just lymph node.

He had his prostate and some lymph nodes removed, followed by SRT with 2 years HT,  he’s just had his last injection. Waiting game now but hopefully will have done the trick 🤞🏼

Beat of luck to you both and with your husbands treatment.

Elaine

 
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