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Another worried wife

User
Posted 01 Feb 2025 at 21:26

Just wanted to say how helpful I’ve found this forum in terms of info and found it just when I needed to restore a little bit of hope. Husband, 51 yo Firefighter diagnosed with advanced PC on 8 Jan. T3bN0M1b. Gleason 9. Started on Abiraterone and steroids. Have to be honest our world fell apart. Having to break the news to 18 and 22 year old kids was just painful and I felt very guilty for not being stronger for my husband. Reading some of the conversations has helped me to feel less like a lost soul and that there is still some positivity to hold onto. Have to say my husband is a glass half full person which I’ve never found comes naturally to me. Trying to adopt more of his attitude but it’s difficult. Thanks to those who post info, it’s very helpful. Another worried wife x

User
Posted 01 Feb 2025 at 23:55
It's a great resource on here... Just remember none of us are experts - we just think we are!
User
Posted 02 Feb 2025 at 07:48

I'm sure you are aware of the compensation scheme that your husband as a firefighter exposed to carcinogens is entitled to  - its probably the last thing on your mind right now but even so its important.

 

Edited by member 02 Feb 2025 at 07:49  | Reason: Spelling mistake

User
Posted 02 Feb 2025 at 08:36

Hi

i am a wife too. I can’t say anything that can make the worry go away and I would not try. Just know there are lots of wives and partners on this website who are willing to offer support when they can as well as the real experts the men who are faced with this disease.

I hope your husband is advised of his full treatment plan soon. Every life is precious but it s so sad when relatively young men find themselves in this horrible position. 

User
Posted 02 Feb 2025 at 12:16

Hi ,I was in the exact same position just over 9 yrs ago . 4+5 N1M1 spread to lymph nodes. It was the worst time ever waiting ,and telling our 4 children , They are adults so easier to communicate to. Treatment was prosap ,early chemo (6) then onto abi / Enzo on a trial. Gary was 55 at diagnosis .Things will settle down once treatments kick in and the PSA starts to fall.
All I can say is life will be different but as we’ve experienced over the last 9 yrs life goes on . Gary’s still working ,we have great holidays and have welcomed 7 grandchildren in that time .
Good luck in your journey and ask away any questions you need answered, this site has helped me over the yrs .
Debby x

Edited by member 02 Feb 2025 at 12:17  | Reason: Not specified

User
Posted 02 Feb 2025 at 13:45

Strong, thanks for the reply, I am 11 years into my journey, in the last year my cancer has spread to numerous lymph nodes. My oncologist was looking at trying treatments that let's say we're not in the conventional order. I thought I was going onto Abiraterone with prednisolone, but he then suddenly said zoladex and bicalutamide first. A fellow member sent me a link to a trial of abi & steroid without the injections & Bic and it still  seemed to work.

Hope your treatment goes well, I have had surgery and three lots of RT, I have only had six months of Bicalutamide a couple of years ago. I am still hormone sensitive, not hormone resistant. I think ABI is also being used more and more at the begining of treatment not just when other treatments have failed, so don't read too much into your treatment plan.

Thanks Chris

User
Posted 02 Feb 2025 at 18:32

Hi another worried wife,

Don't beat yourself about your feelings..we all deal with this in different ways and the fact your OH is glass half full type is good. Staying positive is a major plus on this journey. I’ve suffered the full range of emotions…..anxiety(I’m going to die), anger(why me?), sadness(what’s happened to my body?), and joy(I’m hopefully cured🤞🤞).

Once you have a treatment plan in place I’m sure both of you will feel better…just be good to yoruselves in the meantime.

Best of luck on your journey,

Derek

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User
Posted 01 Feb 2025 at 23:55
It's a great resource on here... Just remember none of us are experts - we just think we are!
User
Posted 02 Feb 2025 at 07:48

I'm sure you are aware of the compensation scheme that your husband as a firefighter exposed to carcinogens is entitled to  - its probably the last thing on your mind right now but even so its important.

 

Edited by member 02 Feb 2025 at 07:49  | Reason: Spelling mistake

User
Posted 02 Feb 2025 at 08:36

Hi

i am a wife too. I can’t say anything that can make the worry go away and I would not try. Just know there are lots of wives and partners on this website who are willing to offer support when they can as well as the real experts the men who are faced with this disease.

I hope your husband is advised of his full treatment plan soon. Every life is precious but it s so sad when relatively young men find themselves in this horrible position. 

User
Posted 02 Feb 2025 at 09:17

Sorry you find yourself on here. Prostate cancer UK  has nurses who are brilliant, they work weekdays and the number is at the top of the page. Has he had any other treatment or injections apart from the Abiraterone and steroids, are you in England, 

Hope the treatment goes well.

Thanks Chris

User
Posted 02 Feb 2025 at 09:48

Another worried wife here. Though in comparison to many it is luckily not so advanced (so sorry for your husband's diagnosis Stronggard3 95)

Husband had biopsy early December, 13 out of 14 were positive, Gleason 7 (4+3), some cribriform, PNI on one side. 

PET PSMA scan was clear, we got the results on Friday. :)

So basically waiting for OP now. 

We have not told the kids (16yo, 13yo, 9yo) as husband does not want to . He said I could tell our oldest (19yo), which I did. I wish we could tell the others though as I feel they must sense something is up. I know it is his call and obviously he will have to tell them something before OP. 

How and how much did anyone else tell their kids? I am especially uncertain how to tell the 9yo. 

 

All the very best to all of you and your partners. 

User
Posted 02 Feb 2025 at 12:16

Hi ,I was in the exact same position just over 9 yrs ago . 4+5 N1M1 spread to lymph nodes. It was the worst time ever waiting ,and telling our 4 children , They are adults so easier to communicate to. Treatment was prosap ,early chemo (6) then onto abi / Enzo on a trial. Gary was 55 at diagnosis .Things will settle down once treatments kick in and the PSA starts to fall.
All I can say is life will be different but as we’ve experienced over the last 9 yrs life goes on . Gary’s still working ,we have great holidays and have welcomed 7 grandchildren in that time .
Good luck in your journey and ask away any questions you need answered, this site has helped me over the yrs .
Debby x

Edited by member 02 Feb 2025 at 12:17  | Reason: Not specified

User
Posted 02 Feb 2025 at 12:44

Originally Posted by: Online Community Member
It's a great resource on here... Just remember none of us are experts - we just think we are!

To be be fair, there's a select few on here, who would score highly on Mastermind, if they picked prostate cancer as their specialist subject. They know who they are and can anonymously thank this post. 😁

Edited by member 02 Feb 2025 at 12:53  | Reason: Typo

User
Posted 02 Feb 2025 at 13:23

Thanks Chris. We are in Scotland. He had 28 days of Bicalutamide (I think) then an injection, another one to be had in March. I was very confused as when I read (and googled way too much) that Abiraterone was prescribed AFTER hormone treatment has failed. At that point we had no idea whether it had failed or not. Just found the terminology, info and everything a bit overwhelming. Still very early days on the Abi but so far no side effects, appointment later on this week to check his blood pressure, cbc, PSA etc. Appreciate no-one has a crystal ball but reading stories of men on here in similar situations years on from diagnosis does give you a little bit of positivity and I feel I need all I can get at the moment. Thanks so much to everyone who’s taken the time to read and comment x

User
Posted 02 Feb 2025 at 13:36

Sorry to see you on here too Fragen. It’s so difficult. Kids are quite perceptive, they will know something’s up. Mine are older (adults technically but in my eyes will always be ‘kids’) I didn’t want to tell them until we knew exactly what happening. Husband said he wanted them to know and I had to respect his wishes so we were very honest when it all kicked off in Sept. I’m no expert obviously but I think it’s easier to tell them than not and you can be careful with your explanation and choice of words. Don’t even have to mention the C word. I don’t think my two have really grasped it yet. Dad always strong, fit and healthy and at the moment appears no different. Yours will obviously know something’s wrong due to the op and hospital stay. So difficult to navigate for everyone, sending you good wishes and strength x

User
Posted 02 Feb 2025 at 13:45

Strong, thanks for the reply, I am 11 years into my journey, in the last year my cancer has spread to numerous lymph nodes. My oncologist was looking at trying treatments that let's say we're not in the conventional order. I thought I was going onto Abiraterone with prednisolone, but he then suddenly said zoladex and bicalutamide first. A fellow member sent me a link to a trial of abi & steroid without the injections & Bic and it still  seemed to work.

Hope your treatment goes well, I have had surgery and three lots of RT, I have only had six months of Bicalutamide a couple of years ago. I am still hormone sensitive, not hormone resistant. I think ABI is also being used more and more at the begining of treatment not just when other treatments have failed, so don't read too much into your treatment plan.

Thanks Chris

User
Posted 02 Feb 2025 at 14:47

We men, when diagnosed with this dreadful life threatening/changing disease, forget that it is a couples' disease and wives/partners need help and sympathy to help them to support their husbands and partners. With hindsight I realise that I acted very selfishly and at the time I didn't realise how shocked and upset my wife was. 

That was fourteen years ago and when we discussed how we both felt at the time, my wife pointed out what she wrote in her diary at the time:

Cancer can change a sensitive and loving man through fear and pride, into a selfish version of himself. Normally a kind loving husband and father, he turned into a frightened, self-absorbed person

Shortly after diagnosis came the divisive effect. Pratap didn’t want anyone to know about the diagnosis, so I couldn’t share my fears with anyone. I kept my few close friends ignorant of our worries, which in turn made me feel less of a friend. I was expected and wanted to support Pratap but he didn’t realise that I needed some emotional support too.

Trapped by the notion of ‘not wishing to be defined by cancer’ he wanted to suffer it all out in secret by himself. Other than our adult children we didn’t tell our wider families or friends. He certainly knew my despair, that I could not derive any comfort from anyone else. Fortunately I practise yoga and meditation and found peace in that way.

We have moved on from that. He did not lose his basic loving sensitivity really, but he was very stressed obviously by the prospect of the operation and fear.

Fortunately the damage I caused did not affect our relationship at all.

 

 

Edited by member 03 Feb 2025 at 14:36  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 02 Feb 2025 at 17:35

Fascinating perspective Pratap, I can only speak for myself and don’t want to generalise, but I was a bit like you…didn’t want to tell anyone except close family and friends, and I couldn’t bear to watch or listen to anything about cancer, no matter what type of cancer it was. I don’t think I was selfish though with my family and especially my wife…maybe she would say differently, I must ask her🤔🤔🤔🤔
I realise now that I just hadn’t come to terms with my disease and once I DID, then I was able to open up and now I am more than happy discuss my disease with anyone. in fact I was having a conversation on the plane on the way home from Fuerteventura. I had one of my flushes, got my fan out and they looked puzzled so I explained. I don’t thrust it down people’s throats but I reckon if you can help awareness in any way then it’s worth it.

The turning point for me was when my wife (finally) dragged my along to  Maggies to speak to a councillor with her, and talked me into joining the men’s cancer support group. i remember my first session, I wasn’t going to speak…but I did and when I’d did I opened up about everything going on in my life, not just the cancer. And when I came out I felt so much better. I still go to Maggies every week I can, and I see the same thing every time a man comes in with a new diagnosis of cancer. They’re like a rabbit in headlights, but if they open up about it(sometimes privately with a member after the group session is finished) they go home feeling SO much better. I am convinced that it helps them come to terms with this disease. We have many tears(and tissues on standby!) but we have so many laughs and positive news as well. on Friday I was telling them about my testosterone return and the fact that it’s a double edged sword….on the one hand it’s great to feel like a man again, but on the other hand I am scared s*** that when it comes back, my PSA will start to rise again. Hope! That’s what we have and we just have to hope that all will be well.

Derek

User
Posted 02 Feb 2025 at 18:32

Hi another worried wife,

Don't beat yourself about your feelings..we all deal with this in different ways and the fact your OH is glass half full type is good. Staying positive is a major plus on this journey. I’ve suffered the full range of emotions…..anxiety(I’m going to die), anger(why me?), sadness(what’s happened to my body?), and joy(I’m hopefully cured🤞🤞).

Once you have a treatment plan in place I’m sure both of you will feel better…just be good to yoruselves in the meantime.

Best of luck on your journey,

Derek

User
Posted 02 Feb 2025 at 21:49
Merrivales husband is probably one of the trial subjects who have changed Abi to an upfront treatment that is proven to deliver. It used to be a second line treatment but not any more.
User
Posted 02 Feb 2025 at 23:18

Originally Posted by: Online Community Member
Merrivales husband is probably one of the trial subjects who have changed Abi to an upfront treatment that is proven to deliver. It used to be a second line treatment but not any more.

yes he was , it was the stampede trial . He was originally given abi and Enzo combo (arm j) . That along with prosap totally wiped his strength away ,but he was determined to stay on it . About 3 yrs ago it was reported that taking both gave no more significant than just taking the Abi ,so the Enzo was stopped . His PSA has continually been undetectable. He’s still monitored just taking Abi and prosap with 12 weekly blood tests and phone calls .

definitely worth asking about trials ,even if given a placebo you are monitored a lot more than normal appointments.

Debby 

User
Posted 03 Feb 2025 at 14:34

Hi Derek

My wife doesn't think about that decision on my part but I still feel very guilty! Even now nobody other than our two adult children and their wife/partner know about my history of prostate cancer! Of course a lot of people I have never met, as in this forum, know a lot about me. I am weird!

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 03 Feb 2025 at 21:41

Pratap, I shut my wife out of my decisions when I was diagnosed, it was my problem I was going to sort it my way. I did talk to complete strangers about the cancer. I am not proud of how I did things. You are not weird ,just coping with things your way.

Thanks Chris

 
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