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User
Posted 26 Jul 2022 at 18:43

Hi everyone, my name is Ian (icky is a nickname), I'm a 59 yr old gay man, married to my husband for 23 yrs.

I got my diagnosis yesterday,  the scans have shown that the cancer is already in my lymph nodes and pelvis. I'm waiting on the results of my biopsy (done yesterday) to see how bad things are.

My consultant seems fairly confident and has initially started me on Bicultamide 150mg daily, pending the histology from the biopsy, then we'll discuss ongoing treatment options.

Feel a bit floored by the whole thing atm, and not sure what to feel.

Thanks

User
Posted 26 Jul 2022 at 21:18
Sorry that you find yourself here. I'm sure you already know that your cancer is incurable, but there are many treatment options available which should keep you around for many years to come. You're definitely in the right place to talk to other men with prostate cancer.

If you ever have any medical questions, give the PCUK nurses a ring on the freephone number at the top of the page. They are really knowledgeable and helpful.

Best wishes,

Chris

User
Posted 26 Jul 2022 at 22:09

Hi Icky,

Sorry you find yourself here.

My husband was initially diagnosed with PCa that had also spread to lymph node and pelvis. We got a second opinion at RM and they didn’t agree. After a PSMA pet scan what ever was on his pelvis was deemed benign. He did have the cancer in one lymph node but he had prostatectomy and 14 lymph nodes removed. Things are looking ok for now so just got to keep up the 3 month checks.

What was your initial PSA?

Keep us posted with your results, always worth getting someone else to take a look.

Wishing you well

User
Posted 29 Jul 2022 at 00:21

Sorry to hear this Icky.

Its really early days still and I suppose everyone reacts differently. I think I was probably the opposite with my husband…a bit over bearing and protective….still am really 🤦🏻‍♀️

It’s a huge thing for you both to have to deal with and I think it’s so important that you can talk to each other, he may just need a little more time though to digest everything. Do you have any family or friends that could maybe chat with him….it might be difficult for him to relay his thoughts to you at the moment as he won’t want to cause you anymore stress or anxiety.

Although it doesn’t always have to be negative a cancer diagnosis, it is life changing in many different ways and you will definitely need to support each other through every step.

I know it sounds strange as it’s you who has been diagnosed, but I have often been more worried and frightened than my husband and have found it more difficult to cope with at times. This maybe the same for your husband.

Keep trying to not let it get in between your relationship. Hopefully eventually it will bring you even closer like it has for us.

Sorry I can’t really be of more help but I really wish you well.

Elaine

 

 

 

User
Posted 29 Jul 2022 at 06:08

When OH was diagnosed I was in a state. Talking to MacMillan nurses helped a lot. It is very hard seeing your loved one going through this. Speaking to the Prostate UK nurses and Samaritans was another route for me to relieve anxiety.  

User
Posted 03 Aug 2022 at 20:54
Hiya Icky,

It’s not unusual for the partner of the PCa patient to react in a number of ways, even to the extent of ‘shutting out’ their loved one. It’s early days, you’re both in turmoil and emotions are raw. My only tip at the moment is to give time for this initial period to pass, and a plan for your treatment is sorted. Hope things begin to ease and you both find some acceptance.

All my best, Paul.

User
Posted 03 Aug 2022 at 23:34

Hello Icky,

Sorry you and your partner are going through this, and it is definitely a couple's disease so it will impact both of you, possibly quite differently. He may need more time. It can be a difficult thing to talk about, as you will both have concerns that you don't want to worry the other with. You may have had more opportunity to learn about the condition and to ask questions of your clinicians, and not being the patient, he may struggle more to answer his own questions.

There's a Manchester LGBTQ+ prostate support group Out with prostate cancer, in case you think that might be helpful for the two of you, although you or he might want more time before thinking about this. It meets this Saturday (and monthly).

User
Posted 04 Aug 2022 at 13:12
Hello to Bestie and Andy62!

I'm happy to say that things are a lot better between us now.

We found a moment over the weekend to talk together, and for me to understand his fears. It was, to say the least, emotional, but in a good way. Strangely, watching the Women's Euro Final helped too, not that we're footy fans by any measure.

I get my biopsy results tomorrow, and he's going to come along with me, so we can make any decisions together.

He hasn't read up much on the subject, so last night I offered to take him through some of the jargon and the scoring stuff (Gleason etc) so he's more up to speed when we see the consultant tomorrow.

Thanks to everyone that has taken time to respond to my posts, it's apreciated.

Icky

User
Posted 04 Aug 2022 at 22:41

Really good news.

Best of luck for your appointment tomorrow 

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User
Posted 26 Jul 2022 at 21:18
Sorry that you find yourself here. I'm sure you already know that your cancer is incurable, but there are many treatment options available which should keep you around for many years to come. You're definitely in the right place to talk to other men with prostate cancer.

If you ever have any medical questions, give the PCUK nurses a ring on the freephone number at the top of the page. They are really knowledgeable and helpful.

Best wishes,

Chris

User
Posted 26 Jul 2022 at 22:09

Hi Icky,

Sorry you find yourself here.

My husband was initially diagnosed with PCa that had also spread to lymph node and pelvis. We got a second opinion at RM and they didn’t agree. After a PSMA pet scan what ever was on his pelvis was deemed benign. He did have the cancer in one lymph node but he had prostatectomy and 14 lymph nodes removed. Things are looking ok for now so just got to keep up the 3 month checks.

What was your initial PSA?

Keep us posted with your results, always worth getting someone else to take a look.

Wishing you well

User
Posted 26 Jul 2022 at 23:25

Hi Chris & Elaine

Thanks for replying, it means a lot to know people are out there.

I haven't had the biopsy results back yet, so I don't know what stage I am, nor my TNM or Gleason score, but (from a bit of reading) I'm expecting them to be in the upper ranges.

My PSA score was 64 when my GP referred me to Salford Royal, and I've had both contrast CT and  PET scan (*) as well, the latter showing the migration to the pelvis and lymph node(s).

So it's a waiting game until my appointment a week on Friday.

To date, I'm the only person I know with PC, so it's all a bit new to me.

I have no doubt I'll be well looked after through this whole shebang, but, you know, it's just a bit of a shock.

(*) Apparently the nuclear CT scanner is virtually brand new, so I'm guessing it's top'o'the range!

Cheers 

Icky (Ian)

Edited by member 26 Jul 2022 at 23:28  | Reason: Not specified

User
Posted 28 Jul 2022 at 22:33

Hello all. Here I am again.

Day four since diagnosis. I'm feeling OK about things, I'm a pragmatic sort of person.

Unfortunately the husband hasn't taken it well and is shutting me out. I try and talk to him and reassure him that  everything will (likely) be ok, but I'm just hitting a blank wall.

It's really straining our relationship at the moment.

Any tips or ideas from those that have been in a similar situation?

Cheers

Icky

User
Posted 29 Jul 2022 at 00:21

Sorry to hear this Icky.

Its really early days still and I suppose everyone reacts differently. I think I was probably the opposite with my husband…a bit over bearing and protective….still am really 🤦🏻‍♀️

It’s a huge thing for you both to have to deal with and I think it’s so important that you can talk to each other, he may just need a little more time though to digest everything. Do you have any family or friends that could maybe chat with him….it might be difficult for him to relay his thoughts to you at the moment as he won’t want to cause you anymore stress or anxiety.

Although it doesn’t always have to be negative a cancer diagnosis, it is life changing in many different ways and you will definitely need to support each other through every step.

I know it sounds strange as it’s you who has been diagnosed, but I have often been more worried and frightened than my husband and have found it more difficult to cope with at times. This maybe the same for your husband.

Keep trying to not let it get in between your relationship. Hopefully eventually it will bring you even closer like it has for us.

Sorry I can’t really be of more help but I really wish you well.

Elaine

 

 

 

User
Posted 29 Jul 2022 at 06:08

When OH was diagnosed I was in a state. Talking to MacMillan nurses helped a lot. It is very hard seeing your loved one going through this. Speaking to the Prostate UK nurses and Samaritans was another route for me to relieve anxiety.  

User
Posted 03 Aug 2022 at 20:54
Hiya Icky,

It’s not unusual for the partner of the PCa patient to react in a number of ways, even to the extent of ‘shutting out’ their loved one. It’s early days, you’re both in turmoil and emotions are raw. My only tip at the moment is to give time for this initial period to pass, and a plan for your treatment is sorted. Hope things begin to ease and you both find some acceptance.

All my best, Paul.

User
Posted 03 Aug 2022 at 23:34

Hello Icky,

Sorry you and your partner are going through this, and it is definitely a couple's disease so it will impact both of you, possibly quite differently. He may need more time. It can be a difficult thing to talk about, as you will both have concerns that you don't want to worry the other with. You may have had more opportunity to learn about the condition and to ask questions of your clinicians, and not being the patient, he may struggle more to answer his own questions.

There's a Manchester LGBTQ+ prostate support group Out with prostate cancer, in case you think that might be helpful for the two of you, although you or he might want more time before thinking about this. It meets this Saturday (and monthly).

User
Posted 04 Aug 2022 at 13:12
Hello to Bestie and Andy62!

I'm happy to say that things are a lot better between us now.

We found a moment over the weekend to talk together, and for me to understand his fears. It was, to say the least, emotional, but in a good way. Strangely, watching the Women's Euro Final helped too, not that we're footy fans by any measure.

I get my biopsy results tomorrow, and he's going to come along with me, so we can make any decisions together.

He hasn't read up much on the subject, so last night I offered to take him through some of the jargon and the scoring stuff (Gleason etc) so he's more up to speed when we see the consultant tomorrow.

Thanks to everyone that has taken time to respond to my posts, it's apreciated.

Icky

User
Posted 04 Aug 2022 at 22:41

Really good news.

Best of luck for your appointment tomorrow 

 
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