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Panic

User
Posted 04 Sep 2016 at 18:39
Hello Everyone,

I have been reading your informative and encouraging messages, but I am still in a state of panic. My OH was diagnosed with PCa last week. PSA 6.6, Gleason 9. Will be getting bone scan result this week. I know it's early days, but I feel that it has already taken over my thoughts to the extent that I can't sleep etc. My OH is being much more sensibly pragmatic until we get the results. I don't want to make things worse for him, so I am being Mrs Braveface. This has all come out of the blue, as he only went to the GP with something minor, having not been for years, and blood tests were offered.

Thank you for reading my message, any advice would be very welcome.

J.

User
Posted 04 Sep 2016 at 20:35
Hello J

Having a shock like this is bound to be a worry for you initially but advising you not to worry is not going to help. We found that reading the information in the Toolkit was helpful because the more we understood about PCa the easier it became to get some perspective and the worry subsided. We were the same as you and your OH. My wife was initially not sleeping I wasn't particularly concerned but talking things through helped her to accept the situation. Your OH is no worse than he was 2 weeks ago and the difference now is that you know he has a problem whereas then you didn't know. Nothing is going to happen overnight to change things and so try not to panic but by just quietly reading the information in the Toolkit on this site you will be doing something constructive and this helps you to feel more in control of things. It will help to fill in gaps for you and point you towards questions you might want to ask when you are given the results you are waiting for.

I hope this helps but I am sure that others will be along to offer their support.

Kind regards

Kevan

User
Posted 10 Sep 2016 at 13:58

Hello Willmay and a belated welcome from me.

That initial shock of diagnosis, especially with no warning symptoms, can really take it out of you and I'm sure must make it worse if you are someone who likes to be in control and know the "whys" and wherefores" .

I speak as one who is much the same!

My husband didn't have symptoms either and his diagnosis was only on the last minute addition to a blood test form by our GP after he went there with a bad back, the origins of which we knew were caused by an accident in the garden.

It is very early days for you both and believe it or not, it will get easier when you get results and confirmations and a treatment plan in place.

Life is never the same again, never normal as it was, but you will adjust to the new normal.

The toolkit is excellent. Don't forget to write down your questions for your consultation and if you can write down the answers. I'm pretty sure that even though there will be both of you in the room, you'll both hear the answers differently - even if it is only in the tone that something is said.

You've found us now, and you know what we are like. Supportive !!

Come back and let us know what the result of the scan is and what treatment is offered. I'm sure that somebody will have the knowledge to advise you.

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 16 Sep 2016 at 20:36

Hello Kevan,
The barium swallow showed a pouch, which appears to be causing the swallowing problem. The gastro consultant rang us today to say he has cancelled the endoscopy and referred my husband to the ENT specialist to get it sorted. As you can imagine this was a relief!
The CT scan is next Saturday, but the OH has already had over a week on HT tablets, with an injection next week. We have now got the toolkit, he doesn't really want to read it and is being very pragmatic about things at the moment, so I am not pushing it at present. To be honest I have been so worried about the swallowing issue that the PCa has almost taken 2nd place. ( I hope that you will understand what I mean). I will start reading it myself this weekend. I still have moments of sheer panic, but am trying to keep calm, helped of course by the OH' s attitude.
I hope you get good news on the 19th.
Kind regards,
Joan

User
Posted 17 Sep 2016 at 09:26
Morning Joan

I am pleased that you have some positive news about the swallowing issue and hopefully the ENT appointment will then give you both a resolution to the problem.

We are a funny lot and all have our own coping methods so there is no right or wrong way to deal with all of this.I find that I like to read up a bit so that things don't take me by surprise but I don't talk to other people about it. My OH is brilliant and I know she worries and so we have had a chat about the possible results on Monday and what could happen as a result. Whatever the outcome I have already thought it through and will deal with it without any drama. Hopefully the Toolkit will prepare you for possible outcomes which equips you to deal with things without worrying too much. Sounds as though you are a bit calmer now that you have one issue being resolved and once you have the results from the CT scan this will also help. It is generally the unknown that causes people worry so as things progress and you learn more so the worry will subside.

Thank you for your good wishes.

Kevan

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User
Posted 04 Sep 2016 at 20:35
Hello J

Having a shock like this is bound to be a worry for you initially but advising you not to worry is not going to help. We found that reading the information in the Toolkit was helpful because the more we understood about PCa the easier it became to get some perspective and the worry subsided. We were the same as you and your OH. My wife was initially not sleeping I wasn't particularly concerned but talking things through helped her to accept the situation. Your OH is no worse than he was 2 weeks ago and the difference now is that you know he has a problem whereas then you didn't know. Nothing is going to happen overnight to change things and so try not to panic but by just quietly reading the information in the Toolkit on this site you will be doing something constructive and this helps you to feel more in control of things. It will help to fill in gaps for you and point you towards questions you might want to ask when you are given the results you are waiting for.

I hope this helps but I am sure that others will be along to offer their support.

Kind regards

Kevan

User
Posted 04 Sep 2016 at 21:55

Thank you so much Kevan.
I think your point that about 2 weeks ago we didn't know that the problem existed is very apt. We have ordered the Toolkit and will also look at it on line. I think that in 'normal'
life, I do like to have a feeling of control, which probably doesn't help in this situation. My OH doesn't find it particularly easy to talk things through, but perhaps the Toolkit will help us to do so. I will try to keep things into perspective and wait to find out the results of the scan. ( I'm afraid that I may be being overly optimistic, but one can but try).
Kind regards,
J.

User
Posted 10 Sep 2016 at 13:58

Hello Willmay and a belated welcome from me.

That initial shock of diagnosis, especially with no warning symptoms, can really take it out of you and I'm sure must make it worse if you are someone who likes to be in control and know the "whys" and wherefores" .

I speak as one who is much the same!

My husband didn't have symptoms either and his diagnosis was only on the last minute addition to a blood test form by our GP after he went there with a bad back, the origins of which we knew were caused by an accident in the garden.

It is very early days for you both and believe it or not, it will get easier when you get results and confirmations and a treatment plan in place.

Life is never the same again, never normal as it was, but you will adjust to the new normal.

The toolkit is excellent. Don't forget to write down your questions for your consultation and if you can write down the answers. I'm pretty sure that even though there will be both of you in the room, you'll both hear the answers differently - even if it is only in the tone that something is said.

You've found us now, and you know what we are like. Supportive !!

Come back and let us know what the result of the scan is and what treatment is offered. I'm sure that somebody will have the knowledge to advise you.

Best Wishes

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 11 Sep 2016 at 09:06
Thank you for your welcome and encouraging words. We are still waiting for the date of the CT scan, the bone scan showed possible activity in a rib, but this could have been an old injury or wear and tear, according to the consultant. In the meantime there is a barium swallow and endoscopy booked due to swallowing problems. So that just compounds the panic!

J.

User
Posted 15 Sep 2016 at 22:48
Hi J

Just wondered if you have any further news yet and also how you are both feeling now after the initial shock.

Kind regards,

Kevan

User
Posted 16 Sep 2016 at 20:36

Hello Kevan,
The barium swallow showed a pouch, which appears to be causing the swallowing problem. The gastro consultant rang us today to say he has cancelled the endoscopy and referred my husband to the ENT specialist to get it sorted. As you can imagine this was a relief!
The CT scan is next Saturday, but the OH has already had over a week on HT tablets, with an injection next week. We have now got the toolkit, he doesn't really want to read it and is being very pragmatic about things at the moment, so I am not pushing it at present. To be honest I have been so worried about the swallowing issue that the PCa has almost taken 2nd place. ( I hope that you will understand what I mean). I will start reading it myself this weekend. I still have moments of sheer panic, but am trying to keep calm, helped of course by the OH' s attitude.
I hope you get good news on the 19th.
Kind regards,
Joan

User
Posted 17 Sep 2016 at 09:26
Morning Joan

I am pleased that you have some positive news about the swallowing issue and hopefully the ENT appointment will then give you both a resolution to the problem.

We are a funny lot and all have our own coping methods so there is no right or wrong way to deal with all of this.I find that I like to read up a bit so that things don't take me by surprise but I don't talk to other people about it. My OH is brilliant and I know she worries and so we have had a chat about the possible results on Monday and what could happen as a result. Whatever the outcome I have already thought it through and will deal with it without any drama. Hopefully the Toolkit will prepare you for possible outcomes which equips you to deal with things without worrying too much. Sounds as though you are a bit calmer now that you have one issue being resolved and once you have the results from the CT scan this will also help. It is generally the unknown that causes people worry so as things progress and you learn more so the worry will subside.

Thank you for your good wishes.

Kevan

User
Posted 24 Sep 2019 at 19:20

Hello Everyone,

Looking back at my state of panic in 2016, I can only thank those who replied to me, it was extremely helpful.

We are now 3 years down the line. My OH had 37 days of RT and has been on HT for the last 3 years. He coped well with both and we have tried to live as 'normal' life as possible. That is, in part, why I have not posted anything over the last years. I am writing today to ask what people feel about coming off the HT after 3 years, as his oncologist wants him to do. My naive mind tends to think that if it's working and keeping his PSA undetectable why change? His oncologist is not the easiest person to talk to or question, so I'd be glad to hear anyone's thoughts.

Best wishes to all who continually keep the Online Community going and apologies for not doing my share.

Joan

User
Posted 24 Sep 2019 at 20:27
Studies have shown no benefit to staying on HT long-term, Joan, and (being on HT myself at the moment) I’m pretty sure that your husband won’t want to be on it a day longer than he has to!

Best wishes,

Chris

User
Posted 24 Sep 2019 at 22:19

Thank you Chris for your reply. It helps to hear that studies have found this to be so. I think I've become concerned due to recently hearing of 2 people on HT, one of whom is in his 14th year and another at 7 years. It made me worry whether OH should be still on HT. He has coped with it very well and I don't want him to go backwards.

Regards,

Joan

User
Posted 24 Sep 2019 at 22:41
People who are on HT for life are those with advanced prostate cancer. Curative RT for localised prostate cancer, which I assume is what your husband (and I also) had is accompanied by HT for a limited time only.

Best wishes,

Chris

User
Posted 25 Sep 2019 at 09:19

That is comforting news Chris. Although OH had a Gleason score of 9, it had not spread. I will return to 'normality' and just have sleepless nights waiting for the 3 monthly PSA results. Again, many thanks.  Best wishes, Joan

 

 
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