Psycological approach to deal with risk of recurrence

User

Posted 23 Jan 2024 at 13:52

Dear All,

I would like to discuss and potentially learn from your experience on how to deal with this risk as explained in the title of the thread.

We all agree that one of the big problems that can potentially affect our mental health is the fear to deal with a recurrence and the question is what is the best approach to protect yourself from this becoming a recurring thought.

I was thinking a lot about this in the last days and weeks and to me there are, at the extreme, 2 approaches

n.1 -> forcing oneself more or less with success into a minimization risk mode, sort of denial: we know there is a risk but we try to minimize it, donwplay it, make it something almost impossible to happen. Not everyone is able to do it and there is an intrinsic level of lie embedded into this approach. It can be successful if nothing happens, but if recurrence takes place then one can find himself completely emotionally and psycologically unprepared to deal with this step. With all the emotional and mental consequences of such trauma.

n.2 --> hope for the best prepare for the worse approach. In this approach the risk is not denied, but it is made part of the life. The possibility of having recurrence is treated as something concrete and possible; the risk is therefore part of the life, with all the pressure and insecurity that comes out of it also for the people around and the family. This approach probably prepares one better if the recurrence takes place but one pays a higher cost day by day as you don't offer yourself the opportunity to detach from this unfortunate situation.

In your experience which of these 2 approach have you adopted or have you put in place further strategies to deal with it?

Thank you!

Fed

User

Posted 23 Jan 2024 at 19:18

Well I am one of those that hoped for a clean recovery post RARP but now has an increasing PSA so 'looking forward' to salvage radiotherapy.

It doesn't seem to be affecting me mentally - I mean sh*t happens and everything I have discovered so far indicates that it's still curable. I don't know how I will react to the SRT but some people are fine with it and others have issues so there is no need for me to worry about it until it happens. As long as I don't need HT :)

So I guess the answer to your question was that I kind of anticipated further procedures in the back of my mind rather than pinning everything on a complete and immediate cure.

User

Posted 23 Jan 2024 at 19:05

Hi Fed.

I'm a year post RARP, PSA checks thus far have all been undetectable, I've got another next week. I was told because the cancer had breached the prostate capsule and had a high Gleason 9 (4+5), that I had a high chance of recurrence.

I'm neither an optimist or a pessimist, and have got it in my head, that a recurrence is likely. If it happens it will not lessen my bitter disappointment, but at least its something I'm mentally prepared for.

It's only since I've joined here that I've seen how common recurrences are and how delayed they can be. I thought if you hadn't had one within a year you weren't likely to get one but there are blokes on here who had a recurrence 4 or 5 years after radical treatments.

I'm pretty sure that if I have a recurrence, I'll be more gutted than I was following initial diagnosis, but I'm prepared to deal with that. Even if it means lying face down on the kitchen floor, crying my eyes out and punching the ground, so hard and for so long, that I crack the tiles.

It seems to me that you can never be absolutely sure that you've killed the beast and you must be prepared, for it to once again, raise it's ugly head.

Adrian

Edited by member 23 Jan 2024 at 19:16 | Reason: Typo

User

Posted 23 Jan 2024 at 21:09

I’m in a slightly different position from you guys in that surgery was ruled out for me as my staging was T3b. So whilst SRT is an option for you, the chances are that if recurrence occurs with me it will mean probably mean a lifetime of HT…which given the side effects I have had, scares the s*** out of me. How do I deal with it?

1. Sertraline…this was prescribed for me for anxiety which occurred when I started HT, a well known side-effect. I have no idea what I would be like without this, and I don’t intend to find out!
2. I keep myself VERY active and busy and try to enjoy each day as if it were my last.
3. Be active in this forum. I find being involved here helps me counter my anxieties.
4. Maggies! I find being able to talk openly to other men about my feelings helps me come to terms with what the future might hold for me if things don’t go according to plan. It’s also good to listen to other Mens stories, some of whom have a very poor prognosis and yet remain incredibly positive…I find them inspirational!
5. have as much fun as this disease and treatment allows me to😊

Derek

User

Posted 23 Jan 2024 at 21:09

Originally Posted by: Online Community Member

Hi Fed.

It seems to me that you can never be absolutely sure that you've killed the beast and you must be prepared, for it to once again, raise it's ugly head.

Adrian

Hello Adrian,

you are very supportive with your answer and positive attitude. Thank you so much for this.

I wish you the best for your upcoming test!

Fed

User

Posted 24 Jan 2024 at 01:12

John's strategy has been neither of the ones you propose. From diagnosis (at age 50) through RP, recurrence, salvage RT and then a PSA that bobbles up & down around the 0.1 mark (which means he is still on 3 monthly testing some 14 years after the RP) his entire strategy has been based on blanking. He has a remarkable ability to come out of a hospital appointment, immediately forget all the bad news and remember the good bits. In a way that has been hard as it means every time there was bad news, he was bowled over by it but within a couple of hours, he had wiped it from his memory.

Very irritating for the wife / partner who remembers everything, keeps notes, etc etc ... :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 24 Jan 2024 at 10:40

Originally Posted by: Online Community Member

Adrian, I have already had a recurrence on three occasions and may shortly know if I am heading for a fourth recurrence.

Your resilience is fantastic Chris and I truly admire your attitude to the disease.

I'm not so much dreading the cancer recurring, it's the thought of yet more treatment. I have anxiety issues with hospital visits. It's the main reason I chose RARP, because it was just an overnight stay. The thought of 35 visits for RT made me feel physically sick.

A mate of mine of mine who had open prostatectomy 15 years ago, said he was absolutely devastated when he was told he had a recurrence and I can understand that.

As I said I will cope if I get bad news, and my motto like yours, is dont worry about things that may never happen. However, worrying about ifs and maybes, is different to dreading a likely event. I'm quite laid back, but I know, if there is recurrence, it will be much more difficult for me to deal with than the initial diagnosis and surgery.

Adrian

Edited by member 24 Jan 2024 at 10:58 | Reason: Typos

Show Most Thanked Posts

User

Posted 23 Jan 2024 at 19:05

Hi Fed.

It seems to me that you can never be absolutely sure that you've killed the beast and you must be prepared, for it to once again, raise it's ugly head.

Adrian

Edited by member 23 Jan 2024 at 19:16 | Reason: Typo

User

Posted 23 Jan 2024 at 19:18

Well I am one of those that hoped for a clean recovery post RARP but now has an increasing PSA so 'looking forward' to salvage radiotherapy.

So I guess the answer to your question was that I kind of anticipated further procedures in the back of my mind rather than pinning everything on a complete and immediate cure.

User

Posted 23 Jan 2024 at 21:09

Derek

User

Posted 23 Jan 2024 at 21:09

Originally Posted by: Online Community Member

Hi Fed.

It seems to me that you can never be absolutely sure that you've killed the beast and you must be prepared, for it to once again, raise it's ugly head.

Adrian

Hello Adrian,

you are very supportive with your answer and positive attitude. Thank you so much for this.

I wish you the best for your upcoming test!

Fed

User

Posted 23 Jan 2024 at 21:14

Originally Posted by: Online Community Member

Well I am one of those that hoped for a clean recovery post RARP but now has an increasing PSA so 'looking forward' to salvage radiotherapy.

It doesn't seem to be affecting me mentally - I mean sh*t happens and everything I have discovered so far indicates that it's still curable. I don't know how I will react to the SRT but some people are fine with it and others have issues so there is no need for me to worry about it until it happens. As long as I don't need HT :)

So I guess the answer to your question was that I kind of anticipated further procedures in the back of my mind rather than pinning everything on a complete and immediate cure.

I am discovering in this forum great people with incredible strenght and , it is very helpful. Thank for your reply!

I think you nailed the main point: how one engages and connects with the risk. I think it depends a lot on one's personality but I still believe that to keep mentally healthy one it is better to face it and accept it vs. deny it.

User

Posted 24 Jan 2024 at 01:07

Originally Posted by: Online Community Member

there are blokes on here who had a recurrence 4 or 5 years after radical treatments.

My dad's recurrence was 13 years post-op - he even had the NHS letter at the 10 year mark telling him he was officially in remission :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 24 Jan 2024 at 01:12

Very irritating for the wife / partner who remembers everything, keeps notes, etc etc ... :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 24 Jan 2024 at 06:05

Originally Posted by: Online Community Member

My dad's recurrence was 13 years post-op - he even had the NHS letter at the 10 year mark telling him he was officially in remission :-(

Cheers for that, now I'll definitely never feel safe. 😁 😉

Perhaps, yours and John's different ways of interpreting results, gives a more balanced approach to dealing with things. As a couple you seem to be coping very well. 👍

Edited by member 24 Jan 2024 at 06:22 | Reason: Not specified

User

Posted 24 Jan 2024 at 10:00

Adrian, I have already had a recurrence on three occasions and may shortly know if I am heading for a fourth recurrence. Following a poor histology, I knew within weeks of surgery that there was a 30 percent chance of recurrence.

I have a philosophy of , don't worry about things you can't change, If you can change things get on and do it.

So if my last treatment wasn't successful, I will ask what the next plan is.

I have long since stopped getting PSA anxiety, it is what it is. Worrying won't change the result.

Thanks Chris

User

Posted 24 Jan 2024 at 10:40

Originally Posted by: Online Community Member

Adrian, I have already had a recurrence on three occasions and may shortly know if I am heading for a fourth recurrence.

Your resilience is fantastic Chris and I truly admire your attitude to the disease.

A mate of mine of mine who had open prostatectomy 15 years ago, said he was absolutely devastated when he was told he had a recurrence and I can understand that.

Adrian

Edited by member 24 Jan 2024 at 10:58 | Reason: Typos

User

Posted 24 Jan 2024 at 11:45

On my 6 week post op consultation, my surgeon's first words were 'Congratulations you are cured)'. Whilst I knew that was an optimistic (and possibly irresponsible) pronouncement at the time, it did at least give me confirmation that the op went well. Being a realist, verging on the pessimistic side, I have always been prepared for a recurrence and my last 3 tests have shown an upward trend although still small numbers (0.06, 0.08, 0.1,). I fully expect my next test to follow the trend and eventually to be referred to oncology. With that mindset there are no surprises and I find it really easy to cast it out of my mind in between tests. My thoughts are always with the unfortunates who don't find out until the disease has reached an advanced stage. So, whilst I, like all of us, would prefer not to have PCa, I am thankful for my early diagnosis and treatment and take comfort in that.

Peter

User

Posted 24 Jan 2024 at 12:10

Originally Posted by: Online Community Member

My thoughts are always with the unfortunates who don't find out until the disease has reached an advanced stage. So, whilst I, like all of us, would prefer not to have PCa, I am thankful for my early diagnosis and treatment and take comfort in that.

My thoughts exactly Peter and I especially feel for younger men than us, with younger families.

I've read you bio and your post op cancer staging was T3a, that was the same as mine. I always thought T3a meant that the capsule had been breached? Mine showed extra prostatic extension?

Adrian

User

Posted 24 Jan 2024 at 13:09

Yes, I too thought T3a meant a breach but apparently it is also used when the tumour is pushing hard on the boundary. I sometimes wonder if they can be certain enough to tell the difference in such cases. We are after all dealing with microscopics.

Peter

Notification

Join the online community now.