anxiety and tears

User

Posted 02 Jun 2017 at 17:37

Can anyone help me with my fear? I have had help from people but ultimately they cannot help me cope with the fear. Total and complete fear, like many of us Im sure.

From the diagnosis in Feb 2016 found by chance, through the various false hopes that surgery would sort it...it didnt...then SRT....looks likely to have failed....total ED in spite of both nerves saved, and the prospect of HT in the future, less good life until HT stops working. Only 57 years old, and married for the first time only 7 years ago. All these let downs, psa coming back etc, all within 15 months, not years like some folks get.

Sure, everyone has their stories of sadness....im no more special than anyone else, but can anyone suggest ways of helping me from crying in absolute angst, very regularly. I was ok for a while after SRT especially as the first reading was good, at 0.03. Just 3 months later its 0.5 and I just think here we go again, but of course no cure now. That's it.

My wife is being lovely, even a bit tough at times, but I do need strategies. It's bloody hell!

Thank you,

David

User

Posted 03 Jun 2017 at 22:30

David

Thank you for being honest in your post. Sometimes I think it can be difficult to be really straight with people about how cancer is affecting your emotional state. I'm 46 with Gleason 9. I'm convinced I won't live long enough to collect my pension. My plans to explore the world after retirement look like they may not happen. I've two teenage children. I'm fairly sure I'll see them graduate from university. May well see them married off. Will I get to babysit my grand kids? Who knows. I see elderly men at the PCa clinic I attend and I think that they at least got to 70 before getting it. I've had a successful career and doors are just starting to open in a truly exciting way for me, but I can't plan my career at this point as I don't yet know how my PCa is going to progress. And I won't even mention ED and my fear of having to go on to hormone therapy. I think we all go through such a range of emotions. That's what cancer does to us.

And yet I'm grateful that I do have time to enjoy my life, my family, my career. Many cancers kill much more swiftly than what ours does. So, although I hate PCa, I'm glad I've got years ahead and not months.

I've got a good counsellor that I'm talking things through with. She can't cure me, but I'm hoping she'll help me better manage the situation in which I find myself.

And the people on this forum have been great. I still can't believe some days that I'm a member of a PCa forum. It is very surreal. But I'm glad of the people I've met on this site - people full of love, care, kindness, knowledge. People willing to share their knowledge and experience to the benefit of us all.

Don't really know what else to say.

Ulsterman

User

Posted 02 Jun 2017 at 20:53

I can't stop crying at the moment. Neither can my wife. Statistically I won't even reach your age ! I know that doesn't help. I thought it had got easier but it's just got worse again. Bazza's advice has always been good in that acceptance is the only cure when other options seem to have failed. A new life and always shadowed my sadness , yet one that you can get on with still and enjoy as much as you can. Don't give up ok. You're in the panic phase and it doesn't help :-((

User

Posted 02 Jun 2017 at 21:00

I think in your emotional state you are losing touch with the facts of your situation. For example you have said above

"SRT ... looks likely to have failed" - you have absolutely no basis for thinking this

"Prospect of HT in the future, less good life until HT fails" - you have no reason to think you will need HT in the future, at least no more than any man will have at the back of his mind the possibility that the cancer may come back one day

"Just 3 months later it's 0.5 ... of course no cure now" - I think this is a typo as you posted on another thread that it was 0.05

I might be bang out of order here but I think you need more help than anyone here or even your wife can give you. Is there a Maggies centre at your local hospital or a Macmillan service or local hospice? These often provide counselling for people that have cancer and I believe Macmillan offer counselling specifically for people that are struggling after successful treatment (a recognition that surviving cancer can cause a specific type of mental distress - a sort of why me, what if, when circle)

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

User

Posted 03 Jun 2017 at 13:49

Yes sorry about that but I don't generally do personal messages. I think it is much safer to have everything out in the open .... that way, if there are any mistakes or misinformation there are lots of other members around to correct the error!

Re PSA rising when cancer cells die. You will see it often on here - when men are on chemo the PSA can rocket upwards, and the PSA can jump up and down a lot after RT. Have you looked at my profile to see John's PSA trend before and since salvage RT? The thing to remember is that PSA is not a measurement of how much cancer there is; it is a measure of how much antigen is being produced in your body and that antigen is made by cancerous breast or prostate cells, healthy prostate cells, breast milk producing hormones and the adrenal gland (which is why PSA can rise slightly in 'fight or flight' situations or after significant weights / gym training etc)

Edited by member 03 Jun 2017 at 15:06 | Reason: Not specified

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

User

Posted 03 Jun 2017 at 23:01

I used to feel angry about John having to sit in a clinic surrounded by old men. Now I am more circumspect - some of those oldies may have been on the same path as us for 10 or 15 years - they may also have been young men at diagnosis and that gives the rest of us hope :-)

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

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User

Posted 02 Jun 2017 at 20:17

David, I was exactly where you are when I was 47. I cried oceans of tears, had so much anger and so much anxiety I felt I could never deal with it. But you do. Despite the darkest of deep black places you find yourself in, you have two choices, give up and let it beat you into submission or to literally, as I was told, "man up" and face whatever comes your way. I guarantee you things will get easier. I guarantee the tears will lessen. I guarantee you will still lapse into sadness. I also guarantee that you will gain control of the demons though the cancer may still ultimately prevail.

Give in to the tears. Don't bottle them up. Feel sorry for yourself, angry at all the happy healthy people, the old couples walking hand in hand, the life you would have had had you not been diagnosed. BUT THEN YOU TAKE CONTROL OF YOUR EMOTIONS SLOWLY, LITTLE BY LITTLE UNTIL YOU HAVE THE UPPER HAND. YOU WILL, EVENTUALLY. I PROMISE YOU.

Good luck brother.

Bazza

Edited by member 02 Jun 2017 at 21:54 | Reason: Not specified

User

Posted 02 Jun 2017 at 20:38

David,

When I was diagnosed in July 2013, after the initial shock, I accepted that it was very highly probable that PCa would be the cause of the end of my life. That left two questions, when and how was I going to deal with it? I couldn't answer the when question although I could take some control by telling my Onco that quality of life was of greater importance to me than quantity of life.

As far as how I was going to deal with it, I had two choices, let it make me miserable and thus blight the lives of those who love me or treat the situation with a sense of optimism and a resolve to enjoy my life to the full. It was an easy choice, the outcome was going to be the same whichever course I took but getting from A to B was going to be far worse if I chose the first course.

I hope to not falter from this course all the way to B.

User

Posted 02 Jun 2017 at 20:53

User

Posted 02 Jun 2017 at 21:00

I think in your emotional state you are losing touch with the facts of your situation. For example you have said above

"SRT ... looks likely to have failed" - you have absolutely no basis for thinking this

"Just 3 months later it's 0.5 ... of course no cure now" - I think this is a typo as you posted on another thread that it was 0.05

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

User

Posted 02 Jun 2017 at 21:31

David

I finished SRT last week, three years after surgery and expected a PSA test straight after SRT, but as the onco said we do not want to micro manage each part of the treatment. So it is just a case of get on with life until it is time to worry. As said Maggies have some great staff who can help with anxiety management.

Thanks Chris

User

Posted 02 Jun 2017 at 21:49

Thank you all, you wonderful people. You are ALL correct, and all your comments will help me. I think it's worse just now because I didn't get an undetectable reading and that was probably unreasonable of me. Also worse because a very dear friend in Sweden just died on the same day. She thought it was a stroke but didn't get better. In fact it was liver cancer gone to the brain. Tragic, so a really bad time.
Thank you all very much, and best of luck too.

David

User

Posted 02 Jun 2017 at 23:49

There seems to be a misunderstanding. In PSA testing, anything less than 0.1 IS undetectable

Edited by member 02 Jun 2017 at 23:50 | Reason: Not specified

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

User

Posted 03 Jun 2017 at 12:12

Thanks Lyn. Technically you are correct in terms of the official line, but undetectable does not necessarily mean nothing there!! I guess. I did write a personal message last night but it wouldn't accept it as your box is full! Oh well. Briefly I did say that I will no doubt torture myself again and again, but I am glad I asked the questions yesterday, and grateful for all responses. Your knowledge seems to be impressive. I didn't know dying cells can give out more PSA. I don't understand that but hey!
Cheers again.
David

User

Posted 03 Jun 2017 at 13:49

Edited by member 03 Jun 2017 at 15:06 | Reason: Not specified

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

User

Posted 03 Jun 2017 at 17:02

David,

I would not get too hung up on PSA figures which it is too easy to read overmuch into. These serve only as a guide in certain circumstances such as over a period. There are at least 27 types of Prostate cancer and some produce low PSA figures ranging up to significantly higher ones. Some are for instance are more radio resistant and then some mutate at some stage. Even consultants sometimes find it difficult to predict how an individual will respond over time. A treatment may provide a permanent cure, or work for various lengths of time before something else is needed to supplement or replace it. With the benefit of accumulated experience and with a patient's histology and scans to refer to, consultant's are in the best position to assess what should be done and when. They should explain and discuss this with patients. So you can be lucky and the cancer never really progresses or is satisfactorily dealt with by a radical treatment or you maybe need one treatment after another - that's the way it is and you have to accept and make the most of the years (hopefully many) that you have. You need to be optimistic but mindful that even years later a treatment that seemed to have been successful may fail and require further intervention.

I wish you well on your cancer journey.

Barry

User

Posted 03 Jun 2017 at 22:30

David

I've got a good counsellor that I'm talking things through with. She can't cure me, but I'm hoping she'll help me better manage the situation in which I find myself.

Don't really know what else to say.

Ulsterman

User

Posted 03 Jun 2017 at 23:01

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

User

Posted 03 Jun 2017 at 23:34

A very good point, Lyn. I now aim to be one of those old men sitting in the clinic.

Ulsterman

User

Posted 31 Jul 2017 at 14:59

Thank you all for your frankness. It really is so good to know that I'm/we're not alone in this emotional maze. And I agree that is certainly good to let emotions have some sway rather that trying to bottle them up.

Best wishes

Boyd

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