How to cope with an emotional crisis?

User

Posted 17 Jun 2018 at 10:06

My situation:

PSA score of 31 at the start of May. Diagnosed a few weeks ago with PCa. Had mpMRI and TRUS biopsy. Letter from my urologist to my GP on 24th May says "Today I have told him (ie me) that the histology from the biopsy has shown that he, indeed, has prostate cancer. He has a Gleason 3+3 adenocarcinoma of the prostate involving 8% of cores from the right lobe and 16% of cores from the left lobe. His MRI suggests that there is no evidence of any extra prostatic involvement".

OK, I can live with this. Everyone I've seen has told me that what I've got should be curable.

Referred to the regional MDT. Saw the MDT oncologist last Monday, and he referred me on to another urologist to get a template biopsy, because he thinks that the PSA of 31 may indicate more active cancer not picked up by the TRUS.

Saw the other urologist yesterday morning. He drops the bombshell that he thinks that the PSA of 31 may indicate that the cancer is metastatic, in which case, he casually adds, my probable life expectancy is 5 years. He's sending me for a skeletal MRI which I'm due to have at 1pm on Wednesday. He's going to phone me with the results a few days after the scan. If I don't hear from him, he's probably forgotten, so ring his secretary to remind him. I'm due to have a template biopsy probably in the third week in July. I'm booked (but goodness knows whether I'll go) to go away on holiday the first two weeks in July, hence the delay.

So in the course of a single day I've gone from accepting that I've got curable localised cancer, to being told that there's a good chance I've got advanced cancer which is going to kill me. To say that I'm in a state of shock would be an understatement. I've no memory whatsoever of driving the 30 odd miles home from the hospital, although I must have done so. Since then I've been having a massive panic attack. I'm shaking like a leaf and the only thought in my mind is "I'm going to die".

My rational mind is telling me that the initial letter saying "His MRI suggests that there is no evidence of any extra prostatic involvement" combined with the Gleason 3+3 from the TRUS should be reassuring, and that the skeletal MRI is nothing more that a diagnostic test to rule out anything more serious, but I'm at emotional crisis point right now. Can't stop crying and just want to curl up into a ball and make the world go away. Having suicidal thoughts.

Any advice on how to get through this would be greatly appreciated. I'm really struggling right now, but I've got to get through this next week somehow.

Chris

User

Posted 17 Jun 2018 at 13:11

Chris, you are behaving irrationally. The facts are in your first paragraph. The rest is rubbish. You have a minor case of PCa, based on the facts. With.a Gleason score of 9 and PSA of more than double yours, eleven years on, I am very much alive and kicking. The estimate of five years is irresponsible and should be ignored. Banish those negative thoughts and suspicions and hold on to the facts as they reveal themselves. Look at the future with hope and the expectation that you have many years to go, decades even, with modern treatments.

Positive thinking aids positive outcomes!

User

Posted 17 Jun 2018 at 17:10

Hi Chris,

I think we all panic when we are told we have prostate cancer and like you I felt much the same But at the same time i was happy my doctor picked up my problem that came from a private medical for renewal of my 7.5 ton license but with know idea i had a problem.

I had PSA 2.19 with Gleason 3+4= 7 and was offered radical robotic surgery or Brachytherapy after MRI and full radioactive bone scan that came back clear.I was lucky to have a very supportive wife and family around me but still had dark thoughts of my future but i also found loads of support from members of this site from my first blog.

I think it is better to just take one procedure at a time and trust your specialist to get you the best results.I am 21 months on from Brachytherapy with my PSA down to 0.44 in January and hoping for a further drop next week.

Good luck John.

User

Posted 17 Jun 2018 at 17:32

Hi Chris.

I am sorry you are in this situation. No-one can tell you to stop worrying or that your thoughts are irrational, because they are your thoughts and they just don't disappear. Unfortunately you have some time to wait before you get definitive answers and the waiting and unknown is the worst part. Can I suggest you call the Prostate Cancer UK Nurse Specialists on 0800 074 8383, they are there Mon-Fri and maybe you can talk through your thoughts with them, they are extremely helpful and gave me so much support when my partner was unwell. If you don't feel up to talking to them you can chat online. You can discuss your holiday with them as well and see what is the best thing to do. Take care and wish you all the best - Emma x

Edited by member 17 Jun 2018 at 17:33 | Reason: Not specified

User

Posted 17 Jun 2018 at 20:29

Only my twopenn'orth CC but if you can turn some of that panic into anger, that might be easier to manage.

And phone the GP in the morning for an appointment to talk about your emotional wellbeing.

And call the Samaritans if you get distraught in the meantime.

Baby steps are less overwhelming than giant leaps, which is what you are trying to process.

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

User

Posted 17 Jun 2018 at 21:18

Chris,

You have absolutely nothing to be embarrassed about, more importantly you should be proud of yourself for sharing your experience, as there are probably hundreds of men out there who feel exactly the same but would not share this, you have probably made others, without realising it, know that they are not alone with their thoughts and emotions.

Emma x

Edited by member 17 Jun 2018 at 21:20 | Reason: Not specified

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User

Posted 17 Jun 2018 at 13:11

Positive thinking aids positive outcomes!

User

Posted 17 Jun 2018 at 13:25

Everyone has a good friend ??

Now is the time to call on a good friend. Someone to talk to. Don’t be on your own like this

User

Posted 17 Jun 2018 at 13:40

AC, I'm a scientist. I KNOW that my thoughts and emotions are completely irrational, but that knowledge doesn't make them go away. There seems to be a complete disconnect between rational analysis of the situation and the fear I'm feeling - at least in my case.

Any suggestions on how to cope with irrational panic and dark thoughts would be much appreciated, if anyone has any. Taking Diazepam which helps a bit, but I don't want to take any more than the recommended dose. Too easy to become dependent on it.

Chris

User

Posted 17 Jun 2018 at 17:10

Hi Chris,

Good luck John.

User

Posted 17 Jun 2018 at 17:32

Hi Chris.

Edited by member 17 Jun 2018 at 17:33 | Reason: Not specified

User

Posted 17 Jun 2018 at 17:41

Thanks, John. I think my main problem is that I am feeling utterly alone, and that results in the feeling of desperation. I really have nobody I can talk to about these things, and at the moment I can’t even think about it myself without completely going to pieces in tears (which I’m doing now), which would be horribly embarrassing with a stranger. During the week I can at least talk to the PCUK nurses, who are wonderful, but the weekends are the worst time, because all the support lines only operate Mon-Fri.

You’re absolutely right of course in saying that I should trust the specialists, but all this emotional stuff I’m going through now was triggered by the fact that the consultant I saw yesterday had the empathy and compassion of a block of stone, and said stuff that absolutely terrified me.

Chris

User

Posted 17 Jun 2018 at 17:56

Thanks for the kind words, Emma. I have spoken to the PCUK nurses several times and you’re right - they are wonderful. I was OK with my diagnosis until yesterday - I’d come to terms with the fact I’ve got PCa (and other stuff), but seeing the consultant yesterday and being coldly told I might be dead in 5 years has really knocked me for six. I need to wait for the additional tests and the facts, but when you’re alone it’s all too easy to let your mind run away and start imagining all the worst outcomes, particularly given the fact that literally every test and scan I’ve had since the start of this nightmare has revealed more and more devastating news. I’ve reached the stage now where I’m just assuming that every test will reveal the worst possible outcome.

Chris

User

Posted 17 Jun 2018 at 19:21

There something very wrong here? Gleason 6 (3+3). I am 51 years old and Gleason 9 (4/5). They even gave me 50% chance of 10 years but I'm not having that. I will do much better!
I have 50% cores in left lobe and 70% in the right, I am much more advanced but not told anything like as negative as you.
I don't think it's fair what we seem to be told. What am I supposed to tell my family? Gleason 6 is normally active surveillance territory surely????
:(Richard

Edited by member 17 Jun 2018 at 19:27 | Reason: spelling again!

User

Posted 17 Jun 2018 at 19:40

Everything puts me firmly into the “low risk” category, Richard, except my PSA of 31. That’s the elephant in the room which makes them think that my cancer is probably either locally advanced or (God forbid) even advanced, hence the additional investigations to try to find something more.

Chris

User

Posted 17 Jun 2018 at 20:01

Hopefully some of the experts come on line later in the evening. Your specialist at least should explain your circumstances better.......

User

Posted 17 Jun 2018 at 20:10

I’ve got a whole (very long) thread about my saga, Richard, at:

https://community.prostatecanceruk.org/posts/t16056-Very-worried-about-referral-for-high-PSA

so I don’t really want to waste people’s time by repeating the medical stuff here. I thought that asking for advice about dealing with emotional problems was probably an unrelated matter, so I started this new thread, but best to keep the medical discussions on the original thread if anyone does have anything to add (and needless to say I’d welcome any and all opinions!).

Chris

Edited by member 17 Jun 2018 at 20:27 | Reason: Added a link to my original thread

User

Posted 17 Jun 2018 at 20:29

Only my twopenn'orth CC but if you can turn some of that panic into anger, that might be easier to manage.

And phone the GP in the morning for an appointment to talk about your emotional wellbeing.

And call the Samaritans if you get distraught in the meantime.

Baby steps are less overwhelming than giant leaps, which is what you are trying to process.

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

User

Posted 17 Jun 2018 at 20:43

Thanks, Lyn. I’m really embarrassed by this. I thought I was over all the “bursting into tears” phase when I came to terms with the litany of ills that my initial scans showed up, but for some reason yesterday’s consultation has affected me far more than anything that’s happened thus far, probably because this is the first time that anyone’s as much as hinted to me that my PCa might turn out to be incurable and life-limiting.

I’ll take your advice and phone my GP in the morning. She’s been absolutely wonderful throughout all this.

Chris

User

Posted 17 Jun 2018 at 21:18

Chris,

Emma x

Edited by member 17 Jun 2018 at 21:20 | Reason: Not specified

User

Posted 17 Jun 2018 at 22:30

Originally Posted by: Online Community Member

Thanks, Lyn. I’m really embarrassed by this.

Chris

So you are writing on a forum where we discuss penile shrinkage, stress incontinence, the benefits of manual or oral stimulation to encourage blood flow to the nether regions, diarrhoea, constipation, mucus, moobs .....

......... and you feel embarrassed by a down day??????

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

User

Posted 17 Jun 2018 at 23:56

Lyn you forgot female "gush"!!!

User

Posted 18 Jun 2018 at 00:19

The thing about any cancer diagnosis is how it forces you to confront your own mortality and that is without doubt a profound shock to the system.

So your reaction is normal and the fact you are talking about it on here proves you are trying to rationalise your situation and I think this is healthy and will ultimately allow you to come to terms with this sh!t.

My own crisis occurred many months after my initial diagnosis, I won't bore you with the details but I ended up being taken to hospital by the police "for my own safety". After a long chat with the on call physciatrist he declared I was perectly normal and my "breakdown" was simply a result of dealing with too much sh!t. A few councelling sessions and I was back to my old self.

So talking on here is good, talking to councellors is good, as you have found talking to consultants however is not always good!!

User

Posted 18 Jun 2018 at 02:14

Originally Posted by: Online Community Member

Lyn you forgot female "gush"!!!

Ha ha - I did start to type it but then back-spaced. I was worried it would be too much for you to bear!

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

User

Posted 18 Jun 2018 at 21:57

I’m feeling a lot better today. I visited my GP this morning and explained my anxiety issues and she’s put me on a long-term course of Sertraline, a drug which helps with both depression and anxiety, which she reckons will be a lot more effective than Diazapam in the longer term, because I know I’m going to be in this for the long haul. I’ve also spoken to my oncologist, who’s greatly eased my fears about the skeletal scan MRI. He very rightly pointed out that neither the initial MRI scan nor the two subsequent CT scans showed any bone abnormalities, so I should regard this as a routine test. He’s going to phone me personally as soon as knows the scan result, which should be in the imaging MDT on Friday.

User

Posted 22 Jun 2018 at 22:09

That’s good Chris. I too am on sertraline and it has evened my feelings out somewhat.

Ian

Ido4

User

Posted 24 Jun 2018 at 22:24

It's an interesting thread and I wonder if there is another aspect to the whole "I've got cancer - my life is over" scenario. I'm looking back on my own diagnosis and how I reacted. I felt a strange feeling almost of relief because it had been caught earlyish (PSA 7.2 - Gleason 7 Stage T2B) but there was something else going on and it's this:-

I expected I would get cancer. My Dad died at 57 of PCa and my brother had been diagnosed 2 years before me. For years I have thought I would get cancer, the family history both for this cancer and one or two others isn't great.

The other aspect was my age. I'm 70 later this year - 3 score years and 10 as the bible has it (or so I'm told - I am not a religious person) and I am now getting to that "count your blessings" stage because I have seen, as we all probably have, many people being taken in their early 50s or even earlier. A former colleague and friend died last October at 53, a member of a walking group I'm in died of breast cancer at a similar age back in 2005.

So I was expecting to get cancer and I'm pretty old. My reaction is tempered by those facts. What this thread brings home to me is how important emotional support is and how it's really important to tailor it to the individual. A guy who gets this disease in his early 50s and with no good reason to expect he would get it is in a much darker place than somebody like me.

Don't get me wrong. I hate having this illness and my fears centre around the later stages of the disease. My father's death in 1971 was agonising.

But everybody is different and perhaps we need, as a society, to recognise this a bit more. Some will take the news better than others.

User

Posted 09 Sep 2018 at 11:29

The ‘water works’ seem to be constantly running for me & im lucky in that after my first chemotherapy infusion PSA dropped 154 to around 12. i can’t get my head around the fact that when diagnosed i felt well & now I feel , rough & it might even get worse before I’m cured!! The PCUK nurse told me that the major reason most of us get emotional is the steroids. Anyway try to see another consultant as they all differ in bedside manor

User

Posted 09 Sep 2018 at 12:10

Redbournite, it's three months since I started this thread, and I've now completely come to terms, emotionally speaking, with my condition and am enjoying life to the full once again. It probably took me a good couple of months to do that, though, and I went through some dark times during that process. Believe or not at the moment, no matter how bad things seem now, you will come out of the other end and accept the way you are now as "the new normal". Of the three things that were wrong with me, two are now sorted out and the third is well in hand, so the future is looking pretty good again.

Cheers,

Chris

User

Posted 09 Sep 2018 at 13:38

That's good news Chris - you have had a lot to contend with, so hope you are indeed now more able to enjoy life,

Barry

User

Posted 09 Sep 2018 at 16:09

Very much so, Barry. Although I'm in a fair amount of post-operative pain at the moment, and probably will be for at least the next month, I find that I'm able to "compartmentalise" it. Just say in my mind, "OK, that's there, so let's just put in away in a corner and ignore it". I went for a very enjoyable walk this morning despite having a level of constant pain that only a few months ago would have had me flat out feeling very sorry for myself. It's amazing what you can come to terms with when the necessity arises!

When you're faced with something you have no control over, you basically have two choices: fall to pieces and mope around feeling sorry for yourself, or accept that this is the way things are, so you may as well just accept it and get on with life. It took me quite a long time to realise that the second option is the only way to return to a normal life (albeit a new "normal"), but that's what I've now done.

Cheers,

Chris

Edited by member 09 Sep 2018 at 16:15 | Reason: Not specified

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