Coming to terms impact

User

Posted 05 Jun 2018 at 22:36

Since biopsy results on the 15th March showing me to be Gleason 4:5 T2c, starting Bicalutamide 9th April, then Triptorelin 11.25mg IM injection on 23rd April life has continued mainly as normal. But getting a reminder that my progress appointment is on the 25th of June has hit me hard. I realise that my testosterone blood level has to be about zero and my PSA level also has to be very low. I am realising now how important this appointment is and it will define the rest of my treatment and how I progress into the next phase of my life. Today was not a good day I have suffered severely with emotional impact and have taken it out on my wife and have just finished a bottle of wine luckily I am using using voice input.

It goes to show how true it was that I said to somebody else on here that waiting is the next worst thing to diagnosis.

The next two weeks are going to be awful but luckily I have stored some diazepam that the doctor gave me early in March while I was waiting for my biopsy results. I will either be given the all clear proceed onto radiotherapy in July, or my results will show that I need to have my treatment reassessed, that is my problem.

I suppose compared to many people on here I should feel lucky, but that is not where I am at the moment

User

Posted 06 Jun 2018 at 09:50

Originally Posted by: Online Community Member

It’s very hard isn’t it friend. No ones PCa is better or worse than the others it seems. It does depend on the individual and how they handle for sure. The waiting is awful but sadly never seems to go away. You just progress to the next wait. I’m now 3 yrs post op and 3 1/2 yrs since diagnosis and I’m in the worst place yet. Virtually guaranteed advanced spread , rapid doubling , nothing visible anywhere , zero treatment regime , and a psa test in two weeks guaranteed to be 24 to 50.
I get the Diazepam Red wine combo — I feel my life isn’t actually worth saving anymore sadly.

Hey Chris I think your life is worth saving! Your matter of fact approach and comments are a real help. Yes you have a problem no one us going to deny that but your cancer is hormone naive, is non symtomatic and YOU are in control! Keep at it!!

User

Posted 06 Jun 2018 at 11:45

Originally Posted by: Online Community Member

Hi Pallance

I notice that you said that since starting your treatment life has continued pretty much as normal and I appreciate that a lot of us might get a bit twitchy when we are waiting for results, but if you are able to hang on to the fact that life is still pretty normal you will get through this.

Don't try to second guess what any test result will be otherwise you will be fixating on the PCa instead of getting on with life as worrying about it isn't going to change a thing.

I realise that not being you I can't begin to understand how you view life and we all deal with things in different ways, but I really hope that you can get to grips with this as waiting for test results is likely to remain a fact of life for you as it is for us all.

All the best to you.

Kevan

Thanks mate, you are of course correct I cannot stop thinking about the possibilities for my review in two weeks so I need to keep busy doing something and I do realise that alcohol is not the answer just makes the path a bit smoother

Edited by member 06 Jun 2018 at 11:46 | Reason: spelling

User

Posted 06 Jun 2018 at 23:20

Originally Posted by: Online Community Member

In all the years I have been here we have never (never) had a member who was having radical RT but was cancelled at the 8 week stage. We have never (never) had a member who was hormone resistant at the 8 week stage.

Who told you such a thing was possible? At 8 weeks, the hormones are only just getting going so you are not likely to be below castrate yet.

Another site I was on suggested that if at the 8 week point my PSA was not below diagnosis level, 38 in my case, this would mean the hormone therapy was not working on my part cancer, so there would be no point proceeding with RT at the usual 3 month point. Thankyou for the statistical information Lyn, helps me calm down a bit. In addition, even if I’m not at castration level at my 8 week point, should my PSA have lowered significantly?

Edited by member 06 Jun 2018 at 23:33 | Reason: Additional question

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User

Posted 06 Jun 2018 at 00:54

I think you are suffering from over-expectation. You may not be at castrate level this quickly, and you will almost certainly not be at nadir yet so the results of your blood tests are unlikely to affect the plan to do radical RT in July.

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

User

Posted 06 Jun 2018 at 07:24

I get the Diazepam Red wine combo — I feel my life isn’t actually worth saving anymore sadly.

User

Posted 06 Jun 2018 at 09:08

Hi Pallance

Don't try to second guess what any test result will be otherwise you will be fixating on the PCa instead of getting on with life as worrying about it isn't going to change a thing.

All the best to you.

Kevan

User

Posted 06 Jun 2018 at 09:50

Originally Posted by: Online Community Member

User

Posted 06 Jun 2018 at 11:45

Originally Posted by: Online Community Member

Hi Pallance

Don't try to second guess what any test result will be otherwise you will be fixating on the PCa instead of getting on with life as worrying about it isn't going to change a thing.

All the best to you.

Kevan

Edited by member 06 Jun 2018 at 11:46 | Reason: spelling

User

Posted 06 Jun 2018 at 12:02

Originally Posted by: Online Community Member

Chris, your story really helps put my PCa into perspective. Every life is worth saving for every minute. As long as we are alive we should savour every one of those minutes. You won’t get a lecture on alcohol from me because I lean on it heavily in my bad moments.

There are some studies on immunotherapy for men with advanced Metastasis

alan

User

Posted 06 Jun 2018 at 21:47

Hi Alan

Being anxious about test results and whether treatment has worked is I think completely normal in these circumstances but please don't let it take over your life. Find someone to talk to whether it is your GP the specialist nurses on here, a local prostate cancer support group, Macmillan or your local Maggies centre if you have one.

You are in this for the long haul and there will be many ups and downs along the way, treatments that make you feel crap, test results to wait for, things that don't go quite to plan and even if you sail through it all and the treatment works perfectly for you there will still be PSA tests for the rest of your life.

if you see any of my previous posts you will see the torment that anxiety can create and 18 months on it is still wreaking havoc in our lives because my husband still refuses to address it. I think if he had sought help at the beginning we would be in a much better place now. (He had RP with no complications and PSA has been undetectable for more than 12 months)

All the best

Julie

User

Posted 06 Jun 2018 at 22:34

When I saw the Oncologist With bad news biopsy results, I was told as my PCa was T2c it would be hormone therapy for 3 months, followed by RT for 6 weeks, then monitor PSA onward. No one mentioned there was a chance at my 8 week blood test review after starting hormone therapy there was a chance I could have a hormone resistant cancer, I only found that out yesterday. So now I have 2 weeks high anxiety to find out if my hormone therapy has worked. Up till now I was led to believe with T2c treatment was straight forward.

Edited by member 06 Jun 2018 at 22:36 | Reason: Spelling

User

Posted 06 Jun 2018 at 23:08

Who told you such a thing was possible? At 8 weeks, the hormones are only just getting going so you are not likely to be below castrate yet.

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

User

Posted 06 Jun 2018 at 23:20

Originally Posted by: Online Community Member

Edited by member 06 Jun 2018 at 23:33 | Reason: Additional question

User

Posted 07 Jun 2018 at 13:51

So sorry to hear you're going through a rough time emotionally, Alan. As you know, that's somewhere I've been myself, and believe me, I know what you're going through. I can really only repeat the very good advice that you gave me when I was going through the mill, which is that you're not alone, and we're all here to offer you support.

I really hope things soon start improving for you.

Very best,

Chris

User

Posted 13 Jun 2018 at 21:26

Originally Posted by: Online Community Member

Just going back over my own experience largely because Pallance has a very similar diagnosis to mine. I didn't have a PSA test until after I had completed all my treatment so I am wondering how a diagnosis that the cancer is hormone resistant was made.

Anyway. This combo of HT and Radiotherapy can have excellent results. I am two years out from 6 months HT plus 20 sessions of "dose painting" External Beam Radiation Therapy and my PSA has settled at 0.8 ng. Of course it may come back but the bugger isn't going to kill me yet and, most likely, not for a good few years yet if at all.

Take heart Pallance. You are still very much in the game as regards this wretched illness.

User

Posted 17 Jun 2018 at 17:21

Hi Pallance, I’ve not been on this site for a while I note you had a similar diagnosis to my husband David who was diagnosed over three years ago G9 T3B, he has had HDR Brachytherapy, RT and three years of HT his P.S.A has been<0.1 to date.

It has been hard, and he’s had side effects, he's quite fit, we have over an acre of garden to manage where we grow our own food, we live mostly off grid and self sufficient. David has also continued to work as a pro musician, albeit not doing so many gigs as he used to he’s 68 next month. We are also involved in a local prostate cancer Charity And other stuff locally.

My message is, yes, life changes yes it is different, yes it has difficult days. We have had holidays, supped wine in the garden and watched sunsets, laughed cried and moaned.we have and chopped wood, for winters, been snowed in and cut off, our life is quite active, though we are not cyclists.

I’ve tried to be supportive, learn about this disease, ask intelligent questions when he has appointments.

I suppose what I’m saying to you is life is different, we have lots of enjoyment, along with the fears, and downsides. Is life worth living most definitely it is. I hope this helps you a bit.

Leila.

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

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