waiting for the op

User

Posted 22 May 2014 at 20:35

hi, my husband was diagnosed 7 months ago and will finally be having his prostate out next wednesday. From first shock of diagnosis to present day, it has been a roller coaster ride in hell, and most of that was due to the way it has all been handled, ie :- notes being put on the wrong pile so we wait longer for results, no help or support whatsoever, delays in tests and not having anything explained to us in detail.

We eventually met the surgeon about 6 weeks ago, (we travelled a 400 mile round trip to the hospital ) and in the space of 5 minutes he completely destroyed us.... he was brutal and blunt and didn't show any concern about the state he left us in. He basically said that sex was over and it's about time we changed our attitude because you have life threatening cancer!!! no one had put it anywhere near as blunt as that as we were under the misguided impression that it was just basic treatable cancer.

We tried to change hospitals or even pay private but we were told we were running out of time and that we had to go with the option they had given us. I was initially very angry because if they hadn't lost notes etc, we would still have had time and we could have chosen a hospital and surgeon who cared. We are still coming to terms with it and to say we are scared to death is an understatement, if it wasn't for prostatecancerUK helpline I don't think we could have got through this as no one else seemed to care. We still feel alone and invisible to those who should be supporting us and we seem to hit resistance wherever we turn.

We know there are countless others going through this so any advice or help would be greatly appreciated and if anyone else has had a bad experience with the professionals, please let us know how you dealt with it

http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

User

Posted 22 May 2014 at 22:53

Hi Dany,

Can you give us a bit more info about your husband and his diagnosis, especially his Gleason (a G and two numbers usually) and his staging (a T with one number and sometimes a letter). That will help us to help you.

It isn't necessarily true that your sex life is over but sometimes people have to be shocked into facing reality. It won't take you long as a member here to realise that there is no such thing as a basic okay-kind of cancer. It kills men too young and is very hard to live with for many people. The side effects of the treatments can be devastating and the side effect of not having treatment can also be unpalatable. On the other hand, one side effect of treatment is being alive so you have to put this in context.

Depending on how advanced your husband's cancer is thought to be, he might have nerve-sparing surgery. This means that eventually - with or without tablets, injections or a vacuum pump - he might recover his erections and be able to have intercourse. If he has to have non nerve sparing surgery, then he would never be able to get an erection on his own but there are treatments that can work for some men in this situation. Even if he could never get an erection again, there is no reason why you wouldn't be able to continue having a loving and sexual relationship together just without penetration.

In your position I would try not to feel too mistrustful of your surgeon. He may have been brutal but might be the best surgeon in the world and that should be more important to you in the long run. A good experienced surgeon with a steady hand can make the difference between getting it all out with as few side effects as possible and no recurrence or a life of incontinence and further treatments because they didn't get it all.

Personally, I would rather have a specialist that says it all straight than some of these wooly ones who pretend that everything is going to be hunky-dorey afterwards. We have had men join here who were totally shocked and unprepared for the aftermath of treatment. Better to know what the worst could be and then be pleasantly surprised when it turns out better than you dared hope!

I hope this has helped you at least a little bit,

Lyn

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

User

Posted 22 May 2014 at 23:23

Hi Dany

If you could put your husbands statistics into your profile I may help us to understand at what stage your husband is at i.e. PSA,

Gleason score, T staging, and results of any scans he has had. I am sorry you have found yourself here, but it is a a good place for information as you will find out, the people on here will help you with any advice that may help you through this difficult time, as we have all been there.

Unfortunately you are not alone in coming across the uncaring attitude and downright rudeness, some medical professionals exhibit, I for one came across it in my journey. My experience was that when I was diagnosed with a PSA of 94.4 and a Gleason score of 4+3, T3b I was told I would die of it, not with it and as a surgeon he could not do anything for me as it had probably gone to the bones, this proved to be incorrect, a MRI suggested I had lymph node involvement, this proved also to be incorrect, and was offered RT, but at the last minute I was told it was not a given, and was to take a few holidays and I had time to get my house in order, this news was delivered to me by the most obnoxious oncologist I have ever met, my reaction was that this man and I use the term loosely, had not got my best interests at heart, so I did my research and found one of the top surgeon in the country, and got myself a referral, via my GP, but when I told the uncaring Oncologist this he threw his toys out of the pram, walked out and refused to shake my had with the words " well RT would have little affect to you" so I came home thought it through, rang my Surgeons secretary and the operation was booked approx 2 weeks later and after my operation my PSA came in at 0.42 so there was a small amount remaining, but for me it was the right choice, the surgeon was informative and caring which was a complete reversal of what I had endured for the 6 months previous, do I have any regrets NO, apart from I wish I had taken this route earlier. Now I must emphasise this is the route I took and is not right for everyone, the decision, can only be made by the individual, and I am not for the minute suggesting you follow it.

My point is that you don't have to put up with a person you may not have confidence in, there are option, either through the NHS or privately, I wish you the best in your journey and am sure others will come along with help, as they are a great bunch on this forum.

Ps my post crossed with Lynn's post and I must agree that the experience of the surgeon is paramount.

Roy

Edited by member 22 May 2014 at 23:37 | Reason: Not specified

User

Posted 23 May 2014 at 15:03

Hi Dany,

With the op imminent, have you looked through this forum for tips about surgery & made a list ? e.g. peppermint tea as first few drinks after op to help with wind. Jogsuit bottoms for ease with catheter. A bucket to hang the overnight bag in.

I'd suggest research in this direction rather than anger at surgeon. If he can spare nerves he will but we don't know your staging or other details .

Yes, it's a serious situation but there is a wealth of good experience here if you have questions.

User

Posted 24 May 2014 at 11:15

We have been much the same.Email me and I will tell you. h.meeghan@gmail.com

User

Posted 24 May 2014 at 13:21

This is an open forum for anyone to read posts.

Best to use the forum message facility rather than post an e-mail address ?

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