prostate cancer advice please (and bit of a rant)

[cancerhatred]

I have a rare cancer that is currently under control but is incurable. Been living with it for 4 years. Now my husband has been diagnosed with prostate cancer and is going to need surgery to remove the prostate. Consultant has said that although side effects of the op vary from person to person, some things will never be as they were before. Incontinence is a risk along with erectile dysfunction. I am so bloody angry I want to hit, punch, scream arghhhhhhhhh. We are only in our mid 50's and this is so bloody unfair. I know there are more ways to make love than just intercourse, I know we should (are) grateful he isnt, as far as we know, facing a death sentence, but that doesn't make things any easier. I just wondered if anyone has any experience of life after prostate surgery they would be willing to share.

Really sorry you're going through this.

It's not my field but I know patients who have been given testosterone to counter the effects There's also a group of drugs called phosphodiesterase type 5 inhibitors which help men to get erections. They don't work like viagra, they'll just increase blood flow when aroused.There's also injections, implants and creams. so even if your DH has any problems there is hope.

I know you're angry and upset, you've both been through a rough time. But you will get around it, and you'll have each other. My friend died not much over a year ago, aged 31 because of prostate cancer.

You could get in touch with Prostate Cancer UK and they could give you further advice and its someone to talk to who know what they're talking about as they have access to the latest research

Email: [email protected]
Tel: 0800 082 1616
Fax: 020 3310 7107

You can also request a live chat prostatecanceruk.org/get-support/live-chat

I'm so sorry you're both having such a crappy time of it. Wish you both the best

Is surgery his only option? There are some incredible new treatments for prostate cancer, but even if surgery is the only option, incontinence and erectile dysfunction do not always follow. Please please please speak to Orchid Cancer - 0808 902 0010, www.orchid-cancer.org.uk
They specialise in male cancers and have been invaluable to our family. We had a really good outcome. Your worry is so understandable, but talk to them and understand your options first.

Thank you both for you helpful advice. I did know about the help with erections etc, it just feels so bloody unfair that nothing will be easy or spontaneous. We already have to make changes to our day to day life to accommodate my cancer, now it feels like even intimate closeness will have to be planned, helped along and monitored, instead of just being able to make the world go away by making love when we feel like it.

Operation is the only route for my DH, his is likely to be genetic (he is 4th generation to have it) and his gleason score is worryingly high. He also has a very enlarged prostate that is causing him discomfort and urination problems.

OP are you based anywhere near the midlands? Is he a candidate for robotic/ nerve sparing surgery do you know. Has he had an MRI?
So sorry you are going through this again.

Surgery is never the only option - hormones plus radiotherapy is as effective at cure with zero risk of incontinence, similar rates of impotence but much more amenable to PDE-5 inhibitors afterwards. Have you seen an oncologist as well as a urologist? Many men work throughout their treatment.
Robotic prostatectomy however has improved outcomes by far - many men are dry afterwards and a fair number are potent. If there's any chance the tumour is a T3 radiotherapy becomes preferable ime.
I can imagine it's been a huge blow - I see men like your DH on a daily basis and he's not alone in feeling like the impotence is simply the last straw, in an undignified process. Your local Maggies centre is a good place to find someone to talk it through with. Best wishes to you both.

The man has prostate cancer severe enough to need radical surgery. The last thing he and the op need are crack pot cures like fasting.

I am so angry right now.

My husband has had cancer for many years now, so please don't try to tell me that this is a medically proven miracle cure.

I have no problem with people deciding to fast as a general health thing if they so wish, but to recommend it to a man with what sounds like advanced prostate cancer is insensitive to say the least. That particular horse has bolted.

Thanks again for the replies. This is how it has been explained to us so far (bullet points for brevity);-

1. His prostate is very large, about the size of an apple. His referral from GP was because of problems with urination. Tamsulosin helps, but is not a cure obviously. PSA keeps rising which led to biopsy giving a gleason score of 7. 12 biopsies taken, 2 positive for cancer. The gleason is 3+4 which is better than 4+3, but consultant says after op pathology very often finds this to be 4+3
2. He saw the urologist Friday who said that he could choose surgery or surveillance. However he would expect surgery to be necessary within 5 to 10 years. During surveillance he woukd need yearly scans and biopsies, every time a biopsy is done it leaves scarring and makes the eventual removal of the prostate harder and impotence and incontinence more likely.
3. Radiology causes the prostate to become hard, therefore makes side effects from op much more likely and so they usually only use radiotherapy on men who arent candidates for an eventual operation, such as the elderly.
4. The original reason for his referral still needs to be dealt with, and the urologist pointed out that prostatectomy would cure that

Also I cant underestimate the effect of watching his father die a very long, protracted and painful death 2 years ago with prostate cancer that had spread to his spine. His father was in his late 80s but knowing this could be his own future is hard. So when doctors tell him the side effects are likely to be worse the longer he leaves it in a situation where he knows surgery to be inevitable is a big factor.

So far he has only seen a urologist, he sees an oncologist in 3 weeks time

I'm so sorry you are going through this op.

I can't help much with advice I'm afraid. We are at risk of this too because of my husband's bladder cancer, although it is under control at the moment. He has had his prostate reduced slightly and it has affected things slightly but it's ok. I don't think he will want me to say too much online, so I can't go into detail.

If something radical does need to be done at some point it would be devastating, but I would rather have my husband here than not. Life can throws all sorts of things our way and we've had a very good life together. I'm hoping the good will still outweigh the bad.

A close relative of mine had their prostate removed 10 years ago because of cancer. He is not incontinent. He does have to be careful to empty his bladder regularly, he can't hold a very full bladder like he did before but all that means is using toilets when out and about rather than waiting until home. He wears a pad overnight as can sometimes leak a tiny bit but nothing much and certainly not every night, and it doesn't affect him in any way. The good news is that he is that the cancer hasn't returned so certainly worth it.

Just to add, do look at the prostate cancer UK website. They have a forum with lots of experts and people going through the same.

I know that our consultant has discussed the possibility of nerve sparing surgery with us if it comes to having his bladder and prostate removed. That may or may not be relevant.

Forgot to say yes we are in the midland s, I know they do robotic surgery at the hospital he is attending, but the fine detail if what he would be offered hasnt been talked aboit yet. He us gaving an MRI in December, they said it is useless doing one less than 5 to 6 months after biopsy as they cant get helpful results due to sxarring from the biopsies. Current state of play is tgat he us going to use the intervening months to think hard and live life as we currently know it. Oh God I feel so bloody angry. I loatge and hate cancer with every fibre of my being.

also, this is a side issue but is also feeding my violent anger, my own cancer wasn't found for a very long time, I was fobbed off over and over again until I ended up in A and E, throughout my own treatment I dont feel I was given any support other than what I found myself via macmillan. My operation date only came about because I chased it (notes never passed on from haematology to surgeon) and now I just feel Im on a treadmill, just a number who is looked at every 6 months and forgotten in between. Went for cgeck last week and was asked why I had huge scar on my tummy....errrr because this is the outcome of the operation you performed on the cancer you are monitoring!!!!! Argggh!!!! Anyway, this is the same hospital my DH is attending, and I can see the sympathy they are displaying, the folder with his name on stuffed full of leaflets to inform and support. Obviously I am grateful he is getting this, but I feel so alone in my own cancer fight with the medical side and it is making my anger issues worse.

Sorry for typos...so stressed

I'm not surprised about the anger at all. How long is it since yours was diagnosed? My husband had a personality transplant for a year or so after finding out that he had cancer. He was very short tempered and low, but this did pass eventually and the medical staff have been excellent.

This may be spectacularly unhelpful, but I'm not sure that we ever felt that the cancer was unfair. It's a disease and doesn't discriminate and, in a way, why shouldn't it be my husband or my mum or one of our close friends.

Having said all that, if I had cancer too we would most likely be on our knees with the stress of it.

Are you free of cancer now?

My stepfather had a fast growing high prostate cancer last year. He had robotic prostatectomy very quickly. Everything remained contained in the prostate although I think I recall that of the 12 biopsies 8 had cancer cells. He was offered surveillance/radiotherapy instead but wanted it finalised.

He was home very quickly but recovery was longer than anticipated and he found the catheter hard to deal with physically and emotionally. My mother did not cope well with it at all. However, nine months on he is fully continent and follow ups have been positive. I can't comment about sex, obviously I would never ask. He is 72, she is 80.

I am sorry to hear about your own cancer and struggles with it and the lack of support you have received. Would it help to start a separate thread to seek support about that?

Would it help to start a separate thread to seek support about that?

If you can do that op, it might be helpful. It sounds like you are having a terrible time. Cancer is bad enough without feeling that the medical team aren't up to scratch.

We had to use my husband's company medical insurance to go private in the end. I am a massive supporter of the NHS and have always found them to be amazing, but they did fall at the first hurdle when dealing with my husband's cancer. They put him to the bottom of the pile when he should have been top priority.

OP Gleason 7 is generally where they start active treatment and not surveillance. You have a bit of time to gather thoughts not heard of them waiting that long for an MRI but the MRI is really useful for deciding if nerve sparing surgery is possible. Nerve sparing surgery is less likely to cause bladder and erectile problems.
Alan Doherty is probably the guy to see in the Midlands he does both NHS and private work. You are entitled to a second opinion on NHS so use it wisely whilst deciding.
Can give you more info I know more Stoke way.

Meant to reiterate that at the end of the day it's your husbands choice. If he feels he needs more information about things then push for it (including a chat with the surgeon that would be doing the op)