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Hello to all, my problems are now beginning.

User
Posted 04 Jun 2015 at 22:15

Thanks all for your comments, I'm finding the toolkit very informative. Still loads to go through. I think a meeting with the oncologist is going to be useful to.

I've noted that if you have radiotherapy you might not be able to have surgery if that fails. I'm making notes as I go through the various options of treatments.

It's interesting to read others stories and treatments.

Some people have told me I'm lucky it's prostate cancer as it can be easily cured, I'm not sure what they know about it, but I certainly don't feel lucky.

Colin

User
Posted 04 Jun 2015 at 23:34
Colin
many here will agree with you and say they feel really uncomfortable when people say that. mainly that is because the people that say it are a little ignorant of the disease,the treatments and all the side effects. It is also due to a lack of general awareness, most people have heard of prostate cancer but some have no idea where a man's prostate gland is , many still call it prostrate . So maybe they think it is a disease to be taken lying down?! Anyway the more media attention it gets the more awraeness there is and hopefully less people saying the wrong thing,
xx
Mo
User
Posted 06 Jun 2015 at 00:18
Hi Colin
Sorry to hear that the news was as you expected but not as you had hoped.
If it helps, my OH has had surgery to remove prostate. When he was diagnosed, we asked the surgeon what he would do with our set of results. He said he would go for the surgery. It's alswsys worth asking your consultant. They may not answer, but if they do it helps. Post surgery, the consultant said that he considered the decision was justified because the Gleason was 9 at pathology, and it had reached but not exceeded the surgical margin. On his biopsy, he only had 3% in one lobe and 18% in the other.

So the positive is that hopefully it was caught in time, and he is cured.


On the other hand, the side effects of the surgery have been very hard for him to deal with. Six months on he is dry at night but leaks like mad in the day. He can't drink beer. This is the end of life as we know it. He has little or no movement on the erection front, but it's early days. However, he is not a patient man, and is very distressed by it all. The side effects of the surgery were not adequately explained to him before surgery, although he would probably still have had it.

With a Gleason 6, you have the luxury of time to decide. But at the end of the day, you need to go with your gut feeling.
User
Posted 06 Jun 2015 at 08:28

Thanks Mo & Louise for your replies,

I cannot imagine the difficulties of post surgery side effects. I wouldn't be able to cope well either, I don't think that's for me yet.
I'm still reading over and over the leaflets from McMillan and the tool kit from here. Also of course the Internet. I'm starting to look at recommended changes to diets to perhap help with the cancer, not sure if I'm grabbing at straws, but perhaps to change my diet (which isn't too bad now, following a heart attack 4 years ago) and to go the Active Surveylance route for a while.

I'll wait till I see the Oncologist before a firm decision.

Thanks Colin

User
Posted 06 Jun 2015 at 13:34

Colin

Can only be your choice but as an alternative to surgery do consider some form of Radiotherapy. I was 58 at diagnosis. Back in 2004 surgery at Gleason 8 was not deemed viable so had RT and HT. I’m 10 years post diagnosis with no incontinence issues but have ED issues

Check my profile.

Ray

User
Posted 06 Jun 2015 at 21:19

Just thought I would say that tomorrow our 2 sons are arriving to see us. Although they do know the results, I feel it's going to be a emotional day. Talking face to face is going to be hard. we will talk about the options I have, and ask for their opinions.

Must also remind them to get checked themselves.

Colin

User
Posted 06 Jun 2015 at 22:04
Colin it is bound to be emotional but you will be ready and able to deal with it I am sure.
Xx
Mo
 
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