Support groups for people who have refused radiotherapy?

This is for women who have had breast cancer surgery, and hormonal treatment.
I would also be interested survival rates and statistics that are relevant.
Does any one know of any support groups online or real for people not following the medical guidance

This looks like a good site:

http://www.annieappleseedproject.org/ind...

Good luck. I know what you're going through.

The Robert Ogden Centre at St James' Hospital in Leeds is a good place to start,they have lots of information about all different kinds of support groups. You could try ringing them or if you live in the area dropping in to see what information you can gather. Goodluck :)

Hi
I was diagnosed with BC when I was 31 - I'm now 37. I didn't have chemo but had hormone treatment (Tamoxifen and Zoladex). I refused radiotherapy as I didn't think it was necessary on top of all those drugs. I didn't make this decision lightly, I thoroughly researched the type of cancer I had, which was oestrogen-fed and after much deliberation I decided against it. I'm now 6 years on and all's ok. I've stopped all medication and, fingers crossed, alls well.
I don't know how old you are but I was very young and therefore I spoke to the Lavender Trust who are dedicated to younger breast cancer sufferers. Alternatively, your local hospital will have a breast care nurse who you can talk to.
Email me if you want to chat more...
Good luck,
Mikala.

Also see these websites: www.breastcancercare.org.uk
www.breakthrough.org.uk

i'm 43 and just and found out this year i have rare type of bc. i refused radiation my odds of reacurrance where 35% with tamoxifin use 15% with tamoxifin.and 5% breast removal. with them odds i figure im pretty good on just the meds and am now trying to change my life stye eating healther quit smoking etc... that the choice i made i just have to hope it is the right one. best of luck

Hi there

I'll start by saying sorry because I don't actually know of any support groups or statistics but I'm answering this because I too have refused radiotherapy for breast cancer.

Briefly, I had a mastectomy and axial clearance nearly four years ago. No spread, just told I have to be on on Tamoxifen for five years.

As soon as my scar had healed enough for me to be able to see what was going on I noticed a minute, hard lump about an inch below the main scar. I was fobbed off for two years by a succession of consultants at every check up who told me it was "just scar tissue", or "just where your drain went in".

It kept growing very slowly and eventually, two years down the line, a consultant I hadn't seen before picked up on it and it was removed, along with a number of areas of surrounding tissue. The lump was malignant but they got it all plus some and the surrounding areas of tissue were clear.

Following the operation I had a CT scan, bone scan and blood test. All came back crystal clear. The blood test showed me to be post-menopausal so I was able to switch to Arimidex (feeling much better on this than on Tamox!).

I was then told I needed to have four weeks radiotherapy. Why?! All the cancer had been removed and my tests were clear. I discussed this at length with my husband, family and friends and we came to the conclusion that the consultants were just trying to cover themselves as they had fobbed me off for so long.

A series of treatments was booked for me - twice - both times I phoned as soon as the letter arrived to say that I didn't want the treatment and they seemed to accept that.

The annoying thing is that since this happened, nearly a year and a half ago, I've had no contact from the hospital where I had both my oprerations and where I had been going for regular check ups. It feels as though I am being punished for refusing treatment but to be honest a part of me is relieved they haven't been in touch as I'm pretty sure that if I did go for a check up I would be pressurized to have the radiotherapy.

I'm not too worried overall, though, as I feel I'm perfectly capable of noticing if I get any more lumps, either on my scar area or in my remaining breast. I don't like having mammograms as I feel they can cause cancer to spread, I would much rather have ultrasound but my hospital doesn't offer that.

I know this doesn't answer your question but I do hope it helps you to know you are not alone.

All the best of luck to you.

P.S. I've just had a quick look at the other answers and it looks like there's a few of us who have refused for one reason or another - maybe we should start a group if there isn't one already?

P.P.S.
I am in the U.K.