Precancerous cells and possible stoma

LesAli 20 days ago

3 replies
130 subscribers
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Hi there,

Firstly - I am sorry if anyone finds my post insensitive. I do not have a cancer diagnosis, but I do have precancerous cells which have greatly increased my risk.

I am a 27 female - I have had Ulcerative Colitis for around 16 years and apart from pre-diagnosis it has been controlled quite well and I have lived a normal life. A routine colonoscopy back in May revealed that I have precancerous changes - low grade dysplasia. I have been told that my options are either more regular surveillance to make sure they don't turn to cancer, or colectomy which would leave me with a stoma. I have been told my risk of cancer is 5% right now, 25% after 5 years and 40% after 10 years.

My consultant himself said he wouldn't know what to do in my position.

I work for a cancer charity and lost my Dad just under a year ago to pancreatic cancer. So cancer is a big part of my day to day life which I feel is contributing to my anxiety and pushing me towards opting for the surgery. I've only been married for a month. I want to have children. I'm going on my honeymoon in July. We were hoping to buy a house in the next year. It all feels like it needs to be put on hold.

What would you do, or what would you have done? The thing that is hard to get my head around is that the colectomy and stoma feel so very extreme, when ultimately I feel fine.

Anbou 20 days ago

Hello LesAli, Very sorry to hear that you are suffering from UC with uncertainties of tests and treatment paths.

I am an 80 year old man and had major colon tumour surgery in 2023 followed by chemotherapy, and fortunate not to have needed a stoma. After many blood tests and scans I was recently pronounced all clear, with routine occasional blood tests and scans in the future. Most of my past blood tests included a couple of tests for cancer markers. I found those reassuring when they were reducing and when stayed relatively low and more or less within limits for most of the time.

The reason I am responding to your post is that I wonder whether you have had these marker blood tests done or could ask your consultant whether they would be relevant to you at this stage as they may help you know and hopefully ease your worry through this simple occasional blood test.

With all good wishes.

Anbou.

Lucy1382 19 days ago

I'm in a slightly similar position. I feel I am really sticking my neck out with my doctors on it too- I would rather continue surveillance or have a smaller and less invasive TEMIS procedure than have a huge resection for something that may not even be cancer cells. I don't think mine is a popular or maybe even wise opinion- most people would prefer to just get everything out at all costs, but that's my current gut (for want of a better word) feeling about my own situation.

If you can be heavily monitored and deal with the ongoing "scanxiety" (can anyone!??) and your consultant also isn't leaning on you for something in particular, it might be an idea to watch and wait. But it is such a personal -and difficult- choice.

The other thing is that in a few years, treatments may well have changed and advanced, things are moving on all the time and more options may be available to you, but who knows!

Susan13 17 days ago

I'm sorry this is happening to you. My rectal cancer left me with 2 permanent stomas. I can honestly say that having a stoma is totally manageable. You will be able to do all the things you can do today.

I know of women who have had children with a stoma, there's at least 1 on YouTube. Don't let fear of restrictions hold you back.

That said, this is a very personal choice. Only you can weigh the pros (reduced cancer risk and possibly some relief fron UC symptoms) and cons (stoma and surgical risks).