I had colon cancer when I was 20 - AMA.

[TheCCClub]

Not sure if anyone would be interested in this but I’ve seen the topic pop up sometimes on MN over the years and it’s in the news a bit too. So thought I’d see if anyone has any questions.

No one? Will hide away then…🙈

Did your gp investigate your symptoms when you first experienced them?

Why do you think you got colon cancer at age 20 ? I think it’s really scary how many young people are getting this. It was almost unheard of in this age group in my day. I hope you are well and making a full recovery.

Thank you for offering to open up on this sensitive topic 💐

Op, I just wanted to say you're amazing for opening up about your experience

What were your symptoms?

How old are you now? And have you had any recurrence/long term problems?

How did you feel about it?
And how did your friends and family react? What helped and what made things harder about how they handled it?

Sorry to hear that.
How are you now?

Were you constipated?
Do you have a predisposition syndrome or family history?

Do you have any idea what might have caused it? Any thank you for agreeing to talk about it, a very worrying subject. I hope you are ok now.

So once I finally saw my GP, he was proactive, but it took a while between showing symptoms and being diagnosed as I didn’t know I had any symptoms. Even with the bleeding, I thought it odd but ignored it.

When I was 19 I passed out in public a couple times and was taken to the hospital. First time I was told I’m slightly anaemic and the second time they just said it’s because I hadn’t eaten breakfast. I then passed out a third time shortly after I turned 20 and this time I finally mentioned I was bleeding from the bum. Rather than showing any concern, the doctor actually asked me if I’m getting confused with my period… She then wanted a stool sample which I struggled to give so she sent me home with a tiny tube asking that I take a sample to the School of Hygiene and Tropical Medicine as she suspected I had a holiday bug.

I then finally went to my GP as I had no idea how to give a sample in such a small tube so wanted his advice. He told me not to bother and examined me, said I have haemorrhoids and gave me a cream. But he stressed strongly that I must return if things don’t clear up in a week. I went back a couple of weeks later and he referred me to the hospital. I saw a gastro doctor around a month later and after discussing my symptoms, she said I have IBS and sent me on my way with some leaflets on how to manage it. When I was waiting at reception to book a follow up appointment, she came back out and said actually, let’s be on the safe side and do some tests. A few weeks later I had a flexible sigmoidoscopy, which is when they look at only the end of your bowel with a camera, and I still remember the gasps from the nurses in the room as they saw the tumour on the screen, along with comments of “but she’s so young” and “she’s practically a teenager”.

So I was diagnosed around 6 months after I started bleeding, but my issue was that I had no idea I had any symptoms so didn’t think I needed to see my GP.

I'd be really interested to hear your story! How was your cancer found? What stage were you? What treatment did you have?How are you now and what age are you now?
I had stage 3 bowel cancer found by a routine screening in my 50s. I can't imagine the shock you must have felt getting diagnosed in your 20s.

No idea and I wish I knew, especially now that I have children of my own. I had genetic testing done and it didn’t show a genetic explanation. They said it would have started growing when I was around 15 for it to have reached the stage it was and I wasn’t living an unhealthy life or overweight. The only explanation they came up with was that it was either an unidentified genetic mutation or a freak case.

Annoyingly, I was actually one of the pilot candidates in the 100,000 genome project, which could have given an explanation, but I never heard back from them and when I got in touch myself I was sent round in circles with no one able to help.

Thank you, that’s really kind ❤️

How old are you now OP? Do you still have check ups? Very unusual at such a young age, must have been such a shock.

What stage were you diagnosed with? I'm interested as my cousin has stage 4, which obviously is not good however I keep reading about wonderful treatments that are now available. My cousin is 55 so a lot older than you were. She had no symptoms at all until being unable to poo.

My most obvious symptom was rectal bleeding. For months I was bleeding a lot and every time I used the bathroom I would have blood quite literally dripping. I would rush to the bathroom thinking I have a runny tummy and it was just blood. So a lot of bleeding. But being only 19 when it started, I would think oh, that’s strange, I must be eating something that doesn’t agree with me and didn’t give it any more thought. I never even googled it.

In the months before I was diagnosed, I had a lot of pain too, and that’s when I started to think something wasn’t right. I would have these intense shooting pains in my pelvic / lower abdomen area that lasted just a few seconds but they were so painful that I had to hold on to something. Apparently, the pain was because the cancer had spread outside the wall of the bowel.

Other symptoms that I had that I didn’t know were symptoms were feeling like I hadn’t fully emptied my bowels. I would spend up to an hour in the loo almost every day straining because I thought I could feel poo right there but it wasn’t coming out so I must be constipated (hence the haemorrhoids!). It was the tumour that made me feel that way. My stool was also thin, which again, didn’t raise any alarm bells at the time.

I'm really sorry you had to go through that. Once they realised what was going on, what happened then?

It must have been such a shock. What treatment did you have ?
You mentioned you have children of your own, did you need to freeze eggs or anything if you had chemo ?

I’m now in my late 30s. So coming up to 20 years, which makes me feel really old when I say that.

I had a large part of my bowel removed, and as the tumour was very low down, I also had some muscle removed, so I have had incontinence issues since. Nothing major fortunately, and if I maintain a low fibre diet then it doesn’t cause any issues.

I have also been left with terrible veins after the chemotherapy so having any bloods taken is a nightmare. When I had a c section it was delayed by an hour as the anaesthetist could not get a line anywhere and finally had to put one into my neck! Another time I had to have a colonoscopy, which I have every couple of years for surveillance, with just gas and air as they couldn’t put a cannula in.

Great post OP

Mine was caught at “pre-cancerous” stage at 33

Id been bleeding since 25. Other symptoms were not recovering with things like sickness bugs which would make the bleeding outrageous for ages.

I count myself super lucky that it was caught, but I also got the “it’s haemorrhoids” comment almost every time I went in as well

Im on 3-yearly cameras now

If in any doubt, always get checked folks!

Thanks for being so open and honest about your experience.
Is it possible there may still be tissue samples of your tumour still in storage from
the early days of diagnosis that could be re tested for genetic information? Genetic research will have moved on massively from the days you were initially diagnosed. This may be helpful for your children.

It was a huge shock but my immediate reaction was being worried about telling my mum so I had them do it for me. After I had the flex sig they told us they had found a polyp and would test the biopsy, and that I need to come back in a week for the results and a full colonoscopy. I had never heard of polyp before so I googled it and everything online said it can lead to cancer in over 50s so I wasn’t worried and kept reassuring my mum that I’m fine as I’m only 20. When we went back the following week, I wanted to go in on my own and then I finally realised something isn’t right

The doctor asked me if I know the difference between malignant and benign and I said I did, as I knew one is cancer and one isn’t, but I didn’t know which one is which. He then told me it’s malignant and I sat there for what felt like a few minutes thinking shit, why did I say yes, which one is malignant. He followed shortly after with “it’s cancer”. I can’t remember what I thought immediately after that but I then started telling the doctor he needs to tell my mum as I can’t do it.

I left the room and they brought my mum in and then I came back after and she was completely disheveled with swollen eyes and I just felt so guilty that I had caused that. So that was hard, seeing the aftermath of my mums reaction.

We cried the whole journey home. My 12 year old brother was there too and he kept asking what’s wrong and I had no clue what to say. Years later he told me thought that I was dying and so we probably should have handled his presence better. His school was right by the hospital so he came in after he finished school so he could get a lift home but we should have protected him from him.

My family did their best to make me happy. Lots of cuddles and tears at first, and then anything they could to make me happy. I can’t fault their support in any way.

I did also once catch my dad crying a few months later when I was midway through the chemo. My dad has always been an emotionally unavailable parent and the only time I’d seen him cry was when his mum died. I walked into the kitchen one night and he immediately wiped his eyes. That was tough to see too. We didn’t say anything but I assumed it was because of me.

Friends were also great. I was in hospital for a month after my first surgery and I had daily visits from at least one friend a day, and the nurses were great in that they let me have late night visits so I had constant support. The chemotherapy that followed lasted six months and gradually the gap between messages grew but that was to be expected. But they were always available and still included me in everything, even if I couldn’t go, and appreciated that I may drop out last minute, may be late, etc.

The one friend I struggled with was the friend who was overly supportive. We’d go out and she’d constantly ask if I’m ok. She’d always make sure I have a seat, etc. She meant well but it was all the time so it made me feel like an invalid.

My boyfriend at the time was a dick. I developed a bad infection after the first surgery to remove the tumour so had to have emergency surgery which resulted in a tumour. He didn’t speak to me for a week when that happened which was awful as I woke up feeling deformed and my boyfriend didn’t want to know me. He carried on doing disappearing acts over the next few months and finally he admitted he didn’t want to be with me because he didn’t want to be a widow. That was a horrible to deal with at the time, but looking back, so glad I didn’t end up with him.

Edit to add that I didn’t expect this post to
be so long!

I’m good thank you! I worry regularly that my children will end up having colon cancer too, or that my siblings or parents will, but otherwise I’m good and doing really well.