Hello,
10 days ago I went for a colonoscopy following blood in my stools that had appeared since middle of September. I have had IBS for many years and worsening flare ups this year but never blood before. I had a fit test result of >200 and my GP had warned me that they would be looking for cancer during the procedure but it was (and still is) a shock to actually know I’ve got a tumour. I was told by the endoscopist that it is cancerous.
It’s quite a big tumour and it’s now stopping me from going to the toilet normally. I’ve been told I will definitely need surgery and have been told to eat little and often until we have a plan of action.
I have had a CT scan and blood tests but will not hear anymore until after the MDT meeting this week.
The waiting to know my fate is horrendous. I have a horrible, horrible feeling it’ll be bad news and I’m scared I won’t have long to live.
I am 43, a non smoker, non drinker. I’m 5ft 6 and 11.5 stone so not hugely overweight. I know realistically I stand a good chance of fighting this but my mind keeps going to really dark places and I’m not sleeping well, having bad dreams about saying goodbye to my children (18 & 11) I’m trying to keep strong but am so worried about what the future holds.
Everyone around me is trying to be supportive and I appreciate everyone wanting to pop in to see me and sending flowers, but I’m actually finding it all a little overwhelming as they are obviously all worried too. I’m struggling to really talk to anyone in real life about how I feel. I feel like I have to be positive for everyone else and am trying to put on a brave front. Inside I’m exhausted and very, very scared.
I haven’t told my children yet as I want to wait until I’m given more news to be able to answer their questions. I don’t want them feeling scared about the future yet too.
I know I have to just get through the next week or so, it’s just really hard.
Hi Nalabanaba and a warm welcome to the board. Yes the waiting for scans and results is very stressful but once you have a treatment plan in place then things will honestly feel a bit better.
Bowel cancer is notoriously slow growing but very treatable. Stay away from google and try to not let your imagination run away with you. It sounds like you’ve reacted quickly to your symptoms and the size of the tumour is not a sign of severity.
The MDT will decide on a treatment plan for you and it will be discussed at the meeting with you. I was told that they were ‘treating me with a view to cure’ which was reassuring and I was able to tell my family this.
As you say, it’s lovely that people rally round but it gets hard to keep the positive front on and often only people who’ve been in the same boat really understand. Everyone on here is at various stages of treatment or recovery and we’ll be happy to help and support you through yours.
I was diagnosed as stage 3 in 2016 and I’m still ‘no evidence of disease’ as are the 2 ladies that went through it at the same time as me. The treatment can be tough but just take it one stage at a time.
Ive attached a couple of links below - 1 about low residue diet which is foods that are easy to digest and pass through the system and the other is the booklet that I was given at my first meeting which explains some of the treatment options and terminology
https://bowelcancerorguk.s3.amazonaws.com/Publications/YourPathway_BowelCancerUK.pdf
Please keep posting and remember that the support desk is open every day from 8-8 if you want to chat to somebody in person?
Take care
Karen x
Hi Kareno62
Thank you so much for taking the time to reply and for the helpful advice and links.
I am so pleased that you are doing well now. Hearing positive stories is really helpful and hearing from anyone who has also been through this is too.
I know I’m catastrophising but I feel like I’ve got to be mentally prepared for every single scenario. It’s the not knowing what’s happening in my body and waiting for the staging and treatment to be “revealed” to me that’s so so hard!
Thank you x
Hiya!
Don't panic too much. I was in the same situation as you 2-3 years ago. Lots of long term odd symptoms that were somewhat like IBS. In reality it was probably related to the slow growing tumour in my sigmoid colon, It all came to a head a bit like yourself when I almost obstructed.
Scans were suggestive of spread, particularly to the bladder and I was told surgery would start of laparoscopically to see if it was even worth carrying on. I was warned of all sort of potential outcomes but mostly chose to believe they would not happen to me.
The reality was a lengthy open surgery without a stoma. Surgical recovery was difficult and I was starting to feel half reasonable when I started 4 cycles of chemotherapy which is another whole experience.....Determined to beat it, I returned to work 6 months after surgery.
I will be honest with you, my brain took a right bashing and I really don't think I'll ever be the same person again despite follow up scans etc showing no recurrence. Doubts linger.
You will get through it, this is a cancer that is remarkably survivable. There will be a series of unpleasant moments along the way, but you'll be out the other side in 6-9 months.
Give in to your fears, chat about them and have a weep when required, it's all perfectly normal. You can do this!
I'm sorry you find yourself on here.
I had a large polyp that had turned cancerous diagnosed almost twelve months ago. It was 6cm. After the colonoscopy I really struggled to ho to the toilet and was advised to take laxido. Four weeks later I had part of rectum and sigmoid removed and unbelievably no nodes involved it was t2.
I'm starting my surveillance now and bloods just came back good.
You are going through the worst part of this journey. When you get your plan you will honestly feel much better x
Hi Nalabanana . Thank you for sharing your diagnosis. You are in the right place to get support and advice. Everyone is different, even though we have similar diagnoses. I had my colonoscopy on 21 September and a growth was found, which started the thoughts going. I only recently discovered that it is a rectosigmoid tumour. Like you, it is quite big and prevents me from going to the toilet properly. This means I will have to have a stoma+bag fitted soon, which I have accepted after the initial shock. As others on this thread have stated, try not to panic. This is treatable. You are probably more likely to have surgery, as it does not appear to have spread to other parts of the body. Stay strong if you can and stay informed, so that when you get questions from family, you can be clear with your answers. A positive attitude to treatment can go a long way, as I am about to discover myself.
Whatever cancer throws your way, we’re right there with you.
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