Worrying myself sick (bowel cancer concern) - is anybody else going through this?

Hello

Is anybody else going through something similar, perhaps been on this journey longer than me and can offer words of support?

I had chronic pain 10 days ago in my abdomen, saw my GP 8 days ago who arranged several blood tests, stool tests (fit and calprotectin), both of which have since tested positive, all bloods (except CRP, which is raised and has been for about 2 years)) and urine are normal. No weight loss, no fevers, and that chronic pain hasn't returned (10 days now).

I am being treated for an autoimmune disease with hydroxychloroquine (and have had horrendous side effects including diarrhea, hair loss). Might also be worth saying I have had to take ibuprofen and naproxen to help cope with the pain in my wrists, legs and feet associated with the autoimmune disease, for +-2 years when needed.

I have been put on the 2 WW Colorectal straight to test, and have been told a cancer nurse will be phoning me on Thursday (to set up a colonoscopy).

I am absolutely terrified. I am not sleeping, feel miserable and struggling to get into the xmas spirit, even though I have a young child who is looking forward to xmas.

Anybody been through something similar?

Thanks

  • Hello AleJam and welcome to the forum.

    I'm sorry to hear your calprotectin and FIT tests came back positive and that you've now been referred for a colonoscopy.

    I hope the cancer nurse you've spoken to today was able to put your mind at ease about your upcoming procedure and any other concerns you have about your situation at the present time, but if you'd like to discuss this further with one of our cancer nurses, you can give them a call on 0808 800 4040. Their helpline is open Monday - Friday between 9a.m - 5p.m and they will do all they can to answer your questions and support you through this anxious and uncertain time.

    I hope it helps to know that a lot of our members have been in a similar position, so you are not alone AleJam, and hopefully some of them will offer their support and advice to you soon.

    Do let us know how you're getting on when you can, and we'll have our fingers crossed everything for good news.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Thank you

    The nurse that phoned me went through my medical history, symptoms and advised both a CT scan and colonoscopy are needed. They were very helpful, I explained I suffer with anxiety, depression and PTSD, and that has been recorded on my medical notes for the persons doing my tests etc.

    CT scan booked for 23rd Dec, still waiting on a call re colonoscopy.

    Trying to put on a happy face for my 5 year old, and mother in-law who is currently undergoing chemo for metastic cancer..

  • Hi, I am new to this forum, but am sorry you are going through this, your story is similar to mine. I have tested positive after putting in a fit test, I have done them many times over the years and was shocked to find this one was positive. I have Hashimoto thyroid disease, and take thyroid medication .It's so scary having this as you think every pain is bad. I have an appointment 19 Jan. To speak to someone not sure who. With probability of a colonoscopy. I have spoken to a few people who have had positive fit results but after colonoscopy was done found no problem. Like you I have been told by my GP, that I have raised crp tests but they didn't know why, over last two years. Hope all sorts out for you.

  • It's the waiting that's hard isn't it? Because you struggle to plan.

    I had the CT scan...all finished within minutes. I was convinced they had found something as they asked if I had ever had lymph nodes removed. 

    But then I got a call 6 days later from the consultant to say no evidence of malignancies, or metastatic disease and that I was being removed from the cancer pathway. 

    Colonoscopy now booked for 10th Feb and they are now focusing on inflammatory bowel disease. 

    For anybody on this journey, there are no words to describe the dark place the not knowing can take you to...but I encourage everyone to keep talking. And keep checking.

  • AleJam Thank you so much for replying, I am scared witless but trying to be strong but it's hard. My husband and twin sister are the only ones have told of my worry, but not telling my family until know something they don't need the worry. Am hoping will be ok have had few issues which tbh was going to make an appointment with doctor to discuss, but put them offy appointment is week Monday so may get more information. It's a very dark place you find yourself in waiting. Am so glad you had a good result. K

  • I hear you!

    I spent Xmas living in terror and wondering all sorts of things as my child unwrapped his presents.

    It is so tempting to consult Dr Google, and I admit, I did, but it rarely made me feel any better. My only advice would be to do anything that can occupy your mind,even a half hour card game...anything to give your mind a break. 

    There are many reasons for a positive fit test.

    And be very honest with your fears when you get phone calls with nurses etc if they book you in.

    The nurse I spoke to who booked me in for my CT scan, the colorectal nurse...was really good with me, explaining things in more detail.

    Along with any diagnosis, there will be a plan. When you're feeling a bit overwhelmed, try to get your thoughts in order, and think about all the questions you want answering.

    Wishing you all the best! Let us know how you get on

  • Thank you, bless you Christmas would have been so hard for you. My children are grown up but I won't tell them anything until I know what's happening. I know it's a long way off but make sure you have a great Christmas next one.i have a bad feeling this is not going my way but I will fight whatever is coming. I lost my niece to cancer in October she was 47 so been a difficult time. Thank you for your support and help. I will let you know what happens, and will try to keep busy.K

  • I'm sorry to hear that.

    Cancer at any age is a shock. It takes us out of our 'normal' lives and puts us in the unknown. I'm watching my mother in law fight stage 4 metastatic cancer that has travelled through a kidney, bladder and bones. And she is putting up a fight. She has just finished her last chemo cycle, but then gotten knocked down with flu. But the chemo has been able to significantly improve her expected outlook.

    Remember, many reasons for a positive fit test. 

    There are medical advances everyday, and hopefully we will reach a time when a cancer diagnosis is easier to treat across the board.

    Take care of yourself, and keep in touch.

  • Yes I have been reading Google about lot of people get positive fit test and are all ok. Fingers crossed  Sorry to hear about your mother in law, it's so hard watching loved ones poorly. Please look after yourselves.K