Now that's a worry!

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Hi all,

Sending best wishes to all.

My 51 year old wife has just had a positive FIT a week ago. Here they don't automatically give you the FIT score, but we asked for it. Perhaps we shouldn't have as yesterday it came back at 400. She's scheduled for a colonoscopy on the 16th Sept - she could have gone earlier - the 9th - but we have things on she doesn't want to miss them and given it's her body I'm going to whatever she wants.

I thought I'd record here our progress to help others as well as gain the support of the community. Stream of thought to start with.

So, she's in good health (though she's had mildish migraines for years), not overweight, she barely drinks, has a reasonably active lifestyle, has never smoked and is asymptomatic. There's no history of CRC in her family, though an ulcer and colitis I understand.

In day to day life people say Google is your friend but it's really not is it in this case. But like peanuts on a bar it's irresistible to those in our situation isn't it. You could scare yourself to death but I've stuck to official sites and avoided forums, except this one, which I figure will be more sensible.

My thoughts so far are:

  • Hell, 400's high
  • But she's asymptomatic
  • But that means she could have asymptomatic CRC which could be further advanced without us knowing
  • But it's probably not cancer because only 10% of colonoscopies reveal a cancer
  • And even then it might be Stage 1
  • It's probably polyps and they'll be whipped out during the colonoscopy
  • Christ I'm worried and why's she so laid back about all this?
  • Maybe it's diverticulitis
  • Or an ulcer
  • Just relax man, you can't second guess anything and you'll not do yourselves any favour banging on about it all the bloody time in fact you'll only make things worse for her.

I think this would be pretty much what a lot of people go through.

So, yep, I can confirm the waiting for the colonoscopy is currently my least favourite pastime, but I'm sure if they find something of concern that will be replaced with waiting to a CT or MRI or biopsy results.

It's a road we are on. We have to travel it. But being here I think helps.

Again, very best wishes to all.

C

  • Hi sweetie. I wish your wife well and I know it’s hard for you too because it is for my husband. My story. I was sent a FIT kit through the post and only decided to do it because my husband did his. A week later I got a phone call to say it was positive and I needed a colonoscopy. I declined it because I felt really well. The week after I was at my gps and mentioned it. His face was a picture and after a discussion I was asked to repeat the test. I did and it came back 121. He asked me again to have the colonoscopy and I was reluctant but agreed to a scan. The day after the colorectal surgeon rang and persuaded me to have it. Wasn’t bad at all but the prep drink was awful. He found a large polyp and it was removed. Fast forward 4 weeks and last Wednesday I saw him to be told it was full of cancer. I had a CT scan Friday. I still can’t believe he said I had bowel cancer. I feel fine. Now it’s a waiting game. If I could give one piece of advice it’s have the colonoscopy asap. All the best and you will find lots of friends on here. Jan 

  • Hi Jan,

    I'm sorry to hear your diagnosis. I wish you and your husband/family all the very best on the journey you are on.

    We are due to attend a family wedding next weekend followed by a long-overdue week's holiday in Devon. She really wants the break; and frankly if she's got some treatment ahead of her it might be good to create some memories.

    We were going to have a private colonoscopy but the first appointment was whilst we were away, the next just after we'd get back on the 9th Sept; when the NHS nurse explained the pre-colonoscopy regime and that she'd need a week of senna  tablets to "loosen her up" (she has 3 x a week poops, unlike me who is daily) before the 'orrible laxative the night before the colonoscopy she didn't fancy being in our caravan with a loose bowel! So the 16th Sep it is.

    It's good to be amongst the community, so thanks for your input. :-)

  • Ha haSweat smile. Yes I had the senna but it was 2 a day for 3 days then the wonderful prep drink. The colonoscopy was a breeze in comparison! Don’t think I’d fancy the caravan in those circumstances. Please let me know how she gets on and I honestly hope it’s nothing. Jan

  • The caravan is a confined space. And not soundproof. It's best to avoid mixing senna and caravanning for both both parties and their neighbours Joy Will let you know how we get on.

  • Hi C

    Your wife sounds very much like me as do your circumstances. 

    First of all, before I tell you my story, keep in mind that you're right about most people being ok and there's a good chance your wife will be sent home with an all clear.

    So, my story is... last October I received a surprise positive result from a routine fit test.  I didn't tick any of the boxes so wasn't worried.  However, without wishing to scare you even more, mine did turn out to be bowel cancer BUT I'm now cancer free and on the mend. Most of the time it turns out to be a false alarm so I was really shocked but the team who looked after me were brilliant (NHS) and treated me immediately.

    So although there is always that chance that something nasty could be lurking, as there is for everyone, the medical teams know what they're doing and will act on it straight away if they find something. 

    My advice to you would be to find out as much as you can if it helps you but carefully. There are many scaremongerers out there and everyone's experiences of any medical procedure are different. Some people are understandably very quick to post their worst experiences on forums and it's scary for anyone reading. Also remember that there are lots of survivors out there going about their daily lives and you don't even realise. I had a good head start with my recovery because I was healthy (ok, my gym membership had long since lapsed but we'll skip past that...).  My surgeon told me I'd done myself and him a favour.

    You're right to turn to MacMillan for support, they were a huge help to me. 

    The prep - my advice here would be to make sure your wife has VERY easy and quick access to a toilet somewhere she's comfortable (if she's easily embarrassed make sure she has absolute privacy!), something to read (she may well get through a whole book on this night or day), sudocrem, soft toilet tissue, a nice comfy bed for when she's finally finished.

    I hope I haven't worried you more. It's a scary experience for you both but there's lots of support out there. Please feel free to ask me questions if I can help in any way and good luck!

  • Hi Alli, Thanks for sharing your experiences. On the contrary it's very helpful. Yes, I do like to research stuff, I've always been the same, but I'm aware from here how forums can be a problem. I'm trying to understand the stages of cancer - just in case. mainly so I know what the hell the docs are talking about lol. My wife is worried, but not overly so. "Let's wait and see, then worry". Fingers crossed it's nothing serious. Thanks again, and continued health. :-)

  • Hi  and a warm welcome to the board. I also postponed my colonoscopy to go on holiday for a week back in 2016 - in fact I’d only gone to the doctors with my loose bowels as I knew it would get even worse on holiday. If you click on my name then my profile page will show you the rest of my story. 

    You sound to have a good grasp on the situation with a bit of humour thrown in too - always helps in my opinion. I can send you a link to the booklet that I was given at my first meeting with the consultant but you don’t know that it is cancer at this point? 

    Take care and please let us know how the colonoscopy goes?

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Your wife sounds wonderful and that's exactly how she needs to be. Even with all the knowledge in the world, you still can't predict your experience with something like this. It's much better to take each day as it comes.

    I was expecting stage 1 or 2 but it had just gone into the lymph nodes so it was classed as stage 3. Bowel Cancer Uk have a page about staging but I don't know if it would have helped me or not to have read it before my diagnosis. Each to their own I guess. You do what's best for you and your wife.

    I panicked when I realised mine was stage 3 but it was still ok. I had surgery to remove to affected part of the bowel and then a resection. It was then that they checked the lymph nodes. If it's gone into the lymph nodes they offer you chemo, which I had. I THINK if it's stages one or two you don't usually have chemo but I'm sure others will know more. Stage 4 must be extremely scary but there again, they can do so much more than they ever have before. There are some amazing medical warriors out there fighting for us cancer bods!

    Take care and please don't hesitate to get in touch if you want to ask anything. 

  • Thanks Alli. Much appreciated.

  • Hi Karen,

    Thank God you are clear now. So happy for you.

    Well worrying about it isn't going to help, he says whilst a nervous wreck.

    It's very kind to offer the book but we don't know it's cancer as you say. Then also there's the if you don't know then it definitely ISN'T approach too. I'm sure we'll get all the bumpf we need as and when.

    There's humour now. I can't promise it will last.

    Part of coming on here is to share the story to assist others, so will definitely let people know.

    Bye for now.