In shock

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My wife had a colonoscopy today and they sat us down together, which immediately rang alarm bells for me.

The said they couldn't get very far into the bowel because there is a mass/blockage (can't remember what word they used) which they say looked cancerous, it sounds like it's nearer the rectum than deep in the bowel. 

I think at this point the shock kicked in, the doctor said they're going to get an MRI and CT done,  they've taken a biopsy.

She seemed pretty confident it's cancer, I'm working on the basis that they have seen it plenty of times. 

As you can imagine we are reeling, I am very information driven so the waiting for tests and then treatment is already painful, I guess we don't know what to expect and it's hard to keep the panic in check,  I'm hoping we can learn from you all in here...

  • Hi  , welcome to the forum, you'll find plenty of support here. 

    I was diagnosed in 2019 and, as you said, it was a shock! The waiting for results and treatment plan is by far the worse part of it and it gets easier once your get some answers. You can check people's biographies on here and you'll see there are quite a few treatment options available depending on each case.

    I hope your wife gets her scan/MRI booked in soon.

    Take care

    Cecile

  • Hi  and a warm welcome to the board from me too. Yes the waiting for the scans and meetings is very stressful but all necessary for the experts to get all the information that they need before getting a treatment plan in place.

    I was in a similar position in 2016 where they told me that they were 99% sure it was cancer - as you say, they have seen it plenty of times themselves. Please stay away from google - it can be out of date and scary so stay on here and the bowel cancer uk board - you can ask anything you like and, if you click on peoples names, then their profile page may show their treatment to date.

    Bowel cancer is notoriously slow growing but very treatable. I was diagnosed in 2016 and I’m still ‘no evidence of disease’ as are the 2 ladies that I became online friends with during my treatment.

    Once you have a treatment plan in place then things will honestly feel a bit better. I’ve attached a link to a booklet that I was given at my first meeting which will give you a heads up about some of the treatments and terminology. 

    https://bowelcancerorguk.s3.amazonaws.com/Publications/YourPathway_BowelCancerUK.pdf

    We’re all at different stages of treatment and recovery and happy to help and support you through yours so please keep posting and ask anything you like - there is nothing too daft or embarrassing on here!

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • I know what you mean as I had similar experience, colonoscopy 9.10, scans, appt colorectal surgeon 31st when told I need chemoradiotherapy to shrink tumour then surgery but warned there would be a delay as oncology have a waiting list. Week later had call from a "clinical navigator" asking how I was!! I'm actually seeing a Consultant privately tomorrow to try and speed things up as I can't cope with all the waiting. Be careful what you read as I've been down a few rabbit holes which are very scary. 

  • Hello Governor,

    Along with many others on these pages I went through the same experience; blockage, etc. and thought the worst in terms of the future. How wrong I was! The process to resolve the issue involved quite a few appointments, with intervals of several months between some of them, but life is now 'normal' albeit with a couple of changes to the way I approach things, which is a very small price to pay in the circumstances. Keeping busy is perhaps one of the best things to aim for during the treatment process, rather than dwelling on the subject every day - a subject over which you have little control anyway. Leave the control bit to the experts (they have seen it all before). Once a treatment plan is in place your wife will feel that she is fighting back at last. On these pages you are not alone!

    Dulac

  • Thank you for all the replies, I can't lie I am struggling, I'm usually a rational person so the lack of facts and information is hard, which means I'm just left with emotion

    I remembered we're lucky enough to have private health'care through my employer so I guess that's a possible option to speed things up a bit, I don't know if that's a good idea or not yet as I know the NHS can make things difficult if you go down that route

    It's all a bit raw at the moment, I'm glad to hear you've all mostly had positive outcomes, hopefully when we know more it will help

  • If your wife doesn't mind then please keep us updated with her progress and always ask if she has doubts or concerns over anything. There are quite a few variables which the medics take into account before formulating a treatment plan and the experiences of others can be read by simply clicking the name of contributors. Some patients have to be dealt with quickly - others less so, but even if she doesn't hear anything for a while it doesn't mean that she is forgotten. I learned that a fair bit goes on behind the scenes. Because of Covid restrictions a number of my consultations were conducted over the phone. As it happens these turned out to be just as worthwhile as a face-to-face, but without the travelling and sitting around in a waiting room. 

  • Thank you Karen, can i ask what you mean by no evidence of disease? Does that mean you've had treatment and you're in remission?

    Sorry for the stupid question, I'm running to catch up...

  • Hi  No such thing as a stupid question on here - yes that’s exactly what it means. I used to say that I was cured but that term doesn’t seem to be the done thing as it were. My check ups stopped after 5 years so even ‘no evidence’ seems a bit inaccurate too as there’s nobody collecting any evidence! Remission always sounds a bit like you’ve still got cancer but not suffering from it? I dunno - I suppose I shouldn’t be trying to put a label on it ……..perhaps I should say that to the best of my knowledge I’m still cancer free! 

    Hope your wife’s appointments come through soon 

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thank you, I just read your bio and it sounds like you had a very up and down journey! 

    I think we've got all the tests booked now over the next week, wanting to get to the results appt but also dreading it

  • Hi Governor, Like Karen I tell people I am cured, but like she says to the best of her knowledge she is cancer free, and so am I.  I never think it will return, I just get on with life and stay positive.  I had cancer near the rectum, and last year I had 5 weeks of radio/chemotherapy and also and op, last October.  I know it is a worrying time for your wife, and also for you.  I think once things start moving and you get all the facts in front of you, you can face it together.  I must say it took a few months from the end of the treatment to having the op, but I was told this was so things could settle down.  I had a scan a couple of weeks ago, and came back normal.  I am left with a stoma, but that is not the end of the world (your wife may not even have to have one), and I just take it in my daily routine and its no problem.  The stoma nurses are wonderful, any embarrassment I may have had about it, they took away and now I just take it in my stride.  But as I say your wife may not even need to have one.  Lets hope things get moving for you both, and then you can see a light at the end of the tunnel.