For several weeks I have experienced significant symptoms of bowel cancer - so I went to my GP who referred me to the local hospital for an urgent appointment with the consultant. I was previously told that I was high risk because of my age, but also because my mother died of a very aggressive fom of bowel cancer that was regarded as the type that could be inherited by myself and my siblings. I have therefore always carried out the FIT test, and up until ten years ago, had colonoscopies as a precautionary measure.
However, I had never experienced symptoms until a couple of months ago, and they have been very significant - nothing vague about them. I was therefore extremely concerned when the consultant told me during a telephone 'consultation' today, that I was 'low risk' and that there was no reason for me to have further tests despite the severe and ongoing symptoms. I was fobbed off, and was basically told that I was likely imagining the symptoms. I'm not sure how the classic symptoms which includes passing huge dark blood clots is in my imagination.
I challenged this with the consultant who continued to be dismissive. He advised that the FIT test that I took last week showed no signs of bowel cancer and that if I had got bowel cancer, it would have shown up. I challenged him again, stating that the letter accompanying my FIT test kit both with the routine screening and the one I did at the request of my GP last week, clearly states that the FIT test does not detect all types of bowel cancer. Again, the consultant was dismissive stating that they are 100 per cent accurate.
After the call, I checked the NHSScotlan Inform website - information on it is all clinically checked and approved by senior clinicians and a range of governing bodies, and it clearly states that the FIT test is not conclusive and will not detect all types of bowel cancers. It also states that anyone experiencing any of the symptoms listed, all of which I have been experiencing, should consult with their GP immediately.
I simply do not know what to do next - should I simply accept what the consultant has said, and hope the symptoms don't continue or worsen? Or should I use my dwindling energy levels to fight for a second opinion? NHS consultants often close ranks, and I'm not convinced a second NHS consultant would openly disagree with a colleague's 'diagnosis'. Am I even entitled to get a second opinion on the NHS in Scotland, or get a referral out with of my local area and be seen by a specialist from another health board? I would welcome any advice anyone can give - I'm feeling quite lost on these issues.
Hi CazB and a very warm welcome to the Macmillan Community but so sorry to hear about the challenges you are having.
I know from experience having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…….
Bowel (colon and rectum) cancer
…….. support group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support or just a listening ear.
Do get back to me if you need further help navigating the community.
