Hello everyone. Just posting to introduce myself and see if anyone has experienced similar in terms of getting diagnosed.
In April I was referred by my GP under a two week wait for a colonoscopy due to change in bowel habit, abdo pain, blood in stools and having a strong family history of colon cancer
early June I have the colonoscopy. The camera is unable to pass due to a large stricture in my sigmoid colon. Some biopsies were taken, the nurse in the room actually said to the trainee performing the colonoscopy that the biopsies were very small but they didn’t take more. Nobody sat and discussed the colonoscopy with me afterwards only to say that I would need a CT colonography which was performed about 10 days later.
At the end of June I spoke with my GP who was able to tell me two of the biopsies showed cancer. This was devastating to me as I had no further information or support. Three days later I was called to outpatients where I met with a consultant and specialist nurse. The consultant asked me what I knew of my situation to which I replied that my GP had told me I had cancer. He then told me the GP was wrong but they needed to do another colonoscopy as the biopsies were only suggestive of cancer. He said I’d need a repeat CT too.
Later that day I get a call to go for a CT tap which is not a repeat CT it’s a new CT. Then I eventually have my second colonoscopy. The consultant performing the colonoscopy can see that the stricture is cancer. She takes 8 biopsies and lots of photos, very different from my previous report. Again, no one discusses with me but I hear them talking amongst themselves about a cancer nurse referral. About two weeks later I call the cancer specialist nurse who informs me that they are having an MDT about me the following day, she says my biopsies results are not back yet which made me wonder why they would have an MDT discussion without them.
Fast forward to outpatients where I meet with another consultant. I’m told I have cancer, I’m told this was shown on the colonography and the colonoscopy could see it was cancer. All 8 of the biopsies showed cancer. I was told I would be called that afternoon with a date for surgery. Three days later no phone call so I contact the cancer nurse who tells me my date which is about 10 days away. Attend outpatients and during my appointment I receive a call from the stoma nurse, which was surprising as I’d been told a stoma was unlikely. Anyway she tells me she’s been in a meeting and my surgery has been delayed. As I’m at my pre assessment I ask the anaesthetist who checks his computer and confirms I’ve disappeared from the list. I expected to receive a phone call with a new date and to be told who my surgeon was but still haven’t received one!
This has been a complete rollercoaster for myself and my family. Has anyone experienced anything similar. I really do feel like I’ve been mucked around concerning my diagnosis and the information that surrounds it but maybe this is normal?
