The Quest for a Diagnosis

I want to encourage anyone trying to get a diagnosis with any symptoms that they are concerned about to persist. Trust your instinct, ask for a stool test no matter how old you are, and push for a colonoscopy appointment within a reasonable timeframe. 

And, for women over 45:  not everything is about the menopause, don't be fobbed off.   

In February this year, I stepped through a door into a world where my life, and my self and my worth was distorted beyond recognition. 

For the best part of 2021, I felt that I was pestering the GP with vaguely worrying but not debilitating symptoms: night sweats, fatigue, change in bowel habits, feeling generally unwell, non-specific abdominal pain.  The routine with GP consultations involved telephone conversations in lieu of an appointment, or seeing a student doctor. There were discussions about menopause, blood tests, urine tests, a chest x-ray, an ultrasound. This was a frustrating process:  the method was that if a disease was not identified, then you should assume that there is no problem, thus no further action required. 

I felt a recurring sense that I was playing a game of “no win this time, go to the back of the appointment queue.”

Chasing a diagnosis became very frustrating. I questioned my rationality and whether possibly, simply using the "old mind over matter technique" with more commitment would sort out the situation. I kept exercising and eating healthy food. I experimented with cutting out various food types in turn - gluten, dairy, meat - with no significant difference.  I felt that I was doing something to cause the persistent feeling of being unwell. 

My symptoms worsened: greater fatigue, blood in stools, abdominal pain, continued night sweats… The conversation kept returning to menopause: a stronger a HRT dosage was prescribed.  

Eventually, a stool sample was taken in October and showed raised inflammatory markers. This was such a simple process and I can't understand why it wasn't done earlier as a matter of routine. There was traction: recall, retest, result, referral.  And then, a long wait - two months -  for a colonoscopy and a diagnosis of colorectal cancer.  This, it transpired, having been left undiagnosed for at least a year, had metastasised, and the diagnosis, the reward for my persistence, was Stage 4 cancer.

It is difficult to feel hopeful, and not to be angry. Over 5 months after diagnosis, I have had my chemotherpay paused after 2 cycles because of a low blood count. Anxieties are high and there is so little information about how to deal with treatment, and the reluctance of anyone to discuss how to manage life with this illness. 

  • Hello Lunaria and welcome to our forum although I'm sorry to hear about the reason that brought you here.

    There are many others who will understand exactly how you're feeling, not only about being diagnosed with stage 4 cancer but also how long it took to get to know what was going on. Hopefully some of them will be along shortly to talk to you and offer support as speaking with those who can relate does seem to help.

    As you mentioned the lack of information available, I thought I might share with you this page from our website which covers bowel cancer.

    Alternatively, if you feel like asking some questions to our team of nurses, they'd be happy to chat with you Monday - Friday between 9a.m - 5p.m on this freephone 0808 800 4040.

    Stay strong, Lunaria and please remember we're always here if you need a chat.

    Best wishes,

    Renata, Cancer Chat Moderator