Lynch Syndrome MSH6 - Rectal Cancer

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Good afternoon,

I am looking for some guidance please. I have had a bit of a weird experience compared to the norm.

I went to the GP last June with iron deficiency anaemia. I had blood tests showing raised liver, high IgA, high ImmE, numerous deranged results. GP did not ever mention cancer. My FIT test was positive then in August.

In September I was unwell and ended up in the hospital with severe pain lower back. They did MRI but as I had an old disc gotten worse in my lumbar they passed it off as that. I complained saying this is something else for numerous reasons. I was dismissed a s nut job, then the battle of words began.

I ended up homeless as semi paralysed they passed it off as pain.

Then the GP calls said your FIT is positive, I said I cannot come as stuck homeless can't drive with no wheelchair. She did nothing to help.

Finally after another hospitalisation for worsening neurological symptoms and numerous complaints did they start to suspect something is going on.

Then after my own genetic testing and finding MSH6 Lynch I hit the roof. I realised I was on an URGENT referral with Gastro for 7 months. I have all the cancer symptoms, dark patches on face, white patches all inside of my mouth, roof of mouth discoloured and patchy white, aching lymph nodes.

It has been error after error, now a total cover up.

I had the gastroscopy and endoscopy. They took 6 duodenum biopsies 1 on the nodular OG junction. They turned the camera at the end of the colonoscopy to look at the rectum or anal canal? There were long slightly raised blood red lesions the length of it, maybe 3 or 4. I thought oh, that's not good. They made a point of saying the colon looks good, but did not mention the rectal lesions on the report or in person.

Is this normal behaviour, or have I terrified them all due to my complaints and they're all worried of legal action if they say the wrong thing?

I feel somewhat guilty I have created this situation with complaining but I just want honest answers. If you saw my notes, I think anyone sane would be pretty furious. Now I wish to turn the anger to constructive dialogue.

My leg has signs of denervation so could be paraneoplastic motor neurone damage, only time will tell now but that's the most likely scenario.

Thank You

Amy C- Macmillan 28 days ago

Hi TheHonestOnion,

Welcome to our online community. My name is Amy and I am one of the one of the nurses on the Support Line. Thanks for posting your question, it’s been added to our ask the nurse for me to answer.

It sounds like you have been having a very difficult time since June when your symptoms started, and blood work began to show as deranged. It’s disappointing and frustrating that you don’t feel listened to, and understandable why you wanted to complain to feel heard.

It’s important your symptoms are reviewed again, and you have an opportunity to speak to the team who performed the gastroscopy and endoscopy to ask more questions. You can also ask about the Lynch Syndrome and management of your MSH6 Variant, as well as what they think the raised areas you seen during the endoscopy.

The hospital and GP have a duty of care and should not alter your care because of previous complaints you have made. I wonder if it might help to get in touch with a local advocacy service in your area to discuss your treatment and care up to now, and get advice on the best way to move forward with this. VoiceAbility is an independent charity supporting people to feel heard in making decisions about health. POhWER are another advocacy service that can help you get the support you need.

You can also get in touch with the hospital PALS team (Patient Advice Liaison Service) and speak to the GP Practice manager.

You don’t mention if you are still homeless or in temporary accommodation but you might find it helpful to contact Crisis, Shelter and your local CAB (Citizens advice bureau).

You might also benefit from seeing a dentist to review your oral health and the patches you describe in your mouth. You can search for NHS dentists here if you are not already registered. If your symptoms worsen you can access NHS Dentist in an emergency or out of hours.

If your neurological symptoms persist or worsen it’s important to speak to the GP, out of hours 111 or go to A&E for review.

We often find we can help more by exploring these questions over the phone. If this is something you think would help, then please don’t hesitate to get in touch via our support line on 0808 808 0000. We are available 7 days a week, 8am-8pm.

I hope this helps.

Best wishes,

Amy C, Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

Ref: AC/LM

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Lynch Syndrome MSH6 - Rectal Cancer