The Rarer Cancers Forum: Index of stories from patients or carers
Tue, 02 Dec 2008
Rarer Cancers Forum

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Guidelines for patients or carers on writing and submitting their stories to the Rarer Cancers Forum.

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Stories from patients or carers

These stories are written by people with experience of a rarer cancer.  They're written in the words of the patients or carers, so that you can understand just how it was for them.  Many people find that by reading another person's cancer journey they learn something that helps them or others in their family along there way.  

We welcome your additions to this section of our website. If you would like to have your story published here, please read the guidelines for writing stories.


Gwen

Oesophageal cancer

I was diagnosed on the 21st December 1994. I had been experiencing severe chest pains and had wondered if I was having a heart attack.

Jenny

Cancer of the vulva

If you think bearing and giving birth to a baby is an undignified process, then believe me, having cancer of the vulva is even worse.

Judith

Gastrointestinal Stroma Tumour (GIST)

This is a story which illustrates how difficult it can be to diagnose a rare cancer, simply because even the consultants have not seen it before.

Linda

Epithelioid Haemangioendothelioma (EHE) of the aorta

Like Judith's story, mine is also a very rare cancer, which was extremely difficult to diagnose.

Anne

Peritoneal adenoma

I spoke to you about two years ago and explained that I had peritoneal adenoma.

Maria

Ependymoma - spinal cord tumour in lumbar area

It was November 2001, when I was diagnosed with cancer.

Louise

Laryngeal cancer - S.N.A.P. (Speech Needs Are Priority)

Twelve years ago my vocal chords were removed due to cancer.

Tricia

Squamous cell carcinoma (SCC) of nasal septum

I was diagnosed with SCC of the nasal septum in Aug 2005.

Sian

Jejunal adenocarcinoma

I am 32 years old and up until the beginning of this year I thought I was a reasonably fit and well woman.

Jay and David

Cholangiocarcinoma

The events began in October 2004 when Jay woke up one morning and had turned yellow.

Elizabeth

Basal cell carcinoma

The rodent ulcer I had on the side of my nose was cut out under local anaesthetic sometime in 1988.

Clare

Chondrosarcoma

My daughter, Clare, was working away from home but when we saw her in the summer of 2002 she appeared to have a problem with her L eye lid.

Mr Wright's story

Carcinoma of the mouth

I think my story shows why I think long term aftercare for people in my situation is not good and why I feel abandoned.

Sandra

Liver cancer

My symptoms began in late 2005 when I began to feel more tired than usual and was not eating particularly well.

Kirsty and her family

Diffuse intrinsic pontine glioma

It was a phone call from my mother that changed things.

Andrea's Mum

Cholangiocarcinoma

My mum was a 64 yr old woman, never smoked or drank and led a fit and healthy life.

Lorna

Endometrial stromal sarcoma

When a diagnosis of fibroids was made by my GP in Spring 2002, I was just relieved that something could be done.

Patricia

Leiomyosarcoma of the uterus

I have Leiomyosarcoma and I am writing to let you know my journey so far with this.

Rachael

Ganglioglioma

After the birth of my son I started experiencing excruciatingly painful headaches coupled with visual disturbances.

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