Cancer in London
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Cancer in London

How does treatment for common and rarer cancers compare?

Julie from Lambeth, London, shares her experience of being diagnosed with breast cancer at a young age, and explains how different her experience has been seven years later, dealing with an extremely rare uterine tumour.

In December 2009 I was diagnosed with the most common type of cancer to affect women in the UK — breast cancer.

From the moment I visited my G.P with concerns about a lump that I wasn’t certain I could really feel — a well-oiled machine swung into action. I was quickly referred to a specialist diagnostic unit at St George’s Hospital and that same day it was confirmed that I had the disease.

I later understood that thanks to the long history of research, the multidisciplinary team were able to identify a treatment path for me based on the results of my biopsy.

I was always given lots of time and had plenty of appointments, the clinicians wrote to me after every clinic and I was given more information than I could process, but my family gratefully devoured it. And where the NHS couldn’t help, they directed me to support services such as Breast Cancer Care and Breast Cancer Haven.

I connected with other younger women who had been diagnosed with the disease and developed a support network that carried me through.

Seven years later I was diagnosed with another tumour, this time the story was very different. The tumour, known as Uterine Tumour Resembling Ovarian Sex Cord Tumour (UTROSCT) has an unknown cell of origin, so it’s currently classified under “miscellaneous tumours of the uterine body” by the World Health Organisation. There have been only 77 cases reported worldwide.

Everything has felt confused this time. Before the diagnosis I had a total abdominal hysterectomy because of a mass in my abdomen. In my follow up appointment after surgery, I was told that after receiving a second opinion from the Royal Marsden, the histology confirmed UTROSCT.

Unfortunately, on this occasion, the consultant didn’t read my confusion and I left the appointment entirely unclear as to what I had been diagnosed with. I inadvertently found out via a letter from my breast cancer consultant, who, because of the unfamiliarity with the tumour name, wrote it down incorrectly. However, thanks to a marvellous GP I was supported through that initial upset.

The shock of being diagnosed with something so rare has been bewildering and as a patient it’s something that I could’ve been better supported through. I’ve suddenly gone from (sadly) being one of many to being totally alone.

I realise I have to be my own advocate and so I’ve spent lots of time over the past six months, at last using Google for something useful. I’ve contacted people I know through social media, I’ve been fierce in my efforts to track down every academic paper written about UTROSCT. I’ve found out about pathology protocol. I’ve put messages on forums trying to find someone out there who might be going through the same thing. And I have found one other person -so now there are 79 of us.

It’s actually helped having previous experience of cancer because I totally trust the medical professionals will do everything they can to identify the right treatment. But I know that my consultant and team are unlikely to have had a patient with this type of tumour before, which makes it difficult for them to have any answers to my questions.

Simple steps make the world of difference, like always including the patient in letters to the GP, always letting the patient know of any research, if there are new developments and perhaps an acknowledgment that being a member of a very exclusive club is not what anyone wants. This can help you feel supported rather than more isolated than you can imagine.

Tomorrow I have the first of my four-monthly scans. I have to fast beforehand so I’m off to eat a Kit Kat whilst I’ve got time.

You can find out more about the organisations that have helped Julie with her cancer diagnoses via the following links:

Breast cancer care
Breast cancer haven
www.eveappeal.co.uk
www.abcdiagnosis.co.uk

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