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I have a mast cell disease Systemic Mastocytosis, and Haematology have now told me it’s Cancer-5 yrs after diagnosis! I’m really very poorly and been offered no support or info at all! It’s a rare disease and no-one understands it or can help me! Can you o

serendipity3
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  • Systemic Mastocytosis, help please
Elise - Macmillan
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Hello serendipity3,

Thanks for getting back in touch.

I can see from your previous contact with us that you’re having a very difficult time right now.

While it’s good to hear that you have been referred to a specialist team, it must be  frustrating that it’s  so far away and it’s understandable that you are looking for information and support.

As my colleague, Keith mentioned previously, systemic mastocytosis can become cancerous. I would hope that the consultant at Guy’s will go into more detail about this with you .

UKmasto.org provide information and online support which you might find helpful.

We would hope that you have been issued with an epi-pen and if not, please discuss this with your GP. As I’m sure you’re aware systemic mastocytosis carries a risk of anaphylaxis.

The World Health Organisation classify systemic mastocytosis as a myeloproliferative neoplasm (MPN)

Knowing that your condition falls into the category of an MPN and Guy’s have a specialist MPN team , I’m assuming if that’s why you have been referred there.

You mentioned a lack of support and I wonder if our data base of local support “ In Your Area” might be a useful starting point in finding out what’s nearby for you.

The Dimbelby Cancer Support Centre is based at Guys and St Thomas’s NHS trust and they offer a wide range of support services.

It may also be helpful to call our support line to talk things through in more detail and we can look at what specific support and information might be helpful for you .

Best wishes and take care,

Elise

Cancer Information Nurse Specialist

serendipity3
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Thankyou SO much, your information has really helped me