Life after Cancer

Hi Diddle98 and a very warm welcome to the Macmillan Community but so sorry to hear about your diagnosis and your ongoing challenges.

I have been on my cancer journey for over 26 years….. diagnosed in 1999 at 43 with my first rare, hard to treat, incurable T-Cell Non Hodgkin’s Lymphoma……

Then my second very rare aggressive T-Cell Non Hodgkin’s Lymphoma appeared in Oct 2013 taking me to Stage 4…… resulting in 2 years treatment…… than included 45 Radiotherapy zaps, 750+ hrs of chemo and 2 Allogenic (donor) Stem Cell Transplants …… so I know this journey very well……. and as a bonus I was also diagnosed with Asbestosis in 2012 and Prostate Cancer this April past…….. but I am still here, turned 70 last Oct and I am still living a great life.

What exact type of cancer do you have?

I had Langerhans Cell Histiocytosis when I was a child and was treated 3 times for this and then when I was 24 - I was diagnosed with the adult mutation of this disease, Erdheim Chester Disease. It is extremely rare, so rare that my local hospital discharged me and advised me to find a specialist who knew what they were doing.

Diddle98 said:

It is extremely rare, so rare that my local hospital discharged me and advised me to find a specialist who knew what they were doing.

Sorry to butt in.....You'd think the hospital would pull the stops out to help you. I'm appalled! Did you find a specialist?

Good morning Diddle98 ….. yes indeed, ECD is rare.

I did a Community search and there have been no posts relating to ECD on the community.

I had a search and noticed that University College London Hospitals (UCLH): UCLH hosts a dedicated specialist clinic for histiocytic disorders (including Erdheim-Chester Disease)……. where are you based?

Thehighlander said:

I had a search and noticed that University College London Hospitals (UCLH): UCLH hosts a dedicated specialist clinic for histiocytic disorders (including Erdheim-Chester Disease)……. where are you based?

Nottingham University Hospitals trust too 

And

https://www.histiocytosisuk.org/uk-specialist-advisory-service/

I found one in Nottingham, I am based in Wolverhampton. So 70 miles away from home so when I was admitted, not many people were able to visit me and I spent the time with my mom, dad, step-dad and step-mom.

I am based in Wolverhampton so quite far from London, but this is interesting!! I didn’t know that this existed.

This unfortunately is the challenges of living with a rare cancer…..

I had to do the 6+ hrs Inverness to Glasgow round trip drive over 25 times to access specialist consultants and treatments between March 2014 and Dec 2016

You are not that far away from a Maggie's Centre…… I attend a monthly blood cancer support group at our local centre….. a great way to connect with other people.