A hope story: 25+ Year Survivor of Metastatic Breast Cancer

Living with secondary breast cancer Supporting each other and sharing experiences
1

Hi everyone,

I was browing the internet and randomly came across this article which led me to another article and a podcast.  This woman’s story is amazing.  It is very uplifting, as is the article and I highly recommend have a read / listen 

spreaker.com/user/7078249/susan-rafte-a-25-year-survivor-of-metast

Here is the article I originally found the story within (which is also a very positive article and written in June 2020:

oncozine.com/new-therapies-may-offer-hope-for-patients-with-metastatic-breast-cancer/

Interestingly Susan’s treatment took place back in 1997 when there weren’t many options around and after her treatment (I think she said she had a course of Taxotere), she also had a stem cell transplant and continued having different treatments over the years.

I always wonder why there is never any analysis of long-term SBC survivors/people whose cancer go into complete remission, as surely, there must be something to it that could be learned 

2

Hi

Thanks for sharing.  I have a friend who has had secondaries for at least 15 years, probably nearer 20 and when she was first diagnosed she wasnt even tested for HER2 status (in fact neither was I for my primary back in 2003). After a recurrence the biopsy showed the HER2 status as being positive but she had to fund it herself via private health insurance as it wasn’t available on the NHS.  She eventually became a ‘named patient’ which is what happened in those days to get the drug on the NHS.

She has always said to be that her history should give some sort of clue as to why she is a long term survivor, ‘just’ on Herceptin and no further spread except for the original sites in her bones.  However it’s never been documented or used in any form of feedback or research study.  The one thing she has learnt though is long term use of bone strengtheners has caused her bones to become very brittle, she had her leg pinned about 2 months ago as there was a fracture there. I think the long term use of these drugs wasn’t anticipated initially whereas there are more studies (and more patients) to see what their effect is.  This I think is why there’s quite a few different opinions about the frequency of the doses and how long we should stay on them.

Nicky x