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

2 REPLIES 2
Gillyflower
Community Champion

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

Hi Nicky,

Thanks for sharing the story about your friend, that is really interesting to hear about.  Its actually pretty incredible when you think about what was known back then about breast cancer and what we have now, sometimes its a bit mind-blowing that people have survived for so long before all these clever treatments were in place or routinely given. 

I keep thinking it would be wonderful if a project could be set up that takes a look at long-term survivors and get some rigorous and valid data from a totally holistic (ie, not just bloodwork and tumour type but also lifestyle choices, nutrition, mental health) point of view to see if there are any correlations.  As with everything, I guess it comes down to financing and I doubt anyone is interested in financing any kind of data gathering that wouldn't result in a manufactureable product to sell at the end of it.

Also thanks for the info about the bone stregtheners - I was wondering the other day how long it is "safe" to be on these before some side effects start to show prominence, so that's something else to think about! xxx

nicky08
Community Champion

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

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

Gillyflower
Community Champion

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

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 😊

https://www.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:

https://www.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 🤔