My name is Emma. I’m 38 years old. I’ve been living with cancer now, in one way or another, for over 3 years now.⠀⠀⠀⠀⠀⠀⠀⠀⠀
My primary diagnosis (DX) was in August 2016 after my dog, Flash found a lump. My secondary DX, telling me that my cancer had spread to my sternum bone and a variety of lymph nodes throughout the top half of my body, came 8 months after finishing treatment in early 2018.⠀⠀⠀⠀⠀⠀⠀⠀⠀
So far, to date, my cancer treatment has consisted of a lumpectomy, 2 rounds of IVF, 12 sessions of chemotherapy (2 different types), 23 sessions of radiotherapy, 8 months of daily tamoxifen, 18months of herceptin and perjeta every 3 weeks, 18 months of Zoladex and denusomab injections, 18 months of daily letraxole tablets, daily antidepressants and tablets to help my heart function, numerous scans, and far too many appointments with oncologist, surgeons, my oncology nurses, and GPs to count.⠀⠀⠀⠀⠀⠀⠀⠀⠀
But I try not to let all this define me. I’m trying to live as normal and as full a life as possible! And show people that metastatic cancer may mean treatment for life but it’s not a life sentence!
There are many names for this type of cancer – secondary / stage IV / metastatic / terminal (only if you’re trying to win an argument though!) They all mean the same thing……..⠀⠀⠀⠀⠀⠀⠀⠀⠀
A secondary cancer is when a cancer spreads, metatasizes, from the original location to somewhere else in the body. Once it has spread it is no longer “curable” and, whilst it might become dormant in a person’s body (NEAD – No evidence of active disease) it will always be there and someone with MBC will be in treatment for it for the rest of their life!⠀⠀⠀⠀⠀⠀⠀⠀⠀
In my case, my cancer went from my breast to my bones, But breast cancer tends to like spreading to the bones, the lungs, liver and the brain. ⠀⠀⠀⠀⠀⠀⠀⠀⠀
How do you get stage IV breast cancer?⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Simple answer – 30% of people with a primary cancer will go on to get a secondary cancer. If you have a primary cancer diagnosis, this isn’t a fun fact to be faced with, I know. But it’s unfortunately, true. And more needs to be done to educate people about the signs of a reoccurrance.⠀⠀⠀⠀⠀⠀⠀⠀⠀
About 8% of MBC cases are diagnosed ‘de-novo’ which means they are diagnosed as having incurable cancer right from the start.⠀⠀⠀⠀⠀⠀⠀⠀⠀
Once someone has been diagnosed with a metastasis, treatment is no longer about “curing” the disease, but managing the cancer and preventing it from spreading.⠀⠀⠀⠀⠀⠀⠀⠀⠀
Some hard facts about MBC……⠀⠀⠀⠀⠀⠀⠀⠀⠀
- About HALF A MILLION people, women and men, die worldwide from MBC every year.⠀⠀⠀⠀⠀⠀⠀⠀⠀
- 31 women in the UK die every day of MBC. Men who die from it aren’t, for some reason, counted in the UK!⠀⠀⠀⠀⠀⠀⠀⠀⠀
- MBC is the biggest killer of women under 50. 16% of the people that die from it are under 50.⠀⠀⠀⠀⠀
- This mortality rate hasn’t really changed in 20years despite huge medical advances.
- The average life of someone after they are diagnosed with incurable cancer in 3-5 years⠀⠀⠀⠀⠀⠀⠀⠀
- Only about 7-12% of funds raised by the big cancer charities goes to finding a cure for metastatic cancer.
NONE OF THIS IS OK. We deserve more!⠀⠀⠀⠀⠀
What do people with MBC need?⠀⠀⠀⠀⠀⠀⠀⠀⠀
I’m going to paraphrase from the awesome campaign #MetupUK are running at the moment…….⠀⠀⠀⠀⠀⠀⠀
What we need is;⠀⠀⠀⠀⠀⠀⠀⠀⠀
- Greater Awareness of the disease.
- A wider understanding of the symptoms and signs of a spread.
- More access to drugs that can extend our lives.
- Policy change from NICE. (Our lives are worth more than the £30k limit they put on them).
- Accountability from the charities, drug companies and NICE.
With the right treatment we can all be living longer than the averages we’re give. We all want to be alive. We just need help in getting the message across to the people who can change policies.⠀⠀⠀⠀⠀⠀⠀⠀⠀
If you want to know more, please visit www.metupuk.org.uk⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
I’m going to close off my MBC day posts by letting you in on some the things I’ve done this last 18 months despite having incurable cancer;⠀⠀⠀⠀⠀⠀⠀⠀⠀
- sailed some (but not enough!)⠀⠀⠀⠀⠀⠀⠀⠀⠀
- stood on a stage and talked about life with MBC⠀⠀⠀⠀⠀⠀⠀⠀⠀
- visited Copenhagen⠀⠀⠀⠀⠀⠀⠀⠀⠀
- visited Berlin⠀⠀⠀⠀⠀⠀⠀⠀⠀
- visited Milan (twice) for MBC conferences⠀⠀⠀⠀⠀⠀⠀⠀⠀
- holidayed in Bordeaux⠀⠀⠀⠀⠀⠀⠀⠀⠀
- survived Glastonbury⠀⠀⠀⠀⠀⠀⠀⠀⠀
- been to 11 beer festivals⠀⠀⠀⠀⠀⠀⠀⠀⠀
- been bridesmaid to one of my besties⠀⠀⠀⠀⠀⠀⠀⠀⠀
- eaten at a 3 Michelin star restaurant⠀⠀⠀⠀⠀⠀⠀⠀⠀
- spent awesome times with friends⠀⠀⠀⠀⠀⠀⠀⠀⠀
- cuddled my dogs at every opportunity I can⠀⠀⠀⠀⠀⠀⠀⠀⠀
- made some beautiful jewellery⠀⠀⠀⠀⠀⠀⠀⠀⠀
- visited Washington DC with work⠀⠀⠀⠀⠀⠀⠀⠀⠀
- decorated a kitchen⠀⠀⠀⠀⠀⠀⠀⠀⠀
- beaten Jim at minigolf⠀⠀⠀⠀⠀⠀⠀⠀⠀
- made my own gin⠀⠀⠀⠀⠀⠀⠀⠀⠀
- joined a MBC campaigning group⠀⠀⠀⠀⠀⠀⠀⠀⠀
- seen the spice girls⠀⠀⠀⠀⠀⠀⠀⠀⠀
- starred in about 359 photobooth pictures⠀⠀⠀⠀⠀⠀⠀⠀⠀
- made some incredible friends who are also #busylivingwithmets! ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
I’m sure there’s a lot I’ve forgotten, but I hope, as always, in sharing my life with incurable cancer is to make it seems less terrifying prospect, and something to be feared a little less.⠀⠀⠀⠀⠀⠀⠀⠀⠀
Thank you for being here today for these posts, and for supporting me on days that aren’t all about cancer too!
And if you’d like to watch the live I did, answering some of your questions about life with MBC – it’s here;
View this post on Instagram
“How do you stay so positive?” And other questions. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ I asked, earlier this week, if anyone had any questions about my life with MBC. And you asked questions…… I was going to try and pop them all here, but it was getting super wordy, do I recorded an IGTV…….. Which may, or may not, make sense! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Please be kind. I don’t like this talking to camera stuff, but I’m trying…….🤦♀️ (I’ve also not watched it back so I apologise for any waffle!) ⠀⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀