61% OF PEOPLE KNOW VERY LITTLE ABOUT MBC (Metastatic Breast Cancer)

THERE IS NO CURE FOR MBC – BUT IT CAN BE TREATED

MBC SPREADS TO THE BONE IN 70% OF CASES

THE MEDIAN SURVIVAL OF A MBC DIAGOSIS IS 3 YEARS

NOBODY DIES OF BREAST CANCER THAT REMAINS IN THE BREAST

At times, living with MBC (Metastatic Breast Cancer) can make me feel misunderstood and isolated. People who have MBC will be in treatment for the rest of their lives. Although treatment for MBC cannot compare to the first 12 months of treatment that I had for my primary breast cancer, back in 2011-2012 – consisting of radical chemotherapy, many surgical procedures (including lumpectomy, mastectomy, liver ablation) and radiotherapy – treatment for MBC is a “forever” treatment and can be harsh and relentless.

The on-going myriad of side effects of this treatment are sometimes hard to bear, but this is not the only burden. We have to constantly educate others about this disease explaining over and over again that this cancer is incurable. That, no, my treatment will never stop. Yes, I have to be treated every three weeks, and yes I have to have CT, Pet Scans and heart scans on a regular basis. And then when it is commented that surely that amount of scans are bad for you – well what do you say to that – “Err – yes – but the alternative is not very appealing – do you really think I have a choice here?” So, for people with MBC you cannot claim to be in remission or recurrence. You have NED (no evidence of disease) but you know that actually you have microscopic residual disease that is undetectable by any form of scanning.

We have to explain that because our cancer has spread, it doesn’t mean that we havn’t been taking care of ourselves, that if it goes to the lungs, it is not linked to smoking – the cancer in the lungs is “breast cancer in the lungs”, not lung cancer. If it spreads to the bone, it is “breast cancer in the bone, not bone cancer”. That is what metastatic cancer is – it is a primary cancer that has then spread to other parts of the body. MBC is totally unpredictable.

You feel like you are on a ferris wheel – never knowing when you are going to land, when your time is up. You are on treatment that will hopefully “stabilise” the disease, not cure it. You know that at some stage it will stop working and then you move on to another treatment. But you don’t know if it is next month or in 3 years. That I have “done” 5 years, according to my wonderful oncologist is more than a “miracle”.

Luckily, since I was diagnosed, there are two or three more treatments to move on to. But anybody with MBC, or any type of metastatic cancer, wishes that this first line of treatment will be successful for a very long time, because once you have had to move on to a second line of treatment, you know that things have just gotten that bit more serious. I also see-saw between a sick feeling in my stomach and utter joy and gratitude when a new drug comes on the market to a great fanfare, but then in the small print it explains that it “has been proven to increase life expectancy by 14 months”! “Gosh”, I am cynically thinking, “14 months” – wow – better get on with it”. It is really a bit of mind fudge if you allow yourself to think about it too much.

Finally, and very importantly, metastatic cancer is now being given some media airtime – and we are now being included in reports, which I am so thankful for, as it will raise awareness of this capricious and erratic disease, and hopefully alleviate the pressure that we can sometimes feel in explaining our uncertain situation.

In addition, I am so pleased to see that there are an increasing amount of websites offering support. For instance, there is a 15 week online patient support group, starting on June 7th http://www.cancercare.org/support_groups/44- for people diagnosed with stage 4 metastatic breast cancer who are currently receiving treatment. There are also many other websites that offer support including http://www.mbcn.org and http://www.everydayhealth.com/breast-cancer/support-groups-for-metastatic-breast-cancer.aspx This is a great step forward in offering support to those with MBC and I encourage everyone out there to tap in to this. The more we talk about it, the more support we will receive.

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