Spotlight on Our Diagnosed Members: Jeanie’s Story
Metaplastic Breast Cancer Global Alliance Members’ Stories
I was diagnosed in March 2016 with Metaplastic HER2+ breast cancer. As we all know Metaplastic breast cancer is very rare (<1% of all breast cancers) and the HER2+ variation even more rare ( I think only 10% of that so <0.1% of all breast cancers)
My cancer was detected by a routine mammogram for which I am eternally grateful. I couldn’t feel a lump, nor could my surgeon. It was only 7mm when measured on the ultrasound but I was told that due to the aggressive nature of this type of cancer I would have immediate surgery followed by chemo and then radiotherapy. Surgery was done within 2 weeks of diagnosis followed by FEC-T chemo then 15 rads. This is the standard treatment in the UK.
My daughter was about to have her third child ( my 5th grandchild) at the time of diagnosis so one of the hardest thing was to tell my kids as I didn’t want them to worry about me. I did my own crying pretty early on in the process then found that every time I told someone else about it they would start crying and I ended up trying to comfort them!!!
In the end once I’d told my family and close friends I decided to use good old Facebook as a communication tool, giving regular updates over the following months. I tried to emphasise that I wasn’t doing it to get sympathy, just to give everyone the info without having to have zillions of individual conversations. My friends and acquaintances gave the feedback that they loved this way of doing it because I was very open and they felt part of my journey (hate that expression but it suits!) and that they learned such a lot that they wouldn’t have liked to ask.
Anyway I went into chemo with the view that people made a fuss over nothing and that I’d sail through it as I am such a strong person. How wrong was I!!!! Obviously my body just doesn’t like chemo. I was in hospital on every single chemo with high temps and on several occasions being severely neutropenic (32 nights in hospital in total). I also had a bad reaction to the Filgrastim injections ( think these are like the Neulasta injections in the US) and had really scary chest and back spasms, so bad that I had to call an ambulance on one occasion and my oncologist stopped them after that. To add insult to injury I had a huge seroma from my two surgeries (lumpectomy and then lymph node clearance). This was a huge ball of fluid under my arm that had to be drained every week and sometimes twice a week. When my chemo finished they decided to do further surgery to try to resolve the seroma. Unfortunately this didn’t work and in addition I then got an abscess on the surgery site and ended up in hospital with sepsis ( you couldn’t write this could you?). Luckily during radiotherapy the seroma decided to start behaving itself and stopped filling up but the radiotherapy itself resulted in quite bad burns despite following all the correct guidelines and taking really good care of my skin.
However bad it all seems it came to an end and it’s amazing how quick you recover and get back to normal (it’s a new normal however). I still have some pain and get tired easily but do most of what I did before. I will now just have yearly mammograms which worries me a little as I’m worried that either I may run to my breast care nurse too often unnecessarily or do the opposite and ignore symptoms I should complain about. Throughout the whole process our wonderful National Health Service has been excellent and the treatment I received has been second to none. Apart from the actual medical treatment I have had unlimited free access to support services such as counselling, meditation courses, massage etc.. Above all my family and friends have been absolutely wonderful and I can’t thank them enough but apart from that I’ve now got a whole new set of friends that I have met along the way who have also been through it and who just ‘get it’ without any explanation. We have regular meet ups and can talk openly about anything.
I now live life with a different attitude. I don’t know whether I will stay cancer free for a few months, a few years or forever so I find I don’t want ‘things’, I want experiences.
Below are some photos of me before, during and after treatment.