Kathryn's story for Triple Negative Breast Cancer Day

For #TripleNegativeBreastCancerDay (Sun 3 March, 2024) we are shining a light on some of our wonderful members of the community who have a diagnosis of Triple Negative. Kathryn shares her story.

"December 2022 I notice a lump near my clavicle. I had a niggle a few months ago and saw my breast consultant who assured me everything was fine, my gut kept telling me otherwise. 

I was diagnosed with primary triple negative breast cancer early January 2020, I remember spending that Christmas worrying about the diagnosis which I knew was coming.  I kept holding my 18 month old daughter tight wondering how long we had left together, would my life be cut short too soon?  

I was reducing breastfeeding when I discovered the first lump and immediately got it checked out.  I was misdiagnosed with mastitis initially.  I didn’t think it was right as I had no fever, but I waited the two weeks I was advised before going back.  I was then referred to the breast clinic where I had a biopsy, the results confirmed triple negative breast cancer. 

When I was diagnosed I had to immediately stop breastfeeding so I could have an urgent operation should it be needed.  I wasn’t given any support in regards to this which would have been really helpful.  I have since come across Professor Amy Brown’s work and would recommend anyone going through a cancer diagnosis whilst breastfeeding to look her up.   

I underwent chemotherapy but I kept being admitted to hospital with neutropenia, my body couldn’t handle the chemo at all.  I was getting temperatures all the time and my bloods kept crashing. 

After three or four chemotherapy treatments I had a scan in which they could see no more tumour, it had been about 7cms so this was quite miraculous to have disappeared in such a short time.  I went on to have a lumpectomy and node removal on the left hand side followed by two weeks of gruelling radiotherapy - this was more exhausting than I had expected. 

In August 2020 I was declared free from cancer.  I was cautiously ecstatic.  I was aware that TNBC had high rates of spreading elsewhere in the body due to various research I had done.  I had not been informed about what to look out for, but educated myself.  

I had a couple of scares through 2021 and 2022 and was assured all was well.  

Through 2022 I finally regained my life, my energy was returning and I was able to do the things I loved again.  I was getting out with my daughter, I had taken the jump to become self employed and set up my own business and was doing really well.  

Around May 2022 I thought something wasn’t right.  I was getting pain to the left side, I went and had it checked and was again told there was no cancer. 

In December 2022 I noticed a lump near my clavicle, I had an awful flu like bug so I assumed it was that but it wasn’t going down and so I went to my GP.  She immediately referred me to hospital for a biopsy and warned me she suspected it was cancer.  Yet another Christmas spent in anguish, I knew what was coming and I kept wondering if this would be my last Christmas with my now 5 year old daughter - I know how aggressive triple negative cancer can be.  I know people who have been diagnosed and died just months later, I was petrified.  

The biopsy of the lump on my clavicle confirmed my worst fears, I have secondary triple negative breast cancer.  The wait was then on to find out just how far it had spread and what I was facing.  

I had various scans including a PET scan to check everything part of my body for cancer.  The wait for the results was tortuous.  All I could think about was Grace and not being there for her and the heartache I would cause her when I died whilst she was far too young.  I would think (and still do) if I could just see her into the next year of school, through puberty, into High School, her first job etc etc.  No time is the right time to die though, I want to be there for all of it, she needs her mum. 

After around two weeks the results were in.  The cancer is in my left lung (the area I was suspicious about back in May) and in the lymph node.  There is something suspicious showing in my stomach too but we can’t be sure if that too is cancer without biopsying it.  I asked the question we probably should never ask “how long”?  I was advised without treatment I’d be lucky to have 12 months.    

In February I had a port fitted under the skin which means I don’t have to have a cannula every time I have treatment, and it’s much easier to manage than a picc line.  I have very bad veins and I am so grateful for it.  Unfortunately they can’t use it for scans and they always end up being painful when they cannulate me to administer the dye, in fact my next scan is tomorrow so I am currently dreading it and then there is the scanxiety as I anxiously await the results to find out if the cancer is under control or has become resistant to treatment. 

I have chemotherapy every week for three weeks and then I get a week off.  I have now been having this treatment for a year.  I’ve had to have some blood transfusions and a couple of stays in hospital but incredibly I am tolerating it.  I was petrified I wouldn’t be able to take the treatment and just have to wait doing nothing whilst the cancer spread, I am so relieved I can have it and it is working.  On my last scan they could see no cancer.  I can’t tell you how amazing it is to hear those words, but underlying it I also know one day the news won’t be so good and I have no idea how I will handle it.  Triple negative breast cancer has very limited treatment options due to hormone receptors not being involved.  It is also very aggressive and things can change quickly.  

There is so much trauma physically and emotionally to contend with.  I try as much as I can to keep my mind in a good place.  Whilst things are going well it’s not too difficult to manage but living with metastatic cancer is a rollercoaster, and it’s one we can never ever get off.  

I am trying to make the best of the time I have.  I have just come back from a family holiday with Grace, one of the things on my Living List was to take her on her first proper holiday abroad and so I am delighted to have managed it and we had an amazing time.  

I want to make the most of life whilst I can, whilst chemo side effects aren’t too bad and before the cancer takes hold.  I have no idea when that might be, tomorrow’s scan may give me bad news, or it may give me another three months on the current treatment if it’s still working - I just don’t know what is around the corner.  

I hate not being able to work and earn my own money.  I hate not earning money doing the job I loved.  I hate wanting to make the most of every moment because I have less than I planned, but that that is impossible because not every moment is enjoyable!  I hate that one day in the not too distant future Grace is going to lose her mum.  

I spend time writing Grace notes, recording videos and asking people to take photos of us together so she’ll have those memories to hold on to, but that isn’t enough.   

At 45 years old I should not be planning my own funeral and living with the grief of what is to come."

Thank you to Kathryn for sharing her story.