Helen's story

We're sharing stories from some of our wonderful members of the community who have a diagnosis of Triple Negative. Helen shares her story.

"I had a routine mammogram in November 2021 with an all clear result. I am a big checker of my boobs so when at the end of January 2022 my left breast felt sore like a bruise I continued over a few days to check it. One of my dogs (an ex sniffer dog) was continually interested in my left side sniffing it at every opportunity. Literally over night I felt a squashy almost fluid filled pea sized lump on top jut above the nipple and so went to the GP thinking it was a cyst. The GP agreed with the cyst thought but referred me anyway. Unfortunately the two-week pathway was nearly four due to NHS shortages.

"By this time the lump was the size of a lime and still painful. I went by myself as I told my husband it would be a drain of the cyst so no worries. I was examined, had another mammogram and an ultrasound and was absolutely hit with a brick when I was told it was cancer and there were 4 suspect lymph nodes in my armpit. I then had a biopsy which confirmed TNBC but treatable & curable. A few days later I was sent for MRI and CT scans pre surgery. I was called in with husband this time to be given the devastating news that I had three lesions in my liver and no longer curable and surgery wouldn't be offered as it wouldn't make any difference.

"To say I was in a tail spin, dark thoughts and to then witness my family and friends break down with the news was a very difficult time. Things moved quickly and the treatment plan was put in place for Abraxane three weeks on, one off and Atezolizumab one on, one off. I got fitted with a port in my arm and started treatment at the end of March 2022. I decided not to cold cap as my hair is fine and the thought of a prolonged stay on the day ward was something I didn't want. My hair went after about eight cycles and I felt tired but of all the 30 odd different side effects mentioned I seemed to be tolerating it well and not having any.

"I slowly seemed to get some sort of normality back into my life. My tiredness went, I went back to walking the dogs and my Zumba class as well as socialising with friends and family. I haven't worked since 2016 as took early retirement so I didn't have the added stress of fighting for ill health retirement. At Clatterbridge Wirral there is a Maggies and their finance officer sorted out PIP for me as well as a blue badge (feel a fraud with it though so don't use it often).

"Around November 2022 after repeat scans, the lymph nodes became cancer free and the liver lesions had halved in size. The breast tumour had also shrunk and I felt a sense of calmness about things. Unfortunately in December 22 I was carrying some ladders to the garage in snow and slipped over breaking my ankle in three places which needed surgery, plates and pins with an extended period in plaster due to the worry of slow healing and treatment was put on hold.

"The panic set in and I was worried as to the mobility I would be left with such a catastrophic break. All healed well, I picked up treatment had more scans and by some miracle, the liver showed NED (no evidence of disease) and the breast tumour had shrunk further. I felt remarkably well, went back to Zumba and dog walking, got travel insurance and we managed some holidays in 2023 with a bought of COVID thrown in, which my GP practise handled badly but the 111 helpline were amazing and I got antivirals within 48 hrs and recovered quickly.

"Into 2024, I am still NED still and on the same regime. Apart from the reminder when I look in the mirror to see a sprout of hair and no eyelashes with the loss of a thumb nail with dry fingers and a little fat face, I continue to lead a normal life and feel lucky in this situation that I haven't had any hospital admissions or nasty side effects that many of the girls sadly have to endure. I get told weekly that my bloods are excellent so I just hope this continues but I am under no illusion that things can change. Through various local groups I have met some fabulous women, learned a huge amount of stuff from the FB page which I feel has empowered me to question the professionals and better prepared for things that may happen in the future. I also feel extremely lucky that Clatterbridge is on my doorstep and I cannot fault the care I have received.

"When you are delivered the most devastating news that the cancer is incurable, a million bad thoughts go through your head so connecting with others on Make 2nd Count Facebook Group has been an absolute lifeline both for my mental health and for the incredible knowledge and support. I feel like I have made such a connection with everyone and after a period of just reading messages, I now join in with some of the conversations. I really do feel empowered, no longer afraid to question the professionals and know there are so many people that have my back!"

Thank you Helen for sharing your story. If you would like to share yours, please drop us a dm or email our comms manager: clare.cox@make2ndscount.co.uk