Morning lovely ladies x I was debating with myself whether to post this or not. I hope it doesn’t come across as insensitive as I know everyone in the group is at different stages etc. I remember when I was first diagnosed that I always wanted to read a positive story so this is why I thought I’d share mine. It’s quite a long post…
First diagnosed with metaplastic TNBC in September 2016 age 41 after finding a lump. I had a lumpectomy, Chemo & radiotherapy that finished in April 2017. Around the June/July time my breast was red hot & very, very achey. They put it down to treatment & I was referred to physio. I developed 2 tiny holes that got bigger & bigger until I was left with a huge 4cm deep leaking cavity in my breast. I must have rung the BCN weekly! I had the breast consultant nurses number too who I would also call as I knew something wasn’t right. They thought it was necrosis from radiotherapy or an old infected seroma. I had ultrasound scans, an mri that didn’t show anything. They debrided it in theatre & applied a vac dressing. Thankfully the surgeon took a biopsy as it was infact a recurrence. Another 4.5cm TN tumour. I then had a mastectomy followed by more chemo. This finished in January 2018 & in April there it was again! It showed itself as a dark raspberry coloured splodge. The surgeon removed it the following week. 4 weeks later & again, another splodge. My hospital told me they couldn’t do anything else so I was referred to a different breast surgeon & a plastic surgeon who did a diep reconstruction in August 2018 as there was not enough skin to close due to the amount of surgeries I’d had. I had 3 monthly regular surveillance CT scans. In my November scan last November, several lung nodules were visible which they assumed were lung metastasis. I was referred to ST Barts for immunotherapy but I was told to watch & wait as disease needs to be measurable & the nodules were too tiny. 9 months later of sheer torture & my CT scan a few weeks ago was clear! The nodules had gone. I was told that because I was young & has a relentless cancer, they assumed it was cancer in my lungs. This makes me 2 years clear
Long story short…3 recurrences, 5 surgeries, 2 lots of chemo & radiotherapy & there can be a positive outcome. I know I’m still far from the finishing line & I’m still neurotic about every single ache/twinge/cough. I desperately used to look for a positive story with each recurrence so I wanted to share mine.
Lots of love 
xxxx
I read your story with mounting horror, with my hand over my mouth. Then I reached the end and was punching the air in triumph and dancing round the kitchen with you! You have been through such a gruelling and horribly frightening experience. I hope you can now enjoy and savour your wellness and relative calm without too much nagging intrusion from those pesky demons twittering away on your shoulder.
A Never Say Never story if ever there was one. Thank you for sharing it!
Pat x
Hi
New to the forum. Just discovered my lobular bc is back for the 3 rd time. Had a lumpectomy in 2014 followed by chemo and radiotherapy. All signs after this were positive margins clear only 1 lymph node removed. Was nearing my 5 year milestone and after joining a stretch class at the gym, started to feel pain at my right side. Biopsy confirmed it was back. Had a right side mastectomy a year past Sept, again all good signs, margins clear and only 1 lymph node removed. Because the reconstructed area has been numb for so long, only just found a tiny bump and after getting in touch, biopsies, ultrasounds and ct scan, now know it’s back again. Just a mixed bag of emotions just now including anger. Awaiting an oncologist appointment as there is some concern it may be in my chest wall. I wanted to get in touch to thank you for your post. Have lost all my hope just now which is not me at all. Reading your experience has made me see light for the first time. Hope you’re doing good xx
Thanks for posting your story, it has helped me feel a little more hopeful.
I was diagnosed in March 2018 with grade 3 HER2 2.5cm. I went through the standard procedure of chemo, surgery and rads. I had a complete response from chemo which once it sunk in (it took a long time) I was pleased about. I was hoping to be three years cancer free this august but just had my annual mamo and been told I had a 1.5cm lump which they are pretty sure is cancer on my other breast. I’m in that horrible limbo now waiting for the biopsy results.
I have a CT booked for Monday and am terrified I have secondary.
I can believe I’ve gone from feeling ok and as if cancer was behind me to being scared and worried that I’m going to see another springtime.
sorry for pouring my heart out to you.
That’s a great story just goes to show it’s good to keep an open mind. We need to go on researching what makes cancers grow, spread, retreat, and how our genes either protect us or do not against specific types of cancer. there’s a long way to go but the study of genetics has moved much further than I expected in the past ten years.
Unicorngirlmummy - thank you. This is so helpful. I’ve just been diagnosed with breast cancer in my remaining breast having had it 13 years ago. Long may your good health last! take care Lisa xx
You truly are a remarkable lady. Your confidence is inspiring, thanks for sharing.
Dear unicorn girl mummy
an inspiring story
Seagulls