Hi I am 61 years old and I found a lump in July saw my gp who thought it was probably a cyst fast forward after a mammogram ultrasound and core biopsy I had a diagnosis of IDC 3cm grade 3 Her2 Neg I had a wide local excision and SLNB in September that I was told went well a tissue sample was sent off for Oncotype DX testing the results came back in October with a high score of 75 and 33% chance of reoccurrence my oncologist said I would need 4 cycles of Epirubicin and Cyclophosomide and 12 weekly cycles of Paclitaxel followed by radiotherapy and oestrogen blockers.
I was due to have my 1st cycle on the 28th October I had a heart scan and was told on the 23rd there was an issue and I wouldn’t be able to start my chemo as the Epirubicin wasn’t suitable to use on me as potentially it can damage the heart. I am waiting for a cardiac MRI a d saw my oncologist today who told me the non anthracyclin chemo drugs they would now use for 4-6 3 weekly cycles the side effects sound pretty awful alongside the usual ones they include painful aches and diarrhoea he also told me that he had sent my tissue sample to be retested as it was only weakly 4/8 oestrogen receptive and the results came back that the cancer is actually triple negative I am so overwhelmed and cannot process all of the information the original diagnosis sent my anxiety spiralling now the triple negative one feels like it is pushing me over the edge it is all I can think about. I am waiting for a CT scan appointment as I have had a pain in my back and a slight cough for 3 months my gp listened to my chest and said it sounded clear I had mentioned it as I was concerned about it, I don’t have a start date for my chemo they hope it will be next week the oncologist has said he won’t wait for the cardiac MRI results to come back, my husband is not dealing with my diagnosis or my anxiety levels I have lovely friends but I don’t want it to be all we talk about this has been going on since 11th July I am craving some normality I used to go to 3-4 yoga classes a week but since my operation and then waiting to heal from my portacath insertion I feel my life has been taken over by hospital appointments and relentless bad news I am normally an upbeat glass half full person but I am terrified of what is to come I have lost half a stone since my diagnosis which I think is due to my anxiety and not sleeping so not having any appetite it would be so good to hear some positive outcomes from anyone else who has had a triple negative diagnosis I haven’t googled it as I want to trust the information
Hi @Stafford13 I’m sorry to hear of your diagnosis and the problems you have incurred. I can sympathise that in 2023, I thought my treatment plan was lumpectomy and radiotherapy. Then I was told I was HER2+ and needed chemo and target treatment for a year, then they found another tumour in the other naughty boob. I also had existing heart issues that affected my treatment plan that was changed.
This forum is a safe place to share how you feel with others that get it. You may benefit from joining the monthly chemo starters group to be with others having chemo at the same time as you, I found it very supportive. Here’s the link for October
Please also know that the BCN nurses are available m-f 9-4 and sat 9-1 on 0808 800 6000 with no question too small. You can just chat everything going through your head.
Take care.
Hi Stafford13,
It’s such an awful time waiting for treatment to finally get going, and all of us understand exactly how you feel. I personally had grade 2 ILC away back in 2013, so rarely come onto this site but felt I had to reply to your post. When I was diagnosed, I had a friend who was also diagnosed at the same time with a 3cm grade 3 triple neg IDC. She underwent chemo and is still cancer free 12 years later. I’d like to add, that my own treatment plan was very delayed in starting, and each time I visited the hospital for results, things got worse. I was diagnosed mid November 2023, had initial surgery at the end of December followed by further surgery for clear margins mid February. Only then did I get my treatment plan which included 6 months of chemo and 24 rads sessions, which didn’t start till the end of March. I’m still here with no evidence of disease some 12 years later. I’m hoping with all my heart that you have the same outcome as both myself and my friend. Take care and sending big gentle hugs. Ann xx