Diagnosed 30th Sept 2025. Started chemo first (EC). Don't understand a lot of what I've been told!

I left those in my flat so will defo retrieve and have a better look. Thanks for reminding me ... I got all the literature on day one and was absolutely not in the place to read it all!

100%

wow that's really interesting, I was diagnosed with Grade 3 breast cancer 5 years ago after finding a lump, I was told it was an aggressive fast cancer and thought that meant it would spread super fast, really good that your consultant explained that wasn't the case! I never got given any of the figures you were given.  I was just told I had grade 3 hormone positive cancer that had spread to atleast one lymph node.  Lockdown had just started, the normal treatment for me would have been chemo, lumpectomy and lymph node clearance, radiotherapy and endocrine treatment.  They didn't do chemo as they were avoiding it where possible due to covid so I had my operation just 3 weeks after finding the lump and they sent my tumour of to calfiornia to get an oncotype score - this analyses the charactaristics of the cells to give a score on the likelihood of recurrance to see whether it would be deemed beneficial enough to take the covid risk and go ahead with chemo, thankfully my score was low to medium, that would still mean chemo now but not during lockdown.   I had to take my hospital bag with me to the meeting with the consultant when I got my mri/ct scan results as he said he would see me in the morning to discuss and operate in the afternoon.  It had only spread to one of my lymph nodes thankfully.  I had to come off of the tamoxifen after 5 years but I have been having extra scans to the nhs ones privately and all is looking good, no sign of recurrance. Sending you lots of love through your treatment and hoping the chemo goes ok xx

This is very interesting. Do you remember what your oncotype score was? I presume you were post menopausal if you eee on tamoxifen? What private scans do you have, CT, MRI, ultrasound? 

Hi Sparkle, I was 49 at the time and was and still am pre menopausal.  My onco dx score was 16, it was right on the cusp as the risk scoring changes when you're 50 so under 50 it was medium risk and over 50 low risk.  I have dense breasts so my cancer never showed up on a mammogram however that is the only scan the NHS would offer me so I had the Mammograms on the NHS for 5 years and saw a private consultant.  The private consultant said I need to carry on with scans for ten years, he said if the cancer returned after ten years it's what he would call a lazy cancer and unlikely to cause much damage, however if it returned within ten years we would need to act more quickly.  He does a breast MRI and an ultrasound.  Tamoxifen is the only tablet that can be taken before menopause and I had to come off of it due to complications but there wasn't another tablet they could give me without forcing the menopause first.

Thank you for taking the time to respond, I just like to hear other people’s stories especially when they are out the other side so many years later. 

Yes sorry I meant pre-menopausal as I knew tamoxifen was for pre-menopausal and letrozole for post menopause. I have been put into menopause so that I can take letrozole. 

My oncotype score was 26. If over 25 and pre-menopausal which I was it said chemo would be of benefit. 

I know in Covid times they were o my giving 5 sessions of radiotherapy and they used this as a trial to see if it was as effective as 15 over a 5 year period. Just wondered if they did a similar thing with chemo but sounds like they still just relied upon the oncotype dx test.