in Dec 2017, I was diagnosed with right sided stage 1 grade 1 invasive carcinoma and left sided high grade DCIS. I ended up having a bilateral mastectomy but didn’t need chemo or rads. I had genetic testing which came back that I have a slight variation of the BRCA1. I was prescribed Tamoxifen for 5 years and told that I was very low risk of recurrence. 3 years later, I found a lump near my armpit, went to GP, then Breast clinic who took biopsy and confirmed I had regional recurrence. On 11/12/2021 I had total node clearance for grade 3. There were 2 out of 21 nodes diseased and 3’other areas described as metestatic nodules, which they can’t say if the were originally lymph nodes which have been totally taken over by cancer. Surgeon also said there was lots of disease visible, so it was agreed to clear all nodes.
ive been to see oncologist, I still haven’t gone through the menopause but I’m feeling a little insecure.
she told me there is no need for chemo again as all of the cancer is in the bin. I have been px zolodex injections every 28 days and letrazole 2.5mg. I really was expecting her to say that given the grad of the recurrence and the amount of disease found, I would need chemo.
im really concerned that I may be getting undertreated and am terrified that without chemo, I will have a recurrence later in without the positive outcomes.
my question is has anyone else experienced this and if so was your treatment different.
Hi Jane, sorry you find yourself having treatment again. My story has been a bit similar so thought I’d share with you in case it helps, but do bear in mind we are all different and our treatments are very individual. I had bc in 2014, just needed mx surgery and no mention of chemo, then a new primary on the other side in 2017 which was lumpectomy and rads followed by discussion about chemo but nodes were clear and i decided not to have it. Then like you I found lumps in the first 2014 armpit a year later. I had full anc which gave 8 nodes, 3 with cancer. My team offered chemo and because it had been in the nodes the steer from my surgeon and BCN was to have it, although the oncologist said it was a choice and definitely classed as adjuvant, just to reduce the risk of recurrence rather than because they thought there was any spread. So I had chemo during 2019. I was not given a grade for the node cancer, I asked and was told they did not grade reccurences. Chemo was quite hard and it’s good if you do not need it, but I understand your reservations. You could speak to your BCN or maybe call the nurses here for a chat, I have several times over the years and they have been brilliant. Sometimes it’s particularly good to talk to someone expert but independent from our hospital. I hope you reach a result you are happy with and wish you all the best whatever way it goes. Love Mo xx
My story, for context - I had treatment for primary BC in 2017, and a recurrence in the nodes of that armpit in 2019/2020. I first felt the raised nodes in late 2019 but by the time I got my results it was Feb, so I had surgery in March and chemo after that because I had some extravasion where the cancer was trying to escape the nodes.
The frustrating thing about recurrences is that they all seem so different - the diagnosis and path is much less clear than my fairly bog standard first cancer.
I don’t think they’re at all reluctant to suggest chemo if they think it’ll reduce the risk further recurrences by even a bit, so I guess they really don’t think it’d help in your case.
Gosrelin (zoladex) and your aromatase inhibitor should hopefully be more effective than tamoxifen - I’ve certainly found them more intense!
And if you can, talk to your BCN and give one of the helplines a call - they’re each able to give different reassurance and answer different questions.