Hi,
Earlier this year I was diagnosed with TNBC this is the second time round for me. Last time I had a lumpectomy - grade 3 tumour, lymph nodes clear. After surgery I had chemo followed by radiotherapy…following this I had check ups for the following few years. Even though it was a huge shock at only 38 years of age the support and care throughout helped me through. Gradually life got back to normal and eventually the whole episode became a blur and was I thought just a blip and a thing of the past. This time the diagnosis just seems unreal, one appointment to give results and straight into discussions of mastectomy. A few weeks later the operation and reconstruction was complete but then that was it, no chemo, no radiotherapy and only one follow up with oncology where I was discharged. This is so unsettling, I’m left very anxious as I was wanting to discuss the risk of another return particularly as TNBC is so aggressive and the tumour was quite large when they found it even with annual mammograms.I’m thinking I should have elective surgery to have the other breast removed but nobody seems able to talk this over with me or understands my concerns - the consultant says that it’s gone now so I shouldn’t worry!
Has anybody else had a recurrence? How did they treat it, I don’t understand why i didn’t need chemo - when I did last time
Really sorry to read this, donyou have a breast care nurse that you were assigned ? Maybe she could voice your concerns for you or put you in the right direction to speak with someone who wants to listen.
Thanks for your reply, I totally agree, I can’t believe how good the support was last time, it does make such a difference.
I have contacted the Breastcare nurse - the one I had originally during and post op was very unhelpful and actually quite rude she just went silent if I had concerns or questions people behave so differently now it seems COVID has enabled them to do that somehow. The new nurse is lovely though and made an appointment with the consultant for me - the consultant however - who was also the surgeon clearly hadn’t read up on why I wanted to see him and didn’t seem to even know which of his patients I was, he looked quite blankly and asked questions which related to other patients before reaching my notes then gave some rather bizarre answers - for instance that because I had chemo previously it reduced my risk by 50% and also as the cancer was flagged by genetics dept as probable gene fault but in a gene that hadn’t been yet studied he said that also would reduce my risk by another 20%!! Even genetics don’t tend to give percentages - plus it doesn’t sound right - so none the wiser. I asked him to refer me to genetics and also asked the dr to refer but neither have done so.
Oh and the consultant also called me the following week discussing my appointment he didn’t do the usual checks of date of birth etc part way through hr asked me to remind him how many weeks pregnant I was!! I’m 53, I’ve had my ovaries removed - wrong person!!
sorry, I feel like I’ve had a bit of a rant but I just can’t believe how much the system has changed, you couldn’t have hoped for better before.
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