Hi everyone,
Having floated around reading posts from all you lovely people on here for a wee while I've finally plucked up the courage to join in. Here's my story so far...
A bit about me first - I'm 57 and married to my soulmate. Have two beautiful step-daughters in their 30s who lost their mum to BC 10 years ago. So this makes it super sensitive for them. I run my own design consultancy and marketing business - so that's going to bring its own challenges. No sick leave or sick pay!
So here's the tale so far: Found a lump in my right boob at the end of May and having had a cyst there previously thought this would be the same. It wasn't - within less than a month it was biopsied and I was having a lumpectomy and SLNB for what I was told was a small (18mm) Grade 1 Invasive Ductal with no sign on scans of lymph involvement, good prognosis. Fast forward to 10 days after the op and I was told yesterday that it was in fact 24mm, Grade 2 and cancer found in 2 of the 3 lymph nodes biopsied. The cancer is ER Pos and HER2neg.
I've decided to go for an Axillary Node Clearance which is happening next Weds. My previously biopsied nodes have been flown out to the USA for the OncotypeDX test and they'll test the remaining nodes removed next week. Then decide on initial treatment - chemo was mentioned plus radiotherapy. The cancer is ER+ and HER2-
To say the already shaky ground I was standing on now feels like it's collapsing is an understatement.
I think the worst thing for me is not allowing my mental demons to take over - as a graphic designer, I've already designed my funeral order of service!
I guess I'm hoping chatting to women in a similar situation to me will help bring me back on to more solid ground mentally. Having had a not great but positive initial diagnosis, only to find it's not as positive as we thought has totally erased all the hope I had. And now I'm crying again - how much crying can you do before you start to crisp up?
x
I was more worried about others and their reaction than me but did spend the next couple of days, breaking out into tears. It's a lot of info to take in. I was very non plussed by the registrar who kept muttering on about this lesion. She never even mentioned the word cancer. Her manner was awful and she didn't come across well. It's only after she left the room and the breast nurse explained everything that I realised. You're never sure of the outcome of news. I wasn't too worried as this registrar who had examined me and sent me off for ultrasound, mammogram and biopsy kept muttering how it was all hormone related as I'd been on the pill for so long! but it was a shock and so much to take in. Having said that, it was caught early. They removed all the cancer with the lumpectomy. Just waiting for my oncology tel call. I found my breast nurse not very helpful - bit too airy fairy and too softly spoken for me so have soldiered on without. If I ring on days she's not in others are good.
Although family have been supportive, I found it easier typing out fears and questions to others here on the online community. Yes we are all different but we've all had similar experiences that can help. keep going xx
Gosh, TM - sounds like you've had a rough time with your team! It makes it doubly harder if you don't feel totally comfortable with the people who are treating/caring for you. Can you ask to change your BC nurse? Or is that not allowed?!
My BCN tried to answer my questions about node radiotherapy vs. clearance yesterday via email, but TBH they didn't really address what I was asking. So she's asked my consultant (surgeon) to call me today. No call as yet. I've got surgery booked for next Weds which, frankly, I'm not sure I want - so feels like a race against time at the mo!
Hope you get your oncology call soon - as you say, keep going!
Take care x
I just ring on a mon or tues as nurse only works wed-fri. she's not much help anyway but yes I think a good team helps. Picked up my tamoxifen today but waiting till mon to start. Oncology call tues pm next week so not long to wait...one day at a time x
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