Weird day here - I had a face-to-face appointment booked to discuss surgery for the first time, but everything seemed to turn on its head. Half way through the drive to the hospital, phone went off. Pulled over and called back - they wanted to do apt by phone rather than face to face! So I turned tail and hotfooted it home!
Anyway - still no outcome on surgery because my MRI (I was diagnosed with Lobular, so they wanted to check for other areas) showed another suspicious mass in the same breast. Now I have another biopsy first thing tomorrow - though if it doesnât show up on the ultrasound, I will have to travel to Bristol to have an MRI biopsy instead. When I pressed him, he said it was highly likely to be another tumour. This will mean a definite mastectomy. I asked if we couldnât just skip straight to that to speed things up and avoid all the biopsy rubbish, but it is a definite no-go!
Anyway - sorry for the ramble, Iâm still trying to digest all this. The one bit that Iâm most concerned about is that at the moment âthereâs no strong indication that chemo will helpâ and theyâre sending away for it to be Oncotyped just to double check. On one hand, of course Iâm glad that the likelihood of having to have chemo is low - but on the other hand, it scares me that this major tool of beating cancer wonât help me! Does anyone have any words of wisdom on this? It is ER+ though, so I will end up with something like tamoxifen at some point.
Sorry to waffle. Just needed to talk to some people who get this stuff a bit more!
Iâm not a medical professional at all, but I think they tend to use the phrase âit wonât helpâ when they mean âwe can do enough by other means, so you wonât need itâ. Not always the best at phrasing, are they? I had similar last year, had a mastectomy and there was no indication at the time that chemo would be adding much benefit, so indeed ânot helpfulâ in the longer term risk management sense.
Hope that sets your mind at rest a little, and sending you all the good thoughts for the next steps xx
I have a very similar story to yourself. Iâm at bit older at 40 and was diagnosed (last October) with Lobular Cancer. On initial inspection with biopsies, MRI, ultrasound the cancerous area seemed much smaller. Ended up being 4 cm which they managed to get clear margins after 2 operations. I went down the Optima trail route and it came back that the chemo would not work for my type of cells.Â
Iâve just completed radiotherapy and take tamoxifen too.Â
Itâs so difficult not to worry and I hope you get a date soon for your operation. If you ever need to vent or need any further help/ words of wisdom feel free to message me ? LynseyÂ
I am 41 and have (had!?!) bilateral hormone positive BC. One of my Oncotype tests came back low at 11 and the other one was unexpectedly higher at 21 which put me as âborderlineâ benefit for chemo.Â
My oncologist took the decision out of my hands and decided chemo wouldnât be part of my treatment plan. Iâm grateful she did - there would have only been a small benefit and I would have agonised over the decision. I definitely have moments of terror - that we havenât thrown everything and the kitchen sink at it - but I remind myself that I trust her and know she will have weighed up the risks vs benefit of chemo.Â
I really get how you feel. The shock of the diagnosis/results puts us in such an anxious heightened place. I find if I express my concerns to my team they usually put my mind at rest. Itâs hard placing your trust in the hands of others whist advocating for yourself. I hope you can get some reassurance.Â
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