Hi
When I was first diagnosed with invasive ductal cancer I was told that it was 9mm. When I saw the surgeon he said 17mm. Before discharge following surgery the junior doctor told me it had gone much better than than expected, they were as sure as they could be that they had got it all and I would possibly not even need radiotherapy. They had removed the sentinel node which looked ok. All very positive.
Fast forward 7 weeks to my follow up appointment yesterday to get my results, and a very different story. The lesion was 49mm, 9 lymph nodes removed (fortunately all negative), the margins are not clear and I need further surgery asap which will change the size and shape of my breast. At the moment I have a small dent in my breast. I’m booked in for 15th January. The only positive is it’s still grade 1, er positive and HER2 negative.
I was in a state of total shock having prepared myself for discussion about the pros and cons of not having radiotherapy and being discharged to oncology. I couldn’t think of any questions to ask at the time, but of course they are now flooding in.
My lesion was very deep so I can understand the mammogram measurements being wrong but how can they get it so wrong during surgery and why be so positive? If they hadn’t said anything I would have gone to the appointment anxious but with an open mind. Fortunately, my very good friend who has had breast cancer in both breasts and is a retired nurse was with me and was a brilliant support as she has been throughout my journey.
I’m dreading telling family and friends as I can’t cope with their reactions as well as my own when I’ve told them that everything was so positive.
I plan to ring the helpline today to talk it through with the nurses but wanted to get it off my chest with those who understand and ask if anyone else has been through anything similar.
Thank you for being such a supportive community
Holly x
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Hi Holly,
It’s not fair is it?? I had exactly these questions with mine. Originally pre-invasive and straightforward surgery plus 5 days of radio has now become 3 surgeries, chemo for 6 months, radiotherapy and 18 months of Herceptin injections as my 8mm tumour was her2 positive. I guess everything is just screening until they put it under a microscope but I have heard so many stories of women who have had their diagnosis changed following surgery. My surgeon has recommended against 3rd surgery as it is to get a clear margin on 0.5mm pre-invasive area which the radio will zap. I always thought all this high tech equipment was accurate in finding everything but apparently mammograms miss lots. Im trying to be positive about everything and my one sentinel lymph node was clear so I’m holding on to that. Good luck on your journey and lovely to have a supportive friend who has been there. xxx
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Thank you Sarah. It does help to know that others have been through something similar. I really did think that they had got the wrong notes or lab report because the discrepancy was so great.
Sorry that you are going through this uncertainty too. xx
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Yes it’s not nice to find your tumor to be quite a lot bigger than on the imaging, with all the impacts this can have on your further surgeries and treatment plans. In a milder way compared to your situation, I’ve also found my diagnosis to a bit be more like a journey than a one off event. But that’s probably quite common these days because more detailed checks are done than in the past to inform treatments. For example after one of the sentinel lymph nodes taken out during my first surgery was found to have cancer in it, I was given a choice of 5 radiotherapy sessions or a lymph nodes clearance. I opted for the clearance only because I knew that the lymph nodes taken out would be analysed. Thankfully none of the 9 lymph nodes removed had cancer. Just before celebrating the end of treatment with my family in Switzerland I agreed for a genomic assay to be done on the original biopsy sample. Back from holiday, the result came back as a high score, and so it turned out that a course of 6 rounds of chemo would be worthwhile after all, in addition to the longer term endocrine therapy, to reduce the risk of recurrence further. Now all the chemo is long behind me, I feel lucky to have been so thoroughly checked and treated.
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