Hi, I am 2.5 weeks post lumpectomy op and have had my results. They show the lymph nodes are free but the tissue taken around my lump shows precancerous cells, are these DCSI cells? I’ve been given the option of another lumpectomy or mastectomy.
My biopsy showed ER+ PR+ HER2-
Can I ask if anyone else was left with this quandary?
I asked my surgeon and nurse what the most common choice was and they said 50/50. They also said the cells can’t be seen on anything (mammogram/mri etc) so there is no idea of size but I have read that these cells can be seen on mammograms. This has all made me really confused. The meeting felt very surreal (like this whole journey) I hadn’t expected this as a dilemma.i also feel very deflated and depressed which is something I haven’t felt like yet. I have managed to stay quite positive up until now.
I’m calling them today with lots more questions as precancerous cells was not something I had read about or ready to have to think about.
Any advice or anyone’s experience is very much appreciated. Thank you
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Yes they do mean your cancer was combined with DCIS and they didnt get clear margines. They should of just said that really rather than trying to speak in easy terms that confuses more.
50/50 comes from lumpectomy and radiotherapy having a similar outcome to mastectomy, so that’s the choice. I supose then it comes down to size of area needing to be removed vs size of your breast. How much have you had out so far?
Like they said, not all DCIS shows up on scans and some can only be seen under a microscope once the tissue has been removed, so you can’t know the size before its out sometimes until it’s all out.
Its not unusual for them to find DCIS too that didn’t show up pre op, happened to me. Cancer was 1.6cm, DCIS around 1 cm, giving a total of 2.6 cm, then there is the margine needed making the tissue removed bigger, plus they did a 1cm cavity shave on top which was totally clear. So, by that I’d guess I’ve had about a width of nearly 4 cm out in total. Luckily large breasted and upper left quadrant. So far has not affected the shape as high up and towards the armpit, so position of tumour is a factor- I’m sure if I had 4cm of lower quadrant tissue removed I would of been lopsided.
I didn’t need to make a choice as all found intra-op and done at once.
Its a balance between best cosmetic outcome vs mental attitude to multiple ops and how you feel about mastectomy. That is individual to you, so only you can answer that, as long as you are clear on what it all means.
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Thanks Entropy.
I’ve just rang my breast nurse to get the measurements.
My initial lumpectomy was a total of 4.6cm, the actual cancer was 1.4cm. The margins were less than 0.2mm but contained within that. Obviously very close.
Mine is low, left. 4 o’clock position as my doc put it. Just below my nipple.
I’m thinking I should try for another lumpectomy over a mastectomy now I have these measurements to look over.
It’s good to read others experiences and outcomes.
Many thanks for your reply.
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You also made it very clear for me to get my head around it all. I think I’ve been over stressing. I found out Friday so have been sitting on it all weekend.
I am large breasted so hopefully it won’t affect the shape although I will be just happy to know it’s all been taken out.
Many thanks again for helping me see this clearer. x
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There is some room to maybe get even more detail from your BCN. There are 6 margines in total - top, bottom, front, back, right left. For DCIS, the ideal is 2mm clear margins. If you ask ( because they always seem to assume details are unnecessary so don’t volunteer it up) you could perhaps get the individual measurements of all margins - I’m assuming that it would be coincidence for all of them to be by 0.2mm. From what they have said to you so far it implies that it is a case of all magins being clear but close, which means if they are just after bigger clear margins, not much more would need to be taken in a further op and it should be achievable next time around. Perhaps they could clarify that.
As far as I was told I had zero margins top and front but was not offered to go for further surgery, as the reason was the end of breast tissue at the top ( no more to take) and up to skin at the front, so radiotherapy boosters to that area was done as a precaution.
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You’re right about the info and not getting enough. I’m definitely someone who wants it all. I’m sure we all are when it comes to our breast cancer diagnoses.
It’s really useful information you’ve given me. Thank you very much for your response. I’m going to call my BCN again for another chat.
You’re welcome. I’m also someone who likes every detail. But only my zero margines got a mention, and why, so assume others were ok. If Id needed further surgery, I’d of insisted on every detail prior as it’s my body, my choice.
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So I’ve decided to try for another lumpectomy based on the information I gathered and thanks to your help Entropy. I go back on the 4th of April. Many thanks for your guidance
No prob, happy to be able to help x
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