Just had my surgery for grade 2 invasive lobular, (after a stressful almost 3 month journey but hey just glad its finally done!) - had a wide local excision / sentinal and other node removals and will get results in 4 weeks. Was surprised to learn that 1 in 5 people need further surgery due to the margins , had hoped it would be much lower odds and just wondering what anyone’s experience of this was.
Would also like to take the opportunity to praise every NHS member of staff I have encountered in past 3 months as there’s sure to be some on here, they without exception have been caring and professional and made this experience more bearable in their own way x
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Hi Jeelyjar
Having a second op, to get clear margins does seem to be more frequent than you expect. In fact, there are some that go on to have a third op. The issue is that the surgeon can not see cancer cells. They take what they think is necessary after studying scans, but it’s not until the lab (under microscope) test the outter edges that they know if they have removed enough.
I needed a second op. Due to location, my first scar run from arm pit to side of breast, about 10cms long. This captured the area to take a SLNB. The scar was very neat. The second op, went over the same incision and was much smaller, but it wasn’t as tidy as the first op possibly because the scar had already started to heal. But it still healed very well, and now nearly 12 months later barely noticeable.
Try not to worry, I know it’s another thing to deal with, but you will feel happier knowing they have done everything they can to remove it.
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I had an absolutely amazing team, although it was only grade 1 Invasive breast cancer, they made absolutely sure they took enough out around the margins so I only needed the one operation. They were also so careful and methodical in bandaging the wound that I also healed very quickly, I am so grateful to the team I had.
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I’m currently recovering from a lumpectomy on 12/8. My surgeon advised prior that he would try and take enough tissue to obtain clear margins, but as most everything on this pathway, until pathology is back this wouldn’t be confirmed. Prior to my lumpectomy scans advised I had a 6mm IDC however on receiving my results I’ve been advised this also had some DCIS, which apparently is common.
Despite this new information I’ve since had clear margins confirmed so no need for further surgery. I feel very blessed to have the care of my consultant.
I hope this provides some idea of the odds and that they fall in your favour. I also appreciate that the wait for results is awful so sending love and strength, I had an almost 4 week wait from initial biopsy to receiving my diagnosis.
Hi jeelyjar,
I had to have a second wide local excision after my first lumpectomy and targeted auxiliary dissection. The surgeon took out my idc tumour and 6 lymph nodes. 2 were cancerous. When I got my pathology results, I did not have clear margins on one side as they found DCIS cells so I had my second op. Luckily I got my results on Friday and I now have clear margins.
I asked in the hospital about the statistics for having a second or 3rd op and the surgeon said it was 20%chance each time that you might need another operation. I was also surprised by this. She pointed out that of course with a 3rd op you would be 20% of the first 20%, so much less likely overall.
My scar is not quite a flat as the first scar, I’d say a bit more puckered but it’s the same length and mostly ok.
My recovery from the second op was so much easier than the first as no nodes were removed that time so a lot less swelling and discomfort.
I wish you luck on your results and hope you get your clear margins.
Hi Jeelyjar,
I was diagnosed with ILC way back in 2013. It’s a very difficult cancer to get clear margins due to it presenting differently to ductal cancer. Instead of having a distinctive lump, lobular is rather like a string of individual cancer cells so more of us ILC patients don’t have clear margins at the first attempt. I freaked out when it happened to me, but my BCN calmly explained to me the reasons why. Of course it’s alarming, but please take heart from the fact many diagnosed with ILC have been where you are and are living totally normal lives now. I’m still here 12 years down the line with NED. Hoping you are the same and also hoping that you get clear margins first time! Xx Ann xx
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Hi Jeelyjar
I had to have further revision surgery for grade 2 invasive ducal carcinoma. Despite being given the statistics, it still came as a shock to get the results that the margins weren’t clear. Once I got over this blow, the second surgery didn’t take as long to get over as the first (first one incl removal of sentinel LN), however the scarring was understandably more. Fortunately I have healed well. All part of this mad rollercoaster we’ve unwittingly found ourselves on. Fingers crossed it all goes well for you and that the results are clear.
Hi sal1
Thank you for your reply.
I have my fingers crossed that I won’t need more surgery but will wait and see.
I hope you are doing well x
Hi thanks for your reply @AMWG
That’s great that it all went well for you, definitely reassuring to have a good team through this x
Hi @factor50
Thanks for your reply.
That’s great that your margins are good, I’m thinking positively and will wait and see what they say in 4 weeks. x
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Hi @greenfern_8 @Weeannie1 and @speedy33
Thank you for your replies. It’s reassuring to hear your positive stories of requiring a second op , I’m going try and put the results to the back of my mind for a few weeks since I can do nothing about it anyway. Hoping the sun keeps shining so I can spend the time off work relaxing outside 
x
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I had a mammoplasty for lobular cancer. My skin side margins were positive as but as all breast tissue was removed there was nothing more they could resect. I had radiotherapy with boosters and live waiting now to see what happens. For me even a mastectomy would not have necessarily cleared the skin contact with cancer. If the radial or posterior margins are positive I believe the surgeons will repeat surgery but it depends on location as to what they can do. Lobular is particularly tricky.
I needed further surgery to achieve clear margins after lumpectomy for invasive lobular cancer. I think lobular can be more difficult to find clear boundaries for sometimes due to it not forming a lump. My second surgery was ‘easier’ as I knew what to expect and the recovery was much quicker as it was less extensive surgery. They got clear margins. Hopefully you will not need a second surgery - but if you do you will hopefully find it easier than the first and the main thing is that they remove all the cancer.
Thank you for sharing your experience, there are just so many variables aren’t there. I’m learning more about lobular cancer as the time goes on. Best wishes x
Thanks for your reply, yes the surgeon was explaining to me that any further surgery should be easier as obviously they won’t be doing the nodes as well (assuming they don’t come back positive) so that’s reassuring. Just have to sit tight and see what they say in a few weeks. Best wishes x
I had a lumpectomy for high-grade DCIS in October. The pathology results showed that I needed a wider margin. I was lucky that my surgeon was able to do the re-excision a week after the first surgery. The second time around was so much easier. I knew what to expect and wasn’t as scared as I was the first time. I hope you won’t need further surgery but if you do, you’ll be fine. The same loved ones that were there for you the first time will be by your side again.
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I had a WLE & ANC in April for high grade idc. They found some dcis on the margin so after I’ve finished my chemo I’ll be having another surgery to try and get a clear margin. Annoying but I’ll feel better knowing they are doing everything they can to get rid of it. Then I’ll be having radiotherapy, endocrine & targeted therapy x
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