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Topic: 63 YO - Diagnosed 9/2020 - Had lumpectomy with re-excision

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Dec 5, 2020 09:48PM - edited Dec 5, 2020 09:50PM by Misterace

Misterace wrote:

Hello All,

I have joined this forum to help my mother find some support.

In 9/2020, she was diagnosed with stage 2 invasive lobular carcinoma. On the imaging the tumor appeared to only be 3cm and the surgeon was very confident she could get rid of it with a lumpectomy. (Hormone positive, HER 2 negative, Grade 2)

In 10/2020, she had a lumpectomy and sentinel node biopsy. Thankfully the sentinel node biopsy came back negative, but the tumor did not have clear margins. It was explained to us that since she had lobular cancer, it's very hard to see on imaging and it often has "tentacles" that shoot out from the tumor.

As a result, in 11/2020 she had a re-excision. But unfortunately, once again the margins were not clear. Therefore, the surgeon recommended a mastectomy. This was a big shock for us because it went from "oh it's a tiny 3cm tumor, you're going to be ok" to "we will need to remove the entire breast"

Consequently, we sought a few more opinions with other surgeons and it was a 50-50 mix on giving it one more try with a more "aggressive" lumpectomy or a mastectomy. Since the surgeon she had the best feeling about suggested giving it another try (and the surgeon felt very confident they could get her clear margins) , this is what she is opting to do.

This will be her 3rd surgery is 60 days and it's just been very emotionally and physically taxing. I would love to find her some support from perhaps other fellow members that have been in her shoes. She is still not 100% sure if she is making the right choice with another lumpectomy vs. mastectomy ... but it sounds like there really is not "right" answer.

If anyone else that has had a similar experience with lobular cancer and multiple lumpectomies could please reach out, it would be very much appreciated.

Thank you,


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Dec 6, 2020 01:36AM AliceBastable wrote:

Mine was, I believe, ductal with lobular features, so not quite the same. But I did have a re-excision. I was in and out in about 20 minutes and was home by late morning. It barely counted as surgery. If I'd needed another one, I'd have done it without batting an eye. I was 68 at the time, so older than your mother. Unless she has major health issues, another re-excision shouldn't be a problem. A friend of mine did the mastectomy instead of a re-excision, and she hasn't had any problems, either - and she was in her early eighties at the time. They're both doable.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Dec 6, 2020 10:57AM Beesie wrote:

Misterace, a 3cm cancer is not tiny. So even the original diagnosis was not a small confined cancer. As such, and given that your mother has ILC, which tends to spread out in the breast tissue rather than forming a lump, I don't know that it's that surprising that the area of cancer has turned out to be larger. Has your mother had an MRI? If not, I think that would be advisable prior to the next surgery. I believe that MRIs are more effective at "seeing" ILC, although hopefully someone with ILC will pop by to comment and confirm.

Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Dec 10, 2020 01:52AM KMo1975 wrote:

Hi Ace,

Yes. I had 2 lumpectomies. Sept 2018 lumpectomy, then went for 2nd/3rd opinions. Then 2nd lumpectomy December 2018. Surgeon recommended 3rd lumpectomy. I went for another 2nd opinion in January of 2019. I did not have the 3rd lumpectomy or mastectomy. The need for multiple surgeries i not uncommon with lobular and I knew going in that multiple surgeries were possible. I also looked into the mastectomy option. Pathology should drive treatment. Clear margins are important. It comes down to a personal decision of how many times you want to try for clear margins before you throw in the towel and go for mastectomy.

After talking with 3 plastic surgeons about mastectomy and reconstruction, my personal choice was to try for clear margins with lumpectomy. There are 6 margins to clear. After the 2nd lumpectomy, I had 5 clear, one close.

If I had not gotten clear margins, I was prepared for mastectomy, but saw that as the last resort. Not my first choice. This is a personal decision. I chose to go one step at a time. Many choose mastectomy as their first choice because lobular tends to be hidden on imaging, hard to detect, and they want to avoid radiation and the need for continued surveillance imaging. These are agonizing decisions and there really is not a right or wrong answer, but now at this point I would be asking how many margins are clear? How many close? I am assuming she has had a breast MRI? If not, stop and get one. Again, clear margins is the goal.

Pleomorphic ILC and Pleomorphic Lobular Carcinoma In Situ 4.5 cm Dx 12/1/2017, ILC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- (FISH) Hormonal Therapy 1/31/2018 Arimidex (anastrozole) Surgery 9/24/2018 Lumpectomy; Lymph node removal: Sentinel Surgery 12/19/2018 Lumpectomy: Right Radiation Therapy 3/4/2019 Whole-breast: Breast

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