ILC: Double Mastectomy-all breast tis... - My Breast Cancer ...

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ILC: Double Mastectomy-all breast tissue removed - Pathology showed positive margins.

ba5083 profile image
14 Replies

My wife was diagnosed with Invasive Lobular Carcinoma in April. HR/PR positive (95%) Ki67-12%, HER2 1+ Negative. Oncotype test indicated or confirmed IV chemo would not be effect based of her ILC composition. Due to the size of the tumors she was put on Ibrance and Letrozole to help shrink the tumors prior to surgery. All other scans (full body, brain and bone) came back good. It also appeared after comparing a breast MRI in June and a 2nd MRI in September that the treatments helped shrink the tumors . We met with the surgeon yesterday and went over the pathology report. On 1 side she had 8 lymph nodes removed...4 Macrometastases to other 4 were good. What concerns me the most she did not get clean margins in the upper outer quadrant and less than 1mm margin in lower inner quadrant. Although she had scans in April that seemed normal the markedly differences between breast MRIs and the surgical pathology report has our Onc ordering additional scans. Any one have experience with getting positive margins after a double mastectomy having ILC? If so can you please share your experience? Thanks so much for your comment in advance

14 Replies
LotusAFlower profile image
LotusAFlower

I did not have clear margins with Lobular cancer after double mastectomy , bone Mets and the surgeon recommended radiation . Chemo would not have been beneficial so I had 25 radiation treatments ….

ba5083 profile image
ba5083 in reply to LotusAFlower

Thanks so much for sharing. Her Oncotype test showed IV Chemo would not be affective either. She is scheduled for a full body and bone scan nest week (last one was in June). Curious if you are comfortable in sharing the medication you might be on today, when this took place and how things are going.

LotusAFlower profile image
LotusAFlower in reply to ba5083

I thought I posted a second more detailed reply but I don’t see it . Do you see it on your initial post .?

ba5083 profile image
ba5083 in reply to LotusAFlower

Thanks - I do not see it on my end

LotusAFlower profile image
LotusAFlower

I am on Faslodex injections monthly and zometa infusion every 6 months for the past 16 months now .

ba5083 profile image
ba5083 in reply to LotusAFlower

Thanks for sharing

LotusAFlower profile image
LotusAFlower

I wish for your journey to be smooth and your wife will find successful treatments …. I couldn’t do this without my husband .. he’s been here for me every step of the way. Please make good memories together because we really never know when we can’t ..

ba5083 profile image
ba5083 in reply to LotusAFlower

Thanks so much for sharing!

DJK99 profile image
DJK99

Hello - so sorry to hear this. I did not have ILC and have only had one breast mastectomy. But thought might help?

I have invasive micropapillary carcinoma Grade 2. I've had this 3 times now in 3yrs on the same side, with a radical mastectomy in Sept 2021, post lumpectomy in March 2019, and then recurrence just above the mastectomy scar taken out via lumpectomy in May 2022. This is unusual they said ie having recurrence post mastectomy. The pathology report of the lumpectomy in May said cancer cells found "0.1mm from the deep margin" ie to the breastbone(?), and less than1.0mm peripherally. So they said "completeness of excision cannot be guaranteed". Oncology advised risks to me, having taken into account my oncology history plus their experience, of not taking medication (ie leterozole) or having therapies afterwards. I was recommended to have 9inches by 5inches bolus radiotherapy. They were originally strongly thinking chemo too, but eventually realised it would "be hard to put in me" due to my other health complications ie many complications of lupus, sjogrens, heart disease, immunocompromised via methotrexate/immunosupressed naturally. and probably the negatives would outweigh the positives/it wouldn't be worth it due to the fact the CT scan pre lumpectomy didn't show any spread... so suggested the radiotherapy, despite high risk of severe side effects to me with this.

I take it you are asking what therapies/medication etc people with your wife's diagnosis have after all she has been through? I wish I could help more. There is a lot of very useful medical research on the web regarding outcomes of those who have had radiotherapy post mastectomy and I think it says it is best for those without clear margins, and this makes sense. I can send the link if you like. There will be a lot of more directly useful medical research on the web - if you've not searched already, however the fact you are on here and sound very up on it all means you probably have. If not, I find the best stuff by putting in the words you'd expect to find in the research. I used to be a business analyst and information analyst and find stuff quite easily, so let me know if you'd like any help on this. I do find my surgeons and Oncology do not send the most up to date research when I have asked, but they have no remit to send us info anyway, let alone the NHS etc having any time to. I usually find recent, focussed on my issues papers.

I do hope that helps. Let me know if you'd like any research I've found. I need to know as much as possible for good and bad, to help me manage/make the right choices for me, and it's clear you are the same.

Best wishes to you and your wife.

D

ba5083 profile image
ba5083 in reply to DJK99

DJK - Thanks so much for sharing your experience and knowledge. I try to stay away from Dr google for the most part accept for a couple reputable sites. We currently have scans scheduled for tomorrow. The seriousness of our interactions with the ONC and Surgeon changed drastically since the surgical pathology report. Prior to surgery everything regarding scans, MRIs, Ultrasounds, etc seemed to be going "as planned" masses were shrinking etc. I have come to the conclusion that nothing with cancer goes as planned. We have scheduled a 2nd opinion with a NIC designated Comprehensive Cancer Center/teaching hospital in mid December. We really like on current ONC but think it is best for an additional opinion. I might take you up on your research experience after we get the advanced pathology reports and results from the scan. Very kind of you to offer.

DJK99 profile image
DJK99 in reply to ba5083

Yes, I thought things might move on quite swiftly, I'm so sorry. And, as you'll have gleaned from my story too, no, nothing goes as planned.. my oncologist said "we can now see the true nature of your particular beast" as the oncotype test in summer 2019 showed it to be only slightly above low risk recurrence. I know what you mean about Google, but as you'd expect, my job required obtaining info from absolutely reputable and relevant sites, nothing less. The research I found is all British Medical Journal etc etc. I used "Medical research" as part of my word searches and google even gave the option to open only "medical research papers" or something, which was handy. I think you are in the states due to the Center spelling, and sounds as if they are ahead on things compared to the UK. Wishing your wife and you all the very best possible support and outcomes. D

ba5083 profile image
ba5083 in reply to DJK99

From the initial biopsy her OncoType test was a 14 with results suggesting a similar low risk recurrence with the recommended treatment being an estrogen blocker namely letrozole. Course that test was done 4 months prior to the surgery (as they were trying to sink things to get clean or negative margins). Thanks so much - very much appreciate the correspondence.

DJK99 profile image
DJK99 in reply to ba5083

Yes, I was 13 oncotype.. and recommended radiotherapy and Tamoxifen rather than letrozole as I have bad joint stuff (although recommended letrozole the second time anyway!). I've not heard of it being able to reduce size of tumours I must admit, rather reduce the chance of recurrence, but that's probably as me taking it was to do the latter rather than the former. All the very best, always here if you want to bounce anything off - I do think there are many more on here far more in tune with your wife's situation, and hope they respond. Not sure if this is the US or UK hub - will check and advise you if there is another one that might help.... back in a mo'.

DJK99 profile image
DJK99 in reply to DJK99

Yes - there is SHARE breast community and they are really up on things I find - it's also US based I think, so might be more relevant? Do give them a try by posting as they are really informed US-wise. All the best to you both, such hard times, D

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