new diagnosis ILC, LCIS, unsure what to do surgically

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mellielu
mellielu Member Posts: 15
edited June 2020 in Surgery - Before, During, and After

I'm not sure what forum to post in! I thought I'd try here because the first decision facing me is what surgery to plan for. I'd like to hear opinions on recovery with lumpectomy + radiation versus bilateral mastectomy.

I got the call that they found invasive lobular and LCIS from a core needle biopsy in my right breast. The info they have back so far is approximately 0.8mm, er+, pr+, ki-67 6%. Her2 still unknown. Was told low grade - not quite sure what that means. It's been there over a year (couldn't convince radiologist to biopsy earlier; they wanted to observe and do serial mammograms -two previous - until this most recent scan when it also showed posterior shadowing on ultrasound).

I met with a local surgeon (general surgeon but much of his practice is breast cancer) yesterday. He sent off saliva for genetic testing and is scheduling an MRI... waiting on that. He said if the testing comes back favorable and the mri isn't crazy "busy" on either breast, then I could do lumpectomy with a month of radiation, or a mastectomy. I could do single or double, but I would choose double.

Surgeon said I could go ahead with bilateral mastectomy at any time and not wait on testing. But if I want options I must wait for testing which takes 2-3 weeks. He wasn't worried about the wait.

I'm most concerned with surgery recovery and long term effects. I'm nervous about the 4-6 week recovery from mastectomy. And I don't want long term pain/lymphedema. But is the radiation going to impact me just as much as a double mastectomy would?

I'd love any feedback on your experiences with your decision, thanks

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  • KMom57
    KMom57 Member Posts: 252
    edited June 2020

    I ultimately didn't have an option for lumpectomy on my ILC because it was multifocal (more than one place), so I can't advise you there. And I haven't had radiation yet so no advice there either. In the very short time lumpectomy was on the table, however, my concerns were that mine was on the left side and I was afraid of left side radiation. I also was concerned because of the tendency for ILC to hide from imaging. They had missed my ILC through multiple MRIs, and so I had no confidence that they'd catch a recurrence if I had one. So I think I'd have chosen mastectomy in my situation, because I was far more afraid of recurrence than losing both breasts but Ultimately it wasn't a choice I got to make. Removing the right was my choice though. I was concerned about recurrence andI did not want to be back here again in the future. That said, mastectomy has not been a piece of cake, but even so a bit less horrible than I expected. I've had no complications, no swelling, and according to my surgeon, have had a quick recovery. Drains (which were the worst part of the surgery so far) were down to one at one week, and out at 2. 21 days out, I'm released to do whatever I want physically. My right arm (no lymph nodes removed) is almost fully functional, no pain, complete range of motion. My left is another story. The ALND (lymph node dissection) has done a number on that, though no swelling or real pain, just very tight all the way down my arm, limited ROM and I'm despairing that it will ever be normal. The other issue I note from the mastectomy is the awfully uncomfortable feeling like I have duct tape wrapped around my chest, and I want to rip it off but I can't. My surgeon swears that will loosen, but I'm worried. I can't imagine this being my daily sensation forever. I'm no expert on any of this but that is my experience so far if it helps.

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  • BCat40
    BCat40 Member Posts: 241
    edited June 2020

    I had a very similar diagnosis. I had a small ILC tumor and a fairly large area of LCIS. Because the surgeon wanted to take it all out, she said at least mastectomy on that breast because lumpectomy could be disfiguring. Then I decided to do both for symmetry. Well COVID ruined that plan and I got downgraded to a lumpectomy just to get the cancer out, with the BMX to be scheduled later. It turned out that it did not disfigure me, so surgeon said if I wanted to keep the breast I could just do radiation. I got a post-surgical mammogram to see if anything was leftover and it came back totally clean so at that point i felt it would be overkill to do the DMX. All my genetic testing came back negative though and I had an MRI that didn't show anything going on anywhere else. I am in radiation and it is not too bad yet, I am having some swelling pain but that's apparently because I got a seroma in the surgical field. It's not the fault of the radiation, the radiation just made me realize it was there.

    If I were in your situation I would wait the 3 weeks to get the testing to have complete info. I had to wait 7 weeks between my diagnosis and surgery because it had to be coordinated with BS and PS (since i was supposed to be doing BMX plus recon) and I was still lymph node negative and the tumor size was the same on my post-surgical pathology as what the diagnostic ultrasound showed.

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  • KMom57
    KMom57 Member Posts: 252
    edited June 2020

    I also would wait for the testing to come back and make a decision with all the info.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2020

    Dear mellielu,

    Welcome to the BCO community. We are sorry that your ILC and LCIS diagnosis brought you here and we are so glad that you reached out for support and shared experiences from our members. You have already received what we hope are helpful responses. There is a great amount of support and resources shared here on the boards and we know that you will find value in staying connected and active as you need. There is a forum devoted to ILC and that may be another place to visit. Let us know how we can assist your navigation and answer other questions as you become familiar with the boards.

    The Mods

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  • mellielu
    mellielu Member Posts: 15
    edited June 2020

    Thank you for the responses! So I am waiting for tests. Mri next Thursday. I plan to spend this weekend reading up on both surgeries. I'll check out the ilc board. Wasn't sure if I'm primarily treating that or the lcis. Thanks again.

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