My Mom has ILC

Jada200 · May 2017

Hi,

I'm going to explain this the best I can. This is all new to me and our family.

My Mom is 75 years old and was diagnosed with ILC . She found the lump in her breast, went for mamogram. Radiologist told her it was nothing, not to worry, come back in 6 months.

After the Holidays in December, she went to a surgeon she "likes". He does gall bladder surgeries, breast, I guess an all around surgeon. He said it should come out. She went for the surgery February 16. He wasn't concerned and thought it was a papilloma. Results came back with ILC. Double Mastectomy recommended. Surgeon told her not to worry, it's slow growing. She had a 2 week cruise planned with my Dad. He told her to go. She did.

Double Masectomy was done April 6. Took out Sentinel node. It didn't show any cancer during the surgery with the testing they did on it at the time. But, it came back with microscopic cells.

She also had reconstruction for new breasts. So she has a metal band in right now and cannot have MRI's.

He sent her to an Oncologist in the area (we live in NJ). Oncologist sent her this week for cat scan (wanted PET Scan, but medicare won't pay yet, cannot use PET Scan as first test). She went for bone test today. She goes in Thursday for results.

Is the anything else we should be asking or doing? My Mom feels she's going to die.

I've been doing reading on this cancer. It just sounds so confusing. I wouldn't think microscopic cells were bad, but I guess it can travel through the bloodstream and go anywhere.

We don't know what stage she is.

Any help, advice is very much appreciated!!!!

Thank you!!

ChiSandy · May 2017

No offense, but what your mom should be doing is to make sure every doctor in her care team has expertise in and experience in treating breast cancer. Having used a general surgeon, alas, is water under the bridge; but she needs to ask questions about what is being recommended and why (and you might want to do so on her behalf or in addition to her own questions).

Meanwhile, can you post her diagnosis & treatments she had, is getting, and expects to get in your profile—at least to the extent it’s known? It’s nearly a month since her mastectomy—certainly her doctors should have informed her of her stage (tumor size and node status) long before now. Is a second opinion or switch to a different cancer center possible?

Being on Medicare myself, I sympathize with your frustration with the seeming illogic of which tests are covered and when. (For instance, two months before becoming Medicare-eligible, I had a bone density scan the day I started radiation, and it showed I already had osteopenia. So once I started my aromatase inhibitor a month thereafter, I scheduled bone treatments for every 6 months—first Zometa and then switched to Prolia. I have no idea how well they worked, nor how much bone loss the aromatase inhibitor caused—and we won’t know till Nov., because Medicare won’t pay for bone density scans any oftener than every 2 years).

Lexicoe · May 2017

ChiSandy is right--it's always better to see doctors who specialize in breast cancer, and it's something your mom should think about going forward. Especially if she has ILC, which is only 10-15% of breast cancer population and can behave differently from the most common type.

it's hard to say if this is the same without knowing more about your mom's path results, but I was told my nodes were "technically negative" although they did find "isolated tumor cells" in one node. Different doctor surgery have had different explanations for why that could be (including that the surgeon may have just accidentally dropped a few cells there during the biopsy) but all docs told me that research shows it's better to treat as if there was no node involvement. So that may make it harder to get PET scans approved too.

My Mom has ILC

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