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Lobular Breast Cancer: Let's share and support each other

Breast Cancer | Last Active: Mar 10 10:12pm | Replies (344)

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@colleenyoung

@mjay, great idea to bring women with lobular breast cancer together. @jackiestack and @ssalget, can you share more about your diagnoses?

I think @claudiamaria @ja5747 @marybe and @bowhunt1969 @cindylb @kszilvia @varalax @rarelybees2889 @nycoceans @lisman1408 @elsie37 @nobody may also want to join in.

What's you lobular breast cancer diagnosis? How are you today?

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Replies to "@mjay, great idea to bring women with lobular breast cancer together. @jackiestack and @ssalget, can you..."

I was diagnosed with triple positive ILC breast cancer in December 2018 at the age of 60 through an annual mammogram.

I chose to have a lumpectomy with radiation (clear margins and sentinel lymph node biopsy which was negative) and had four rounds of A/C chemo as well as Taxol and a full year of Herceptin and Perjeta.

I’ve been on Arimidex for over 3 years and am doing very well.

I’ll continue with my annual mammograms and have blood work every six months. ♥️

I was diagnosed with LCIS at age 49, took tamoxifen for 5 years. During that time I developed external polyps on my uterus. I had a complete hysterectomy after 3 1/2 years of tamoxifen and then went into full blown menopause. The lobular breast cancer was discovered 9 years after I stopped taking tamoxifen, at age 63 through a yearly mammogram. It was discovered in the same (left breast) as the LCIS was discovered. I had a lumpectomy and 3 lymph nodes removed. The site where the lymph nodes were removed became infected. Not sure that it was healed well enough to start the radiation as I have had swelling and problems with lymphedema since. I have to look back in my records to be exact on the rest of my treatment. I wonder why I have trouble remembering the details but I suspect just due to the trauma of a cancer diagnosis. The cancer was invasive, size? 1.5-2mm? Oncotype score was, what they called, the grey area. It was left up to me as to have chemo or not. I choose no after I asked what the studies for someone who had lobular breast ca said. There was only one study that the Dr. Was aware of and it did not show any improvement in life expectancy. I started on anastrozole and after 2 years of lots of joint pain I went on exemestane. I still have what I call flare ups of joint pain, exhaustion and mild depression. I have a regular Yoga practice walk 3-4 miles regularly, eat a vegetarian diet and struggle mightily to lose any weight. I put on about 10-15 pounds after the cancer diagnosis and haven’t taken it off yet. But there is always a new day and I am very thankful for that!

After about 2 years of lumpectomies had an MRI that helped inform the decision to have bilateral mastectomy which was ILC stage 1
7 tumors on R
9 tumors on L (invasive )
10 lymph’s

I am doing well but for esophagitis with erosion.
Walk often & meditation too
Thanks

Hi! Just recently diagnosed with ILC - just starting journey-in 2 weeks I meet with a surgeon at Dana Farber but have since I've ready ILC is "sneaky" I'm very anxious - I'm 57 yrs - E+,P-, HER-
and 1.6cm - do most breast surgeons treat ILC - seems uncommon and my surgeon is so very young. Thanks for any thoughtsxoxo