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

Hi Windyshores! For us “lobsters,” there’s a lot of discussion that centers around follow up as we move forward in our journey because lobular can be “sneaky.”

My cancer team and I discussed alternating my annual mammogram with having a breast MRI but I decided to forgo the MRI for now because since I’ve been diagnosed, I’ve had two false positives.

I also have bloodwork every six months along with a breast exam and follow up with my breast surgeon every six months.

I’m assuming that schedule will change to yearly checkups I believe when I hit the five year mark. ♥️

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

@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?

@jkh Sorry about your struggles. I can relate to much of your post. I 'thought' I'd beat the cancer struggle when I was diagnosed with only Stage 1 cancer. It was a good sign but I too developed lymphedema and had a bout with cellulitis and went into sepsis about 3 years ago. A very scary and unexpected situation. I struggle daily with the lymphedema and have joined the Lymphedema Action Network where they have multiple video presentations and informative emails. I highly recommend signing up for that. I opted not to use the AI drugs - they all had severe side effects for me but I am quite a bit older than you and was diagnosed about 5 years later in life than you. I guess cancer always finds a way of reminding you it's there no matter what you do so we have to try to make peace with that (not easy). Interestingly, I have many of the 'side effects' of the AI's now anyway due to aging....in fact my blood work shows I have little, if any estrogen, no progesterone (guess I never had much of that to being with) and little testosterone....so no hormones to feed the cancer. However, not having those hormones means - weight gain, depression, aching joints and for me a complete drying of my body (eyes, hair, mouth and....unfortunately my vagina - all of which presents challenges). But, I'm here and so far no return of the cancer so I'm thankful for that. Hugs to you. It sounds like a lot to cope with day to day.

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!

My tumor was mixed ductal and lobular, and because the tissue showed loss of e-cadherin throughout, I suspect it is mostly lobular. I know that "mixed" is different from pure lobular but would still be interested in reading this thread. I am especially concerned about how we can tell there has been metastasis. I am 7 years out from diagnosis.

How are you today? Thinking of you. Do you find this hard to talk about?

My tumor was mixed ductal and lobular, and because the tissue showed loss of e-cadherin throughout, I suspect it is mostly lobular. I know that "mixed" is different from pure lobular but would still be interested in reading this thread. I am especially concerned about how we can tell there has been metastasis. I am 7 years out from diagnosis.

I was diagnosed with stage 3 lobular cancer in December 2013. Had a single mastectomy, chemo and radiation. Then took Letrozole until cancer metastasized to the bone in September 2018. I have been on the chemo, Capecitabine since then. I am grateful for my competent and caring Mayo team, my supportive husband, family and friends. It has been a challenging journey, and I have gained so much respect and love for all who are and have taken it. I am 75.