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

I was diagnosed with lobular HR+ breast cancer in 2004 at age 60, stage 3A, 7 positive nodes. I was told it had likely been growing for 10 years and was missed on regular mammograms due to the shape it presents. I did a double mastectomy, 8 rounds off chemo, 40 radiation sessions, had silicone reconstruction, and began anastrazole. I took it for 17 years even though research has not been done past 10 years. My oncologist always believed it would return, and it a few bone spots were discovered last December on an xray taken ahead of a steroid shot for arthritis in a hip. I am on maintenance meds now and all spots have disappeared. It is very slow growing and I was told it was not a death sentence at all, just a chronic condition at this point.

I was diagnosed with invasive lobular carcinoma in both breasts in August of 2021. It was found from a scan done for chest pain in June of that year because of chest pain that turned out to be a heart attack. I survived that and then started on the breast cancer journey. After several biopsies, in October 2021 I had a bilateral mastectomy and sentinal lymph nodes removed on both sides. Pathology found ILC , Stage 2, no lymph involvement. All margins clear. Tumors from 2mm to 10. I was almost 69 years old and chose not to have any breast reconstruction, with the support of my wife. I was told that I was not a good candidate for radiation or chemo. I started letrozole 2.5 mg in December 2021. By May of 2022, I had developed carpel tunnel with locking thumbs in both hands, as well as total body pain and stiffness. I had been on bioidentical hormone replacement therapy for many years for depression issues that run in my family, before the cancer was found. So oncology suggested a break from the AIs. I am trying to schedule an appointment with oncology now. I have only seen her twice since the mastectomy, so I don't have a good idea of what will be next. But I really don't want to go back on AIs. I do everything with my hands. I am a mechanic by trade. I am a carpenter and a fixer of three dimensional stuff! I don't really have a quality of life without my hands.

I forgot to add that the cancer is er+, pr+, HER2-.

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

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. ♥️

Today I am actually challenged with a new, rare development. I am on Xgeva to keep my bones strong, and was diagnosed by X-ray for atypical femur fracture in both legs. Symptoms were getting painful to walk. An excellent Mayo surgeon put a titanium rod down the center of left femur 5 days ago. Recovery is usually 6 weeks, then they will do the right side. My goal is to be walking normally by fall, and the surgeon says I will have no trouble meeting my goal. I have no trouble talking about it, but am careful to be sensitive to who wants to hear any of it. After reading your stories, I find that it is a real relief to think of lobular cancer as a chronic condition. I call that realization a flash of the obvious. Thank you for sharing and suggesting this thread!

@windyshores I too am interested in hearing more about how various doctors are following ILC for future metastasis. Since I opted for the bi lateral mastectomy (my first Lobular was in situ in the left breast and the second time was invasive in my right breast) I get visual exams every 6 months to 9 months but wondering if an MRI might be a good idea in the near future? They say I'll feel it on my chest wall but it's very hard to determine because I have various pains and bumps and lumps it seems, mostly from my lymphedema. Curious about this and hope people will share.

@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.

Oh how I relate to the drying up! I even had a procedure called the Monalisa to bring moisture back to my vagina. It is a laser treatment. It was successful but only temporary. I suppose when you keep taking medicine to block the hormones it was inevitable. Thanks for sharing a bit of your story.

I come from a similar history
ILC 2013 lumpectomy Right

Turns out had in both breasts and by 2015 I had bil Mx and Hysterectomy (found unusual tumors in the ovaries). I declined any chemo or tamoxifens because studies did not demonstrate much improved longevity. It is debatable certainly but it was under 20%. 2nd opinion at Moffitt explained Lobular CA doesn’t visualize as easily as others, so I opted for the surgical option. I had my implants removed after 5 years. A plastic surgeon gave me a soft appearance - it helps this nearly 70 yo
Thanks for sharing