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The Voice of People With Breast Cancer


Our Voices Blog

Dense Breast Tissue and Lobular Cancer - Doubly Hard to Diagnose

By Karin

I had mild tingling breast pain for about five years. I am not a "run to the doctor" kind of person as I never wanted to be a burden on the health care system. I have always been sporty and active and was motivated to maintain my outdoorsy lifestyle. I ate healthy foods, drank alcohol rarely, and maintained a healthy weight. Even my GP congratulated me on doing all the right things. The pain was getting worse; however, my doctor assured me that both a mammogram and an ultrasound confirmed I did not have cancer. I was speechless because I knew something was wrong. I finally asked my GP’s admin to request a referral to a surgeon who could remove whatever was causing my breast pain. I was referred for a "comfort excision".

It took over two months to see the surgeon. By then, a 2 cm lump was palpable, and my nipple was inverted. I received a biopsy the next day and invasive lobular cancer (ILC) was confirmed the following week. I was not surprised that the biopsy showed I had breast cancer. I had been told from my 20s that I had lumpy breasts, where it would be difficult to tell the difference between a benign lump and a malignant lump.

I requested a mastectomy immediately after my diagnosis. After what seemed like endless imaging - MRI, mammogram, 2 ultrasounds, MRI-guided biopsy for another lump - I had a mastectomy 9 weeks later, which showed I had a continuous 71x58x33 mm lobular cancer tumour in my very small A-cup breast. After oncotype testing showed a low recurrence score, I started the aromatase inhibitor, Anastrazole, then had radiation.

I waited two months for my first surgical appointment because my GP called the referral a "comfort excision". I waited another two months for surgery; I wasn’t sure why, as this hospital had excellent data on target timelines for breast cancer surgery. I wanted an earlier surgery date, before my husband, who was scheduled for hip surgery. I saw the surgeon once, and had five short telephone consults, which were unsatisfactory. I eventually printed and relied on a 32-page PDF from Sunnybrook Hospital to understand what to expect. The imaging department at this hospital (not a regional cancer centre) was chaos. Every piece of information between the surgeon and diagnostic imaging team flowed by telephone through the surgeon's admin, while every appointment was booked for one process at a time. Once there, they wanted a different scan, and expected me to wait for 3 hours while they tried to fit me in. I was repeatedly called back for something else. All three doctors (surgeon, radiation oncologist, medical oncologist) consistently gave me a "one-size-fits-all" description of what to expect, including needing chemotherapy and a 12-month timeline, which may have been correct for ductal cancer but did not apply to lobular cancer.

Lobular cancer has been a steep learning curve for me. I was eventually listening to presentations at the 2023 Cleveland Breast Cancer Summit focused on lobular breast cancer, the International ILC Symposium, and others. About two weeks before my oncotype test score came in, I realized the five words in my diagnosis four months earlier "invasive lobular carcinoma classic variant" meant I would likely not undergo chemotherapy. How much better my experience would have been if a medical oncologist with knowledge of ILC had spoken with me after my biopsy. I would have known the potential treatment outcomes more accurately for ILC, including better odds of not needing chemo. That would have averted four months of stress for myself and the people who care for me.

When the radiation oncologist called, I asked him to explain how radiation could precisely target lobular cancer that grew in a single cell line without destroying all surrounding cells. He became frustrated and asked if I wanted a second opinion. I thought about it overnight and the next day asked for a referral to Princess Margaret. That experience was fantastic - four people who spent one hour with me, each of whom had read my file, and had knowledge of lobular cancer, and the various recent conferences focused on lobular cancer. The most important piece of information I received from them was that "radiation damages cancer cells and healthy cells, but healthy cells are able to repair themselves". The waiting rooms were relaxing, which helped reduce stress. Best of all was the vast array of online resources, everything from sexual health to patient information and videos on what to expect with radiation.

It's difficult waking up every morning feeling there is a metal clamp around my left side, plus the congested feeling in my armpit due to sentinel node surgery. To most people, I seem to have recovered quickly, so I am not noticing much difference socially; I am progressing well to regaining my previous level of physical activity. I exercise and flex my hands and arms before I get out of bed. Once out of bed, I continue exercises that move my arms as shown in the Canadian Cancer Society booklet for breast surgery. I avoid prolonged sitting, drink lots of water, and go for walks. I also get lymphatic drainage massage every two weeks or so, physio for scar mobilization, and range of motion treatment for my arm that had sentinel nodes removed. While some may say sexual health is not important for those in their 60s, my husband and I are happy to have resumed our previous good sexual relationship.

I still feel angry about my treatment. How my concerns about breast pain were dismissed; why I was not referred to a regional cancer centre, or a specialised breast centre. Somewhere where staff may have had more knowledge of dense breast tissue combined with a lobular cancer diagnosis. I would like someone to speak to me in depth about my specific overall survival prognosis but am reluctant to ask given my previous experience with "one-size-fits-all" comments, but it’s important to advocate for yourself. Know your breasts. Mine tried to kill me. Know your breast density; if it is C or D, learn about what that means and what to do about it. Lobular breast cancer doesn’t present as a lump. If something doesn't feel right, pursue it.