HAVE you ever heard of LCIS? Neither had I until last July when an oncology nurse called to give me the results of my breast lumpectomy.
“It’s not cancer, it’s something called LCIS, a marker for breast cancer,’ she said softly, before going on to explain that having LCIS, an acronym for Lobular Carcinoma in Situ, means that I have an increased chance of getting invasive breast cancer in either breast in the future.
I didn’t know where to put this information in my head. I had imagined this phone conversation playing out over and over since my lumpectomy a week earlier but these scenarios only featured the word ’cancer’; or the word I was hoping to hear,’benign’; LCIS was nowhere on my radar.
So, while I wasn’t being told I had cancer, I was being told I had an increased risk of getting it in the future. It felt like I was being put on the bench in the cancer leagues and there was a chance my number could be called up to bat at any time.
Current research points to this risk being 30-40% for women with LCIS, while it remains at 12.5% for a woman without a diagnosis of LCIS. This, I felt, was a sizeable difference, and one that needed greater investigation on my part so that I could make the right decisions when it came to treatment.
Lobular Carcinoma in Situ takes place in the breast lobules; the glands that make breast milk at the end of breast ducts. When abnormal cells begin to grow inside some of these lobules, it’s called LCIS. According to renowned breast cancer specialist Dr Susan Love’s research foundation: “Under the microscope, LCIS appears as a bunch of small, round cells stuffing the lobules, which normally don’t contain any cells.”
While all of this seems to be agreed upon by the medical community worldwide, whether it is or not cancer appears to be a subject of great confusion. One source will call it pre-cancer or Stage 0 cancer while another will say it’s nothing like cancer.
Actress Rita Wilson, 58, wife of Tom Hanks, was diagnosed with LCIS a number of years before being diagnosed with invasive cancer, but she credits her awareness of having LCIS and the yearly mammograms and breast MRIs she had because of it as one of the reasons she survived. In 2015 she underwent a double mastectomy with reconstructive surgery and returned to work on Broadway a month later.
LCIS is hard to diagnose as it generally doesn’t present any symptoms. I was lucky in that the five inch ‘complex sclerosing lesion with florid epithelial hyperplasia, columnar cell change, columnar cell hyperplasia, apocrine metaplasia and cysts’, or as I liked to call it, my weird lump, removed from my breast to be tested for cancer, revealed LCIS lurking in the shadows of my breast lobules.
This weird lump had been with me for eight years. During this time it had been prodded, poked at and biopsied numerous times by GPs and oncologists, always thankfully returning to me with the words ’benign’ and ’cysts’.
I was consistently told to watch for any changes in my breasts and to check them regularly, which I did.
So when, last June, I found that my weird lump had grown in size and was pressing through my skin in a way that was painful, I went to my GP who referred me to an oncologist and before the week was up I had made the first of many visits to the Regional Cancer Centre at Cork University Hospital.
Every person I met at this time reassured me that the chances of it being cancer were very slim, and as I had had many test results proving ‘benign’ in the past, I wasn’ t too worried at this stage. The oncologist I dealt with was extremely reassuring, she answered all my questions, and was very upfront with me.
It started with ‘Your breasts have a very complicated architecture’. This made me quite proud of my breasts; I have the mammary equivalent of the Sagrada Familia, I thought, delighted. An ultrasound and mammogram later, it became ‘One of our doctors is quite worried about you so we need more tests’. And then finally: ‘On the cancer probability scale of one-to-five you’re currently at three, but we’re going to need to take the lump out to know for sure.’ Three? Out of five? I was floored. Deep breaths. Deep breaths. Like the myotonic goat, otherwise known as the fainting goat, I seize up when I feel panic so I went straight home to bed and slept for 12 hours.
On July 17 last year, I underwent a right breast wire guided wide local excision, otherwise known as a lumpectomy, to remove my weird lump. It was a day surgery so I was sent home high on morphine later that day.
As advised, I stayed at my parents’ house for a night, just in case any complications arose. However, the only complication that did arise was the fact anaesthesia makes me extremely talkative once I wake up so my poor parents were subjected to a six hour monologue on everything from the future of bees to the lure of rastafarianism!
The following week a breast care nurse called me with the results and that was when I first heard the term LCIS. When I returned to the clinic a week later to meet the oncologist, two treatment plans were offered. I could take the medication Tamoxifen, a chemopreventative measure which has been proven to prevent women with LCIS from developing invasive breast cancer. However, it also hugely increases the risk of uterine cancer. Therefore I decided to stick with the second option; regular check-ups and annual breast mammograms or MRIs. These, may I add, are extremely awkward tests where one’s breasts are siphoned into cup-like devices while you lay facedown on a padded scanning table for 20 to 30 minutes before you attempt clumsily to get up from the cold metal table with your gown and your dignity still intact.
In Ireland, one in nine women will develop breast cancer in the course of their lifetime. According to Breast Cancer Ireland, and 2,800 new cases of breast cancer are diagnosed each year, only 5-10% of these cases are hereditary.
Although survival from breast cancer is high, with an 82% survival rate after five years, the National Cancer Registry Ireland reveals that, after lung cancer, it is the second most common cause of cancer death in women.
With these statistics in mind, I despair when I hear of women who don’t regularly check their breasts.
My right breast has a five inch scar now, shaped like a frown. I often look at it in wonder and gratitude as this scar signifies something I’m proud of; that I took responsibility for my breasts and their care. I learnt from articles and statistics and stories about breast cancer, and applied these to my life by regularly checking my breasts and contacting my GP when there were any worrying changes.
Because of this, I now have the type of preventative care I would never have had otherwise and if I’m ever called up to bat at the cancer leagues, it will be an early game and I’ll certainly have a better chance of winning.
Irish Cancer Society’s Freephone Cancer Nurseline on 1 800 200 700 (Monday - Friday 9am-5pm).