At 49 years old, Roberta Lombardi was giving herself a breast examination when she found a small hard lump. Over the course of 14 months, Roberta went from being diagnosed with triple -positive breast cancer to undergoing a double mastectomy, followed by a series of distressing side effects from chemotherapy. Roberta offered to tell us her story and explain how treatment impacted her physical, mental, and menstrual health. All important experiences that led her to starting Infinite Strength - a Non-Profit Organisation in the US, supporting underserved women by providing breast cancer financial aid.
What defines triple positive breast cancer is a woman’s breast cancer cells being high in HER2 (Human epidermal growth factor receptor 2), estrogen receptors and progesterone receptors. This means that when the hormones estrogen and progesterone come into contact with cancer cells, they fuel the growth and help the cancer to spread (1). HER2 on the other hand is a protein that naturally helps breast cells grow, and repair themselves. However, in around 20–30% of breast cancer tumors HER2 is overexpressed resulting in a more aggressive form of cancer (2). For Roberta, this meant her breast cancer was hormonally sensitive, impacting the choices she’s made in relation to her levels of estrogen. We asked Roberta to tell us more about the intricacies of her experience and how it’s shaped her approach to health.
I had been thinking about the conversations I’d heard in the infusion rooms of people discussing how they couldn’t afford the treatment. I was in a privileged position to be able to afford insurance and medical care. And even though it was awful what I went through, it's so much worse for so many other people.
Hello Roberta. It’s been wonderful to read about your project, Infinite Strength. As a woman who advocates for the wellbeing of females, in particular mothers, what has your experience of womanhood been like?
I pay attention to my body, I have done from a young age. My period started when I was 10 years old and I would have heavy bleeds lasting for around 7 days. Since then I’ve always felt in sync with my cycle. However, before my first child was born, I had over ten miscarriages. It transpired I had MTHFR (a hereditary gene mutation blocking the breakdown of folic acid (3)) which consequently affected the first term of pregnancy. I was put on prescription levels of folic acid and now I have three beautiful daughters. My eldest has just started university.
MTHFR is associated with an increased risk of breast cancer. How aware were you of your genetic history and being active in checking your breasts' health?
Breast Cancer runs in my mother’s side of the family. My maternal grandmother had it twice and my Aunt died of metastatic breast cancer (when cancer spreads to other parts of the body). This made me very attentive to doing monthly breast examinations and having an annual mammograms. Before I found the lump in my right breast I noticed my hair was starting to fall out and my skin had become very itchy. I went to a dermatologist and they suggested it was allergies but I knew it wasn’t that. I had multiple examinations and scans but all my tests came back clear.
It was only by checking for a lump myself that I went on to being diagnosed. For the sake of my girls, I decided to do genetic testing. Thankfully, nothing appeared to suggest they would be predisposed to breast cancer; I wasn’t BRCA positive. But overall, I had everything going against me because of the high levels of estrogen, being HER2 positive (though I didn’t know that until my diagnosis), and having MTHFR.
What route did you choose to take for treatment and how did the medication impact your menstrual cycle?
The tumour was in my right breast and the whole breast was covered in cancer cells. It had developed very quickly and there was a high risk of cancer spreading to my left breast. So
without questioning it, I had a double mastectomy. Because my HER2 receptors were so strong, I also chose chemotherapy. Prior to this I had been on an IUD contraception but upon being diagnosed I was told to take it out immediately. My period started back straight away and my cycles were consistent until I started chemotherapy treatment. It all changed again. I started menopause and my sex drive completely disappeared. No one tells you this will happen. Nor do you get told how the drugs you take will make you depressed, or the mental effect of having reconstruction surgery, or losing all your hair.
The impact on you mentally and emotionally adds up. I had scars from the mastectomy, my stomach was bloated, I had a facial rash from the drugs, and then l I lost all my hair. After finishing my course of chemotherapy, I was an absolute mess. I was drained, exhausted, I didn’t look good and I didn’t feel good about myself. I tried hormonal therapy to help suppress the estrogen in my body, because estrogen latches onto cancer cells and facilitates its growth. I was supposed to be on this medication for five to ten years but I didn’t make it three months! It gave me awful stomach issues, my bones felt like they were 100 yrs old, I would get up in the morning and struggle to be motivated, or happy. So against my oncologist recommendations, I stopped those drugs and after six months, I felt myself come out of the fog.
What do you do to keep looking after yourself?
I advocate for me and I’m doing as well as I could possibly hope for. I take Vitamin D, C, and Zinc. I have wheatgrass shots and eat as clean as possible. I’ve settled on a mainly plant based diet, and stay away from sugar because sugar loves cancer. Walking 5-6 miles a day helps with my mental and physical health. I also have physiotherapy every week since having my mastectomy. This provides specific exercises to help alleviate tightening of scar tissue around your breasts, giving you more mobility.
Since having chemotherapy, I developed vaginal atrophy and sex became painful. Nurses suggested coconut and yak oil, but that didn’t work. I couldn’t find anything discussing how to find a new level of intimacy with your partner. This is so important because cancer can leave you feeling self conscious. I was ashamed of my breasts and couldn’t see anything sexy about them, and as my gynecologist puts it, I now have the vulva of an 80 year old! I’ve settled on using a small amount of vaginal estrogen cream which doesn’t get absorbed in the bloodstream and helps alleviate pain during sex. This has been a personal choice that I’ve made for myself.
Having experienced these mental side effects of chemotherapy? How have you managed your sense of well being?
When you’re through with treatment it takes a while to stop dwelling on it. You can’t believe that it’s over. You question every little pain you have because you’re waiting for the other shoe to drop. PTSD after cancer, any kind of cancer, is a real thing, but it’s not treated that way. I still have anxiety in me, but I’ve learnt that I can’t control everything. All you can do is be positive.
Starting Infinite Strength was what helped me to make the turn, because I had something else to focus on; improving someone else’s life. I had been thinking about the conversations I’d heard in the infusion rooms of people discussing how they couldn’t afford the treatment. I was in a privileged position to be able to afford insurance and medical care. And even though it was awful what I went through, it's so much worse for so many other people. It made sense that I would help women who are underserved.
How does breast cancer and the treatment around it reflect the inequalities and gaps in our societies?
It’s a fact that Black women are given less time in the office with the doctor and that triple negative breast cancer is much more common in women of colour (4). Yet this type of cancer doesn’t have as many treatments available. So it comes down to the colour of your skin and your income level. Sometimes, here in the US, the only way women will find out they have breast cancer is from the mammogram vans that go through areas of the city offering free scans. These women can’t afford to get sick, they can’t afford to get insurance or go to the doctors. The health disparities are huge. So what we do with Infinite Strength is try to support the financial cost and wellbeing of these underserved women.
Alongside financial aid, we do “make a wish” donations. There’s also a magazine that’s published out of California called Wildfire and all the articles in every issue are written by breast cancer survivors. I buy copies and send them to hospitals for women in the infusion room. Because the community it provides is priceless, it’s the most important lifeline and when you find it online, you see how it’s so strong. If you need anything, straight away there are people there to help. It’s incredible. Because unless you have had cancer, you just won’t be able to relate to what's going on in someone else's head or body.
Disclaimer: this is a personal experience and should not be taken in any case, as medical recommendations.
References
1. Mitri Z, Constantine T, O'Regan R. The HER2 Receptor in Breast Cancer: Pathophysiology, Clinical Use, and New Advances in Therapy. Chemother Res Pract. 2012.
2. Hammond MEH. Hormone receptors in breast cancer: Clinical utility and guideline recommendations to improve test accuracy, Jan. 2020. Article consulted on Oct 16th 2020.
3. He L, Shen Y. MTHFR C677T polymorphism and breast, ovarian cancer risk: a meta-analysis of 19,260 patients and 26,364 controls. Onco Targets Ther. Jan 6th 2017, 10, pages 227 to 238.
4. Lia C. Scott, Lee R. Mobley, Tzy-Mey Kuo, Dova Il’yasova, Update on triple-negative breast cancer disparities for the united States: A population-based study from the United States Cancer Statistics database, 2019, Cancer Volume 125, Issue 19; Pages 3412 to 3417
