Breast Cancer in Young Women
Female breast cancer is most frequently diagnosed among women aged 55 – 74. The average age that women are diagnosed with breast cancer is 63.1 But, women under 40 account for about 12,150 cases in the United States each year.2 Quite commonly, these younger women will have a family history of the disease or a genetic mutation that pre-disposes them such as BRCA1 or BRCA2.3-4 BRCA 1 or 2 are the most common mutations, but there are more. Younger women tend to have higher grade cancers and women under 35 years old were more often diagnosed with hormone-receptor-negative breast cancer which can be more aggressive and challenging to treat compared with women aged 35-50 years.5 Triple-negative breast cancer (TNBC) is one of the most aggressive cancers and is more likely to be diagnosed in people younger than age 50.6
Under 40 and living with metastatic breast cancer
Libby Porter is a young woman, aged 36, from Alberta in Canada who posts regularly about her stage 4 breast cancer on Twitter, under @LibbyMBC, about the struggle she has to get appropriate treatment and access to the latest drugs. She’s the mom of a three-year-old, Violet, the spitting image of her. Her mom was diagnosed with breast cancer, aged 48, and she has been cancer-free for 17 years. Many of Libby’s posts are about the fears of being unable to watch her Violet grow up, and the hopes she has for her daughter. At other times she rails against the Canadian health system and has even posted a GoFundMe page to explore further treatment and off-label drugs.
Libby does not hold back about her feelings, her mental struggle, and her distress that drug after drug have failed to arrest her cancer. She’s also pretty direct on Twitter where she has posted around 5000 Tweets in the past six months including:
- “Anyone know how to stop being scared of dying? Anyone know how to have hope when you have had the hope knocked out of you so many times? Anyone know what dying is like?”
- “Somebody told me today that when they think their life is bad, they compare it to mine. I know what they said came from a good place, but WTF.”
Libby agreed to talk more about her situation, and how this disease has impacted her daily life.
What was your diagnosis?
I was first diagnosed with stage 3a breast cancer in April 2019, when my first (now only) daughter was 7 months old. At the time of my diagnosis, I was 34-years-old and I had probably had the breast lump for several years prior. I found out by myself, on what I thought would just be a routine ultrasound of what I assumed was a benign breast lump. The ultrasound was followed the next day by a biopsy.
Less than five months after the completion of my early-stage treatment I found out my breast cancer had metastasized to a single bone, and I now had metastatic breast cancer.
What treatment have you had to date, and how effective has it been?
After being diagnosed with early-stage breast cancer, which had the markers ER+ PR+ HER2-, I was given all the traditional treatments for my type of breast cancer. Since my cancer was present in at least one node when I had my initial ultrasound there was no debate about chemotherapy. Due to the size of my breast lump, I was told I would also need a full mastectomy. I started my treatment with eight rounds of dose-dense ACT chemo, I then had a mastectomy and 17 lymph nodes removed. I had radiation on my chest, chest wall, and armpit. After this treatment, I was put on Lupron to shut down estrogen production in my ovaries and Letrozole to further stop estrogen production. My least favorite part of the treatment was these hormone inhibitors because they shut down any hope I would have additional children. As well, the estrogen inhibitors made me a sweaty mess. I could barely walk out in public without a series of hot flashes coming on, and I was often soaked upon arriving at the cash register (wearing masks did not help my hot flashes).
When I found out my cancer had metastasized, I immediately started Ibrance and Falsodex. Since I only had a single met, I also received SBRT radiation to my metastasis. I was very hopeful because I know people who have had wonderful results this way and remained cancer-free for years. Unfortunately, this was not the case for me and on each subsequent scan we saw more bone metastasis, I had a lot of progression in my spine, as well as my ribs and iliac bone. Currently, my most painful metastasis is in one of my left ribs. It shows up very brightly on my scans and recently we think it may have broken.
Do you have a support group of family and/or friends?
I found family and friends were most supportive during my early-stage diagnosis. People understood this diagnosis more, and everyone wanted to help me out while I had my treatment and got better. A friend helped me set up a calendar and I had help with meals as well as dog walking and child care. I became very depressed after my stage 3 diagnosis and had to spend time in the psychiatric ward. I lost many friends who did not think I was being "positive enough" about my serious cancer diagnosis, body changes, and loss of fertility.
Since getting diagnosed with stage 4, most of my family is burned out, and it is also harder for them to visit because of Covid. I think people are also unsure about how to support me because they do not have a "road map" for terminal cancer.
I have however found a great group of fellow cancer patients to support me online with the mental side of things. Though most live far away and cannot physically help me they are extremely supportive and understanding of the mental aspects of dealing with terminal breast cancer.
You’re big on Twitter, any other social media? Which do you find the most effective?
I think different social media is helpful for different things. Twitter can help you meet other people who are part of the advocacy community, it is more impersonal and can be a good tool to spread the word about stage 4 breast cancer. Facebook is good for the groups where you can get support and also forming more personal relationships with other cancer patients. TikTok (shudder) is a good platform to create small, interesting videos and get the word out to the younger generation about being diagnosed with breast cancer before the "typical" age. I do not use Instagram very much, but I also know people who favor this as a platform to share their story. I don’t regularly blog, I share most of my writing on Twitter and my own Facebook updates group. Occasionally I am asked to do a piece for cancer charities.
You talk a lot about the hopelessness of your plight and explain your reasoning. What sustains you day-to-day given this situation?
Metastatic breast cancer is incurable, and I think it would be doing myself a disservice to completely disregard the terminal nature of the diagnosis. I often feel my situation is completely hopeless and I am very frustrated by it as I was a very driven individual and had a 10-year plan and a lot of goals. I have found a place somewhere between hope, denial, and realism, where I spend a lot of my time. I find hope in the clinical trials, and if treatment were to stretch my survival out long enough, there is a chance I could find a fantastic clinical trial.
I also remember the words another cancer patient said to me; he told me that some AIDs patients, diagnosed before today’s treatments, had managed to somehow string enough treatments together to survive until something better came along. That gave me a new perspective and hope that I could experience something similar. I also use distraction as a tool, any activity that requires a great amount of concentration does not allow you to think about cancer, for instance, I make bath bombs, tutor high school science, write, and practice photography. All this allows me a temporary reprieve from my existential thoughts.
More is needed for young women with metastatic breast cancer
Libby, and young women and men in her situation, need a better deal. Better care, more research, and better support. They need to be sent for screening when they report lumps and when they have a family history since they are more likely to have aggressive cancers that could be less responsive to traditional treatments.
More metastatic breast cancer awareness is needed
Sixty years ago, my young mother died of this disease. As is the case today, there weren’t enough effective treatments to save her. And like today, young women are the most likely to die because the treatments are failing them. In fact, all stage 4 patients are regarded as incurable, living from treatment to treatment until each one fails. How far have we come? How much pink hoopla and how many fun runs are enough, and how much awareness do we need?
I think what we need is the kind of funding for the research effort that the COVID-19 vaccine generated, to be applied to cancer research for more effective treatments.
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