Carolyn was invited to submit her story (below) to the federal government health committee’s study on women’s health. As well, Carolyn just appeared on CBC Radio White Coat, Black Art and spoke so eloquently about her breast cancer experience. She has been through so much and she does not want any one else to have to go through what she went through. Carolyn, huge thanks to you for your tireless dedication to advocating for better breast screening. Please take a moment to read.
My name is Carolyn Holland, and I was diagnosed with Stage IIB synchronous bilateral breast cancer at age 43. I found a lump in each breast myself in the shower one night in 2021—I had never been told about mammography in the 40s by my family doctor and self-exam was never suggested or encouraged. To add insult to injury, I had to wait more than three months for a mammogram and ultrasound following my discovery of the two lumps. After that, however, things moved quickly. Within the span of the subsequent month, I was given additional imaging, underwent multiple biopsies, and received the diagnosis. Although I knew based on my reports it wasn’t good, I still wasn’t prepared to actually hear the words from my breast surgeon.
A month later, I had my first chemotherapy session, five days before Christmas. I underwent seven more rounds of chemo. For rounds 5 and 6, I was given Paclitaxel but I had severe allergic reactions both times and so my oncologist switched me to Taxotere. I now have neuropathy and permanent chemotherapy-induced alopecia. I am also at risk of a life-threatening allergic reaction if I am exposed to the same solvents that made Paclitaxel a problem for me. Chemo also induced premature menopause, and I will always live with long-term side effects, including heart problems, cognitive impairment, and fatigue.
Following chemo, I had a bilateral mastectomy and lymph node biopsy. The biopsy found three malignant nodes, prompting my care team to recommend an axillary lymph node dissection, which I subsequently had. I lost range-of-motion and strength in both arms and have lost sensation in much of my left arm. I now suffer from post-mastectomy pain syndrome and stage 1 lymphedema. I go to physiotherapy and get massage therapy for both, and I currently wear a compression sleeve and glove but neither the loss of sensation nor the lymphedema will ever go away and the latter is likely to worsen over time.
I also went through 15 radiotherapy sessions, which caused discomfort, burning, and exhaustion. Now I am on Tamoxifen and will be for five years, at which point my oncologist will re-evaluate whether to keep me on it for more time or whether to switch to an aromatase inhibitor for an additional five to seven years. Either way, I will be on endocrine therapy for between 7 and 12 years. Endocrine therapy carries a number of side-effects with it, including menopause-like symptoms, weight gain, nausea, and fatigue as well as some more serious ones like blot clots, deep-vein thrombosis, and endometrial cancer.
I missed almost a year of work for treatment and then needed an additional eight months to recover from treatment and be able to return to work. I exhausted all my sick leave and ended up on Long-term Disability. I had to dip into my savings to cover costs when the 70% of my salary on LTD didn’t stretch far enough. My late diagnosis and extensive treatment caused me financial hardship and has pushed my job and career in a direction that it hadn’t been going before my diagnosis. I suffer from cognitive impairments that make doing my job harder than before and I am perpetually fatigued. The lymphedema and numbness in my left arm make extended periods of typing and computer work uncomfortable.
I am a single mother to one son. He was 13 at the time I was diagnosed. He suffered the trauma of wondering if his mom was going to die and then the trauma of seeing me sick, frail, in pain, sad, scared, and compromised. I couldn’t always care for him the way I could prior to my diagnosis. Because my cancer was only caught at such a late stage, I am at high risk of recurrence and/or metastatic disease so I worry that I won’t live long enough to see my son get married, have kids of his own, succeed in life, and so on. I also worry what losing a parent prematurely would do to his long-term trajectory in life.
I had just started a long-distance relationship about a year-and-a-half prior to my diagnosis. My boyfriend was beyond supportive and stayed with me as much as he could be to care for me and help with my son and all the business of living that is so hard to do through treatment. He missed a lot of work as well, opting to take leave without pay for a couple of months while I underwent the worst of the chemo and my mastectomy. This caused him financial hardship as well and he suffered from the emotional toll of worrying if he was going to lose me, and by extension, lose my son whom he came to really care for. We are still together now and making plans for the future, but we both live with the uncertainty of what that future will be.
As mentioned, I am at a higher risk of recurrence or metastatic disease since my cancer was advanced-stage. Had it been caught earlier at stage 0 or stage I, my prognosis would be better and the treatment I underwent and the side effects I now suffer would all have been less severe. My surgeon and oncologist both have expressed that had it been caught before the tumour grew to the size it was and before it had spread to my lymph nodes, I would likely have been given lumpectomies and radiation. The effects of these treatments, though not insignificant, are far less damaging than chemo, bilateral mastectomy, and ALND. I continue to see a therapist to help with the trauma I have been through and to be able to cope with the stress, anxiety, and fear of recurrence and death. I am still young and want to live a full life, enjoy retirement, see my son grow into an adult. My late-stage diagnosis has made all of that less certain now and it’s a bitter pill to swallow.
Which of course leads me to my disbelief of how the chance to detect my cancer early was effectively denied to me by outdated guidelines based on flawed methodology and upheld by an unqualified, self-serving, and misogynistic task force.
The more I have learned, the more outraged I have become. The high numbers of women diagnosed in their forties and presenting with advanced-stage cancers in their fifties are shocking yet even with that information, supposedly medically-competent people advise against screening. Knowing that the study on which the guidelines were based has been widely panned as corrupted and that current evidence shows that the benefits of screening overwhelmingly outweigh the risks, I simply cannot imagine why women in their 40s continue to be denied screening. If there were any other potentially fatal disease that we knew nearly 20% or more of people afflicted by it fell into an easy-to-define group and we simply chose not to screen them for questionable and now proven false reasons, would that make sense?
Claims that screening in women in their forties causes anxiety are dubious at best, deadly as worst. To suggest that at 40 years-old, women can’t handle the “stress” and of a recall (or even a biopsy) is nonsense. These are the same women who have been being screened for cervical cancer for two decades or more but no one feels are too fragile to hear those results or go for further testing if necessary. These are the same women who take a test to learn that they are pregnant but may subsequently miscarry or deliver a stillborn baby. As someone with personal experience, I can assure you that a positive result that shows that you have an aggressive, locally-advanced cancer that could have been caught three years earlier causes far more anxiety than finding out that you are actually fine after enduring a few medical procedures.
Were you aware too that by the time you find a lump in your breast, your cancer is already advanced? I beat myself up at one point that I hadn’t been more diligent about doing self-exams. But why would I have thought to? The guidelines recommend against them and family doctors stopped doing them many years ago. Besides, I had been told over and over again by medical professionals and organizations that women don’t get really breast cancer in their forties or younger unless they are unfortunate enough to have a family history or the BRCA1 or BRCA2 gene.
I had neither what was considered to be a family history nor a genetic mutation, yet there I was with two different types of breast cancers.
Interestingly, I also learned that only 15% of diagnosed patients actually have a family history. While there is no question that it is critical that those women get earlier screening, the remaining 85% of all diagnosed patients younger than fifty weren’t afforded that opportunity. If 85% of all people afflicted with a disease didn’t actually fall in to a group that we felt was a strong indicator of them getting that disease, might we not think to re-examine the criteria? Besides which, relying on family history as a factor to offer early screening inadvertently discriminates against women whose family history or ancestry is unknown.
On the topic of genetics, ancestry, and discrimination, I was also extremely saddened but not surprised to learn that the current screening guidelines disproportionately affect Black, Asian, Hispanic, and Indigenous women, who are far more likely to present with very aggressive, advanced cancers in their forties than are Caucasian women. What does this say about how we value these women? Do they not have the right to timely care so that they can live their full lives? Racism in medicine is certainly there to see without looking very hard, but again, that a group of purported medical professionals would knowingly deny potentially life-saving diagnostic services to members of equity-deserving groups is simply unconscionable.
I won’t belabour the point that early screening—as well as supplemental screening for dense breasts, annual screening for all women, and continued access to screening after age 74—is well overdue for the women of Canada, but I will simply say that I truly wish I had known about the possibility of getting breast cancer in my forties. I wish too that my doctor had had a discussion with me at 40 and afforded me the opportunity to make an informed decision about screening for myself. Lastly, I wish that the policy-makers listened to data rather than specious anecdotes and forty-year-old studies. I am hopeful that the tide is turning and people in the position to make positive changes to the status quo choose to do so to improve and save the lives of so many women.
To this end, and in closing, I would strongly recommend the following measures be seriously considered and not be allowed to be dismissed by an unaccountable Task Force, made up of members more concerned with their personal interests and agendas than with the health and safety of the Canadian people.
• The self-referred screening age needs to be lowered to 40 uniformly across the country;
• Additional screening for dense breasts needs to become the standard of care;
• Women over 74 should continue to be included in screening programs;
• Frequency of screening needs to be reconsidered—biennially or triennially fails to catch interval cancers;
• The current Task Force needs reform or disbanding. For breast screening, a credible and accountable panel that includes breast cancer specialists should be created with its objective being to produce new guidelines based on current evidence;
• The corrupted CNBSS must be excluded from review for once and for all and current evidence (post-2016) should be the standard used on which to base the guidelines.
Thank you for your time and attention.