Recently, I made it to five years post-surgery for stage IIIC colorectal cancer.
Technically, by NCI guidelines, I am not a five-year survivor until I reach the anniversary of the last day of my last treatment. For me, not until April.
But there is something about five years. It is beguiling. It makes you heave sighs. It makes you hold closer to the hope that you will make it. When you have had late-stage disease, even when you try to embrace hope, it can squirm out of your arms like a rambunctious puppy. My mother had a fatal recurrence of her colorectal cancer after 14 years remission. So we do not use the word “cured” in my family.
In my case, I sadly did not get the best practice chemotherapy for my kind of cancer. It was not available in my province (Nova Scotia) – an injustice that my community and I remedied through a crusade that went all the way to the Minister of Health. (My book The Cancer Olympics describes that battle). But there have been significant advances in cancer treatment in the five years since my diagnosis – advances in oral chemotherapy, immunotherapy, and genetic testing have altered the landscape for patients. Joyfully, these developments increase our treatment options and hence our prognoses; however, they each come with challenges which, increasingly, newly-diagnosed patients must plan for when facing their disease.
In the past five years, there has been an increase in the number of cancers treated using oral chemotherapy, as opposed to infusion chemotherapy delivered in hospital. Most Canadians are unaware that huge inequities exist across provinces with respect to access to these therapy advances. Many modern cancer drugs are gobsmackingly expensive. For example, Sutent, a drug for kidney cancer, weighs in at $100,000 a year. Some provinces cover the staggering costs of such crucial medications, others do not. The hold-out provinces adhere to the notion that only drugs administered in hospital can be covered. Sometimes, provincial services can hobble together a plan so that the cancer-stricken are not bankrupted by treatment costs; however, in an era of cutbacks, it is chancy to rely on the largesse of insurance companies or big pharma. Patients must be vigilant about drug funding options in their own case. We must also be vocal about unfair drug policy in our country. The coalition CanCertainty is committed to rectify this injustice by lobbying for a pan-Canadian approach to the funding of oral chemotherapy. Their website and striking video underscores how important this issue is for all of us.
Another huge advance in cancer treatment since 2010 has been the rise of immunotherapies. These treatments harvest cells from the tumour in order to develop vaccines which will excite the patient’s immune system to attack the cancer. Immunotherapies are now at the forefront of novel treatment trials and protocols. For many, such therapies will be attempted after first-line treatments have been explored. But the nature of these immunotherapy opportunities create decisions that cancer patients must make early in their treatment, before they know if they will require immunotherapy approaches. For example, many immunotherapy regimens require that live tumour tissue be used. Live tumour tissue is not the same as the paraffin-bound samples that are routinely stored after cancer surgery. Live tumour tissue requires unique storage, which patients must arrange. Private companies, such as the Philadelphia-based Store My Tumour, can assist. Today’s patients might need to take proactive actions to ensure access to immunotherapy options in the future. If I had to do it over, I might choose to pay for such storage.
Finally, one great advance since my diagnosis concerns the greater awareness of the role of genetic contributions to cancer, and the need for the biomarker status of the tumour to be identified early. For example, in colorectal cancer, some research suggested that the conventional treatment for stage II disease was not just inefficacious but actually harmful to patients with a particular tumour subtype. Consequently, several major cancer centres in the United States have moved toward universal screening for tumour status at the time of biopsy. Unfortunately, regarding the question whether to refer for genetic testing, I have often heard clinicians say that patients “don’t want to know” about the heritability factor of their disease, or they are “too overwhelmed” by treatments to consider a referral to medical genetics. Conversations about medical genetics are thus deferred until treatment is ending or concluded. Indeed, referral for medical genetics are not routine in many provinces, even for those in high-risk demographics (e.g., women with breast cancer whose mother had both ovarian and breast cancer). But because we are learning that genetic status can impact treatment outcome, patients must push for this discussion to happen sooner. We patients ourselves must initiate the dialogue. We do want to know the genetic factors underlying our disease, in order to protect our families and to maximize our own survival.
Five years is not such a long time. But how marvelous it has been for me – each day alive is shot through with luminosity. Even something as mundane as a television show can be greeted as a friend I very nearly missed (see my post on cancer and The Walking Dead). I felt great joy at being able to see the series finales of Breaking Bad and Mad Men, as I wondered during treatment if I would make it to see them. I am so happy to be able to partake in popular culture.
As culture grows and thrives, so too does medical research. Let us all hope that the great strides in oral chemotherapy, immunotherapy, and universal genetic screening will be like the beginning of a wonderful new TV series.
Let’s get out the popcorn. Let’s see what happens over the next five years.
Dr. Robin McGee (www.thecancerolympics.com, Twitter @TCOrobin), is a Registered Clinical Psychologist, mother, wife, educator and friend. Living in Nova Scotia, she has worked in health and education settings for over 25 years. Since entering remission, she has been very active in advocacy, mentorship, and fundraising on behalf of cancer patients. In particular, she has been involved in provincial, national, and international initiatives aimed at improving standards of cancer care. In 2015, she was awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage. Her book The Cancer Olympics is hailed by reviewers as “brilliant and powerful…a riveting read.” It is a 2015 International Book Award Finalist (Health/Cancer) and a Readers’ Favorite Award Finalist (Grief/Hardship). Proceeds of sales go to cancer support programs. The Cancer Olympics is McGee’s first – and hopefully her last – memoir about her cancer experiences.