As a 15-year breast cancer survivor, I remind myself daily of my good fortune and blessings.
Of course, I feel fortunate to be a long-term survivor, especially when I consider that my cancer initially recurred nine months after treatment. I made it through chemotherapy and radiation without any serious problems, despite needing a transfusion and drugs to stimulate my bone marrow when my blood counts were low. I emerged on the other side of treatment and have remained cancer free. I am also thankful that I was given the opportunity to lower my risk for further cancer through genetic counseling, testing, and interventions.
Now, at age 48, I am in the best physical and mental shape of my life. I feel great. I am healthy, fit, and I have a libido. But I didn’t always feel that way. And I recognize that not everyone who has navigated the hereditary cancer journey is as fortunate as I am. Although my cancer experience demanded sacrifice, my experience had such a better ending than my grandmother’s. Diagnosed with ovarian cancer in the 1940s, her cancer was a death sentence. Her doctors operated, found that her cancer had spread, and then sent her home without any further treatment.
Since my diagnosis and treatment, I have watched as improvements in cancer research and clinical care have evolved to improve the overall cancer experience:
- new tests to determine the best treatments and targeted therapies that may work preferentially for hereditary cancer
- less drastic life-altering treatments and better medications to fight nausea and boost the immune system during chemotherapy
- less invasive surgery, including skin-sparing and nipple-sparing mastectomy, minimally invasive robotic surgery, and sentinel node biopsies, to name a few
- more choices for breast reconstruction
- new and better options for preserving fertility in previvors and survivors
These changes are steps in the right direction, but our options are still far from ideal and we have a long way to go. Each and every day, our community faces tough decisions and harsh treatments, issues that deserve solutions. Researchers are now starting to look at secondary issues down the road for our community, such as:
- the long-term impacts of menopause, chemotherapy, and later-onset heart disease when someone has a BRCA mutation
- the risks of osteoporosis and arthritis from medication or early menopause
- the impact of treatment or menopause on memory and dementia
As more healthy women now get tested and make these decisions at a younger age, the medical community needs to focus on long-term previvor- and survivorship issues. I have fielded thousands of helpline calls, posts on FORCE, and personal emails from women who face so many challenges that need to be addressed; women who are terrified of cancer and terrified of surgery, living day-to-day in fear. Those who have lost their confidence, libido, fertility, or their sexuality as a result of surgeries. They are facing real challenges and yet they feel they may not be deserving of support.
As a breast cancer patient I felt that I was supposed to be grateful to be alive and not worry about the nuances of quality-of-life issues. I was expected to accept the sacrifices and losses without question.
- I was told that I would need to give up my dream of having another pregnancy.
- I was told I shouldn’t get the reconstruction that I wanted because my long-term prognosis was questionable.
- I was told that the fatigue, joint pain, and bone density loss I experienced after treatment was inevitable.
- I was told that my lost libido was not associated with lack of hormones.
- I was told that my weight gain was due to depression.
- I was asked to compromise my quality of life in exchange for survival.
My first diagnosis was early-stage breast cancer and surgery was initially my only treatment. At that time my prognosis was excellent. But I was 33 with cancer and needed support. I went to a support group and was told by another survivor who was going through chemotherapy that I didn’t know what pain and suffering was. She felt that I had not suffered enough to belong to the group and I therefore didn’t need support. I left and never returned. Imagine being told you don’t deserve the support you need! Later, when my cancer returned in my lymph nodes, I wondered “have I suffered enough now?” My experience sensitized me to both the survivor and previvor communities and the support needed by anyone who faces hereditary cancer. FORCE was founded on this principle, that “nobody should face hereditary cancer alone.”
I struggled with serious consequences for the three years immediately following my treatment. I dealt with severe fatigue, joint pain, and a complete lack of libido. My doctors wouldn’t listen and minimized my concerns. They seemed to imply that I should feel grateful, despite being debilitated at age 35. Rather than working with me to develop solutions, they dismissed me. I had to shout, self-advocate, research, fire doctors and search for new doctors until I found providers who would work with me. Eventually I found a solution that worked for me.
Like me, many women are being told that they don’t have a right to complain because they aren’t currently battling cancer or because they had the opportunity to take preemptive steps. Yet these women have had losses that affect their lives and for which they grieve.
I want to say emphatically that it is wonderful to be grateful to be alive but it shouldn’t be a requirement placed on us by others. It is okay to want it all.
We have a right to expect the best quality-of-life and better options for ourselves and for our children. Facing intensive screenings, call-backs for more screening, biopsies, surgery, early menopause (and the associated risks), agonizing decisions, sacrificing our fertility, and the concern that our children may have inherited our genetic predisposition—all of these experiences are valid challenges. And nobody has suffered too little to deserve support!
I am happy to report that I now have my health (and libido) back and I’m living a great life. Not everyone is so fortunate. If we fade into the shadows and don’t speak out, we won’t get the research or resources we need. It is okay to cry, vent, scream, grieve, and share our situation, our options and our outcomes, and then collectively demand better. Whether you are a previvor or a survivor the issues faced by the hereditary cancer community come with long-term consequences and our concerns are valid. We must stop apologizing for wanting it all and unite to advocate for more research and better options for ourselves and our community.Tags: brca, BRCA 1, BRCA 2, brca research, brca testing, BRCA1, BRCA2, breast cancer, breast cancer early detection, breast cancer prevention, cancer prevention, facing our risk, facingourrisk, FORCE, gene testing, Genetic counseling, HBOC, hereditary cancer, hereditary cancer research, ovarian cancer, ovarian cancer early detection, previvor, previvor;pre-vivor;high-risk;breast cancer risk;ovarian, prophylactic mastectomy, prophylactic surgery, survivor, young survivor