This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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Why Shouldn’t We Have It All?

March 5, 2012

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.

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  1. Elizabeth Peters says:

    Thank you for saying it all…. Betty Peters

  2. Anonymous says:

    I concur with the above posting… I too have experienced some of what you wrote.. never felt worthy of wanting it all since I did indeed live as well…10 years going strong. Thank you for not only being our voice but giving us the confidence and power to overcome past comments from professionals and also misinformation. Thank you for helping us demand more! Lisa Rogers

  3. Lisa Rogers says:

    I concur with Elizabeth… thank you. You have given us all voices, confidence and power in standing up against professionals who have made pat comments that often make us feel guilty for complaining. You have given me confidence for setting professionals straight about the misinformation they feel free to share, and since they are the “professionals” we are made to feel they know more than we do. Thank you for your tireless energy!

  4. Teresa Wicks says:

    I am hoping to work more with survivors as I myself navigate the new reality after cancer, BRCA, and all the treatments. Thank you for expressing so eloquently what many of us have felt and also dealt with.

  5. Linda says:

    Newly diagnosed, I will be grateful if I live to tell, complain or just enjoy.

  6. You are an inspiration and one of a kind. The organization you have found is affecting women in the US and around the world.

    I thank you for all BRCA women!

    I thank you for all women, men, sisters, btothers, husbands, family and friends whom you have touched!


    Dr. Dorit Amikam

  7. CArey says:

    Regardless of diagnosis being grateful for each day is healthy for everyone, not just cancer victims. Whatever journey we are on we all suffer one way or another. Personally , I find that it helps with the healing process and brings me to greater over all improved health. It also empowers me to be my own advocate for my health care and seek other opinions. Love you Sue.:)

  8. Jeannine Salamone says:

    Thank you, Sue! That was very powerful and very inspiring. You are doing amazing work at FORCE and i for one, am grateful.

  9. Bitsy says:

    So where does one go to get better answers to questions about quality of life issues related to treatment?

  10. Bravo! Thank you for telling it like it is!

  11. […] gene patents, and the need for: more HBOC research, implementation of risk-based screening, and better risk-management options. Uptake of genetic services in the U.S. for people who meet guidelines is still very low, and great […]

  12. Anonymous says:

    Thank You Sue! Don’t know what I would of done without FORCE! 🙂 Your Awesome!!!!

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