The Blame Game: Guilt and Cancer

One of my New Year’s resolutions for 2014 is to more effectively manage the guilt or shame that I sometimes feel concerning my cancer. It seems unfair considering all the other unpleasant emotions that cancer triggers, but guilt in its various forms is a constant enemy waiting to attack cancer survivors and their caregivers.

It’s been well documented that many cancer survivors have feelings of shame or guilt, particularly around the notion that they may have played some part in causing their cancer. Certain cancers, for example lung cancer, have especially strong stigmas attached to them in this regard. “He smoked heavily, so what did he expect?” When it comes to cancer we often subtly, or not so subtly, blame the person for his or her disease. Friends, family members or strangers often do this unwittingly, in an attempt to rationalize a painful reality and to cope with it better themselves. Human psychology being what it is, whenever we can construct an explanation for something, it makes us feel a little better. Experts, such as renowned scientist and author Jon Kabat-Zinn, emphasize that blame only robs an individual with cancer of the present by directing their attention on the past—it undermines them when they most need to focus their energies and face the reality of having a life-threatening disease.

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While gynecological cancers don’t involve the same degree of stigma as lung cancer or some other forms of the disease, I’ve still experienced times when I’ve felt that I might be to blame for my illness. Leading up to my diagnosis, I was having symptoms that could indicate uterine and/or ovarian cancer and my doctor recommended surgery. At first I was somewhat hesitant due to fear and denial of my situation. I had never been hospitalized or had any type of surgery before, now I was being informed that I should have a total abdominal hysterectomy as well as the removal of my right ovary. My gynecologist had to “twist my arm” to a certain degree. I ultimately consented to the procedure when I realized that it was in my best interest. What would the outcome have been if I had chosen to have the operation sooner? Would my endometrial cancer be less advanced, lower than the stage III that I am currently diagnosed with? Would it have had time to spread to my lymph nodes and affect my right ovary?

There is no way to determine these things for certain, but I do regret my hesitancy to take action. Everyone has done things that they wish they hadn’t. My argument is that there is a difference between taking responsibility for the consequences of actions and feeling like you deserve to be blamed. It may be true in some cases that our lifestyle or health care choices increase the odds of getting cancer or contribute to cancer progression. No doubt in such circumstances changing certain behaviours may improve your health. However, allowing yourself to absorb blame and feel shame will almost certainly make matters worse. Instead, it’s better for cancer survivors not to let shame and guilt keep them from moving forward, getting the support they need and deserve, and living in a healthier way. Shame and guilt are unnecessary burdens to carry. From everything that’s known about the emotions and health, acceptance and forgiveness are what we need to cultivate and enhance healing, not self-condemnation and self-blame.

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This having been said, there are numerous other ways in which guilt manifests itself in the lives of cancer survivors. Guilt takes sinister forms for us, like feeling shame for the envy we feel about those who are in good health; feeling guilty about the disproportionate amount of attention we receive, and even guilt about surviving cancer when so many others have not. I remember feeling guilt-ridden when I was undergoing cancer treatment and unforeseen complications occurred. My condition ultimately caused me to spend over a month and a half in Calgary’s Foothills Medical Centre. As my primary caregiver, my mother had her life completely turned upside down. Although she is semi-retired, she took a leave of absence from her part-time job and rearranged her daily schedule to visit me. My brother also took some hours off work at the law firm where he practices. Suleika Jaouad, a young American fighting leukemia, describes herself in similar circumstances:

“I feel guilty when I start feeling sick or get a fever. I want to apologize, for I know I will soon make the life of my loved ones hell. My mother will have to drive four hours in the middle of the night to take me to the hospital in New York City. Family will have to take sick days from work. After long days at the office, my boyfriend will spend night after night sleeping between two hospital chairs. My father will “hold down the fort” at home (this translates to lonely nights spent worrying by himself and feeling very far away from my hospital room).”

Finally, as I’ve alluded to, some cancer patients experience the discomfort of what is termed survivor guilt. I’m aware through various sources that I’ve outlived several of my former cancer ward roommates. Perhaps it’s only human nature to occasionally wonder why I’ve been fortunate enough to achieve remission, when so many women diagnosed with my form of cancer have lost their agonizing battle.

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For more information regarding guilt and cancer or to seek professional advice contact the psychosocial oncology department at your regional cancer centre or reach out to other cancer resources in your community.

Walk of Hope

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Last week I participated in my first ever cancer fundraising event, the 2013 Ovarian Cancer Canada Walk of Hope. On September 8 thousands of Canadians came together in over 45 communities. We all had one common goal—to overcome ovarian cancer. Together we raised $2.4 million to bolster awareness, research and programs designed to offer assistance to those with the disease. My mom and brother Ray were both eager to sign up with me for the event, so the three of us walked resolutely with several hundred others through North Glenmore Park in Calgary. Given my athletic abilities and physical condition, I opted for the shorter 2.5 km route rather than the full 5 km course. The weather cooperated with us. There had been cool winds and torrential rain the day prior to the walk, but the morning of September 8 was flawless and sunny with only the faintest hint of breeze.

One highlight of the event was a speech from Calgary’s mayor, Naheed Nenshi. As he addressed the crowd from an outdoor stage, he reminded us of the future generations of ovarian cancer patients that will benefit from our efforts, women who have yet to be diagnosed. I am a case in point, ten years ago when the Calgary version of the walk fundraiser was founded I was still blissfully ignorant. I never dreamt in those days that I would become a member of a rather exclusive and unfortunate fellowship of ovarian cancer survivors. Friends and family members of those who have lost their battle with the disease were present in large numbers. Countless people are motivated to participate in the Walk of Hope each year in memory of someone they cherished. But Nenshi also drew attention to the fact that complete strangers will ultimately benefit from our collective endeavours and that there is power in working toward a goal together.

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Posing with my mom and brother Ray at the 2013 Ovarian Cancer Canada Walk of Hope. Over 200 participants were at the fundraising event.

For women, such as myself, engaged in a personal battle with ovarian cancer the reasons for participating in major fundraising events are often deeper. We know that we have what is considered to be the most dangerous of the gynecological cancers—we face high recurrence rates and an overall five-year survival rate of less than 30 per cent. Walking through Glenmore Park, I look around at other women who are actively fighting this disease and I appreciate that we are the brave few who are in remission or who have managed to beat the odds of recurrence. For me walking is a way of feeling more in control and less helpless against a disease that has ruthlessly invaded my body and that kills approximately 1750 Canadian women each year. It’s also a way for me to celebrate all that I do have in my life, and to remind myself that I have more than just cancer.

American journalist, Karin Diamond, expresses these sentiments eloquently in a current online article entitled Cancer Is Not All I Have. Although Diamond isn’t one of the thousands of women with gynecological cancer, she is engaged in a battle with recurrent, chemo-resistant Hodgkin Lymphoma. It persists despite slews of drug combinations, radiation, two stem-cell transplants, immunotherapy, and clinical trials. The 30-year-old acknowledges that there are very few medical treatment options left for her to try. Still the tone of Diamond’s Huffington Post feature isn’t despairing. Throughout it she juxtaposes images of her cancer-ravaged body and other stark cancer related descriptions with the magnificence that remains in her life. Essentially her blog post is a tribute to all that she is fortunate enough to enjoy, including her husband, her family and her career. “I have a good, no a great, no an utterly balls-out fabulous life and more importantly, the capacity to understand its impermanence,” Diamond writes.  “Sure, I have some things that I don’t need, ahem, cancer, but I have everything I do need. Right here. Right now. I revel in that comfort and wonder how I got it so good.”

As I proudly cross the finish line in the 2013 Ovarian Cancer Canada Walk of Hope suddenly my life doesn’t seem so bad either.

The Disease That Whispers

In virtually all cases, the earlier cancer is diagnosed the more straightforward it is for oncologists to treat. Early detection of the disease frequently results in a better prognosis and a greater chance of achieving a long-term cure. Fostering public awareness regarding the signs and symptoms of cancer is vital, as it can literally mean the difference between life and death for some individuals. At minimum everyone should acquaint themselves with the seven warning signs of cancer! The warnings offered by such organizations as the Canadian Cancer Society and the American Cancer Society alert the public to physical occurrences that could indicate a problem.

In this blog post I aim to go beyond such very universal warning signs and discuss the specific signs of both uterine and ovarian cancer. I will also mention risk factors for each of these diseases. Just a generation or two ago many women suffered in silence, as one’s “female problems” weren’t discussed in polite company. Even today there remains a certain degree of stigma to “below the belt” cancers in both sexes. I acknowledge that embarrassment and a sense of denial, or wishing that my symptoms would just go away, played a role in my relatively late diagnosis. So did my own lack of awareness about the risk factors for endometrial and ovarian cancer.

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OVARIAN CANCER

Sometimes called the disease that whispers, ovarian cancer is the most serious of all gynecological cancers. Over 2600 Canadian women are diagnosed every year; and every year 1750 women succumb to this disease. Symptoms are varied, vague and easily missed and there is no early detection test. Until there is a reliable early screening test for ovarian cancer, awareness remains an essential weapon against the disease.

Ovarian Cancer Warning Symptoms

Swelling or bloating of the abdomen / Pelvic discomfort or heaviness / Back or abdominal pain / Fatigue / Gas, nausea, indigestion / Change in bowel habits / Emptying your bladder frequently / Menstrual irregularities / Weight loss or weight gain

Other symptoms sometimes include a mass or “lump” in your pelvis that you can feel or a sensation of fullness leading to the inability to eat normally. Pain with intercourse or unusual vaginal bleeding (bleeding between periods or the reemergence of bleeding in post-menopausal women) may also occur.

Risk Factors

The cause of ovarian cancer is unknown. However, the risk of developing ovarian cancer increases as you age—according to Ovarian Cancer Canada 6 out of 10 women diagnosed with ovarian cancer are between 50 and 79 years old. The risk for the disease or of getting it a younger age may be increased if you have any of the following:

  • Have not had children
  • Have not used oral contraceptives
  • Have a family history of breast, ovarian or colon cancer—About 10 per cent of ovarian cancers are hereditary, or run in the family. The BRCA1 and BRCA2 (or Breast Cancer 1 and 2) genes are involved in most cases of hereditary ovarian cancer. Other cases are caused by a genetic issue called Lynch syndrome.

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UTERINE CANCER

Uterine cancer is the most common cancer of a woman’s reproductive system. It’s usually easier to diagnose than ovarian cancer, as the symptoms are more obvious and there are standard tests to detect it. A Pap smear can raise a suspicion of uterine cancer and in most cases a biopsy of the endometrium or lining of the uterus can confirm it. Uterine cancer most often occurs in women over 50; the average age is 60.

Uterine Cancer Warning Symptoms

  • Unusual vaginal bleeding:  Bleeding that starts after menopause or bleeding between periods in premenopausal women / Heavy frequent bleeding before or during menopause / Bleeding with intercourse
  • Pain:  Pain during intercourse / Pelvic pain or pressure
  • Change in bowel or bladder habits:  Difficult urination / Pain during urination / Blood in the urine / Pain during a bowel movement or blood in the stool

Risk Factors

Hormones, lifestyle and genetics can all play a role in uterine cancer. Longer exposure to estrogen and/or an imbalance of estrogen is a risk factor, specifically for woman who started having their periods before age 12 and/or go through menopause later in life. It is also a risk for those who take hormone replacement therapy (HRT) after menopause, especially if they are only taking estrogen; the risk is lower for women taking estrogen with another sex hormone called progesterone. Finally, women who have never carried a pregnancy to term or taken oral contraceptives can be at greater risk for uterine cancer.

Lifestyle issues, such as obesity, have been proven to have a connection. For example, fatty tissue in women who are overweight produces additional estrogen, a hormone known to increase the risk of uterine cancer. This risk increases with an increase in body mass index (BMI; the ratio of a person’s weight and height).

Finally some uterine cancer is likely due to a women’s genetics. Uterine cancer may run in families where colon cancer is hereditary. For instance, women in families with hereditary non-polyposis colorectal cancer (HNPCC), or Lynch syndrome, have a higher risk for uterine cancer.

 

IMPORTANT DISCLAIMER

The information presented in this blog post is well researched and obtained from reliable sources. However, I do not intend the material to be for diagnostic purposes or to replace the advice of a medical professional. If you have concerns regarding your gynecological health, the best course of action is to discuss these issues with your doctor.