You Lift Me Up!

I’ve chosen to dedicate this Teal Diaries post to two amazing women who recently passed away, their legacies are something that I wish to make known and that I strongly admire. Although I never met them in person, Dr. Nadia Chaudhri and Julie Rohr had an impact on me and on thousands of others within the global cancer community. I will forever remain grateful to them for choosing to share their lives so publicly, for inspiring me, and ultimately for becoming such a positive part of my own journey with ovarian cancer. Nadia and Julie’s lives were tragically cut short, however before they passed on, they taught me so many lessons about what it is for us as human beings to face our mortality. Both women embodied qualities such as humility, resilience and strength of spirit, but above all they revealed to me something fundamental. They both demonstrated through example that we should always endeavor to treat each moment that we’re alive as precious. 

The Legacy of Dr. Nadia Chaudhri

Dr. Nadia Chaudhri was driven and passionate, a gifted academic as well as a wife and the mother of a young son. Just as the pandemic was beginning, she started feeling unwell and visited her doctor. Some of the issues that she reported to her physician were fatigue, lack of appetite, abdominal bloating and frequent urination. Nevertheless, it took Chaudhri months of personal advocacy and multiple referrals to different specialists to finally determine what had been causing her symptoms. In June 2020, at 43 years old, the Montreal neuroscience professor, was diagnosed with metastatic ovarian cancer. That fall, she went through chemotherapy but was told the following spring the cancer would be terminal. 

Chaudhri chose to share her life as the disease progressed and posted some of the most poignant moments of her journey on social media. She eventually gained over 148,000 followers on Twitter. While she was in the hospital, Chaudhri drafted a GoFundMe pitch to help fund travel for young scientists — particularly those who are marginalized or underrepresented in the field — to be able to attend the Research Society on Alcoholism’s annual conference. On the first day, her initiative raised $50,000 US. Soon after Chaudhri’s GoFundMe launched, Concordia University also set up a fundraiser in her honour. The Nadia Chaudhri Wingspan Award will become an annual scholarship to support neuroscientists from underrepresented backgrounds, including students who may face barriers related to systemic issues like racism, sexism or geographic origin.

I watched in wonder as Chaudhri accomplished more in her final weeks than most entirely healthy people would normally undertake in a year. From her palliative care bed, the beloved wife, mother, colleague and teacher rose awareness about ovarian cancer, the devastating disease that was gradually killing her. She even continued her fundraising for the Wingspan Award. She posted videos of her daily hallway “shuffle” and invited people to donate. Though Chaudhri disclosed the harsh realities of living with a terminal diagnosis—such as the angst she faced before telling her young son about it—she also shared pockets of wisdom and joy, including paintings she made, close-ups of flowers and pictures of her and her family.

Myself, I’ll always be grateful for the heightened public awareness Chaudhri was able to raise concerning ovarian cancer. “I am mad as hell that I was misdiagnosed for so long,” she tweeted this year on World Ovarian Cancer Day, May 8. “And mad as hell that there’s been minimal progress in the treatment of ovarian cancer.”

The Legacy of Julie Rohr

Julie Rohr was a young mother from Edmonton, Canada, she was living with retroperitoneal leiomyosarcoma (LMS), a cancer of the soft muscle tissue. It’s one of those extremely rare cancers — only about one in one million people receive the exact diagnosis Rohr did — which means there’s little funding for research or treatments. When they first discovered her cancer medical experts informed her that she would be lucky to live five years. However Rohr ultimately lived six years beyond her initial diagnosis, making the most of each moment. As a cancer patient, she endured several major surgeries in addition to many grueling treatments, an ominous list that included radiation, ablation, and chemotherapy.

Rohr’s love of live and her constant hope and positivity made her well-known in Alberta and throughout Canada; she was treasured, especially within the cancer community. Even when periodic tests would show that her cancer had spread or returned, she remained a force of nature and still devoted her time to encouraging others facing the disease. Her cancer advocacy and powerful words often made the local or national news, in addition she had thousands of followers on social media.

“Even though I have been through many surgeries, radiation, chemo and all the rest, cancer hasn’t (and can never) take our spirits, can it? We all make the choice, every day, to look for the good in life. To build one another up, even on the hardest days.” 

Julie Rohr was just 38 years old when she died 

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.