When Ovarian Cancer is NOT Ovarian Cancer

When Ovarian Cancer is NOT Ovarian Cancer 1

I’m having a hysterectomy.

Why? My Mom died of ovarian cancer in 2011 after being misdiagnosed for nearly a year. I’ve done all the routine screenings and they all came back negative. However, routine screening tests to identify ovarian cancer early have largely been discredited. In fact, in 2016 the US Food and Drug Administration released a statement recommending against their use. For that reason, prevention is particularly important.

Ovarian cancer is called the “silent killer” because the symptoms of the early stages of ovarian cancer mirror the symptoms many woman experience during their monthly cycle: bloating, back pain, abdominal pain.

My Mom’s gynecologist found her ovarian cancer by accident when performing a hysterectomy. At the point of diagnosis, Mom had less than an 18% chance of living five years. Most women are diagnosed at Stage 3 or 4 and face the same survival rate.

This is what makes ovarian cancer the deadliest of all the gynecological cancers. Ovarian cancer is the fifth in cancer deaths among women. A women’s risk of getting ovarian cancer during her lifetime is about 1 in 75. Her lifetime chance of dying from ovarian cancer is about 1 in 100.

Any woman can get ovarian cancer at any age – most are diagnosed well into their 60’s. However there are cases of ovarian cancer occurring in infants as young as 18 months old, young girls age 7, and young women in their last teens and early 20’s. Can you imagine entering college having undergone a full hysterectomy, worrying about when to tell your potential partner that you cannot have children?

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There are 23 different types of ovarian cancer and thus there is no single test like there is for breast cancer. Your annual PAP Smear tests for cervical cancer, not ovarian cancer.

What can you do about ovarian cancer? Making yourself aware of the common symptoms is key to early diagnosis. Most common? Bloating, Eating – feeling full after eating or losing your appetite, Abdominal pain, Trouble urinating or more frequent urination. Just remember that acronym B.E.A.T.  If you are currently experiencing these symptoms, track them for your doctor so that they have the facts. If no change in diet or exercise gives you relief, take your tracker to your doctor and say “Prove to me I don’t have ovarian cancer.”

What can your doctor do if there is no test? There are a few routine screenings that she can perform but ultimately only a biopsy of the tissue can confirm or deny your diagnosis. Your doctor can do a blood test called a CA-125, which looks at an elevated protein level in your blood. The problem is that nearly 80% of those tests come back falsely positive.

Your doctor also can check to see if you test positive for the BRCA 1/2 gene mutation. BRCA stands for BReast CAncer. Women who test positive for this gene mutation are 11% to 40% more likely to be diagnosed with ovarian cancer. Jewish women of Ashkenazi descent are 10x more likely than the average women to test positive for the BRCA gene because we’ve married within our faith for so long that the genetic mutation can be traced back to the original founders.

Next your doctor can do an abdominal-pelvic ultrasound, a transvaginal ultrasound, a CT scan, a PET scan or an MRI. Again, only a biopsy can confirm or deny the diagnosis of ovarian cancer.

What is truly important is that you track your symptoms. All of the doctors I have spoken to have reiterated this to me again and again. They deal with facts so going to them to say “I’ve been feeling a little bloated lately” is very different than stating “I have been bloated for the last 7 out of 10 days with a pain scale of 5 on a 1 – 10 scale.”

I’m getting a hysterectomy because it will greatly reduce my chances of developing ovarian cancer. Ensuring that my fallopian tubes are removed is now more important than ever.

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Recently Dr. Boguski, (co-author of this article) and Michelle R. Berman, wrote an article for STAT entitled “Why are we still talking about ovarian cancer?

We made a shocking discovery as they were researching their new books on women’s and men’s cancers: Seventy-five percent of the most deadly form of so-called ovarian cancer actually arises in the fallopian tubes. These tubes capture unfertilized eggs released by the ovary and transport them to the uterus.

This new, potentially radical concept was uncovered in 2007, in large part due to women who carry the BRCA1 or BRCA2 mutations. These genetic changes greatly increase a woman’s risk for breast and ovarian cancer. Women who carry these genes often undergo prophylactic removal of both fallopian tubes and both ovaries (a procedure known as bilateral salpingo-oophorectomy) in an effort to eliminate the source of cancer – which was thought to be the ovaries.

When pathologists carefully studied the tissues removed from women with BRCA1 or BRCA2 mutations, they found precancerous conditions or early cancers in up to 17 percent of them. The real surprise was the finding that these cancers and pre-cancers were always seen in the fallopian tubes, never in the ovaries.

Over the next seven years, this finding was repeatedly confirmed by medical researchers and was also extended to non-hereditary “ovarian” cancer. Gynecologists started to take action on this paradigm shift in 2013.

In 2015, the same year that actress Angelina Jolie had her ovaries removed to prevent BRCA1-related cancer, the Society of Gynecologic Oncology published new recommendations that included removing just the fallopian tubes in women who had completed childbearing in order to prevent what they were still calling ovarian cancer. Because the ovaries are the source of the hormone estrogen, which helps controls the menstrual cycle, keeping them in place helps prevent premature menopause, which is associated with heart disease, osteoporosis, neurological and psychiatric diseases, and an overall increase in the risk of dying prematurely.

The shift from believing that ovarian cancer begins in the ovaries to the understanding that it starts in the fallopian tube has critical implications for the development of new ways to screen for, prevent, and treat the disease.

Given this new scientific understanding, it is now incorrect and misleading to refer to the majority – and most deadly form – of pelvic serous cancers as ovarian cancer. In an age of precision medicine, we hope that doctors, administrators, insurance companies, policy makers, and advocacy groups will define and explain these conditions for the public with the appropriate accuracy women and their loved ones deserve.

Beyond semantics, however, there is real harm in misleading women with an outdated term. It impairs awareness of new possibilities for prevention and treatment while also hindering promising new avenues of research. New approaches to a redefined disease could dramatically improve screening and early detection.

This new understanding of the disease formerly known as ovarian cancer and its consequences may not only reduce the risk of developing it, but may also eliminate premature menopause and preserve the ability to bear a child in women at high risk for it, who now might need to have only their fallopian tubes removed, and not their ovaries.

If I was still in child bearing years I might elect to only have my fallopian tubes removed. As it is I could still do that to prevent me from going into premature menopause. However, at the age of 52 I like to joke that I have one egg that gets coughed out every month like a little old man with a pack a day smoking habit. My Mom’s ovarian cancer along with the presence of several large fibroids and cysts has led me to the decision to have a hysterectomy.

In retrospect, what is ironic is that the symptoms I’ve been having that led me to this decision are very similar to those I described in the beginning of this article. I’ve had lower back pain, occasional bloating, eating and feeling full more quickly than usual and an increase in the frequency of my urination. However, I’ve been managing my discomfort with subtle changes to my diet, acupuncture, and using Chinese herbs and essential oils – having no idea it was related to the fibroids that have tripled in size over the last three years.

With the knowledge I now have, I can make informed decisions about my body. I wish I had the same knowledge in 2006 when my Mom was going through all of her discomfort. If I knew then what I know now, she may still be living.

By Jen Coken, Author with Dr. Mark Boguski, Chief Medical Officer, Inspirata, Inc.


Why are we still talking about “ovarian” cancer?

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