Avoiding Misdiagnosis: Why Multiple Opinions Matter
- A 23-year-old woman, who battled for more than a year to receive a correct diagnosis of ovarian cancer, urging others to push for answers after her symptoms of bloating and indigestion were initially dismissed as IBS or endometriosis.
- Ovarian cancer is a disease that is often harder to catch in its early stages because of its subtle symptoms, such as bloating, weight loss, and abdominal pain that can mimic regular menstrual cycle fluctuations.
- There is no screening test for ovarian cancer, but doctors say it is important for women to be aware of symptoms — like bloating and feeling full too fast — which can indicate something is wrong.
- Endometriosis is when tissue, similar to the tissue that normally lines the inside of the uterus, known as the endometrium, grows on the outside of the uterus. Though it can come with debilitating pain, it can often be difficult to diagnose.
- Irritable Bowel Syndrome (IBS) is, according to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD), “a group of symptoms that occur together, including repeated pain in your abdomen and changes in your bowel movements, which may be diarrhea, constipation, or both,” adding, “With IBS, you have these symptoms without any visible signs of damage or disease in your digestive tract.”
- When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward.
Sharing her story with BBC, Reynolds recounted seeing her doctor in January 2023, four months after her symptoms arose, and returning often in search for answers.
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Reynolds, who claimed no one had felt her stomach prior to the discovery of her tumor, ultimately had the tumor removed, along with her right ovary and right fallopian tube, three months after it was discovered.
“What I struggle with about my whole journey is the way I was diagnosed. Because as soon as I got to see the right people … it’s been amazing,” she added.
Thankfully, Reynolds has since been declared cancer free and is using her story to encourage others to “listen to their bodies and advocate for themselves,” also hoping doctors will hear her story and pay more attention to their patients.
She told BBC, “If someone presents the first time you may think maybe it is related to a pre-existing condition or it is just a generic bloating or digestive issue.
“But, if the same person keeps coming back time and time again with the same symptoms something is clearly wrong and investigations need to take place.”
In a recent LinkedIn post, Reynold promoted her story to raised awareness for Gynaecological Cancer Awareness month.
She wrote, “Last march, on my 22nd birthday I attended A&E. After 12+ months of symptoms and dismissals from numerous GPs I had sudden onset abdominal pain, I had researched ovarian cancer and believed that to be a possible cause of my symptoms.
“I was again, told categorically it was not cancer, rather a large cyst. Doctors failed me – two weeks later I received a phone call telling me I was being referred to oncology.”
Reynolds, who no longer has ovaries, one which was removed during the first surgery when the cancer was taken out and the other which was lost to scar tissue damage, once again urged others to “be the biggest advocate for yourself you can be.”
“We live everyday in our bodies, love them and nurture them – we often know when something is wrong,” she added.
Advocating for Yourself While Navigating the Medical World
Understanding Endometriosis & IBS
Endometriosis can be a very painful disorder. Essentially what happens is the abnormal tissue outside of your uterus thickens, breaks down and bleeds with each menstrual cycle. But because this tissue has no way to exit your body like normal endometrial tissue, it becomes trapped. This can cause cysts, irritation and scar tissue and adhesions abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other to form.
According to the National Institutes of Health, “The word endometriosis comes from the word ‘endometrium’—endo means ‘inside,’ and metrium means “uterus,” where a mother carries her baby. Healthcare providers call the tissue that lines the inside of the uterus the endometrium.”
Endometriosis usually occurs on or near reproductive organs in the pelvis or abdomen, according to Johns Hopkins Medicine. Other areas is can be found in are the fallopian tubes, ligaments around the uterus (uterosacral ligaments), lining of the pelvic cavity, ovaries, outside surface of the uterus, space between the uterus and the rectum or bladder.
In rare circumstances, it can also grow on and around the bladder, cervix, intestines, rectum, stomach (abdomen), and vagina or vulva.
According to the WHO, “Endometriosis often causes severe pain in the pelvis, especially during menstrual periods. Some people also have pain during sex or when using the bathroom. Some people have trouble getting pregnant.
“Some people with endometriosis don’t have any symptoms. For those who do, a common symptom is pain in the lower part of the belly (pelvis). Pain may be most noticeable during a period, during or after sex, when urinating or defecating.”
Some may also experience:
- chronic pelvic pain
- heavy bleeding during periods or between periods
- trouble getting pregnant
- bloating or, nausea
- fatigue
- depression or anxiety
As for irritable bowel syndrome (IBS), a debilitating condition impacting the stomach and manifesting in symptoms such as diarrhea and constipation, which Reynold claimed she was wrongly diagnosed with, the National Institute of Diabetes and Digestive and Kidney Diseases says some symptoms associated with IBS include:
- Abdominal pain and cramps
- Bloating
- Bowel movements that are harder or looser than normal
- Diarrhea and constipation
- Excessive gas
While IBS is an incurable condition, medications are readily available to manage conditions. However, some of these stomach-related problems and gastrointestinal problems are also shared by some common cancers.
WATCH: Detecting Subtle Signs of Ovarian Cancer
While other types of cancer can cause similar symptoms to IBS, some common cancers include:
Colorectal cancer can have symptoms like cramps, gas, and changes in bowel habits.
Liver cancer can also cause swelling or bloating in the abdomen or abdominal pain below the ribs.
Ovarian cancer can cause symptoms of bloating or fullness, pain in the pelvis or abdomen, and changes in bowel habits.
Stomach cancer can cause feelings of indigestion and stomach discomfort, feeling bloated, and stomach pain.
Understanding Ovarian Cancer
Ovarian cancer is when the ovaries, which produce the sex hormone, estrogen, as well as eggs, become cancerous. Women have two ovaries, one on both sides of the uterus.
A significant number of ovarian cancers begin in the fallopian tube, which brings the egg from the ovary to the uterus for fertilization. Initially, a few cancerous cells are developed on the fallopian tubes, then they stick to the ovaries as the fallopian tubes brush over the ovary. Then on, the cancerous cells increase in size to form a tumor.
Expert Resources On Ovarian Cancer
- 11 Ovarian Cancer Tests Used for Patient Diagnosis
- “You Are Your Own Best Advocate” – Recognizing the Subtle Symptoms of Ovarian Cancer
- 3 Common Myths About Ovarian Cancer Screening
- 7 Well-Known Women Who Battled Ovarian Cancer, Including Actresses Kathy Bates, Cobie Smulders & Activist Coretta Scott King; What to Know About the Disease
- A Healthy Diet During Ovarian Cancer
- A New Concept to Living With Ovarian Cancer– Keeping Your Muscles Healthy to Avoid “Sarcopenia”
- Advances in Ovarian Cancer Treatment
- Anxiety After Ovarian Cancer — What Can I Do?
According to Dr. Beth Karlan, a gynecologic oncologist at UCLA Medical Center, the term ovarian cancer is referring to a number of different tumors located in the ovary. She also notes that ovarian cancer can be tough to recognize with it’s often subtle symptoms.
“Ovarian cancer does not have any specific symptoms,” Karlan said in a previous interview with SurvivorNet. “It’s often referred to as the cancer that whispers, in that it has symptoms that are really very vague and nothing that may bring your attention directly to the ovaries.”
Dr. Karlan urges women to be wary of a variety of possible symptoms.
RELATED: Spotting the Early Symptoms of Ovarian Cancer
“The symptoms include things like feeling full earlier than you usually would when your appetite is strong,” she said.
“Feeling bloated,” is another symptom, she added. “Some changes in your bowel habits. Some pain in the pelvis. These are symptoms women may have every month. These are not very specific. But what we’ve found from multiple studies, it’s this constellation of symptoms.”
Pushing For A Correct Diagnosis
When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work.
As a patient, if you don’t feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate.
Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, previously told SurvivorNet that healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources.
“The truth is you have to be in tune with your body, and you realize that you are not the statistic,” he said.
Be Pushy, Be Your Own Advocate. Don’t Settle
Dr. Murrell says not every patient will “fit into” the mold, so it’s important to “educate yourself and be your own health care advocate.”
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Murrell said. “And I think that that’s totally fair. And me as a health professional that’s what I do for all of my patients.”
Avoiding Provider Bias – Is Your Doctor Understanding You?
While your doctor has undergone years of training and practice, they are still human, and may come with their own set of biases that can impact how they treat patients.
To combat these biases and really get the most out of your interactions with your doctor, you should provide her or him with plenty of information about your life and ask plenty of questions when things aren’t clear. To better understand how you should approach conversations with your doctor, we previously spoke with Dr. Dana Chase, gynecologic oncologist at Arizona Oncology.
According to Dr. Chase, physicians, like many of us, can be a bit biased when seeing patients. She made it clear that these biases are rarely sinister, but rather unconscious and more subtle.
She explained, “We have certain beliefs that we don’t know about. We might look, for example, at an older woman, and just by the way she looks we might make certain assumptions, and we might not even know that we’re making these assumptions.”
Let’s Talk About Provider Bias
Clearing up misconceptions is important, but so is understanding what your doctor is telling you, Dr. Chase noted. Overall, she advises women to speak up and ask questions when they don’t understand something.
“It’s never a bad thing to ask for something to be repeated, or to ask the doctors to explain it in different terms.”
So next time you go to your physician, speak up if you need clarity, so your doctor can understand you and you can understand them.
Leading Experts Urge Us to Be Proactive
“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care,” National Cancer Institute Chief of Surgery Steven Rosenberg told us in a previous interview, “because finding a doctor who is up to the latest of information is important.”
RELATED: Second (& Third) Opinions Matter When Deciding Between Surgery or Radiation
As we highlight in several areas of SurvivorNet, highly respected doctors sometimes disagree on the right course of treatment, and advances in genetics and immunotherapy are creating new options. Also, in some instances the specific course of treatment is not clear cut. That’s even more reason why understanding the potential approaches to your disease is crucial.
RELATED: Burned Out Doctors Make More Mistakes: It’s OK To Talk Openly About This With Them
At the National Cancer Institute, there is a patient referral service that will “guide patients to the right group depending on their disease state so that they can gain access to these new experimental treatments,” Rosenberg says.
Cancer Research Legend Urges Patients to Get Multiple Opinions
Furthermore, getting another opinion may also help you avoid doctor biases. For example, some surgeons own radiation treatment centers. “So there may be a conflict of interest if you present to a surgeon that is recommending radiation because there is some ownership of that type of facility,” Dr. Jim Hu, director of robotic surgery at Weill Cornell Medical Center, tells SurvivorNet.
RELATED: Mental Health & Cancer: A Third of Patients Aren’t Getting the Help They Need
Other reasons to get a second opinion include:
- To see a doctor who has more experience treating your type of cancer
- You have a rare type of cancer
- There are several ways to treat your cancer
- You feel like your doctor isn’t listening to you, or isn’t giving you good advice
- You have trouble understanding your doctor
- You don’t like the treatment your doctor is recommending, or you’re worried about its possible side effects
- Your insurance company wants you to get another medical opinion
- Your cancer isn’t improving on your current treatment
Bottom line, being proactive about your health could be a matter of life or death. Learn as much as you can from as many experts as you can, so that you know that you did your best to take control of your health.
Contributing: SurvivorNet Staff
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