Getting A Second Opinion
- Allison Kilfoy was diagnosed with ovarian and uterine cancer at 27 years old. But after getting a second opinion at a comprehensive cancer center, she found the right treatment path for her.
- Ovarian cancer is called the cancer that whispers because its symptoms can be very vague. People should remain vigilant and aware of any new or unusual symptoms and report to their physicians for appropriate evaluation.
- Uterine cancer includes two types of cancer: endometrial cancer (more common) and uterine sarcoma. There are several signs to watch out for including irregular bleeding as well as lower abdominal pain or cramping in your pelvis, just below your belly, or thin white or clear vaginal discharge if you’re postmenopausal.
- One of the greatest cancer researchers of our time tells SurvivorNet that people should get “multiple” opinions following a cancer diagnosis.
Kilfoy was struggling with pain and what she thought was food poisoning five years ago. She visited various doctors for months, but it wasn’t until June 12, 2017, that the then 27 year old learned she had both ovarian and uterine cancer.Read More
“The first opinion I was told they would treat me the same as a 60-year-old, which means a full hysterectomy.”
Thankfully, Kilfoy decided to get a second opinion from the University of Iowa’s Holden Comprehensive Cancer Center before proceeding with treatment.
“They spent more than an hour just going over options,” she said. “I was able to freeze eggs to use in the future and I did not have a hysterectomy.
“They just took the cancer out and then I did chemotherapy.”
During chemotherapy treatments, Kilfoy struggled with hair loss and always opted to wear a wig.
“I wore a wig all the time because I didn’t want to look like I had cancer,” she said.
But now wigs have taken on a whole new meaning for the cancer survivor. Ever since Kilfoy’s friends decided to wear wigs for a celebration marking the end of her chemotherapy treatments, she began having an annual wig party for her Conquer Cancer Fund to raise money for the Holden Comprehensive Cancer Center. Last year, she raised over $15,000.
“It is the mission of this initiative to continue to provide advocacy and awareness about the power of a second opinion, and the life changing treatments and options that can come from knowing where to go,” the donation site reads.
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 either side of the uterus.
The fallopian tube, which brings the egg from the ovary to the uterus for fertilization, is actually where many ovarian cancers begin. First, a few cancerous cells develop on the fallopian tubes, then these cells stick to the ovaries as the fallopian tubes brush over the ovary. From there, the cancerous cells grow to form a tumor.
Your risk for ovarian cancer may be increased if you have gone through menopause, have a gene mutation like BRCA1 or BRCA2, are obese or overweight, had your first pregnancy after age 35 or never carried a pregnancy to full-term, have a family history of cancer or used hormone replacement therapy. You should talk with your doctor about your potential risk for the disease.
Symptoms of Ovarian Cancer
Ovarian cancer is known as the cancer that whispers because symptoms are vague and sometimes similar to regular menstrual cycle fluctuations. Dr. Beth Karlan, a gynecologic oncologist with UCLA Health, says that ovarian cancer can be difficult to recognize with its subtle symptoms.
“Ovarian cancer does not have any specific symptoms,” Karlan said in an earlier 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.”
But Dr. Karlan still wants women to keep an eye out for a variety of possible symptoms.
“The symptoms include things like feeling full earlier than you usually would when your appetite is strong… Feeling bloated,” 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.”
Dr. Stephanie Wethington, director of the gynecologic oncology survivorship program at Johns Hopkins Medicine, previously told SurvivorNet that prevention for ovarian cancer is an important area of focus.
“We must remember that prevention is key and advocate for all women to discuss their family history and individual risk factors with their doctors and ask whether there are risk-reducing options available to them,” Dr. Wethington wrote.
Our advice to readers: See your doctor if you feel like something is off. Given that ovarian cancer can have no symptoms or a myriad of symptoms that you might easily brush off as nothing, it’s important to always seek medical attention when your gut is telling you something might be wrong. That doesn’t mean we should assume the worst every time we feel bloated or have a change in appetite, but it does mean that we should always try to listen to the signs our body is giving us.
Understanding Uterine Cancer
Uterine cancer includes two types of cancer: endometrial cancer (more common) and uterine sarcoma. The uterus, or womb, is a pear-shaped organ where a fetus can develop and grow. More than 90 percent of uterine cancers occur in the endometrium (the layer of tissue that lines the uterus), making them endometrial cancer. Uterine sarcoma, on the other hand, is very rare and develops in the myometrium, the muscle wall of your uterus.
Unlike cervical cancer, uterine cancer is not caused by HPV. But there are also several conditions that may predispose someone to getting uterine cancer including:
- Polycystic ovary syndrome (which is marked by the absence of regular periods)
- Hyperandrogenism (elevated male sex hormones)
- Lynch syndrome
“These patients might not be thinking about this, their primary care providers may not be speaking to them about this,” warns Dr. Diana English, a gynecologic oncologist with USF Health.
There are also several signs to watch out for regarding uterine cancer. Irregular bleeding – bleeding in between periods for pre-menopausal women and unexpected bleeding for post-menopausal women – is a very common symptom. Other signs can include lower abdominal pain or cramping in your pelvis, just below your belly, or
thin white or clear vaginal discharge if you’re postmenopausal.
If you develop abnormal bleeding or have any concerns about your body, it is important to direct all questions to your doctor right away. Early cancer detection is hugely beneficial for treatment outcomes, so always remember to advocate for yourself.
The Importance of Getting a Second Opinion
After receiving a cancer diagnosis, it’s important to remember that you can, and should, talk to other cancer specialists about your disease.
“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 SurvivorNet in a previous interview. “Because finding a doctor who is up to the latest of information is important.”
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.
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.
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.
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: Marisa Sullivan