Understanding Ovarian Cancer & The Importance of Second Opinions
- Emma Schlamm was diagnosed at age 25 with low-grade serous ovarian cancer after doctor’s said she had a “borderline tumor” in her body. Now, at age 29, she’s urging others: “Do not dismiss” your symptoms.
- Ovarian cancer is called the cancer that whispers because symptoms can be vague and sometimes similar to regular menstrual cycle fluctuations.
- Our advice to readers is simple: Talk to your doctor if you feel like something is off.
- If you’re worried about your risk of developing ovarian cancer, speak with your doctor. One of our experts urges “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.”
- Oncologists encourage people diagnosed with cancer to seek second opinions. You won’t be offending your doctor if you wish to consult another expert.
The California native open up about her ovarian cancer journey in a recent interview to spread awareness of low-grade serous ovarian cancer and urge others “do not dismiss” your symptoms.Read More
“I pushed and pushed and pushed because I was getting worried. I (didn’t) love the idea of anything that was growing in my body that wasn’t supposed to be there,” she explained, nothing how the the mass was attached to her ovary.
“There was no way to remove just the mass. They had to take out the whole ovary. I was very upset about what the implications could be for fertility,” she added. “They really made it seem like, ‘You’re fine. You’re really fine.’ They told me to calm down when I would cry. They really tried to minimize the emotions. I felt incredibly dismissed.”
It wasn’t until one year later that a followup scan revealed a another tumor and she was diagnosed with low-grade serious ovarian cancer.
Schlamm, who was incredible shocked and almost “blacked out” when she learned she had cancer, said, “Cancer was just not on my radar enough, and had it been, I think I would have pushed more. There is no screening tool for ovarian cancer, but there are some things that could have helped my case.”
The second tumor was found on Schlamm’s other ovary, which she described as “a full- fledged low-grade serous ovarian cancer,” which TODAY.com explains as the cancer “started growing in the serous membrane of the ovary,” noting the cancer was stage 2 and had spread to parts of her pelvis.
Prior to starting cancer treatment, which included six rounds of chemo over 18 weeks and surgery to remove the other ovary, Schlamm decided to freeze her eggs to preserve her fertility.
Now she’s taking a drug (an aromatase inhibitor) to lower her estrogen levels, and although there is no longer any evidence of the cancer in her body, Schlamm admits she’s dealing with emotional side-effect of the medication.
“Dealing with menopause at 25 is not fun. It’s brutal. A lot of my grief came from feeling like I lost my youth and vibrance and vitality because … of not just the chemo but also the medication I am on and will be for the foreseeable future,” she told the news outlet.
Now, Schlamm admits that the most difficult thing after her cancer battle is “living with the fear of recurrence because the numbers are just so defeating,” adding, “I try to do what I can, stay active and healthy. It makes me feel like I have some control over my body.”
Referring to why she’s sharing her story, Schlamm said, “I hope that people see me (and) my age, and they’re like ‘This is what ovarian cancer can look like.’ This is not your grandmother’s ovarian cancer. Do not write it off. Do not dismiss it.”
Ovarian Cancer Basics
Ovarian cancer has been called the “cancer that whisper,” because women often don’t experience symptoms until their cancer has already reached its late stages. The symptoms that do appear at first are hard to identify as cancer.
Symptoms of ovarian cancer may include the following, according to SurvivorNet experts.
- A feeling of bloating or fullness
- Pain in the pelvis or abdomen
- Changes in bowel habits
These can be similar to symptoms many women experience monthly with their menstrual cycle, which makes finding this cancer so difficult.
Many ovarian cancers begin in the fallopian tubes. A few cancerous cells first grow on the fallopian tubes and then, as the fallopian tubes brush over the ovary, these cells stick to the ovaries and eventually grow to form a tumor.
Expert Ovarian Cancer Resources
- The Anatomy of Ovarian Cancer
- Is There Screening for Ovarian Cancer?
- Genetic Testing Can Help Guide Ovarian Cancer Treatment Decisions
- The Different Kinds of Ovarian Cancer
- Ovarian Cancer Diagnosis: The Importance of Biomarkers
- Managing An Ovarian Cancer Recurrence: How The New Drug Elahere Is Providing Hope
A few factors might increase the risk of ovarian cancer. Having these factors doesn’t mean you will get this cancer, only that your risk is slightly higher.
Your risk for ovarian cancer may be increased if you:
- Have gone through menopause. Ovarian cancer is rare in women younger than 40.
- Have a gene mutation. The BRCA1 and BRCA2 genes help cells repair their DNA damage. Having a change, or mutation, in one of these genes increases your risk of getting ovarian cancer. These gene mutations are commonly passed down in families.
- Are overweight or obese. Being very overweight might not only affect your risk of getting ovarian cancer but also your survival if you are diagnosed.
- Had your first pregnancy after age 35, or never carried a pregnancy to full-term. Of course, this doesn’t mean that women should have children just to protect themselves.
- Have family members with cancer. Your risk might be higher if you have close family members who have had ovarian, breast, or colorectal cancer.
- Used hormone replacement therapy. Women who take estrogen and progesterone after menopause are at slightly higher risk than women who don’t use these hormones.
No routine screening tests are recommended for women who are at average or low risk for ovarian cancer. Since symptoms can be subtle and hard to distinguish from everyday ailments like a stomach bug, SurvivorNet’s medical experts say women need to know their family history, be vigilant for symptoms, and ask their doctor for testing if they have any unusual or persistent symptoms.
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.
Questions for Your Doctor
If you find yourself considering seeking a second or third medical opinion, here are some questions to kickstart the conversation with your doctor:
- Is there any other testing available for the type of cancer I have?
- Are there any other treatment options available for my type of cancer?
- Why or why do you not recommend those other options?
- I would like to seek a second opinion on my diagnosis and treatment options. Is there another doctor or facility you recommend?
- Do you want the second opinion to be sent to you?
- Can I have a copy of all my records that I can share with this second physician?
Understanding Fertility Preservation
“When a woman is diagnosed with cancer in her childbearing years, fertility preservation should be a part of the conversation, like it’s part of the treatment plan,” Jaime Knopman, MD, a reproductive endocrinologist at CCRM Fertility in New York City, previously told SurvivorNet. “Everyone in their reproductive years should be advised of their options.”
Some types of chemotherapy can destroy eggs in your ovaries. This can make it impossible or difficult to get pregnant later. Whether or not chemotherapy makes you infertile depends on the type of drug and your age, since your egg supply decreases with age.
“The risk is greater the older you are,” Knopman explained. “If you’re 39 and you get chemo that’s toxic to the ovaries, it’s most likely to make you menopausal. But, if you’re 29, your ovaries may recover because they have a higher baseline supply.”
If your cancer treatment includes surgery in which both ovaries are completely removed, then IVF will likely be needed to help get pregnant.
Radiation to the pelvis can also destroy eggs. It can damage the uterus, too. Surgery to your ovaries or uterus can hurt fertility as well.
Meanwhile, endocrine or hormone therapy may block or suppress key fertility hormones and may prevent a woman from getting pregnant. This infertility may be temporary or permanent, depending on the type and length of treatment.
If you are having a treatment that includes infertility as a possible side effect, your doctor won’t be able to tell you for sure whether you will have this side effect. That’s why you should discuss your options for fertility preservation before starting treatment.
Research shows that women who have fertility preservation prior to breast cancer treatment, in particular, are more than twice as likely to give birth after treatment than those who don’t take fertility-preserving measures.
Options For Preserving Your Fertility Before Cancer Treatment
Most women who preserve their fertility before cancer treatment do so by freezing their eggs or embryos.
After you finish your cancer treatment, a doctor who specializes in reproductive medicine can implant one or more embryos in your uterus, or the uterus of a surrogate, with the hope that it will result in pregnancy. If you freeze eggs only before treatment, a fertility specialist can use sperm and your eggs to create embryos in vitro and transfer them to your uterus.
When freezing eggs or embryos is not an option, doctors may try these less common approaches:
- Ovarian tissue freezing, an experimental approach for girls who haven’t yet reached puberty and don’t have mature eggs or for women who must begin treatment right away and don’t have time to harvest eggs.
- Ovarian suppression to prevent the eggs from maturing so that they cannot be damaged during treatment.
- Ovarian transposition, for women getting radiation to the pelvis, to move the ovaries out of the line of treatment.
In addition to preserving eggs or embryos, positive research has shown that women with early-stage hormone-receptor (HR) positive breast cancer were able to pause endocrine therapy to try to get pregnant, and they did not have worse short-term recurrence rates than people who did not stop ET (endocrine therapy). In the study from the Dana-Farber Cancer Institute, most of those people who paused ET were able to conceive and deliver healthy babies.
Of course, your doctor will be able to help you understand your unique circumstances and which path, such as pausing endocrine therapy, is right for you.
Contributing: SurvivorNet Staff