Being Proactive with Medical Checkups & Seeking Multiple Opinions
- Legendary tennis star Serena Williams’ husband Alexis Ohanian, 41, decided to remove “nodules” in his thyroid prophylactically because the “suspicious” growth were “very likely turn cancerous,” he revealed in a social media post this week.
- Remember, when you see a doctor for a problem, don’t hesitate to make sure that your questions are fully answered and that you are comfortable with the plan moving forward. By doing this, you are advocating for your health, and it’s something we’re glad to see Ohanian has done.
- Seeking a second or third opinion for your diagnosis and treatment plan is another aspect of advocating for your health and making sure you get the treatment you need.
- Additionally, genetic testing can help predict an individual’s cancer risk by looking at inherited gene mutations. These results can provide potentially life-saving information for patients who test positive for known mutations and who then can undergo preventative screenings or specific treatments for cancer.
Ohanian, co-founder and former executive chairman of social media website Reddit, took to Instagram to go public with his recent health scare, sharing a photo of himself in a hospital bed with a scare on his neck, alongside two photos of his daughters, Olympia and Adira.
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Expert Resources On Genetic Testing
He continued, “I wasn’t gonna take any chances; the surgery was smooth and I’m extra grateful this Thanksgiving because I got the call this morning that my now-removed-half-of-thyroid was indeed full of some gnarly nodules that were very likely to become cancerous.
“The worst part tbh [to be honest] has been not being able to lift for 2 weeks but big fella will be back at it next week and I took my girls to Disney World this week so life is wonderful.”
Ohanian concluded with a warning to his “fellow, men,” writing, “Make those doctor’s appointments — especially if y’all are dads. Happy Thanksgiving, everyone.”
His health announcement comes shortly after his wife underwent a surgical procedure to remove a “small grapefruit”-sized benign cyst from her neck about five months after she first discovered the lump.
Williams, who was previously ranked as the No. 1 in singles in the world by the Women’s Tennis Association (WTA) for 319 weeks, also took to social media to inform her fans about getting the brachial cyst removed. Thankfully, she appears to be recovering well.
Although she doesn’t specify whether it’s specifically a branchial cleft cyst, according to John Hopkins Medicine a branchial cleft cyst “is a lump that develops in the neck or just below the collarbone.”
She and her husband also celebrated their 7th wedding anniversary on November 16, with a sweet post on Instagram, featuring a family photo from Halloween.
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“7 years has gone so fast… Happy anniversary @alexisohanian thank you for being the best dad to our girls @olympiaohanian and @adiraohanian,” Williams captioned the post.
“Thanks for also making average November day a costume party and making it special.”
Evaluating Cancer Risk
Genetic tests can be as simple as a simple saliva swab or blood sample. The results help your care team determine if you have a specific mutation that puts you at higher risk for cancer.
“It started out with a very narrow field of women and men who were recommended to have it based on certain risk factors, family history of breast cancer, or other cancers, and also ethnic backgrounds,” Dr. Elisa Port, a surgical oncologist at Mount Sinai, previously told SurvivorNet.
Genetic testing for cancer is usually done in a doctor’s office (either your primary care doctor or an OB-GYN, but there are a few tests available for people to purchase commercially.
The National Comprehensive Cancer Network (NCCN) recommends testing only select patients with risk factors for hereditary breast cancer. These include but are not limited to patients who were younger than 45 years old when they were diagnosed with breast cancer, those with a strong family history of this cancer, and those with Ashkenazi Jewish heritage. The American Society of Breast Surgeons (ASBrS) recommends offering genetic testing for all patients diagnosed with breast cancer.
Where can you get help after undergoing genetic testing?
“If someone gets a genetic test result back, it’s really important for them to know what this is. (What does this) mean for them? Put it into context,” Dr. Elisa Port, a surgical oncologist at Mount Sinai, previously explained to SurvivorNet.
Genetic counselors help patients during this critical phase of understanding.
“What does it mean for their family members? For their relatives? Genetic counseling to follow up genetic testing is a really, really important part of the whole process and is not always available in the direct-to-consumer type avenue.”
According to the U.S. Centers for Disease Control and Prevention, your doctor can refer you for genetic counseling based on your personal and family health history.
Understanding Genetic Testing
The most common gene mutations are the BRCA1 (BReast CAncer gene 1) and BRCA2 (BReast CAncer gene 2) mutations. It’s important to note that if a parent carries a BRCA gene mutation, there’s a 50-50 chance you could be carrying it too.
Dr. Julie Rani Nangia, an assistant professor at Baylor College of Medicine, previously told SurvivorNet about 10 percent of patients who undergo genetic testing will test positive for the BRCA1 or BRCA2 gene, but an additional 5 to 6 percent will test positive for other genes.
Other gene mutations that can lead to inherited breast cancer outside of PALB2 and the BRCA genes include ATM, TP53, CHEK2, PTEN, CDH1 and STK11. These gene mutations, however, are much less common and most of them don’t increase the risk of breast cancer as much as the BRCA and PALB2 mutations.
And for cancers like pancreatic and ovarian cancer that can have very hard to spot symptoms, genetic testing can sometimes lead to an earlier diagnosis which generally means better treatment outcomes. Dr. Anirban Maitra, the co-leader of the Pancreatic Cancer Moon Shot at MD Anderson Cancer Center, previously told SurvivorNet that the prognosis for pancreatic cancer is not always good.
“By the time individuals walk into the clinic with symptoms like jaundice, weight loss, back pain or diabetes, it’s often very late in the stage of the disease,” Dr. Maitra said. “And, unfortunately, most will die from this disease within a few months to a year or so from the diagnosis.”
RELATED: Explore SurvivorNet’s digital guide to next-generation sequencing for breast cancer.
But genetic testing can provide people with greater knowledge to work with when considering their risk for the disease.
“If you’re concerned about pancreatic cancer in your family, start by talking to a genetic counselor to learn more about your risk and what options you have,” Jessica Everett, a genetic counselor at NYU Langone’s Perlmutter Cancer Center, said.
Genetic testing can be used in cases like Sunlen Serfaty’s for preventative measures, but it can also be very helpful in navigating treatment options after a cancer diagnosis. With ovarian cancer, for example, BRCA 1, BRCA 2, PALB2, ATM gene mutations can point doctors toward PARP inhibitors which work by preventing cancer cells from repairing their own damaged DNA.
“Certain individuals with ovarian cancer, if they proceed with genetic testing and they test positive in specific genes, they might benefit the most from having PARP inhibitor medicine prescribed for them as treatment for their ovarian cancer,” says Lauren Mills, a genetic counselor at UT Health San Antonio, adding that women who test negative for mutations in these specific genes may also benefit from PARP inhibitors.
Overall, genetic testing can be a great way to better understand your risk of developing certain cancers as well as best potential treatment options if you’ve been diagnosed with a certain cancer.
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.
Be Pushy, Be Your Own Advocate, Don’t Settle
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.
RELATED: Close the Gap: Racial Disparities in Cancer Care Are Devastating Let’s Change Things
Additionally, 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 added. “And I think that that’s totally fair. And me as a health professional that’s what I do for all of my patients.”
The Importance of Getting a Second Opinion
After receiving a diagnosis, like cancer, 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.”
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.
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.
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
Contributing: SurvivorNet Staff
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