Advocating for Your Health Means Watching Out for Symptoms, Pushing for Clear Answers
- A mom of four says she’s dealt with a suspicious lump on her head for 20 years. Despite her doctors telling her not to worry about it, a concerned hairdresser urged her to get a second opinion from a different doctor, leading to a rare cancer diagnosis.
- She was diagnosed with dermatofibrosarcoma protuberans. This type of cancer is painless, skin-colored, slow-growing. According to research published in the Journal of Clinical Medicine, it is a low to intermediate-grade dermal soft tissue tumor. Surgery is the standard treatment for this type of tumor.
- When you see a doctor for a problem, don’t hesitate to ensure 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.
- Seeking a second or third opinion on your diagnosis and treatment plan is another way to advocate for your health and ensure you get the treatment you need.
- SurvivorNet offers questions you can ask your doctor if you seek another opinion on your diagnosis or treatment plan.
A mom of four says a lump on her head existed for 20 years before learning it turned out to be cancerous. Adding to Kylie Barlett’s frustration, her doctors told her not to worry about it throughout the decades until a worried hairdresser urged her to get another opinion.
“I was terrified,” Barlett, 47, told the U.K. news outlet “The Sun.”
Read More“I was scared I might die and not get to see my husband, Sean, and our four children anymore,” she continued.
Surgery is the standard treatment for this type of tumor, which includes a wide local excision (WLE) with tumor-free margins, Mohs micrographic surgery (MMS), and amputation.
WATCH: What Is Mohs Surgery?
Mohs micrographic surgery (MMS) is a microscopically controlled procedure that removes skin cancer by conservatively cutting along the entire margin until the surgeon reaches clear tissue. It’s commonly used to remove other skin cancers, such as basal and squamous cell carcinomas.
During the procedure, your doctor will numb the area with anesthesia and remove the tumor using a scalpel. You’ll be asked to wait while they analyze layers of the removed sample under a microscope. The procedure is done one layer at a time, examining each layer for cancer cells before removing the next layer.
This process continues until all cancer cells are removed from the area. Once the surgery is complete, your doctor will cover the area with a bandage. Stitches may also be required.
While Mohs surgery isn’t as common with melanoma as it is with other skin cancers, it may be the best option for some patients.
Expert Advice for Advocating for Your Health
Following Your Gut, the Value of a Second Opinion
Barlett said she trusted her doctors despite noticing the bump on her head “getting bigger.”
“Detecting the cancer when I did saved my life, as it’s given me more time,” Barlett said.
When you see a doctor for a problem, don’t hesitate to ensure that your questions are 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.
“It’s important for you to actually educate yourself and be your own health care advocate,” colorectal surgeon Dr. Zuri Murrell previously told SurvivorNet.
“You should lead each doctor’s appointment with a plan,” Dr. Murrell adds.
In addition to ensuring that you and your doctor agree about your diagnosis and potential treatment, seeking other opinions is equally important.
Doctors do not always agree about whether your symptoms merit further testing and whether specific treatment methods work best for you.
Dr. Steven Rosenberg, chief of surgery at the National Cancer Institute and one of America’s most renowned cancer doctors, agrees.
“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 because finding a doctor who is up to the latest information is important,” Rosenberg previously told SurvivorNet.
“It’s always important to get other opinions so that you can make the best decisions for yourself in consultation with your care providers,” Dr. Rosenberg continued.
Also, asking your doctor additional questions helps ease the initial shock and anxiety associated with a new diagnosis.
“I think it’s really important for them to be able to hear it multiple times and take notes,” said Dr. Heather Yeo, a colorectal surgeon at Weill Cornell Medicine.
“I support second opinions. I actually think it’s really important. I mean, if you think about it in life, how do you choose someone to cut your hair? You get an opinion, right? You usually don’t just go in and sit down with the first person you see on the street and say, cut my hair. You ask around,” Dr. Yeo added.
Dr. Yeo also suggests turning to family and friends or finding a support group to help you begin your cancer journey.
After Barlett’s experience, she says she wants people to know “the importance of getting any lumps checked and asking for a second opinion,” noting it helped save her life.
Reasons to Consider a Second Opinion
Here are some possible reasons to get a second opinion.
- 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 sound advice.
- You have trouble understanding your doctor.
- You don’t like the treatment your doctor recommends or are 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
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 want 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 to share with this second physician?
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