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How to advocate for your health during a cancer diagnosis

Plus, tips from a doctor

While there is no certain way to prevent cancer, there are certain risk factors that increase the probability of it. About 10 years ago, Wellmark Blue Cross and Blue Shield network administration analyst Teresa Russo-Dyer found out just how quickly one phone call can change everything. She was at work when a nurse called and said, “You have cancer, and we’re sending you to a general surgeon.”

Asking the right questions

Not knowing what else to do, Russo-Dyer went to see a general surgeon who did a lumpectomy, which is surgery to remove cancer or abnormal tissue from the breast. Unfortunately, due to the extent of her disease they couldn’t remove all the cancer.

“I had already gone through one surgery and now I had to do it all over again,” said Russo-Dyer.

She found out that it is so important to be your own health care advocate, to do the research and ask a lot of questions about what is going on with your body. She encourages patients to ask practices or medical facilities to share a copy of their health records, which can be given out in the office or by mail.

A relationship with your health care provider can help you advocate for your health

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“The doctor’s medical records can often tell you more information than a test result,” said Russo-Dyer. “After my second surgery I had fluid in the breast, and after they extracted it out, I could not lift my arm above my head. The general surgeon told me to rub my arm, but after doing some research I thought it could be lymphedema.”

Lymphedema is swelling in an arm or leg, most likely caused by lymph node removal or damage due to cancer treatment. Fortunately, lymphatic cording usually resolves for most people after a few therapy sessions, or at least within a few months.

Wellmark medical director Dr. Barbara Muller, MD, encourages patients to read and understand as much as they can, while keeping in mind that everyone has a different experience. “It’s good to be informed and have education about what to expect,” she said. “However, this should be a collaborative experience. A primary care physician should act as a home for patient information, which means it is very important to do regular checkups and preventive maintenance to catch things early.”

Taking the next step

After Russo-Dyer talked to her oncologist, they agreed that she should go to a lymphedema clinic, there she was able to get the cording in her arm under control. She continued her research and found the MercyOne Katzman Breast Center and started lymphatic therapy, which gave her the peace of mind she needed to heal.

“Before having any surgery have the doctor explain everything to you,” said Russo-Dyer. “Ask what happens if you can’t get all the cancer, what the time frame for going back to work is, if they have to take the lymph nodes and what happens if they do, etc. I learn something new all the time and have found it’s so important to take accountability for decisions related to my health.”

Tips to be a better health care advocate

    1. Don’t be afraid to ask questions

      Your doctor and health insurance company can answer questions about your benefits, treatment side effects, Advanced Care nurses available through your plan and disadvantages of recommended procedures. Prepare for your doctor’s appointment by making a list of questions and prioritize them ahead of time.

    2. Understand your health insurance benefits

      Managing health benefits is easier with myWellmark® Secure Site. The personalized, secure website lets you track expenses, learn more about ways to improve your wellness and provides tools to help you reach your goals. myWellmark can help you learn more about how your health insurance works to help you navigate the health care system.

    3. Research and learn more about your condition and potential treatment options

      The more you know, the better you can advocate for your well-being and get needed support. The American Cancer Society® External Site, U.S. Preventive Services Task Force (USPFTF) Guidelines External Site, Medical Services and Preventive Care Guidelines from your doctor are all great resources. Bring any important information to your appointment for discussion.

    4. Keep tabs on your own medical records

      If your health care provider has a patient portal, you can view previous appointments, test results, and track prescriptions you've been prescribed. There are even convenient apps, like Apple Health, that allow you to keep your medical records on your phone and at your fingertips.

    5. Get a second opinion

      A good doctor will welcome confirmation of their diagnosis and would not discourage their patient from learning more or addressing concerns.

    6. Review your medical bills

      Make sure you review your itemized medical bills or the explanation of benefits statements for health care services and accurate billing. If for any reason your concerned, you can hire a local medical billing advocate or service for support.

    7. Know your rights at work

      Most organizations comply with the Americans with Disabilities Act (ADA) and the Americans with Disabilities Act Amended (ADAAA) and provide reasonable accommodation(s) to qualified employees with a disability so they can perform the necessary functions of a job.

    8. Bring a significant other, another family member or a friend with you to your appointments, if possible

      Sometimes patients may not hear or remember everything the doctor says because emotions can take over. Having someone with you can help you feel less isolated when talking about the diagnosis. 

Dr. Muller encourages patients to understand everything they can about their diagnosis. “Ask what the treatment is, next steps and try to understand the bare facts,” she said. “Dialogue is extremely important and sometimes reading things online can be a double-edged sword. Make sure to talk to your doctor so they can help to put things into context.”

“It’s time to be your own health care advocate!” said Russo-Dyer. “By getting involved in the decision-making process with your doctors or surgeons, you can feel more confident about their course of treatment.”

It has been 10 years since her breast cancer diagnosis and Russo-Dyer’s mammograms have been normal. She still gets lymphedema in her armpit, ribcage and hand but she uses compression sleeves, glove and an at-home lymphedema machine . For additional preventive measures, Russo-Dyer has also started paying more attention to her diet than ever before.

“My hospital has a program that is called Meals That Matter at Home,” she said. “The program provides cancer survivors a weekly fruit and vegetable bin for four weeks, along with plant-based recipes and tutorials. I can tell the difference in my body now when I’m eating healthier. I try to keep focused on exercising, being healthy and all positive things I can be grateful for.”

Practice prevention and understand breast tissue density

Because cancer has had such an impact on her life, the last three years Russo-Dyer has volunteered with friends — who happen to be doctors and breast cancer survivors — for the Iowa Army of Pink External Site. The Iowa Army of Pink has done some legal-focused work around breast tissue density. In 2015 the group lobbied legislators to require health care providers to let women know if they have dense breast tissue, and won. Now breast cancer patients can consider having an ultrasound in addition to a yearly mammogram.

Regular mammograms are the best way to find breast cancer early. If your mammogram report says that you have dense breast tissue, it’s important to know what that means. Breast density is a measure of fibrous and glandular tissue in your breast, as compared to fat tissue. It isn’t related to breast size or firmness.

All health care providers send a letter to patients showing their letter of density: A, B, C or D. Pay attention to your level of density if you are a C or D because you may need to follow up with an MRI or CT scan.

Dense (fibrous and glandular) breast tissue looks white on a mammogram and breast masses and cancers can also look white, so dense tissue can make it harder to find masses. In contrast, fatty tissue looks almost black on a mammogram, so it’s easier to see a tumor that looks white if most of the breast is fat tissue.