Advocating for Your Health as a Woman
- Laura Landry-Rudolph struggled with rashes for four years before her cutaneous T-cell lymphoma diagnosis. Over the years, doctors thought she was simply struggling with rashes or chafing.
- Now, she wants others to learn from her story and “advocate for yourself and be persistent in getting the answers that you deserve.”
- Lymphoma is a cancer of the immune system, but there are many different types of the disease. Landry-Rudolph’s cancer, cutaneous T-cell lymphoma (CTCL), is a type of non-Hodgkin lymphoma where the T cells (a type of white blood cell called T lymphocytes) develop abnormalities that make them attack the skin, according to the Mayo Clinic.
- Symptoms of CTCL can include round patches of skin that may be raised or scaly and might be itchy, patches of skin that appear lighter in color than surrounding skin, lumps that form on the skin and may break open, enlarged lymph nodes, hair loss, thickening of the skin on the palms of the hands and soles of the feet and a rash-like skin redness over the entire body that is intensely itchy.
- Being your own advocate can be a key to getting a correct diagnosis and obtaining the best treatment possible. One of our experts says you have to advocate for your health because not everyone will "fit into" the same mold.
Landry-Rudolph’s battle with lymphoma (a cancer of the immune system) began during her first pregnancy when she developed a reddish-purple rash. A trip to the family doctor led to some cream prescriptions, but nothing more came of the appointment.
Read More"Then I knew in my gut that something is not right," she explained.
Sadly, she said "multiple" doctors told her she was simply struggling with chafing or dealing with eczema a skin condition that causes dry and itchy patches of skin. Landry-Rudolph tried to see a dermatology specialist, but a wait list kept her waiting for over a year. Thankfully, she said a "miracle" occurred when she called to check on the wait list.
"Hadn't I made that call that day myself, I wouldn't be in treatment right now," she said, explaining that a recent cancellation got her in sooner. "When I went up to see the specialist, he took one look at me and said, 'This is not something we see every day.'
“So in that moment, I was distraught. I had my mother with me. I was scared, I said, 'I have babies. I'm a young mother, I'm 32 years old.”
A blood blister grew on her hip during the time she waited for biopsy results. But after four years of seeking answers, she was finally diagnosed with cutaneous T-cell lymphoma.
She’s now undergoing treatment that could last up to six months, but she’s sharing her story to encourage people to fight for answers when something seems off.
"You know your body, you trust your gut. And my message, simply, is you have to advocate for yourself and be persistent in getting the answers that you deserve," she said. "If it wasn't for me asking, I probably never would have gotten this diagnosis.
"My message here is not to belittle any physicians at all, whatsoever. But, if you notice something on your body, you listen to your gut and you push to get the answer."
What Is Cutaneous T-Cell Lymphoma?
Lymphoma is a cancer of the immune system, beginning in the white blood cells called lymphocytes. They develop a genetic mutation that makes them multiply much faster than normal. This, in turn, forces older cells that would normally die to stay alive. Then, the quickly multiplying lymphocytes build up in your lymph nodes the small glands in your neck, armpits and other parts of your body.
What Kind of Lymphoma Do You Have? Why Your Type Matters
There are many different varieties of lymphoma, so it’s important to know your specific type. Hodgkin lymphoma and non-Hodgkin lymphoma are the main two sub-categories with the latter being more common.
“One of the best ways to wrap your head around lymphoma is to start thinking about the different ways we categorize lymphoma and how we, as doctors, approach lymphoma because it really helps to better understand the literature and better understand what you should specifically be reading about,” Dr. Elise Chong, a medical oncologist at Penn Medicine, previously told SurvivorNet. “I always advise that people understand their specific type of lymphoma because there are over 40 different types of lymphoma.
“So, if you don’t know what specific type you have, then you may be reading the wrong literature on that treatment.”
Laura Landry-Rudolph’s cancer, cutaneous T-cell lymphoma (CTCL), is a type of non-Hodgkin lymphoma where the T cells (a type of white blood cell called T lymphocytes) develop abnormalities that make them attack the skin, according to the Mayo Clinic. Several types of CTCL exist, and some progress slowly while others are more aggressive. Your specific diagnosis can help determine the appropriate treatment path for you.
Sneaky Lymphoma Symptoms Often Lead to a Late Diagnosis
According to the Mayo Clinic, signs and symptoms of CTCL include:
- Round patches of skin that may be raised or scaly and might be itchy
- Patches of skin that appear lighter in color than surrounding skin
- Lumps that form on the skin and may break open
- Enlarged lymph nodes
- Hair loss
- Thickening of the skin on the palms of the hands and soles of the feet
- A rash-like skin redness over the entire body that is intensely itchy
These symptoms are not exclusive to CTCL, but you should always consult your doctor if you experience them or any other concerning changes to your health. You never know when a seemingly benign condition could lead to a very serious diagnosis.
Always Advocate for Your Health
Laura Landry-Rudolph’s story is, sadly, not the first of its kind. We’ve heard many women talk about their traumatic experiences with symptom dismissals and misdiagnoses, so we’ve made it our mission to ensure these first-hand accounts aren’t shared in vain.
I Wanted My Doctor To Like Me, Then He Missed My Breast Cancer
In a previous interview with SurvivorNet, April Knowles said her doctor dismissed the lump in her breast as a side effect of her menstrual period. She was later diagnosed with metastatic breast cancer at age 39.
“I think women, especially young women, are really used to being dismissed by their doctors,” she said. “I think a lot of patients don’t want to hurt their doctor’s feelings either. We really do want our doctors to like us.
“But you have to take charge. You have to learn about your disease. You have to ask questions… And even if you can get your doctor to do a second opinion over the phone somewhere just to get the peace of mind that you’re on the right track, I think it’s very helpful.”
Be Pushy, Be Your Own Advocate… Don't Settle
Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, would agree with Knowles. He says the problem with healthcare guidelines is that they 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 previously told SurvivorNet.
Not every patient will "fit into" the mold, according to Dr. Murrell, so it's crucial 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 said. "And I think that that's totally fair. And me as a health professional that's what I do for all of my patients."
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