Mom, 31, Felt “Icky” For Years. Dismissed by Her Doctors But Persistence Led to a Blood Cancer Diagnosis

Benjamin was just 31 at the time of her diagnosis. She said she spent 18 months trying to figure out what was wrong with her.

“You are the only one who knows your body and if it feels icky. If your GP isn’t listening, find someone who will,” Benjamin said.

She found herself suffering from chronic fatigue, itchy skin, night sweats, and a persistent cough. She first thought her symptoms were the result of a seafood allergy or cold.

“I was so used to always being a bit icky and tired that I had started to believe that this is how I would always feel…I was having sweats at night and always felt a bit crappy, but otherwise, I appeared quite healthy. My body was sending me all the signs, but I didn’t yet know how to listen and trust it,” she explained.

Adding to Benjamin’s confusion was her doctor’s persistence that nothing was seriously wrong.

“The doctors were telling me I was fine, that perhaps I was just ‘stressed’ and needed to rest more,” she said.

Then after explaining how she had been feeling to her mom, her journey for answers took a turn. Her mom’s friend previously died from blood cancer but experienced similar symptoms. Her mom called her daughter’s doctor and pushed for a test to see if that was what Briony was dealing with.

Further tests helped lead Benjamin to an accurate diagnosis. She was told she had Hodgkin lymphoma, a type of blood cancer.

Lymphoma is a cancer of your immune system. It starts in the lymphatic system, a network of vessels, ducts, and nodes that runs throughout your body.

This system drains excess fluid and waste from your tissues and drains them into your bloodstream. It also produces disease-fighting white blood cells called lymphocytes that defend your body against infections.

“I always advise that people understand their specific type of lymphoma because there are over 40 different types,” Dr. Elise Chong, medical oncologist at Penn Medicine, told SurvivorNet.

There are two main types of lymphoma – Hodgkin and non-Hodgkin. Hodgkin lymphoma has distinctive, giant cells called Reed-Sternberg cells. The presence of these cells, which can be seen under a microscope, will help your doctor determine which of the two lymphoma types you have.

After her diagnosis, Benjamin readied herself for treatment which took more of a toll on her mentally and physically than she expected, but the resilient 31-year-old was undeterred.

Benjamin’s long blonde hair began to fall out as she began cancer treatment.

“I was told that it was okay to sit and cry on the couch all day, but after that, you’ve got to get back up,” she said.

“For cancer patients losing one’s hair can be unbelievably stressful. To start with, the dread of losing one’s hair can lead to, some sleepless nights and feelings of anxiety,” Dr. Samantha Boardman, a New York-based psychiatrist and author, told SurvivorNet.

Chemotherapy can cause hair loss. It usually begins about three to four weeks after beginning chemotherapy and continues throughout treatment.

WATCH: Hair loss during chemotherapy.

Fortunately, most patients can expect regrowth around four to six weeks after they complete treatment. However, it is possible when your hair grows back you may notice some changes in its color and texture.

To help Benjamin cope with her ongoing treatment, she shared her cancer journey online through photos and videos. She started receiving support from other people online which boosted her spirits. After three months of treatment, Benjamin finally got some good news.

“I was in total shock – my scan was clear,” she said.

She was able to wrap up her cancer treatment six weeks early. She continued to get regular checkups to ensure the cancer hadn’t returned and now five years later at age 36, she received more good news.

“In cancer-land, five years means no more check-ups,” Benjamin said.

Adding to her excitement, she’s on the verge of having a baby boy soon which is something she thought may not be possible upon her cancer diagnosis. She even froze her eggs just in case her cancer treatment caused her to become infertile.

RELATED: Motherhood after cancer.

“It is such an amazing thing,” Benjamin said.

Understanding the Rick Factors for Lymphomas

Lymphomas are among the three main types of blood cancers. The other main types include leukemia and myeloma. They generally start from the same kind of blood cell but differ in symptoms and severity.

Lymphomas can be tricky because there are no screening tests for this kind of disease. However, lymphomas do present symptoms. The most common symptoms include:

• Swollen glands in your neck, armpit, or groin
• Fever
• Chills
• Night sweats
• Weight loss without trying
• Feeling tired
• Swelling in your belly

“The patients who are diagnosed with lymphoma early, typically it’s luck,” medical oncologist Dr. Elise Chong said.

Patients diagnosed early may have presented a symptom prompting a doctor check-up. A scan result or blood test can also lead to a diagnosis as was the case with Benjamin.

Risk factors for lymphomas exist which can increase your chances for this cancer. The risk factors include:

• Have been infected with the HIV or Epstein-Barr virus
• Had an organ transplant
• Have a family history of lymphoma
• Have been treated with radiation or chemotherapy drugs for cancer in the past
• Have an autoimmune disease

Doctors confirm a lymphoma diagnosis first by asking about your symptoms and risk factors. Then you’ll have a physical exam, looking for swelling in your lymph nodes and belly. Your doctor will try to rule out other causes, such as an infection, which may require that you get a blood test.

The only way to confirm that you have lymphoma is with a biopsy — which involves removing a small piece of a lymph node for testing. Typically, your doctor won’t do it unless he or she has a strong suspicion that you have lymphoma.

You might also need imaging tests such as an x-ray, computed tomography (CT), magnetic resonance imaging (MRI), or positron emission tomography (PET) scan to find out what’s causing your symptoms, and if you do have lymphoma, to determine its stage.

Chemotherapy is the main course of treatment for Hodgkin’s Lymphoma and in some cases, radiation may also be used according to the National Cancer Institute. Some patients may be treated with immunotherapy or with a stem cell transplant, mainly if other treatments were unsuccessful. Surgery, not including biopsy and staging, is also rarely used to treat this disease.

Advocating for Your Health

Patients advocating for their health can lead to better patient outcomes. This is especially important when you find your doctor has misdiagnosed your symptoms. Fortunately, Benjamin continued to push for answers despite being told she just needed rest by her doctor.

A component of advocating for yourself in healthcare includes going back to the doctor multiple times and even getting multiple opinions.

Dr. Steven Rosenberg is the National Cancer Institute Chief of Surgery, and he previously told SurvivorNet about the advantages of getting input from multiple doctors.

WATCH: The value of getting multiple opinions.

“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 of information is important,” Dr. Rosenberg said.

Questions for Your Doctor

If you find yourself experiencing unusual symptoms such as a lingering cough or a part of your body that is painful to touch, these are things you should bring to your doctor’s attention.

Here are some takeaways to think about when talking to your doctor.

• Are you experiencing pain or fever that won’t go away?
• Are you gaining or losing weight unexplainably?
• Have you discovered any bumps, spots on your skin, or lumps on parts of your body that cannot be explained?
• Are you struggling to get a good night’s rest?
• Are you noticing changes in your bathroom habits such as blood in your urine or stool?

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