Advocating for Your Health
- Last March, Jennifer Cunningham, a nurse from Pembroke Pines, Florida, spotted a sudden difference in her husband Chris’s eyes and urged him to get in to see a doctor. It wound up being a rare type of lymphoma in his eye socket.
- After an agonizing 8 months, the college administrator, 48, said he felt relieved to finally find out what was going on, as many cancer survivors say the unknown can be more challenging than the actual diagnosis.
- Until an effective screening test becomes available, you can increase your odds of finding lymphoma early by knowing whether you’re at risk, and staying alert for symptoms. Though Chris’s initial symptoms were more unusual, it’s a reminder to always get in and get checked, and don’t stop seeking out opinions until you get to the bottom of your health condition.
From the time she noticed one eye more swollen than the other, however, it took an agonizing eight months to receive his diagnosis.
Read MoreThe couple’s first stop was an optometrist, who thought it could be a sinus infection, so then they booked an appointment with an ENT, an ear, nose and throat doctor. The ENT ordered an MRI and recommended an ophthalmologist.
After more testing, Chris learned he needed to get the lump surgically removed, then finally found out what caused the mass. A type of non-Hodgkin lymphoma called MALT lymphoma, an acronym for mucosa-assisted lymphoid tissue, according to Cleveland Clinic.
Most lymphomas start in the lymph nodes — this began in the tissue, and is known as a non-gastric MALT. A gastric MALT begins in the lining of the belly, Cleveland Clinic notes.
Chris lost his father to lymphoma when he was just seven years old, but he said he had a different type of the disease.
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Though receiving the diagnosis was difficult, Chris said he felt “a bit of relief” that he at least knew what was going on, as the “not knowing,” as many survivors and people with other challenging health conditions can attest to, can be the worst part.
“The surgeon had to go through my eyelid,” Chris explained of having half of the tumor removed, which is when they were able to perform a biopsy and finally know what was going on.
“My wife and I had discussed that, so it wasn’t a huge surprise,” Chris shared. “But it took a while to diagnose.”
Treatment Methods for Non-Hodgkin Lymphoma
Although it is unclear what Chris’s specific treatment plan was, the typical treatment regimen for non-Hodgkin lymphoma involves a combination of three chemotherapy drugs, a monoclonal antibody, and a steroid drug, which doctors call R-CHOP. Yet chemotherapy isn’t the only treatment approach available to people with this cancer. Radiation — a treatment that uses high-energy x-rays to damage the DNA inside cancer cells — also has an important place in therapy for those with certain slow-growing forms of this blood cancer.
Non-Hodgkin lymphoma is a biologically diverse group of cancers, and there are a lot of different treatment approaches based on the specific type of lymphoma someone has, Dr. Chelsea Pinnix, radiation oncologist at MD Anderson Cancer Center, tells SurvivorNet.
Non-Hodgkin Lymphoma Treatment & Symptoms
“In general, we like to think of indolent versus more aggressive lymphomas,” she says. Aggressive lymphomas such as diffuse large B-cell lymphoma grow quickly and need more intense treatment to stop them from spreading. Indolent lymphomas are much slower growing, so doctors approach them with a different treatment strategy. Radiation is often part of the treatment plan — and sometimes it’s the only treatment needed.
“For indolent lymphomas like follicular lymphoma or marginal zone lymphoma, radiation can be effective with only two doses of treatment,” Dr. Pinnix says. Radiation offers good results with fewer side effects than chemotherapy. And for early-stage cancers that are confined to a small area of the body, radiation can cure the disease, even when given at low doses.
‘Boom-Boom’ Radiation for MALT Lymphoma
Doctors once gave their patients high doses of radiation in the hope that it would produce a greater response. Yet there has been a shift in recent years away from high-dose radiation to much lower doses. Doctors measure radiation in units called Gy (pronounced “gray”), which represents the total amount of radiation a person’s tissues absorb from treatment. The dose is further divided into units known as fractions.
For a patient with an indolent non-Hodgkin lymphoma, typically the doses used are 24 Gy for standard treatment and 4 Gy/2 fractions for palliation (symptom control), Dr. Pinnix explains. Doctors refer to the 4Gy/2 fraction dose by the nickname “boom-boom.”
Dr. Chelsea Pinnix Explains ‘Boom-Boom’ Radiation
The “boom-boom” strategy is used for people who have indolent lymphomas such as follicular lymphoma, marginal zone lymphoma, mantle cell lymphoma, or MALT lymphoma, to shrink areas of disease that are causing symptoms. The smaller dose is designed to treat the cancer without causing unnecessary side effects. It also helps patients get through their treatment faster. “Just two days of treatment can be effective,” Dr. Pinnix tells SurvivorNet.
She says there are studies going on at MD Anderson Cancer Center looking at radiation doses of 4Gy and 2 fractions as the only treatment for people with orbital MALT — a cancer that forms in the eye. “We’ve almost finished recruiting and the responses have been excellent. More than 88% of patients have a complete response to just two fractions of treatment,” Dr. Pinnix says.
What are the Symptoms & Risks of Lymphoma?
Until an effective screening test becomes available, you can increase your odds of finding lymphoma early by knowing whether you’re at risk, and staying alert for symptoms.
In a previous interview with SurvivorNet, Dr. Elise Chong, a medical oncologist at Penn Medicine, explained that Hodgkin lymphoma is most often seen in younger adults, and although less common, it is generally easier to cure than non-Hodgkin lymphoma.
“The patients who are diagnosed with lymphoma early, typically it’s luck,” Dr. Chong says. They may have had a symptom that made their doctor check them, or the cancer showed up on a scan or blood test that was done for another reason.
You might be at higher risk for this cancer if you:
- 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
Let your doctor know about these risks, so he or she can keep a close eye on you. You may need more frequent checkups and tests.
Also watch out for lymphoma symptoms. The most common ones are:
- Swollen glands in your neck, armpit, or groin
- Fever
- Chills
- Night sweats
- Weight loss without trying
- Feeling tired
Many different conditions, including infections, cause these same symptoms. So don’t panic if you have them. It’s most likely something more benign, but still worth getting checked out. It’s also a good idea to see your doctor for any other unusual symptoms, even if they’re not on this list, as in Chris’s condition. Remember, always seek out multiple opinions and don’t stop until you get an answer.
Questions for Your Doctor
If you are facing a lymphoma diagnosis, here are some questions you can ask your doctor to begin your journey to a successful outcome.
- What type of non-Hodgkin lymphoma do I have? What stage of my lymphoma is in, and if it has spread, how far?
- Do we need to treat the lymphoma immediately?
- What treatment do you recommend to help me beat this diagnosis?
- Should I get more opinions about the treatment options available?
- What are some possible side effects I should expect during treatment?
- Will insurance cover the recommended treatment?
Contributing by SurvivorNet staff.
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