What to Know About Follicular Lymphoma
- When Susete Isabel, a 40-year-old mom from Canada, began experiencing night sweats and fatigue, among a variety of other symptoms, she thought she was experiencing Perimenopause. But it was a sign of stage 4 cancer.
- Isabel, who has since finished up her chemotherapy treatments, was diagnosed with stage four follicular lymphoma, a form of non-Hodgkin lymphoma cancer that grows slowly. It appears in your lymph nodes, bone marrow, and other organs.
- Follicular lymphoma is the “second most common type of non-Hodgkin lymphoma and accounts for up to 30% of all lymphomas.”
- Common symptoms for follicular lymphoma may include unexplained weight loss and painless swelling in your neck, armpit, and groin caused by enlarged lymph nodes.
Now, the 40-year-old mom who goes by the name Susete Isabel on Instagram and resides in Canada, is sharing her cancer story in hopes to inspire others to maintain strength through health challenges and spread awareness for lymphoma.
Read MoreShe explains in a recent video posted on Instagram,”I had an excuse for every symptom. Drenching night sweats: I’m 40 … I thought it was the beginning of perimenopause. Swollen abdomen: I was drinking alcohol like an alcoholic. Itchy hands/wrists & feet/ankles: I had a rash on my body (allergic to something).View this post on Instagram
“Weight loss and lack of appetite: I was working a lot. Huge lymph node groin (3 inches): It didn’t hurt so I wasn’t worried. … If you have any of these symptoms go get yourself checked out.”
As for what led her to seek medical advice, Isabel explained in another video clip, how a “sharp pain” ultimately led her to go to the hospital and two days later she had her gallbladder removed.
Isabel explained further, “An ultrasound showed an enlarged spleen and many enlarged lymph nodes. The oncologist confirmed through a biopsy, stage 4 follicular lymphoma.”
However, despite her fear of chemotherapy, she took to Instagram last month to celebrate completing her sixth and last chemotherapy treatment.
“Let’s share this video to raise awareness to my story because today it was me, tomorrow it can be you or your friend,” she wrote in the post’s caption.
View this post on Instagram
In regard to her optimistic outlook throughout this journey, Isabel said, “I get asked a lot why I’m so positive…My strength comes from all the hard things that have crossed my path. My life has many stories and this one is one more, for me to tell and share with you.
“I pick to share this journey with you so you can feel at ease. I’m sharing this to bring awareness to you or a friend. I found this out about the cancer through a very sharp pain on the right side of my abdomen, it was my gallbladder, got it removed and got a biopsy done on one of my lymph nodes.”
“DO NOT IGNORE WHAT YOUR BODY IS TRYING TO TELL YOU! DO NOT POSTPONE GOING TO THE DOC BECAUSE YOU HAVE TO GO TO WORK. When shit hits the fan you’ll have no choice but to make the time. Check yourself occasionally, “she concluded, signing off, “Your Cheerleader, Susete.”
View this post on Instagram
Expert Lymphoma Resources
Isabel has since urged her followers to embrace change and never lose hope, writing in an Instagram post a few months ago, “If you are going to be afraid of something, be afraid of not taking a chance on yourself, years passing you by and you being in the same place, with little or no growth and wishing you tried something new.
“Break the curse! Get. Out. Of. Your. Own. Way. You will be surprised of just what you are capable of! One day your story is going to inspire others. People want to know how you found the strength and they will want to hear about how you never quit on yourself, despite all the failures.”
She continued, “People want to hear about how you never stopped working, how you’ve had the faith and how you’ve dealt with your frustrations. Mainly people will want to know how you never stopped believing in yourself despite resistance. Your story will inspire, coming from a darker place of limitation to finding direction and happiness. No matter what you are facing right now, don’t give up.
“You have a unique and inspirational story to tell. Share it. You never know who may need to hear it.”
“You Are Your Own Best Advocate”
Understanding Follicular Lymphoma
Follicular lymphoma is the “second most common type of non-Hodgkin lymphoma and accounts for up to 30% of all lymphomas,” according to researchers with the healthcare education and technology company, StatPearls.
Most non-Hodgkin lymphomas, about 85%, affect B-cells. These cells produce antibodies proteins that react to foreign substances like viruses or bacteria in your body. The antibodies attach to another protein on the surface of the invading cells, called an antigen, to target and destroy them. Follicular lymphoma is a B-cell lymphoma.
While it’s possible to have follicular lymphoma without presenting symptoms, the Cleveland Clinic says symptoms tend to “mirror” non-Hodgkin lymphoma.
Follicular Lymphoma Symptoms may include:
- Fever caused by an infection
- Unexplained weight loss
- Painless swelling in your neck, armpit, and groin caused by enlarged lymph nodes
- Sweating or chills
- Fatigue
WATCH: Follicular lymphoma is the most common form of slow-growing lymphoma.
What is Lymphoma?
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.
Lymphoma starts when lymphocytes develop a genetic mutation that makes them multiply much faster than usual. The mutation also makes older cells that would normally die stay alive. The quickly multiplying lymphocytes start to collect and build up in your lymph nodes, the small glands in your neck, armpits, and other parts of your body.
“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, tells SurvivorNet.
“One of the best ways to wrap your head around lymphoma is to start thinking about the different ways we categorize lymphoma,” Dr. Chong added.
What Kind of Lymphoma Do You Have? Why Your Type Matters
Treatment Options for Follicular Lymphoma
If you are diagnosed with follicular lymphoma, you should discuss treatment options with your doctor. The type of treatment depends on various conditions including your age and overall health to how advanced the cancer has become.
Treatment options include:
- Active surveillance, which includes regular exams and tests
- Monoclonal antibody therapy, which uses lab-created antibodies to kill cancer cells.
- Targeted therapy, targets drug treatments for abnormalities present within cancer cells.
- Immunotherapy, which uses your immune system to fight cancer.
- Radiation therapy, which uses high-power energy beams to kill cancer cells.
- Chemotherapy uses drugs designed to kill cancer cells
- Bone marrow or stem cell transplant,
“A bone marrow transplant is a therapy where your bone marrow and your blood cells are completely replaced by someone else’s bone marrow cells and blood cells,” says Dr. Jun Choi, a hematologist-oncologist at NYU Langone’s Perlmutter Cancer Center.
WATCH: Treatment Options for Follicular Lymphoma
Understanding Perimenopause/Menopause
It’s understandable how Isabel likened her symptoms to perimenopause, however, her story is a reminder to always be your own advocate and get seek multiple doctor opinions when trying to understand when something feels off with your body. According to the North American Menopause Society (NAMS), “the gradual transition between the reproductive years and menopause (the cessation of menstrual periods) is called perimenopause (literally meaning around menopause”).
“It is generally a transition that is many years long and can be associated with shorter menstrual intervals, irregular menses, night sweats, and other symptoms. In some women, these symptoms are troublesome enough to need medical intervention.”
Meanwhile, when menopause (whether natural or induced) occurs when a woman is 40 years old or younger, it’s dubbed as premature menopause.
“This occurs in about 1% of women in the United States,” the NAMS explains. “Premature menopause that is not induced can be genetic, metabolic, autoimmune, or the result of other poorly understood conditions. Premature menopause should be evaluated thoroughly.”
WATCH: Finding a Doctor Who Can Handle Your Personal Concerns
Isabel may not have been experiencing menopause, or early menopause, but it’s important to understand the difference.
Menopause is described by the National Institute on Aging, as “a point in time 12 months after a woman’s last period.” Additionally, “The years leading up to that point, when women may have changes in their monthly cycles, hot flashes, or other symptoms, are called the menopausal transition or perimenopause.”
The average age women go through the menopausal transition, which usually lasts approximately seven to 14 years, ranges between ages 45 and 55.
“The duration can depend on lifestyle factors such as smoking, age it begins, and race and ethnicity,” the institute explains. “The menopausal transition affects each woman uniquely and in various ways. The body begins to use energy differently, fat cells change, and women may gain weight more easily. You may experience changes in your bone or heart health, your body shape and composition, or your physical function.”
As for early menopause, the National Cancer Institute says it’s a condition which causes the ovaries to stop working and menstrual periods to stop before a woman turns 40. It’s a transition that can lead to fertility issues and symptoms of menopause.
Additionally, early menopause is split up into two types, primary and secondary. According to the National Cancer Institute, “There are two types of early menopause, primary and secondary. Primary early menopause means that the ovaries do not function normally. This may be because they have been removed by surgery, or it may be caused by some cancer treatments and certain diseases or genetic conditions.
“In secondary early menopause, the ovaries are normal but there is a problem getting hormone signals to them from the brain. This is usually caused by diseases of the pituitary gland or hypothalamus. Some women with early menopause sometimes have menstrual periods and may be able to have children. Also called ovarian failure, ovarian insufficiency, and premature menopause.”
Be Pushy, Be Your Own Advocate, Don’t Settle
Remember, 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 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 night sweats or a part of your body that’s 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 unexplainable?
- 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?
Contributing: SurvivorNet Staff
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