Real Patient Stories: How I Knew I Had Non-Hodgkin Lymphoma
Non-Hodgkin’s lymphoma is one of two major sub-types of lymphoma, the other is Hodgkin lymphoma. Lymph nodes are a part of the immune system and work by helping to circulate lymph fluid.
Lymph fluid carries immune cells (lymphocytes) throughout the whole body. Normal lymphocytes have a normal lifespan and go through a process called, apoptosis, which is just a fancy term for programmed cell death.
With lymphoma, lymphocytes’ ability to die is compromised, and these immune cells grow rapidly, mutate and become abnormal, malignant (cancerous) cells. Read on to learn about the early signs, symptoms, and diagnosis of non-Hodgkin lymphoma from real patients.
- What are common early signs of non-Hodgkin lymphoma?
- What tests do doctors run for non-Hodgkin lymphoma?
- What can non-Hodgkin lymphoma be misdiagnosed as?
- How did the doctor tell you that you had non-Hodgkin lymphoma?
- What advice do survivors have for someone who has just been diagnosed with non-Hodgkin lymphoma?
What are common early signs of non-Hodgkin lymphoma?
Some typical early signs or symptoms are:
- Swollen lymph node(s) or a lump
- Your body has about 500-600 lymph nodes distributed throughout with clusters found in the underarms, groin, neck, chest, and abdomen. Note that other things like strep throat, ear infections, or mononucleosis can cause swollen, painful lymph nodes.
- Basically, a swollen lymph node more often than not means something other than lymphoma, but if you’re experiencing other symptoms as well that are otherwise unexplained, it may be time to check.
In Patrick Mulick’s case, his only symptom was a lump in his chest:
“The first symptom was interesting. I had noticed for a couple of months that I had this bump right on my sternum. That was it. It felt like a bone was popping out but nothing else of concern. I didn’t have any other symptoms.”
- Unexplained weight loss and/or loss of appetite
- It’s important to remember that many people dismiss this symptom because stress, healthy lifestyle like diet and exercise, and others things can cause weight loss as well. This is why it’s so important to pay attention to your body.
For Arielle Rosen her appetite and weight loss wasn’t a concern to her until it paired with swollen lymph nodes:
“My appetite waned and I started to lose weight, but didn’t take any action. Then the lymph nodes along my neck, throat, and clavicle area swelled up suddenly.”
Brianna Banachoski dismissed her weight loss because she thought it was a result of lifestyle change:
“My first symptoms were loss of appetite and weight loss, which I misconstrued as something that was happening on purpose because I was trying to lose weight at the time. “
- Fatigue
- By itself, fatigue can be a symptom of just about anything including the every day life of a busy person.
That was the case for Stephanie Chuang:
“I was feeling lethargic and sleepy for weeks, but attributed it to my most recent work schedule.”
- Bad cough
- Like many things, a cough by itself can be just about anything from a tickle in your throat, to a common cold, to something more serious. It may not seem like something big, but if you feel like there’s something else going on, it doesn’t hurt to go see your doctor.
“It wasn’t until I woke up one morning and had a very deep cough that came from a place I’d never experienced. It happened just once in the morning but I was a bit freaked out by it. It happened again the next day and that’s when I realized that something wasn’t right. I decided to make a same-day doctor’s appointment,” Stephanie says.
“I started showing “signs” about two weeks prior to giving birth with just a bad cough and a little trouble breathing that I thought was caused by being pregnant,” says Keyla Scrogham.
- Persistent infections
- Lymphoma is a cancer that originates in your white blood cells, which are the cells that fight infections in your body. If you’re getting more infections than normal, it may be time to call your doctor.
- Night sweats
- These will be night sweats that drench you. Lots of people get warm at night especially if they don’t sleep in bed alone. If you’re experiencing night sweats so bad you have to change your clothes or sheets, that could be a sign of a more serious problem.
It’s very important to note that a lot of these symptoms can be attributed to other things, but if you have non-Hodgkin lymphoma, these symptoms will last longer or recur more frequently than if you had a cold, the flu, were having a stress response, or something else.
What tests do doctors run for non-Hodgkin lymphoma?
Like with most other diagnostic processes, the doctor will probably ask about family history.
The most common tests and procedures ran for non-Hodgkin lymphoma are:
- Physical exams. Your doctor will check for swollen lymph nodes, including in your neck, underarm and groin, as well as for a swollen spleen or liver. Be sure and tell your doctor about any symptoms you’re experience as well as any areas of swelling in your body.
- Blood and urine tests. Blood and urine tests may help rule out an infection or other disease. Sometimes these can come back as a misdiagnosis (more below), so always push for more testing if you feel like something isn’t right.
- Imaging tests. Your doctor may recommend imaging tests to look for tumors in your body. Tests may include X-rays, CTs, MRIs and PET scans. These all have a risk of radiation associated with them, but your doctor will discuss your best options with you. You can always ask questions about your imaging.
- Lymph node biopsy. Your doctor may recommend a lymph node biopsy procedure to remove all or part of a lymph node for laboratory testing. Analyzing lymph node tissue in a lab may reveal whether you have non-Hodgkin’s lymphoma and, if so, which type.
- A needle biopsy is when they go in with a needle and extract some of the lymph node that way. You are usually loopy for this, but not under general anesthesia.
- A surgical biopsy is when you’d be put all the way under with general anesthesia, and a whole lymph node is removed for testing.
- Bone marrow biopsy. A bone marrow biopsy and aspiration procedure involves inserting a needle into your hipbone to remove a sample of bone marrow. The sample is analyzed to look for non-Hodgkin’s lymphoma cells.
What can non-Hodgkin lymphoma be misdiagnosed as?
In Brianna’s case, her misdiagnosis was a result of a faulty test sample.
“They did a lymph node biopsy, but I’m not sure it was done correctly. There was so much inflammation that they ended up getting endometrial tissue and diagnosing me with endometriosis, which I don’t have.”
Her misdiagnosis led to an exploratory laparotomy, which is a surgery that allows the doctor to look around with a scope to see what’s going on.
Other common misdiagnoses include mononucleosis (mono) or an inflammatory disease. If you feel that something is wrong with your body but feel the proper tests aren’t being ran, push for better and more answers. There’s a line between being a hypochondriac and sensing that something feels off. Don’t be afraid to speak up for yourself or have someone who loves you stand up for you.
How did the doctor tell you that you had non-Hodgkin lymphoma?
I’ll never forget her words.“I just heard back from the radiologist. I’m sorry, Stephanie, it doesn’t look promising.” The next words out of her mouth were, “It looks like lymphoma.”
Stephanie Chuang
I got the call from my primary doctor who I don’t know really well, and she said, “We got the results of your FNA: It’s lymphoma.” And I just burst into tears.
Arielle Rosen
I went in for the follow-up with my doctor, and I wasn’t expecting anything heavy as far as news went. I had let some family members know that I was going in for this thing they were looking at, but I wasn’t going to worry about it until I had to.
The doctor told me, and I remember not even knowing what lymphoma was. I thought it was a bad cold. I was googling it as he was telling me what lymphoma is.
Patrick Mulick
What advice do survivors have for someone who has just been diagnosed with non-Hodgkin lymphoma?
“It’s hard, I know. They’re giving you all these drugs and your body is changing, but just take care of yourself the best that you can. If your body says rest, you just rest. You’re not going to be able to do all the things. Have the right mindset through that even though things are changing.”
“Allow yourself to feel however you need to feel. Don’t bottle up emotions. Don’t try to hide. Don’t try to pretend that you’re happy or fine when you’re not. Your feelings are valid and need to be expressed. You’re allowed to feel scared.
You’re allowed to cry into your ice cream after you’re told you’re in remission. You don’t have to be the happy, strong cancer warrior all the time.”
“That’s the best advice I can give: take up space. It’s your life. It’s not their life. They’re not the ones going through the chemotherapy. They know a lot of things but they’re not the one. You know your body.”
“Many people don’t want to overburden with questions, but they are scared to death for you. I would err on the side of over-communication and share as much as you can. Keep people updated, and as you do, allow them to be your cheerleader.
Many people in this process feel helpless and don’t know what to do. They don’t know what to do, but they want to help. Let them help. If people are offering to help, let them help because to some degree they’re suffering as well. No, they’re not going through what you’re going through, but they’re very concerned, and they just want to know what they can do.”