Listening To Your Body
- Alannah Russell’s Hodgkin lymphoma journey began when she felt “a pain in [her] armpit” last January. She initially thought it was a pulled muscle but knew something was wrong when the pain continued. Then, the now 21 year old struggled with an itchy rash that doctors assumed was scabies. She also developed night sweats and quickly lost weight. She finally received her diagnosis after her grandmother insisted she needed to be seen at a hospital.
- There is no recommended screening test for lymphoma, so it’s important to pay attention to the signs your body is giving you. Early symptoms of the disease can include swelling of lymph nodes in your neck, armpits or groin, persistent fatigue, fever, night sweats, shortness of breath, unexplained weight loss and itchy skin.
- It’s important to always address any concerning changes to your health. An ovarian cancer survivor previously told SurvivorNet that “You need to know that you are your own best advocate.” And if you feel like your symptoms are being dismissed, don’t be afraid to seek out multiple opinions.
Life can be crazy, and humans are busy creatures. So, it can be easy to shrug off cancer symptoms when they arrive, and Russell’s story reflects that. Her first sign of lymphoma arrived in January 2022 when she noticed an unusual “pain in [her] armpit.”Read More
"Every time I went to the doctor, I'd meet an on-call doctor,” she explained. “It wouldn't be my regular doctor as she'd be out. I'd have to re-tell my story again and then I'd get confused and I'd leave parts out. It was just very frustrating."
Then, she developed a “terribly itchy” rash that began above her ankle.
"Unfortunately for me, there was an outburst of scabies that had happened in my college and I'd recently stayed at my friend's apartment,” she said. "I was just being diagnosed with scabies instantly and getting the treatment. And if you do the treatment correctly, it should go away. And if you take the correct precautions towards it, it should go away but this was not going away.”
The rash only got worse and spread all over her body. Even still, more than one doctor insisted it was scabies after her multiple rounds of treatments for the infestation of the skin by the human itch mite.
"They wouldn't listen to me and it was like I was just talking to myself. I was just getting so frustrated with it all,” she said. "I know I'm not a doctor with a degree or anything, but I know my own body."
Other symptoms like night sweats and rapid weight loss followed. But no answers came until her grandmother insisted she be taken to the hospital.
"My grandmother got fed up I came to her crying one day, because I knew something was terribly wrong and I was so frustrated. And I came to her crying and she was just like, 'look, we'll go back to the doctors' and bless her, she marched in like, 'this girl needs to see someone above, she needs to go to a hospital,'” Russell said. "They referred me to the hospital. I went to St. John's Hospital in Limerick, where I went for a medical assessment. They checked me head-to-toe, they were very good I gave every sample that you could imagine.”
Eventually, Russell got to the correct answer: Hodgkin lymphoma. The blood cancer diagnosis came at just 20 years old, and she was, understandably, shocked.
Russell had 12 rounds of chemotherapy for treatment, and she’s feeling “fortunate to have responded to it well.” Now, she’s awaiting another scan in June to check on her progress.
"I'm doing great now. I finished treatment on the 20th of January after 12 rounds of chemo and I've been doing great since then,” she said. "I literally have no complaints. And that's what I'd say to a lot of people when they ask, 'oh, how are you feeling?' I've had no complaints, even during treatment.
“I've always said that what's happening to me physically, I cannot control. But the only thing I can control is my mind and my mindset, my mentality and I truly do believe that my mentality of keeping positive, that that's really brought me over the finish line.”
Diagnosing Lymphoma Early
There are plenty of recommended cancer screening tests out there, but lymphoma is one disease that doesn’t have one. To break down why that is, SurvivorNet spoke with Dr. Elise Chong, a medical oncologist at Penn Medicine.
"Screening is a test we do with the goal of detecting lymphoma in a very early state," Dr. Chong said. "For something to be a good screening test, we need to see that the screening helps people live longer, and helps people have better outcomes.
“And so because we don’t really meet those two criteria, we don’t have a good screening test across the board for lymphoma yet.”
Lymphoma can be tricky to diagnose because the disease often creeps in quietly, without symptoms. And sometimes the symptoms that do show up don't point directly to cancer.
"The symptoms of lymphoma, especially if you have a low-grade lymphoma, often are no symptoms," Dr. Chong explained. "People say, but I feel completely fine, and that's very normal."
Alannah Russell suffered with many symptoms prior to her diagnosis including a pain in her armpit, an itchy rash, weight loss and night sweats.
"Hodgkin's Lymphoma comes with a rash,” she said. “That was one of my first symptoms, and I just want to be so clear on that for other people who may have symptoms it was one of my first. It does come with a rash, and it could be put down to something else."
While people with lymphoma do not always have symptoms, some possible signs of the disease are:
- Painless swelling of lymph nodes in your neck, armpits or groin
- Persistent fatigue
- Night sweats
- Shortness of breath
- Unexplained weight loss
- Itchy skin
It's important to communicate anything unusual happening to your body with your doctor. Even if it seems like there's nothing to worry about, it's good to rule out the possibility of more serious issues.
Don’t Let Your Symptoms Be Dismissed
We’ve noted it’s important to keep an eye out for lymphoma symptoms, but really any concerning changes should be expeditiously addressed.
"To anyone who's scared that there's something wrong and they don't know what it is go and get checked properly. What's â‚¬50 to a lifetime of bills from the hospital, even if it's just that they say, 'yeah, you're fine, why are you worrying so much?'” Alannah Russell said. "I'd rather that a million times than to go through what I've gone through and even at that, I've had such an easy route compared to other people.”
Stephanie Virgin, like Russell, also looks back on her cancer journey and wishes she did things differently. She suffered with ovarian cancer symptoms for quite some time before addressing them with a doctor.
"I could explain away every single one of my symptoms,” she said. "I didn't even realize they were symptoms.
“If you don't feel right, call your doctor. If your doctor doesn't listen, get a second opinion. You need to know that you are your own best advocate."
In Russell’s case, she did speak up. But she left appointments with pure frustration knowing something was wrong with her body but not having doctors willing to listen. So, sadly, patients need to make sure their doctors take them seriously.
Colon cancer survivor Evelyn Reyes-Beato previously spoke with SurvivorNet about advocating for your health and urged people to "get knowledge" ahead of appointments so they could arrive prepared to ask questions.
“Make them earn that co-pay, because in that moment that you are with them, it’s all about you,” Reyes-Beato told SurvivorNet. “And you have them for that amount of time.
“Don’t let them rush you, and don’t be afraid to speak your mind. Don’t be intimidated by doctors either.”