The Shock of a Cancer Diagnosis
- Lisa Stephenson was shocked when she learned of her multiple myeloma diagnosis. She’d began falling asleep in board meetings, but the regular flyer and 70-hour-a-week worker didn’t think there was any serious underlying cause.
- Multiple myeloma is a blood cancer involving plasma cells – a certain kind of mature white blood cell in the bone marrow that helps fight infection by producing proteins that help your immune system fend itself against germs.
- For people with multiple myeloma, cancerous plasma cells, or myelomas, grow uncontrollably in the bone marrow and crowd out healthy white blood cells. This, in turn, inhibits the immune system’s ability to fight off infection which leads to fatigue.
The 52-year-old from Scotland was feeling “absolutely exhausted” at her job as a former bank director, but the possibility of cancer never crossed her mind.Read More
Her multiple myeloma diagnosis only came as a result of blood tests during an annual medical exam through her job. Hearing of her incurable blood cancer in 2011 left her in a state of shock.
“It was Easter Monday, and we were having breakfast with our children when I received the call saying I was to come in now to the oncology department,” she said. “I said they had the wrong number, and when they persisted I said I think you have the wrong person.”
But, unfortunately, they were not mistaken. Still “in denial” and thinking of work, Stephenson didn’t even want to start treatment right away.
“I had an important meeting the next day, and he said you can’t go to London as you have to start chemo now,” she recalled. “I played it down and was still going to work.”
Her doctor insisted on the urgency of her treatment, but he did say her incurable cancer was treatable.
“I asked what my life expectancy was and he said at best five years and that the treatment was tough,” she explained.
But despite a gut-wrenching prognosis, Stephenson is still fighting ten years later after having had chemotherapy and a stem-cell treatment. She also spent seven years on a trial drug, which she stopped taking in 2019.
“My life is a lot quieter now from the days of catching red eye flights to London and not returning home until late,” she said of having to quit her job and focus on her cancer battle.
Understanding Multiple Myeloma
Multiple myeloma is a blood cancer involving plasma cells – a certain kind of mature white blood cell in the bone marrow that helps fight infection by producing proteins that help your immune system fend itself against germs. So, in order to understand multiple myeloma, it’s important to talk about the bone marrow.
“The bone marrow is the factory that makes all of the cells that wind up in our bloodstream,” Dr. Mikkael Sekeres, the chief of the Division of Hematology at the University of Miami Sylvester Comprehensive Cancer Center, previously told SurvivorNet.
The bone marrow makes red blood cells which bring oxygen to our tissues, white blood cells which fight infections and platelets which help stop bleeding. For people with multiple myeloma, cancerous plasma cells, or myelomas, grow uncontrollably in the bone marrow and crowd out healthy white blood cells. This, in turn, inhibits the immune system’s ability to fight off infection which can lead to fatigue – like in the case of Lisa Stephenson.
Eventually, the myelomas grow too large in the bone marrow which can cause bone fractures. Myelomas can also lead to kidney damage because these cancerous cells release abnormally high levels of antibodies into the bloodstream which eventually build up in the kidney since its unable to process these extra proteins.
University of California at San Francisco hematologist-oncologist Dr. Nina Shah says cases of multiple myeloma can be grouped into categories that help physicians decide on the appropriate courses of treatment.
“We tend to [divide them] based on how risky the myeloma is, whereas other cancers will be staged based on how far the cancer has spread,” Dr. Shah previously told SurvivorNet.
The three stages of myeloma include the following:
- High risk multiple myeloma – when a patient’s cells contain missing segments of DNA or switched segments.
- Intermediate risk multiple myeloma – when some of these DNA changes are not present but a patient has elevated levels of certain proteins in the blood.
- Low risk multiple myeloma – when a patient has none of these changes.
Signs and symptoms of multiple myeloma can vary and there may be none at earlier stages of the disease. But when signs and symptoms do occur, they can include:
- Bone pain, especially in your spine or chest
- Loss of appetite
- Mental fogginess or confusion
- Frequent infections
- Weight loss
- Weakness or numbness in your legs
- Excessive thirst
Technically, there is no cure for this disease, but recent advances in medicine have made room for hope – especially with early diagnoses.
“This is still considered an incurable disease,” Dr. Shah said. “But we want to make sure we make people understand that it’s a disease that you can live with – not necessarily have to die of.”
Mental Health after a Cancer Diagnosis
Dealing with a mental health struggle looks different for everyone, especially when it comes to a cancer diagnosis. But feeling sad or anxious about the changes coming your way after hearing the “c” word for the first time is very normal and understandable.
“Grief comes in waves,” Dr. Scott Irwin, a psychiatrist and director of supportive care services at Cedars-Sinai Medical Center, told SurvivorNet in a previous interview. “They’re grieving the change in their life. The future they had imagined is now different.”
Dr. Irwin stressed how helpful talk therapy could be when dealing with the mixed emotions. It’s important to reach out to your doctor, a therapist or support groups in your community if you feel like you’re struggling – something Tia Stokes encourages her followers to do as well.
“But no matter what you have gone through mental health is real…i get it,” she wrote. “I plead with you to REACH OUT…try counseling…medication is nothing to be ashamed about….it’s ok to feel those feelings YOU ARE NOT CRAZY.”
Ni Guttenfelder can attest to the benefits of therapy. She was diagnosed with ovarian cancer in October 2017 and quickly decided she needed a therapist to help process her feelings. Her suggestion is to seek a counselor you’re comfortable with – one you trust and can open up to about your cancer diagnosis.
“Initially I went to a session where I just cried and the counselor basically told me what I was feeling was normal and didn’t offer me any type of feedback. But I knew that I needed something more than that. Not just a crying session and a pat on my shoulder,” she told SurvivorNet in a previous interview. “What I have found is that it’s critical to find the right counselor, not just any counselor.”
Once she found a counselor she truly trusted, Guttenfelder began to see some clarity.
“One of the things that my counselor has taught me from the very beginning that has helped me is the concept of acceptance,” she says. “Acceptance is a process. It’s like downloading a computer file in increments. Visualizing it in that way has really helped me.”
Her therapist also taught her how to manage the people in her life. She decided to look into her relationship with her father, for example, because he was resistant to the idea of her receiving chemotherapy.
“It makes it more of an uphill battle and a challenge because we’ll sometimes get into arguments about it,” she says. “My counselor would say, for my own benefit and health that it’s best to limit the time with others who may not be lifting me up during my treatment.”
She also had some helpful advice for other women dealing with ovarian cancer: “You are stronger and more resilient than you could ever imagine.”
“I think there’s a misconception that we beat cancer when we finish treatment,” she said. “Unfortunately, that’s not always the case for everyone. I want you to know that you beat cancer by how you live your life.”