Back-to-Back Diagnoses
- 44-year-old Hayley Shaw was living an active and healthy lifestyle when her world was turned upside down with back-to-back rare cancer diagnoses: uterine, or endometrial cancer, along with leukemia, a cancer of the blood and bone marrow.
- The single mom to an 11-year-old son was beyond overwhelmed, especially when learning she would not be able to birth another child, as she immediately underwent a hysterectomy, while simultaneously starting chemotherapy treatment for leukemia.
- While back-to-back diagnoses are incomprehensibly unfair, Shaw would not have received her first diagnosis if she hadn’t advocated for her health while experiencing her first symptoms, pelvic pain and heavy periods.
- Knowledge is power, especially in the medical world, and understanding your diagnosis in detail can empower you and your doctor to select the most effective care. Multiple opinions are a must, and always pushing for a correct diagnosis if something doesn’t add up.
Shaw had been experiencing heavy periods and pelvic pain, which led to the first diagnosis last June: uterine cancer. Just six weeks later, after finding out she would not be able to have more children, Shaw received another devastating blow. She also had leukemia, which is a type of blood cancer.
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Treating Two Different Cancers at the Same Time
As for treating her leukemia, Shaw simultaneously began chemotherapy, having completed one round before her surgery. The specific type was hairy cell leukemia, named after the “hair-like growths” on the cells.
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“When I first got diagnosed with this I was so worried as I hadn’t heard of it,” Shaw said, explaining that reaching out to similar sufferers helped. “I found a lot of comfort from these people as they had dealt with it for so long. They’d become experts on it to the point where they knew more than some doctors did.”
Her hematologist (a doctor who specializes in blood disease) explained that the leukemia was in 91 percent of the cells in her bone marrow and 69 percent of her blood. Beyond overwhelmed, Shaw said she hadn’t even processed her first diagnosis, let alone this one.
“It didn’t feel real.”
Tips to Cope with an Unexpected Diagnosis
Facing a cancer diagnosis can be a terrifying experience, and navigating two diseases at once is incredibly unfair. It’s important to know that you are not alone — and there are many ways to seek support.
Experts recommend trying the following:
- Let your family and close friends know and let them help. So many cancer survivors tell us they want and need support but are often too preoccupied to make specific requests. Urge those close to you to jump in with whatever practical help they can offer.
- Keep a journal. It can be highly cathartic to let those feelings loose on paper. Grab a pen and a lovely journal and chronicle your thoughts throughout the day. For quieting your mind, meditation can help.
A guided meditation for the SurvivorNet community
- Join a cancer support group. Groups in nearly every community offer opportunities to connect with others going through a similar journey. You’ll learn constructive insight from others who can tell you what to expect and how to stay strong on tough days.
- Consider seeing a therapist. Ask your doctor to refer you to a therapist so you can discuss your fears and concerns in a safe space. Often, vocalizing your thoughts and feelings rather than internalizing them can provide relief.
Learning About Uterine Cancer
If you’re facing a uterine cancer diagnosis, also known as endometrial cancer (a type of cancer that starts in the lining of the uterus, called the endometrium), understanding your diagnosis in detail can empower you and your doctor to select the most effective care.
A key step in this process is determining the stage of your endometrial cancer. Staging is a way to describe the extent of cancer in the body, if or where it has spread, and whether it is affecting other parts of the body.
How serious is my Illness? Staging uterine cancer
“The true staging procedure is when you have surgery and everything that the surgeon removes is sent to pathology where everything’s looked at under the microscope and that report that the surgeon gets back and reviews with you is what we use to assign a stage,” Dr. Jennifer Mueller, a gynecologic surgeon at NYC’s Memorial Sloan Kettering Cancer Center, told SurvivorNet in a previous interview.
How Do Doctors Test for Uterine Cancer?
Physicians use diagnostic tests to discover the cancer’s stage. This may require taking samples of the tumor during surgery and sending them to a lab for analysis, a process known as a biopsy.
“The staging surgery typically includes the removal of the uterus, cervix, tubes, ovaries, and an assessment of lymph nodes through a procedure known as sentinel lymph node evaluation,” Dr. Mueller explained of the procedure.
“This involves injecting a bright green dye into the cervix at the time of surgery to trace lymphatic channels to the first lymph node(s) draining the uterus, known as the sentinel node(s). These nodes are then removed and examined by a pathologist to determine if they contain tumor cells, which is crucial for staging.”
How doctors recognize and diagnose different types of endometrial cancer
Because of this, your doctor may not know the stage of your cancer until after your have had surgery to remove your cancer and all of your tests are in.
Once your cancer stage is determined, this will help guide further treatment decisions and predict which therapies are likely to work best for you.
“So you’ve had your surgery and the biggest question people have truly from the minute they’re diagnosed with endometrial cancer is am I going to be okay? Can you get the cancer out and then do I need any additional treatment?” Dr. Mueller noted.
“This is a time after surgery where when we get a report back, the pathology, we can talk about what stage cancer you have. We can talk about if you need treatment at all after surgery.”
The most widely used classification for determining the extent of endometrial cancer is known as the International Federation of Gynecology and Obstetrics staging system, or FIGO for short.
Coping With a Leukemia Diagnosis
Hairy cell leukemia is a rare form of the disease. However, it shares some characteristics with more common forms of leukemia, such as acute and chronic and myeloid or lymphocytic leukemias.
Acute myeloid leukemia is a fast-growing blood cancer that begins in the bone marrow, the factory that makes white and red blood cells and platelets.
Stem cells within the bone marrow eventually develop into white blood cells (WBCs), red blood cells (RBCs), and platelets, which help blood clot.
Stem cells can copy themselves to make progenitor cells or precursor cells. Myeloid progenitor cells turn into red blood cells, granulocytes (a type of white blood cell), and platelets. AML affects the myeloid progenitor cells during a stage of development when they are called myeloblasts.
With AML, myeloblasts fail to turn into fully developed blood cells, leaving them to build up in the bone marrow and blood.
What is a blood cancer – How is it different?
AML is diagnosed by extracting samples of liquid bone marrow and a chip of bone from the back of the hip. The samples are then tested to determine whether blood cells in the bone marrow are abnormal.
Dr. Gail Roboz, an AML expert and medical oncologist at Weill Cornell Medicine, says, “The majority of patients have this sporadically out of the clear blue sky.”
Symptoms for acute myeloid leukemia can include:
- Flu-like symptoms
- Fatigue
- Fever
- Loss of appetite
If you are feeling any strange symptoms that linger for more than a couple of weeks, get in to see your doctor right away. The earlier you catch a potential cancer diagnosis, the better your prognosis will be.
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