I Walked in With Anemia and Walked Out With Cancer

Article

Every person recalls vividly when they were given the diagnosis of cancer.

The moment a patient is told they have a cancer diagnosis the world stops. We remember that moment forever. It is the same sensation as remembering where we were during a terrible time in history such as Pearl Harbor, or when President Kennedy was shot or 9/11.

However, I didn’t learn the typical way. Most people find a suspicious lump, or have a routine test where an abnormality appears or unusual bleeding occurs.

I was tired — that’s all – just fatigue. I had anemia once before, which was corrected by a hysterectomy. But this dragged on and on. The family doctor prescribed the usual iron pills. I took them for a few months and noticed little difference. His office called after some blood tests and referred me to an oncologist/hematologist.

For “normal” people, this would raise a red flag. I was naïve, stupid, in denial or all three. I still wasn’t overly concerned. But let me defend myself a little bit. Over 30 years ago I had been diagnosed with a rare immune disorder named IGA deficiency. This meant half of my immune system was gone, but the other half was still there. This type of deficiency cannot be treated by conventional methods like intravenous treatments to build up immunity. It mostly affects the upper respiratory system, causing lots of infections. All the doctors could recommend was to treat me quickly with antibiotics when an infection started, so I didn’t get worse. It was not unusual for me to spend weeks at a time on antibiotics. I had periods in between I would be all right, then the infections would return. This time, however, none of the respite periods happened. I was being attacked with one after another upper respiratory problem.

I still was not surprised because I had several recent stressors including losing my mother, taking care of the estate, moving to a larger apartment and working two demanding part-time jobs.

Never had any doctor informed me, or research I read, say that IGA deficiency was a precursor to a cancer diagnosis. This was the last thing on my mind. My pea brain said to me, “I have an immune disorder, I am not taking care of myself, and I’m getting multiple infections. So, I have an infection somewhere else in my body they have not found.”

I went to the hematologist and she took eight vials of blood. I returned a week later when she explained all the blood results were fine. I was happy nothing was wrong until she stopped me.

“Something is causing the anemia, so we have to do a bone marrow biopsy.” A sense of alarm stated creeping into my mind. She asked me if I had any questions before we scheduled it and I said no. She gave me a very startled look, but I was more worried about the bone marrow procedure than the results. Most reasonable people would be curious by now, but I didn’t know what questions to ask.

After the procedure, I returned again and asked if she found anything. She said myelodysplastic syndrome and obligingly wrote it down for me. I couldn’t pronounce it, much less spell it! She explained that more lab tests results needed to be processed to see which type of MDS I had and to wait another week.

I went home and perused the Internet. What I read confused me more than helped me. There were five different types of MDS. Some articles called it a cancer, and others stated it was a blood disorder. What did I have?

I found out later that for a long time MDS was considered a rare blood disorder. Recently, however, medical experts feel since a single cell had to start the malformation of blood cells, it is classified as a cancer.

I decided on the next visit to bring a friend with me because I was getting overwhelmed. The oncologist explained which type of MDS I had and that the average life span was 104 months. As the room spun around me I said, “But we found it early.”

She stated that it was not a typical stage 1 through 5, but this type was treatable by a chemo drug.

I left her office in tears and my denial stage was over. My friend was a tremendous support as I came to the realization every person diagnosed with cancer has to absorb. I had walked into the doctor’s office with anemia and walked out with cancer. I was now one of the many cancer survivors who live all over the world. I didn’t know how, but my life was about to change drastically and I needed to be ready.

Related Videos
For patients with cancer, the ongoing chemotherapy shortage may cause some anxiety as they wonder how they will receive their drugs. However, measuring drugs “down to the minutiae of the milligrams” helped patients receive the drugs they needed, said Alison Tray. Tray is an advanced oncology certified nurse practitioner and current vice president of ambulatory operations at Rutgers Cancer Institute in New Jersey.  If patients are concerned about getting their cancer drugs, Tray noted that having “an open conversation” between patients and providers is key.  “As a provider and a nurse myself, having that conversation, that reassurance and sharing the information is a two-way conversation,” she said. “So just knowing that we're taking care of you, we're going to make sure that you receive the care that you need is the key takeaway.” In June 2023, many patients were unable to receive certain chemotherapy drugs, such as carboplatin and cisplatin because of an ongoing shortage. By October 2023, experts saw an improvement, although the “ongoing crisis” remained.  READ MORE: Patients With Lung Cancer Face Unmet Needs During Drug Shortages “We’re really proud of the work that we could do and achieve that through a critical drug shortage,” Tray said. “None of our patients missed a dose of chemotherapy and we were able to provide that for them.” Tray sat down with CURE® during the 49th Annual Oncology Nursing Society Annual Congress to discuss the ongoing chemo shortage and how patients and care teams approached these challenges. Transcript: Particularly at Hartford HealthCare, when we established this infrastructure, our goal was to make sure that every patient would get the treatment that they need and require, utilizing the data that we have from ASCO guidelines to ensure that we're getting the optimal high-quality standard of care in a timely fashion that we didn't have to delay therapies. So, we were able to do that by going down to the minutiae of the milligrams on hand, particularly when we had a lot of critical drug shortages. So it was really creating that process to really ensure that every patient would get the treatment that they needed. For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.
Yuliya P.L Linhares, MD, an expert on CLL
Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL
Image of a man with a beard.
Image of a man with gray facial hair and a navy blue suit with a light orange tie.
Image of a woman with black hair.
Related Content