What You’ll Learn

Even an oncology nurse can run into communications issues in healthcare. When this nurse only discovered she had cancer (chronic lymphocytic leukemia) by reading her own medical record, advocating for herself and others through improved patient education became her mission.

Oncology Nurse: I live in New York and I’m a nurse. So, I’m very conscientious about well care and preventative care. However, breast cancer runs rampant in my family. My grandfather had breast cancer, which is very rare. At that time, it was probably less than 1% of the male population. Now it’s a little more common. I had an aunt who died from it. I wanted to start my mammographies early, but the doctors wouldn’t do it because the insurance companies wouldn’t approve it.

It turns out that in 2020, no, before COVID started, my gynecologist wanted me to go for genetic testing after I had a mammogram. I thought that was strange, why all of a sudden, and I was asking questions, but I wasn’t getting answers. I think I did do it. At the time I was told… I’m trying to remember what the results were.

VIVO: Was that your first mammogram?

Oncology Nurse: No. Believe it or not, I found a male internist whose mom died from breast cancer, and he was my age, and he started me with mammograms when I was probably about 30. It was a male physician, which I was floored by. It was someone who I knew from the hospital I worked in, but I was struck by how caring he was about that. No one else was listening to me, including female doctors. He got me started, and then something happened to him medically and I had to switch doctors. Then I started having a battle again with the females.

But eventually, I was having regular mammograms. Then in 2020, I went for my routine mammogram. A radiologist said to me that I have a problem. Of course, I was scared. I thought it was breast cancer. They had to do more testing. She sat me down and she said, “You need to see a hematologist oncologist.” I was really scared by that. I thought, “Oh my gosh.” She was firm but supportive. In other words, she wasn’t going to let me not go ahead and make sure I did what I needed to do. She started the ball rolling.

Because I moved during COVID to be closer to family, my new internist was super supportive. Right away she sent me for a biopsy and she sent me to a breast surgeon, and it was a horrible experience. He was a male, and he said to me, “What are you doing here?” That’s what he said the first thing when he walked into the examination. I said to him, “Did you read my records?” At that point, I was annoyed.

From that point on, I didn’t think he was going to be listening to me. I didn’t think he had my best interest in mind. He went ahead. He did the biopsy.

VIVO: On your breast?

Oncology Nurse: Yeah. I should backtrack. After he said, “What are you doing here,” he said, “You’ve had this for at least five years.” Apparently my enlarged lymph nodes have been showing up on previous mammograms, and no one ever addressed it. He had an attitude and I was like, “Excuse me, these are my breasts.” He did the biopsy. After he did the biopsy, his attitude dramatically changed. That’s how I found out.

At first, they thought I had lymphoma. I was referred to… He wanted me to stick with his practice because they were strictly breast cancer. I’m saying to myself, “The radiologist said to me it wasn’t breast cancer, so why am I sticking with a man who was so unsupportive of me?” What I did was I called colleagues and my colleagues found a specialist for leukemia and lymphomas. From that point on, I started seeing the hematologist oncologist.

Now, with him too, it wasn’t an easy ride. I don’t know if it was because it was during COVID, maybe it was during COVID and everyone was burnt out. My oldest brother is a physician, and I know it was very traumatic taking care of people in the hospitals. I try to be understanding about it. I went to the hematologist oncologist. He did some extensive blood work, and all along I thought I had lymphoma. Then one of my visits, I didn’t see him, I saw a nurse practitioner. The nurse practitioner told me I had leukemia. I said, “Wait a second. I have lymphoma.” I told her the name of it, and she said, “I’ve never heard of that before.” That wasn’t comforting. I have now, as of this year, I’ve been a nurse for 40 years. That wasn’t comforting to me to hear a young nurse practitioner say she never heard of what I have, but yet she’s examining me and treating me.

VIVO: Had you been diagnosed with what you said, or did they suspect it?

Oncology Nurse: I should backtrack. I found out that I had cancer because I read it on my chart. That’s how I found out about it.

VIVO: Oh, my word.

Oncology Nurse: I immediately called the surgeon’s office who did the biopsy, and he was off that day. He called me because I was very insistent that I needed to speak to the physician. I said, “I just read I have cancer and I need more information about this.”

VIVO: Was that online? Did you check your results?

Oncology Nurse: Yes. Why do you post results and let people read it and find out? I was taking care of my 97-year-old mom, so it’s not like I was able to talk to her about it. I didn’t want to upset her. The first thing I did was I called my boss, who was a nurse, who was a breast cancer survivor. I called her and I just cried my eyes out. Back to the hematologist oncologist, I asked to speak to the hematologist oncologist when she told me that I had leukemia, not lymphoma. He came into the room. Turns out that my blood work showed I had chronic leukemia, but no one ever told me.

I’m thinking to myself, “I’m a nurse for 40 years, and how is this happening to me?” Could you imagine if it happened to a lay person? It was such a horrible experience. I did request never to see that nurse practitioner again. I saw him the last time, and I felt like now he’s listening and now he’s taking my concerns seriously. I have a lot of fatigue. I’ve been watching what I’m eating. A good healthy diet with a lot of protein helps me fight the fatigue. Right now, they’ve been telling me this since I was diagnosed that because the lymph nodes that they saw were 2.7 centimeters, they said they don’t do active treatment until 3 centimeters. I don’t know why, but I do, from time to time… This week, I’ve been really fatigued because I haven’t been having my protein shakes. At some point today, I’m going to have to run out and get them. I’m sleeping a lot. I’m getting a lot of rest.

I do believe in pet therapy. I have two huskies. I pay attention and I advocate for myself. I had to advocate with work. I work at a university, and I had to advocate not to go into the university. I now work remotely from home, and it’s for a couple of reasons. It’s for myself, as well as my 97-year-old mom. I would say through this whole experience, it made me stronger and able to speak up for myself and not be afraid to ask for what I think I need and deserve. That’s my story.

VIVO: What an experience. You said you were being responsible with your mammograms because of your family history. I’m curious, you said that this had been in the records somehow that they had put the lymph nodes. Had they just not said anything? They just said the mammogram is clear, every mammogram before that, so no repeat, no ultrasound, nothing?

Oncology Nurse: That’s right. Now I see a breast surgeon because they found the lymph nodes on the mammogram, but once again, she’s closely watching me for breast cancer. I’m saying to myself, “But it’s not breast cancer.” Because I have a family history on both sides, my mom’s aunt died from it, but there’s a strong history on my father’s side, I said, “You know what? I’m not going to fight it.” I’ve had to go for breast MRIs, which have been horrible. But I have to say that I’m lucky that I have access to healthcare so I can find out if there’s something wrong, as opposed to maybe other folks who don’t have that.

VIVO: Why have the MRIs been horrible? What makes them horrible?

Oncology Nurse: The positioning. You have an IV in your arm and you’re lying flat down. It feels like your boobs are in a vice. I think you’re tilted or something. It’s the positioning. My sister-in-law has a strong history of breast cancer also. She warned me ahead of time what it was going to be like. It’s helpful to talk to someone else who’s been through it, because in my mind I’m thinking, “They survived this. I can survive this.”

VIVO: When you got your results the one time and the doctor said, “We want you to go for genetic testing,” what happened there? What was that part of the process? Did they find anything?¬†

Oncology Nurse: Interestingly enough, I did go for the genetic testing. I have a friend who’s a breast surgeon, who since I was 30 wanted me to go for that kind of testing. I do trust her, and I felt very supported by her. But at that point, I didn’t think insurance was going to cover it, so I didn’t want to do it. But once I heard insurance was going to cover it… The good news is I don’t have the BRCA gene, but I still supposedly have a high risk for breast cancer.

VIVO: Did they say why you’re at risk?

Oncology Nurse: Once again, this was with the old gynecologist who I didn’t feel that she did a lot of patient education, because if I still don’t understand it to today, that’s a problem.¬†But then what happened when I started with the new internist, and then we found the enlarged lymph nodes, she wanted me to go for testing again, so I did. But this time I felt like I was more informed. I also think part of the difference was back then, we weren’t using MyChart. In other words, if I am having a conversation with someone and you’re telling me a devastating piece of news about myself, I may not absorb it all, but if I’m able to then go back into the records and reread it, it then sinks in. I can process it. I can talk to people about it. I’m trying to remember what happened with the last genetic testing, but I felt much better about it because I think I understood it better, and I understood my risks better. They still say that I need to be watched closely, but I’m okay with that.

VIVO: Can you feel the enlarged lymph nodes?

Oncology Nurse: You know what? It’s interesting you say that. There are some days I can. It’s in the axilla area under my arm. There are some days I feel swelling, but other than that, it’s all about the fatigue. Especially during COVID, I was getting so sick from the COVID vaccines. I made the choice to stop getting the vaccines. I was getting too sick, and it would last for days.

VIVO: Was it one of those things where you knew something was wrong, or did you just think maybe the fatigue was due to getting older or doing something different in your life?

Oncology Nurse: Everyone was saying, “Oh, you work full-time. You care for your mother.” I’m 63 now, but when I would have my period, I would feel so drained. All your life, you’re told, well, that’s normal. Who knows how long I’ve had this. But now I pay very close attention to all my blood work. I started myself on the protein shakes because I saw my protein was low. My white blood cells are high. I’m trying to navigate… I even thought about seeing a nutritionist.¬†

VIVO: When you said that your blood work comes back and your white blood cell count is high, was it before when you would have blood work done, did anybody ever see anything?

Oncology Nurse: I saw the results.

VIVO: You said that they had seen things before, and you just weren’t informed about your own health. I’m interested to know were there any other red flags? Did anybody say they were monitoring anything?¬†

Oncology Nurse: Well, since I was 21, I was told, “Oh, you can’t have anything wrong. You’re too young.” Meanwhile, I have a cardiac arrhythmia. It was my brother who found it because all the cardiologists I went to said, “You’re too young. There’s nothing wrong with you.” My brother listened to me. He was only a fellow. He was doing his fellowship in cardiology. He had me come to the hospital he was training at, and he did the tests. He did the sonograms. He diagnosed me, and he put me on Corgard, which I have been on ever since I’m 21. It’s that whole thing about you’re a young woman, you can’t have anything wrong. I never saw the blood work. I don’t know. Nobody ever spoke to me and said, “Oh, you have issues with your blood work.” But now I look at it, I pay close attention to it. Because the other thing is, if you don’t look sick, people don’t think you have anything wrong and they poo poo it.

VIVO: You said you worked in a teaching hospital or a-

Oncology Nurse: I was at the largest hospital system in New York.

VIVO Strategist: What kind of nurse were you at that point?

Oncology Nurse: I started out in child psych. Then after 11 years, they eliminated my position as the nurse manager. I went into nursing education. I did a lot of teaching. Then I was a patient education coordinator for three hospitals.

That’s why when it comes to patient education, I believe everyone should be doing it, and everyone has a right to know. I believe because you don’t get paid to do patient education, that it’s not being done. They’re looking at things they can bill for. You can’t bill for patient education, apparently. When you only have 15 minutes to see patients, how much can you do? You have to be able to have time to do a thorough examination. I think we are lacking there. After patient education, there was an opening in corporate nursing. I ran all of the continuing nursing education conferences for the health system. I met people from all over the country, experts from all over the country. I was dealing with all specialties. Then after 14 years, I followed my vice president to a university where she became the dean, and I happily have been there ever since.

VIVO: In your own experience as the nurse, especially when you’re doing the patient education, is the education you offer always congruent with what the doctor says?¬†

Oncology Nurse: That is interesting because early in my career, I was doing patient education about medication to a family. A physician stepped in and said, “How dare you? That’s not your role.” Luckily, I came from a program that advocated for strong nurses, and I felt like my hand was slapped, but I still wasn’t going to listen to him. This was in the 80s. In 1984, I became a nurse and I said to myself, “It’s their body. They have a right to know.” He was an old school physician. But they thought that they were God. The doctors were God, and we were the handmaidens, but that’s not how I was trained or educated. I got slapped from some physicians for it, but I looked at them like, “Who the hell are you?” I have a brother who’s a physician. You’re nothing more special than he is. I’m from New York, remember?

VIVO: So as far as the leukemia care, what is your diagnosis

Oncology Nurse: Chronic lymphocytic leukemia, or CLL.

VIVO: You said that they don’t start active treatment until three centimeters. Is there anything you are on as far as that goes.

Oncology Nurse: No.

VIVO: So they just wait? How often do you get tested?

Oncology Nurse: Four times a year.¬†I have a mammography. I was going for scans every six months, but now I’m back down to once a year. But I do see a breast surgeon as well. Honestly, I don’t feel like they are measuring the lymph nodes like they should be.

VIVO: Interesting.

Oncology Nurse: But my hematologist oncologist seems to be focusing more on specific symptoms. He’s very specific about, “Are you having night sweats?” I said, “At my age, I’m always having night sweats. How can I tell?” The night sweats. I watch carefully for bruising. I do have some mild bruising, but I also have a colleague who has lymphoma, and she had to get chemo. I hate to say it, but I compare myself to her, and I think I’m still doing better than she is. We just had a conversation this week where she said she noticed that she was bruising a lot more. It’s the bruising, it’s the night sweats. I’m trying to think what else there was. Oh, the weight loss. At one point I lost 10 pounds and I called him, and apparently it was because I was walking the dogs a lot.

VIVO: That pet therapy that you were talking about.

Oncology Nurse: Right.

VIVO: As a nurse, what advice would you give someone who feels like something’s happening but isn’t being told anything by physicians? And, as a patient, what would be your advice be for that person?

Oncology Nurse: Well, I think it’s the same advice no matter what role I’m in now. It is: ask the questions, advocate for yourself, and if you don’t feel comfortable with your care provider, change. Also, find out who the experts are. I went through this with my cousin. She was diagnosed right after I was, but with a very rare form of sarcoma that was deadly. I went with her to her appointments. Because she had a childhood cancer that they’ve never seen in adults before, I said, “Do you want to go to St. Jude’s? Where do you want to go? Wherever you want to go.” Don’t limit it to just your area. Fight for yourself and fight for the best care and go outside your comfort zone as far as traveling to where the best care is.

Participant Profile

• Gender and medical status: Female, Nurse with Chronic Lymphocytic Leukemia (CLL)
• Geographic location: New York (temporarily in Tennessee during interview)
• Years of professional experience: 40 years as a nurse
• Practice settings: Previously worked at largest hospital system in New York, now at Adelphi University
• Career progression: Started in childcare, then nursing education, patient education coordinator, and corporate nursing
• Health history: Family history of breast cancer (grandfather, aunt), diagnosed with CLL after enlarged lymph nodes found during mammogram
• Key challenges: Delayed diagnosis despite symptoms, poor communication from healthcare providers, discovered cancer diagnosis by reading her own chart, navigating fatigue while working full-time and caring for 97-year-old mother