Scanxiety Revisited

There are words universal in meaning in the cancer world. It doesn’t matter if they are spoken by an oncologist or patient. When one person uses them, the other understands. Cancer, treatment, mastectomy, radiation, labs, and scans are all very broad terms, yet they all have a shared understanding between people.

Scanxiety isn’t one of those words. Patients who get scans know this word well. I used it with a treatment nurse back a few months ago and it was unfamiliar to her. I didn’t make too much of it but I began to wonder if this was a term medical professionals didn’t use. Why would they? They are not the ones having scans. But if they don’t understand the word, they also don’t understand how many of us feel.

Scans came up too soon in my life again and I needed my port accessed. My phlebotomist shared with me that she had recently learned about scanxiety. She understood what it meant and how it could affect people. I was pleased someone who was not a patient got it.

I don’t know how many oncologists and treatment nurses are familiar with the term. I’ll do some informal surveys. If there is understanding and empathy around scanxiety, we are more human. We have feelings and emotions. We are not rogue cells, just patients, or subjects.

My scan team has always gotten it. I get the bigger MRI scanner. There’s a washcloth gently covering my eyes so I can’t see how crammed into that tiny space I am. Lavender oil is sprayed on gauze and placed on my chest so it can waft up. Music of my choice is played. It is just like a spa.

Not. But they try.

Scanxiety happened on my very first MRI oh so long ago. A massive dose of claustrophobia was more accurate. The techs could barely get me in the machine. I would have pushed back but my arms were strapped down. The immobility aspect also impacts my claustrophobic feelings. After that, lorazepam became my sometime friend, along with the other provisions with lavender and eye coverings.

Imagining the scanner as a protective cocoon works some of the time. I am safe. For a stretch of time, I am shielded from the rest of the world. It’s a cozy world just for me and no one else. I really don’t have to do anything but lie there and occasionally hold my breath. Do I feel like a butterfly after emerging from my cocoon? No. Maybe I’m one while in the MRI and then turn back into me when I’m rolled out.

Jumping to present day scans, I haven’t felt the scanxiety on the last few. On the last two, I was extremely hopeful for good results. Hope and excitement replaced anxiety. Those scans showed progression. I feel a numbness now about scans. There isn’t worry but there isn’t hope either.

Numbness has its benefits because I’m not feeling. These blasted machines are one more aspect of cancer life that has become routine like office visits and treatments. Yet, it isn’t natural for us not to feel. Being alive means we feel.

One reason why I’ve had scanxiety is due to reactions from the gadolinium based contrast dye that is used in the MRI scans to detect tumors and growth, or regression. Eovist is used for my abdomen MRIs and I’ve never had any problems with it. Multi Hance was used twice for bony pelvis MRIs. It was fine at first. I experienced worsening leg pain and muscular issues about four days afterward both times. I was hospitalized the second time with intense pain. Multi Hance contrast was the only correlation.

A radiologist came in to talk to me at one of my last scans because my story is so atypical. A third contrast agent could be used called Dotarem. The Multi Hance would be preferred for what the scan was looking at today, but they didn’t want to use it. Good news as I wasn’t going to let them use it. Eovist didn’t show these organs well so it wouldn’t do much good to use it. Dotarem was another choice, but I hadn’t had it before and no one knew how I’d react. Scanxiety momentarily returned. Another radiologist was consulted and they recommended Dotarem. I was willing to give it a go. It took 45 minutes for all of this to be decided, but I was pleased that I had a team of people working on this so I stay safe.

I had some leg pain in both legs a couple of days after that wasn’t there before. It could be muscle related, bone pain, or scan related. Eventually, it went away. I would be hesitant to receive Dotarem again.

Revisiting my scanxiety has shown me that people can view the same object very differently. I see the scanner all too emotionally even though I know it’s yielding needed information. I believe my oncologist and radiologist see it as an inanimate object incapable of arousing emotion. It’s a sterile machine in a controlled environment. Therefore the person being placed inside (shoved, crammed, stuffed) is sterile and controlled as well. Results don’t have emotion. Facts are facts and any feelings are nonexistent or unattached.

All this brings me to wonder what causes oncologists anxiety. I would love to find out. Understanding one another better would support better communication. Better communication leads to better patient care.

And if someday patients are offered a massage after a scan to relax and truly make the experience like a spa, I would support that added to my care.

Treatment Day Lessons

My treatment for metastatic breast cancer happens at a teaching hospital. It isn’t unusual for a resident or intern to accompany my oncologist during my office visit. I have become a quick study as to who seems confident, empathetic, and knowledgeable in a few short minutes. Some interact more; some merely observe. These residents come and go.

What I failed to realize until a couple of weeks ago was just how much teaching goes on between my treatment nurses and myself during treatment and from that experience. We learn different things as we teach together. Below is a description of what I took away from a recent treatment.

I’ll start with labs. My port had not yet been replaced at the time which meant an IV line was placed in my arm for the blood draw and chemo. Both arms have been used/abused generously from a hospital stay and a previous treatment visit. My port was so handy for my personal comfort and because of my hard to find veins. The IV Team was paged, and they came to detect a vein. I love that there is a team for this sole purpose. They rolled in with an ultrasound on wheels and searched for a vein. A few phlebotomists huddled round and we all watched. A perfect black round shape was found that was described as a juicy vein. It seemed newsworthy to the other phlebotomists that two different needle sizes were available to access veins and that I needed the larger one inserted. Now they know. I asked how long ultrasounds had been used to support vein detection. The answer was about 10 years. I couldn’t imagine what it was like before this when someone would be poked relentlessly multiple times to find a vein so blood could be drawn and an IV line set. Pure torture for someone like me. I also learned fewer people chose ports ten years ago. Now, the reverse is true.

Patients and nurses also have a lot to teach and learn from each other.

I was fortunate to have one of my favorite nurses assigned to me. Libby had only been my nurse once before, but I liked her instantly. She was thorough, caring, and interested in me. It didn’t hurt she thought I looked much younger than my age. Flattery will get you everywhere, right? I was thrilled to see Libby open the door to my room since the nurse who had showed me to my room and took my vitals struck me as unsure about the equipment. I decided she was new, good hearted, but new.

Libby had done her reading and read the medical notes from my recent hospital stay involving the leak in my port and a blood infection. The teacher in me always finds someone who does their homework impressive. I learned Libby had once been an education major herself before switching to nursing. Anyway, she sat down and wanted to hear more about exactly what happened and how my problems were discovered. She sat down to listen. That action also impressed me. When nurses have this information, it helps them look for signs and symptoms. I was more than happy to share information that could be helpful to other patients.

Later, Libby told me about some information that was shared with the nurses about an anonymous patient that had swelling the size of a golf ball on her neck where the cause was unknown. Guess who that was? I rather bashfully admitted that was also me. I felt like a problem patient. Yet, I was pleased that the other nurses had been made aware of the situation and what was done to address it. Furthermore, I learned that the special triage nurse who had come in to examine my throat and neck that day had questioned if the port was working effectively when an allergic reaction was thought to be the cause. I remember her coming in to assess me but had forgotten she questioned my port. It was ruled out because my port still returned blood. All this is important because it can help them connect dots faster in the future. I never realized I was being so useful by having all these problems. I sure know I’ve learned things I never thought I would.

One thing I wanted to happen during my visit was to have my sutures removed from my port removal. There was a small suture drama days earlier where interventional radiology told me still having these could pose a problem for them placing a new port. It was completely absurd and another long story. When I finally spoke to my surgeon’s nurse, I asked her if I could get someone to remove them while having treatment. I would be at a hospital after all and it shouldn’t be that hard, certainly not enough of an uproar to uproot plans. She agreed. Another nurse came in before my treatment started and took them out in minutes. It was so simple that I almost thought I could do it myself, but my small scissors and tweezers aren’t sterile and I’m not quite that crazy.

Finally, the original nurse who had shown me to my room returned. She had returned with some questions on cold capping. I’m thinking I must have a reputation for being approachable and somewhat informative. Her questions were pretty standard involving timing for post-cooling and then thawing. It’s different for different chemotherapies received. If it helps someone learn that can support other patients, I’m all for it.

Collaboration in patient care benefits everyone, including future patients. I never really thought about nurses possibly learning from me. Now, I realize it’s exactly like how my students taught me as a teacher. I learned tons from them. My role as the patient has similarities to that of the student. We all work together. My treatment day was a phenomenal learning experience for me and a good example of teamwork where I’m a valued member of the team.

When Your Oncologist Leaves

Two weeks ago my oncologist told me some devastating news – he was leaving. It’s honestly one of the hardest things I’ve heard at an office visit over the years, and trust me, there have been some tough conversations.

He is leaving the UW health system.

He is moving to Florida.

He said he had to go.

What does that even mean?

I know I have been unhappy with some of the management decisions that have trickled down and affected my care. There have been changes I don’t think serve patients’ best interests. There have been facility needs that have gone unmet or approached with band-aids rather than true solutions. There very well could be demands put upon him that I know nothing about and he feels he can’t work in an environment that doesn’t match his philosophy anymore. I don’t know anything for sure other than he is leaving.

He is a GOOD DOCTOR. The best.

I understand he has to do what he needs to do. I can’t be mad at him for doing what is best for him. However, if he’s leaving because of some bureaucratic crap coming down from people who have lost their connection to treating, caring, and curing people with cancer, then I am outraged. My gut tells me to be outraged.

Whatever the reason, I am losing my oncologist.

I feel such sadness and an immense sense of loss. I have that feeling of a small child who suddenly discovers she has lost sight of her parent in a grocery store and stands frozen and scared as she begins to cry. I feel broken like a mirror that has shattered into many shards of sharp glass. The image looking back at me is now jagged and distorted. I feel like a kicker who missed placing the final kick through the uprights by inches in a championship game. Everything feels wrong. I am all out of sorts.

My oncologist has been a constant in my life for more than seven years. I’ve seen him every three weeks for the last three years. I’ve known him for about fifteen years because he was also my mother’s oncologist. I have held him to a very high standard. I’ve depended on him to be there for me. This is someone whom I’ve trusted, respected, and knew was one hundred percent on my side. He is a good blend of medical expertise and hope that every oncology patient needs. He understands I have many questions, I worry, and I’ve always wanted (and will continue to want) aggressively appropriate treatment options. I will choose option A with challenging side effects over option B with lesser effects if A can potentially do better work than B. Every. Single. Time.

He’s gone to bat for me on more than one occasion.

He knew how badly I wanted to keep teaching and helped me keep doing what I loved doing for years. He also told me when he thought it was becoming too tough and unrealistic.

He suggested supplements that have helped me feel healthy and strong.

He encouraged more testing that opened doors to current protocols. Protocols that have been good for me.

My oncologist understood me. He viewed me as a person and not just as a patient. I have grown very attached to him. I will miss him.

Where do I go from here?

I am fortunate for a few reasons. The UW Carbone Cancer Center where I receive care is one of the top cancer centers in the country and the only comprehensive cancer center in Wisconsin. I know I will continue to receive quality care. I am also lucky that if my oncologist is leaving, he is leaving at a time when I am doing really well. I can only imagine how much harder this would be for me to handle if I were struggling physically. Lastly, my oncologist has taught me well. I’ve learned a lot from him about my health. He has really shaped my thinking since we embarked on our doctor-patient relationship. I daresay I may have rubbed off on him, too. At least I hope I have.

I am not always an easy-going patient. I’ve edited consent forms before signing them. Someone there once compared metastatic breast cancer to a cow that had been let out of a barn. It’s Wisconsin. I added on to that analogy and told him, “Just because the cow’s been let out of the barn, it doesn’t mean it can crap all over the pasture.” I’ve questioned, I’ve pushed back, I’ve disagreed, and I’ve complained. Mind you, I’ve also agreed, supported, amazed, and sparkled because that’s the kind of gem I am. And I am a gem. I like to think my spirit has never been diminished there because of my health status.

Oncologists come and go. I understand this is true, perhaps I have been fortunate that it took this long to happen to me. People move on in the professional world all the time. Yet an oncologist is very different. In my eyes, an accountant, dentist, plumber, chef, lawyer, teacher, or other professionals all have very different relationships with the people they serve. The relationship with a doctor is different, more intense, and more personal. I feel lost, abandoned, and alone. This person just isn’t going to be around and that makes it similar to a death in some aspects. A good friend of mine has had two oncologists leave her, and a third tell her she couldn’t see her again because she has passed enough benchmarks in time and is there is no evidence of disease.

The process has started to find a new oncologist so I have one in place when he leaves in a couple months. If you know me, you won’t be surprised that I’ve compiled a list of requirements my next oncologist must have.

My oncologist needs to be:

  • Accessible
  • Hopeful
  • Positive
  • Empathetic
  • Personable yet professional
  • Up to date on current research and new treatments
  • A lot like my current oncologist 🙂

My oncologist must:

  • Have a breast cancer specialty
  • Keep a very close eye on me
  • Advocate for me
  • Remember I am a person and not just a patient
  • Accept and even enjoy my personality (I’m anxious, I’m smart, I research a lot on my own, I advocate for myself, I can be intense and insistent, I’m thorough, I’m hopeful, I’m fun, I cry, I’m sensitive, and I’m tough).

Sure, I have high standards and I am not going to settle for someone who doesn’t meet them. A good fit is essential for my best care.

I am confident I will find the right fit.

Unfortunately, I feel the time has come for me to move away from the smaller clinic setting I love so dearly and transfer to the center at the giant hospital. I need to put more weight behind a preferred oncologist than my preferred location. Truthfully, I’ve heard whispers that the smaller clinic may not stay open. I wouldn’t be surprised if it closed. It would be consistent with the kind of nonsense decisions that have been made regarding that smaller setting. Then, once again, I’d have to make a move with either a new doctor, a new location, or both. More importantly, I don’t know if I can continue to go to my current clinic once my oncologist leaves. Maybe I need a fresh start. It could be the best choice I can make.

It would be tough for me to leave and make this change. I’ve also grown very attached to my nurses, NP, and even the schedulers and people at reception. Everyone is so friendly and it’s one of the reasons I prefer the smaller setting. I get attached far too easily. Still, I must put myself first and make the decision that serves me the best.

I will be fine. I have time to accept this change, make a plan, and transition positively whatever I decide. As for my oncologist, I will thank him, say goodbye, and be forever grateful that I have been in his care for so many years. He’ll always be my oncologist. I’ll just have two now.

Consider responding:

  • What helps you when you need to make a difficult transition?
  • What qualities or characteristics do you look for in your doctor?