Chapter 8: The Medical Oncologist and Surveillance.

If I could give you any advice about choosing a medical oncologist, it would be this:

Choose someone that you can talk to openly about what you need. I personally have trouble with this.

This is for life, so choose someone who you will be able to work with for the long haul.

A physician who is nearing retirement might not be the best choice. Someone who has just completed residency may not have the experience necessary. They would be up to date on all the newest treatment options though. Delicate balance of experience versus new technology.

Try and find a doctor who will not judge your choices or try to talk you into or out of something you know is right for you.

The closer to home the better. While for many of you living in rural areas that is impossible. The travel time, and the ability to make an appointment quickly can be vital to your health both emotionally and physically.

Finding a physician who has experience with this type of cancer is important. This is a very different animal. To have a doctor who is willing to do the work, to find the right avenues for your unique case, and to be open to new treatments is key.

While my medical oncologist didn’t have a great deal of experience with Ocular Melanoma, he had only had one case before, he was willing to look at the information I brought to him, and to do my scans on the schedule that was recommended. I knew him well enough to trust his judgement and he knew me well enough to take my suggestions seriously.

Being a nurse in this instance can be more of a liability than an asset. I know just enough about what the results of my tests show to be dangerous. Sometimes a little knowledge is a good thing. Sometimes not so much. When I start heading down the rabbit holes of what ifs, it can be overwhelming.

As I headed to my first appointment with Dr. Anthony, I had a folder full of information. I had articles from Pub-Med, reports from Dr. Fulton, discs with my scans, lab results and lots of questions I had been jotting down whenever one crossed my mind. It was a pretty big folder.

I went through the usual forms once again. Insurance, next of kin, medications, surgical history, medical history, family history, allergies, and on and on.

When I got called back for lab work the tech that was doing lab draws didn’t know me. Bonus! I think it always makes them nervous if they know I am a nurse. I never tell if they don’t already know.

The office was very well organized. I was called back quickly after the lab draw. Vital signs were taken. The nurse pulled my chart up on the computer.

She handed me a clipboard containing a form with a single question that was actually a series of questions. It read, In the last week how often have you experienced any of the following? Below the question was a list of concerns, feelings, and emotions. Things like have you felt down and depressed, felt like a burden, felt hopeless, unable to stop feeling worried or anxious, etc. etc.

The options were:, not at all, some days, more than half the days, or nearly every day. There were also issues like financial concerns. Do you have access to food and shelter? Are you able to afford your medications?

I found it intrusive and marked everything as not at all. I wondered if anyone ever answered honestly.

I have often administered a similar test, minus the social services questions. When patients come to the hospital with suicidal ideation, we utilize the Columbia suicide risk assessment. I don’t really think the tool is very effective, but that is a subject for another post.

I placed the clipboard back on the counter after circling a 2 on a 1-10 scale of how I was feeling in general with 10 being the worst.

Dr. Anthony came in and shook my hand. He took a seat on the rolling stool.

We reviewed my scan results. As I expected, there was some concern about the lymph node that was enlarged. It had not been on my original scans done in March. We talked about the option of doing a biopsy. I tossed out the idea that we could wait and see if it is still there on the next scans. Because this cancer usually goes to the liver first and rarely to the lymph nodes the consensus was that it was likely not cancer but… An ultrasound guided biopsy was ordered.

We talked about surveillance for metastasis. I made sure he had copies of my Castle Bioscience results. I also gave him a printout with the recommended schedule of scans that I had from our support group site on Facebook. I also shared with him some articles regarding the only approved treatment for metastatic uveal melanoma. Kimmtrak is used if the tumor metastasizes to the liver, but only if you are HLA-A*02:01 positive. It would require a blood test to see if I met that criterion. We would wait for that, and he would order it if it ever became necessary. He had been doing his homework and told me what he knew about Kimmtrak without looking at my article. I wasn’t testing him or anything. Well maybe a little.

He asked me how I was holding up?

“Ok, I guess.”

It is extremely overwhelming when you think about it. Between work, taking care of my mother-in-law, and my many other pursuits I stay busy. I think that helps. I have many friends who have sincerely offered to help with whatever I need. There really isn’t anything to do. It is just wait, and watch, and scan, and then wait some more. I didn’t tell him all that.

A simple “Ok, I guess” was all I offered.

He assured me he would schedule the lymph node biopsy. His office would call with the details.

I left feeling like I was on the right track. I had made a good decision in choosing him for my MO (medical oncologist). In truth, it was the only track available. I would be walking this road for the rest of my life and there is nothing I can say or do that will change that. I am glad I didn’t take the little quiz about my “feelings” after my appointment instead of at the beginning or I might have ended up in a puddle of tears on the office floor.

I was born and raised in Maine. My parents had several generations of stoic, Yankee blood flowing through their veins. I have that same fortitude. People who hail from the North Maine Woods do not readily discuss their “feelings”. We keep those inside and if it starts to bubble up, we tamp it down. I am not saying that is a good thing. It’s just the way I am.

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I take ashwagandha for

stress every day.