Arne Vainio, M.D., receives the Physician of the Year from the Association of American Indian Physicians during the organization's annual conference in Shawnee, Oklahoma, on July 28, 2017. Photo courtesy Ivy Vainio

Health | Opinion

Arne Vainio: 'The doctor missed my cancer. How can I trust him?'

Monday, March 12, 2018

What are my options?

By Arne Vainio, M.D.

“I want to know how he could have missed part of the cancer. It was right there on the CT scan and he thought they got all of it. Now it’s back and it’s spreading and I have grandkids. This is his fault and I want to know what my options are.”

This wasn’t an office visit. I was in the grocery store looking at apples when he and his wife came up to me. “You’re that doctor on Native Report, aren’t you? We watch it every week and we’ve been learning a lot. I haven’t been able to get any good answers from my doctor and I’m not happy about it.”

I could tell he was angry and his anger was deep. He had dark circles under his eyes and he had the gaunt look and loose skin of someone who had been losing weight for a long time. His voice was hoarse and I guessed he was in his sixties and he looked like he was in his eighties. His wife stood quietly by him and I could tell she didn’t want to stir his anger and I could also see resignation in her flat expression. Her eyes met mine and she shook her head back and forth behind him to indicate an apology she couldn’t speak out loud.

I could smell cigarette smoke on both of them and he had yellow-brown stains between his right index and middle fingertips from holding decades and decades of cigarettes.

“I started coughing a couple of years ago and antibiotics every month or so seemed to help a little bit. When I started to lose weight, I got a CT scan that showed a spot in my right lung. I had a biopsy and it turned out to be cancer. It was only in one place and I wanted it out and they took out part of my lung and I thought that was that.”

“There are different types of lung cancer. Do you know what yours was?” I asked.

“I don’t know. They said a lot of stuff. It was the kind that can really spread and that’s why I was glad I had the surgery. Now I don’t have that part of my lung and my cancer is back. I went back and yelled at the doctor who did my surgery and that visit didn’t go well at all and I don’t want to go in for visits because it’s always bad news. Now I’m afraid of everything they offer me and I’m afraid this will just keep getting worse. They tell me the chemotherapy can make me really sick and that radiation won’t cure it and it’s in too many places for any more surgery.”

“What do you feel you need to do?” I asked.

“I don’t know. I guess my only real option is the chemotherapy, but I don’t want to be sick all the time. Is that the best option, Dr. Vainio? Give it to me straight.”

“I don’t know everything about your cancer, but from what you’re telling me, this has spread and that makes it more difficult to treat. Surgery is good if it’s in only one area and it sounds like that was the case at first. The problem with cancer is that small amounts of the cancer can spread to other areas and be too small to see and they can grow without any symptoms. There are some newer treatments coming out that might be helpful depending on how much it has spread and sometimes it might be spread too far to stop it, but you need to talk with your Oncologist, your cancer doctor, about that. Every single patient who sees a cancer doctor is afraid and angry, but being afraid and angry won’t serve you well. Any doctor who chooses to treat cancers does that for a reason and most of their patients are fighting battles that can be difficult to win. It takes a special kind of doctor to be an Oncologist and you need to understand that. Your Oncologist went to medical school and all those years of training just to help you through this uncertain and scary time.”

“But he missed my cancer. How can I trust him?”

“He didn’t miss anything intentionally. Just a little bit of cancer that’s already spread can be too small to pick up and that’s why they keep checking the scans. That’s why they offer chemotherapy after the surgery. It’s to try to get those little bits of cancer that may have spread before the surgery.”

“I didn’t go back for the CT scan after my surgery because I was sure it was gone. They told me it was gone and now it’s back. Why shouldn’t I be mad about that? I have grandkids I want to watch grow up.”

He was pretty angry now. His wife stood silently next to him and she was looking at the floor. All three of us were quiet.

“Do you really want to know what I think?” I asked him.

“Yes. I do.” He answered.

“You need to spend the time you have with your grandchildren. You need to love them and you need to read to them and you need to laugh and tell them stories. You need to love your wife again. Your vows were for better or for worse and no doubt you’ve had some tough times. Everybody has. She’s still with you, in sickness and in health. She loves you and she wants her time with you to be like when you first met. Where did you meet?”

He looked at her and she slowly looked up from the floor and she smiled when she looked at him. His voice was still hard, “I was driving truck for her dad. I fell in love with her the minute I saw her and he didn’t like me for that.” He laughed a little bit. “I almost lost my job.”

She took his hand and looked up at him and she finally spoke. “Once my daddy realized he couldn’t stop us from being in love, he put on the biggest wedding in town and everyone was there. I wore my mother’s wedding gown and I still have it in the closet at home.”

He lifted her hand and said, “This was my mother’s wedding ring. I never really thought of that until now. I always meant to buy you a newer ring someday and I guess that just never happened.”

She pushed the ring with her thumb so the small diamond stuck up a little higher and she whispered, “This is the only ring I ever wanted.”

His eyes were softer and the hard edge was gone from his voice. “So do I just go in and talk with the cancer doctor? I think I might have burned some bridges last time I was in there. I even said I was never coming back.”

“Your Oncologist will understand. People with cancer don’t know what’s going to happen and most of the time that makes them angry and afraid. Your wife loves you and your grandchildren are waiting for you to be a grandpa. You have snowmen to build and kites to fly and books to read and it sounds like you need to make up some time.”

“I do, Dr. Vainio. I think I owe Linda some of that time. I’ve been tough to live with for the past couple of years and I plan on doing my best to change that.” He looked directly at her and said, “I’m sorry, Linda. I promise I’ll try to be better.”

They were holding hands when they walked away and Linda smiled and waved at me as they went down a different aisle. I smiled and waved and went back to looking for apples.

Arne Vainio, M.D. is an enrolled member of the Mille Lacs Band of Ojibwe and is a family practice physician on the Fond du Lac reservation in Cloquet, Minnesota. He can be contacted at a-vainio@hotmail.com.