I Fired My Oncologist, Twice
In reality, I fired two oncologists.
From the beginning, I was diagnosed with Stage 4 colon cancer in November of 2020. I was admitted to the emergency room with severe abdominal pain resulting from a 6 cm tumor that had obstructed my bowel. There is a story behind that, but for brevities sake, I’ll start here with why I fired my oncologist.
I Fired My Oncologist: Physician Number One
To give the first physician some credit, on my night of surgery he popped into my room, sat on the couch, apologized for coming in so late, and said something to the effect of, you have stage 4 colon cancer but that’s ok because we will give you chemo. You won’t lose your hair, your quality of life will be good and that should take care of it. I was not groggy from anesthesia. My current concern was the pain in my throat from the nasogastric tube ( a tube inserted through the nose to the stomach to keep the stomach empty.
I was a little surprised by his comment but figured OK, treatments for cancer have changed and more people are surviving advanced cancers so maybe this is all true. He left the room after giving me a little more information on when and what would be happening. The nurse came in and I asked told her what he said and asked if he was just “blowing smoke”. Her response is that he is a good doc. She also was a colon cancer patient.
Recovery went well over the holidays with my family (only a couple of them as COVID was an issue at the time). I had an infusion port inserted early in December and otherwise, my surgical recovery went well and I was adjusting to the colostomy. (In reality, I still am not fully adjusted but it is what it is).
chemotherapy was started on December 28th. I was advised of the possible side effects like cold things feeling frozen when you touch them and numbness. I told myself that I would be fine.
My hair started shedding, not in chunks but definitely enough that I looked like Einstein with my shaggy hair. I developed the issue regarding touching cold objects. Bothersome but not terrible. On the second treatment, he added an immune therapy called Vectibix. Three days later I felt like crap. I developed a fever, diarrhea, lack of appetite, and nausea. I went to the ER for this issue and they hydrated me and sent off a stool culture. The culture didn’t show anything. The assumption was a reaction to the Vectibix. That agent was discontinued
At the next office visit, I got the first hint of a physician I didn’t like as well. I felt like he wasn’t happy about the reaction. Do you know how people give off different energies? So much so that you can feel it? He would change the agent to another but made it clear that he would go back to the Vectibix if necessary. Hmmm.
That winter was nutso for a lot of people. Office visits were virtual as much as possible because of COVID. I had one such visit scheduled a month or so later. It was supposed to be at 2 pm, but 2 pm came and went. I called the office and they said he was behind and he would be calling soon. When 5 pm came and went, I knew I didn’t want to talk to him that night as he would be tired and cranky. I had that experience in the office already.
Unfortunately, he called at around 8 pm. I was not feeling well from the chemo and dropping weight like crazy. I don’t remember my exact words but I wanted to feel better. He must have taken it like I wanted to quit chemo and he went off on a tangent about how I would progress and the terrible pain I would have like I have never imagined and that it didn’t matter on or off the chemo, I wouldn’t gain the weight back and yadda yadda. I don’t remember how the phone call ended except that I felt like he hadn’t reviewed my chart before talking to me and he definitely needed to go home and get some rest.
Fast forward to April. I now have numbness halfway up to my knees. No pain, just numb. I can’t taste anything because the chemotherapy has affected my taste buds and I can’t even perceive the texture of the food. I am sitting in the office waiting for my appointment with my doctor. He walks in. We chitchat. I whine. And he looks me in the eyes and says “Cancer Always Wins”. My first thought was let me out of here. My second thought was No it doesn’t and if that is true about his patients, I need to go elsewhere. I fired my oncologist.
That night I was on the phone with Cancer Treatment Centers of America. It was my perception that they were more holistic in their approach to cancer. I was at the Illinois facility within the next two weeks. I notified my provider that I was transferring care (AKA You’re Fired). His final note said that I was transferring even though the treatment would remain the same.
I Fired My Oncologist: Physician Number Two
Physician number two, in reality, was a really nice guy but he left the practice. I didn’t fire him. Cancer Treatment Centers of America (CTCA) is known for the way they treat their patients. You can get the story on their website but they are very pleasant people. On my first (look us over) visit, I met the nutritionist, naturopath, gastrointestinal surgeon, chaplain, and my new oncologist. I was impressed so the transfer was easy.
Let me say from the start that I have had the full support of my family in my decisons. No one has ever thought me crazy. My sister has put her life on hold to watch my dogs when I’m out of town for treatment.
Back to CTCA. My husband and I traveled there every two weeks for two months. I was also referred to a local doctor who would co-manage my case so treatments could be provided near home. I do have to thank the first doctor for that as he refused to comanage but did set up the referral.
My intuition told me to stop chemotherapy so in July I said enough. That was fine. Dr. number two was OK with the break. However, he left the practice in August. I was supposed to go back for a follow-up visit in October but they didn’t have the template in for the new doc and did I want to be squeezed into another docs schedule. Having had experience with overworked physicians, I said no, I’ll wait. I wasn’t getting chemotherapy and I was starting to feel better so I figured that other people needed that appointment more than I did.
My next follow-up was on February 21, 2022. By now I’m feeling pretty good. Still a lot of numbness but I can taste food. My appetite was back. I was eating more meat but no junk food. I was totally caught off guard when my CT scan showed a new node.
Doctor number two (who is really doctor number 3) is fired
Waiting for test results is always a time for increased cortisol. My heart is pounding, my hands are cold and clammy. I wasn’t really expecting bad news.
In walks number two (doctor to be fired). He said hello (I think) and stood against the wall (didn’t sit down). My memory says he crossed his arms but that could be my imagination. He delivered the news. Your scan shows a new 1.8 cm node in the lower lobe of your right lung. I’m going to arrange a PET scan and consult with radiation oncology. WAIT JUST A MINUTE I said. I wasn’t planning on staying here more than a day or two. He said it would take a day or so to clear it with the insurance and so on. I asked if this could be done close to home. He wasn’t thrilled but he agreed that it could. I fired my oncologist again.
Talk about focus. I am so outa here. I don’t remember eating or anything that night. After going back to my room I called two integrative medicine places. Envita in Arizona and Hope 4 Cancer in Mexico.
My ultimate decision was Hope 4 Cancer.
Why did I fire the second (really third) physician? His paternalistic attidtude. By the time I had gotten this far, I had done enough research to know the type of care that I wanted and what I would do if my cancer flared. Yes, I would have probably transferred care anyway but it was his demeanor that put me off. I am also a licensed health care provider. I have learned a few lessons about talking to patients through this whole ordeal. Some want you to tell them what to do but most really want a conversation of options.
What about my comanager near home? He is still with me. When I first met him, he said he would support me in any decision I made even if it was to do nothing. When I transferred to Hope 4 Cancer I made an appointment to see him. I showed him my proposed treatment regime and asked if he would continue to support me by ordering my port flushes and periodic CT scans. He said he would. He is truly a special person. Most conventional docs won’t do that.
The Moral Of The Story
Don’t be afraid to fire your provider or get a second or third opinion. The relationship between a provider and patient needs to be one in which both can freely speak their thoughts, opinions, etc. This is a team sport. If you can’t communicate openly or even if you just don’t agree with the options they are giving you but otherwise think they are nice people, you should still feel free to leave with no hard feelings on either side.
Cancer and other chronic illnesses cause and are made worse by stress. There is enough stress in the diagnosis alone. You’re healing journey will be much better if you feel at peace with the path you have chosen. So, if you need to, fire your oncologist.
I’m happy to entertain comments and questions.
Please direct questions to firstname.lastname@example.org
Until then God Bless
Theresa Lohman DNP,FNP-BC, NBC-HWC