Cancer is one of the most common diseases of our age, and yet those who face it rarely know what’s about to happen to them beyond the broadest terms. “Cancer up Close” is an open recount of Michele Goncalves’s cancer journey from pre-diagnosis to life after treatment.
As someone who favors treating my maladies as holistically as possible, I struggled with the idea of treating my stage 3 rectal cancer with chemotherapy.
Chemotherapy and radiation therapy damage cancer cells but can’t distinguish these cells from normal cells and so the side-effects of this treatment can be devastating.
In my mind, chemo was a toxic substance that I didn’t want within a 100-mile radius of me. In the end, I had no choice and I’m now dealing with side effects and platinum toxicity. (More on that subject in a future article.)
However, as if on cue, the first surgeon I met 17 hours after my diagnosis urged (I’d even say pushed) me to talk to his oncology partner, Dr. S., before making any decisions. I resisted but eventually agreed. What unfolded in that meeting still upsets me, but before I tell you what happened, I need to share something.
Cancer treatment is a multibillion-dollar industry. This is an important fact to keep in mind as you face a diagnosis. Hospitals will even offer free cancer screenings as a way to identify and attract new patients. While the people working in this industry have a sincere wish to help their patient, there are realities that patients need to understand. For one, there is a sales aspect involved. And another is that cancer doctors and hospitals are in competition with one another for your business, hence the commercials you’ve seen on TV. In other words, you have a choice of where you get treated.
If you look at treating your cancer like dating, I think you will be better prepared for what may come. Would you marry the first person who asks you out on a date, thinking they are the only person on earth you could possibly spend your life with? Of course not. So, I would urge everyone not to settle for the first oncologist or surgeon you are referred to.
In fact, I’d suggest setting up appointments immediately after diagnosis with at least two other cancer centers to hear what they have to say (once you have all your CT scans, MRIs, and any other test results back and in hand). Just remember to call quickly because appointments with doctors (especially good ones) can sometimes be several weeks away, and with a fast-growing tumor, it’s better for you to not drag things out.
Also, remember that you are the boss in this surreal experience of “speed dating” for a cancer team. It’s you who decides who gets the honor and income of treating your illness. I hope you never feel pushed or rushed into making your final decision.
Take the adequate time (but be quick) to think about your “dates” with the different doctors, and choose the team that feels right. Do you feel like your opinions are being respected in that initial meeting? Did you feel like you can talk candidly and freely with them? Do you get the sense that they will work with you as a team to modify or stop your treatment if you don’t feel comfortable? These are critical questions to consider. It is one of the most important decisions you can make along this journey.
I’d like to tell you the story about my meeting with an oncologist at a hospital in central New Jersey.
As I said earlier, the first surgeon I met took it upon himself to reach out to his oncology partner after I told him I didn’t want chemo. He tried to get me in as soon as possible. I met the surgeon early in the morning on Dec. 15, and had a message on my phone later in the afternoon that day from the oncologist’s office. They said an appointment had been made for Dec. 21.
I was asked to call back and confirm, but I didn’t. I was mentally and emotionally exhausted, frightened, and angry. I wasn’t sure yet whether I would use alternative or conventional cancer therapy or a mix of both.
In my heart, I wanted to avoid going the chemo route, and now, I was coming face to face with this treatment. On top of that, I felt like I was being pushed (by doctors and some family) into accepting this option, which made me rebel a bit.
I received a follow-up call from Dr. S.’s office on Dec. 18. This person left me a voicemail and said in a nasty tone, “This is our second call, you have not confirmed yet, so let us know if you want to cancel so we can give this appointment to a patient in need.” I was a bit annoyed, but being from New Jersey, I’m used to rudeness, so I called them back and told them I felt this appointment was too soon.
I explained that I had not even had my required CT scan and MRI done yet, so what were we going to talk about exactly? There are no tangible results to discuss. I wanted to reschedule for Jan. 8 after my tests would be completed.
The person I was talking to kept pushing me to keep my Dec. 21 appointment and was giving me a very hard time about moving it to Jan. 8. She said that I’d feel so much better if I just sat down with the beloved Dr. S. who was so great.
However, I kept insisting that I wanted to talk about real and concrete things about my case, once I got the test results back. I didn’t need to discuss theory. I felt like I was talking to customer service and trying to get out of a cellphone contract. This person wouldn’t take no for an answer.
I thought she was trying to earn a commission or get some kind of year-end bonus through my visit. Her sales pitch was just a bit too hard for my taste at this delicate time.
This kept going on for a few more minutes, until I finally said: “Look, I’m not going to die in the next few weeks, so let’s set it for Jan. 8, OK?” Finally, she backed off and agreed and the call was over. Sheesh!
I thought to myself, how can you hassle someone who was just freshly diagnosed with cancer like this? Unfortunately, the tone from that phone call carried over to my actual visit with the doctor on Jan. 8.
I attended the meeting alone (by choice), and my goal was to get information and hear what they had to say about their treatment protocol. At this point, they had seen my MRI and CT Scan results, so now we could actually talk about facts.
I walked in and finally met Dr. S. (after my blood pressure and other vitals were taken, of course). I went through my long history going back to when I had food poisoning on a business trip in Colombia, to having a stool test done in 2015 by my functional medicine doctor in Michigan that revealed a rogue bacterial infection (Klebsiella Pneumonae), to having blood in my stool for a long time, to the present pains during my last business trip in Russia.
She took very detailed notes for about 20 minutes and then sat down next to me to discuss how staging works for rectal cancer. The information was the same as I had heard from the surgeon.
Then, she said she looked at my MRI and placed me in Stage 3, or borderline Stage 4. Several lymph nodes appeared to be impacted and the MRI report wasn’t conclusive if the tumor had already penetrated outside the immediate area. She looked very serious, and her tone was hardly hopeful.
From my prepared list of questions, I asked her what her success rate was with my type and stage of cancer, and she looked at me as if I had horns growing out of my head! She replied in a stern voice, “Everyone is different.” She never answered the question or offered a few successful cases she had to give me some hope.
Cancer doctors are very reticent to use the word “cure” and will sometimes say treatments have “curative intent.”
Sometimes it can take years to know if cancer has been truly cured, or if it is simply hiding and waiting.
She walked me through her protocol for treating Stage 3 or 4 rectal cancer. The only option presented to me was to put a port into my chest and follow a regimen called FOLFOX, a mix of two different chemotherapy drugs that would be given via infusion over two hours. Then I’d have to drag around a bag of chemo in a pouch for two additional days infusing into my port. This would be done for eight cycles two weeks apart. There would be chemo and radiation following that for 5 1/2 weeks, and then surgery.
I asked to see an example of what this “port” looked like. When she showed me, I almost fainted. I pictured myself as a cyborg walking around like a chemo zombie with a bag of this crazy toxic liquid in my Louis Vuitton purse.
I said, “Um, I really don’t want that thing.” She replied that this approach was the gold standard to treat my cancer and anyone who says otherwise is not following standards. (It turns out this is not quite true as another protocol exists without a port.) Then she reminded me that I had stage 3 cancer and that it isn’t a joke! I thought to myself, “Gee thanks, honey, for making me feel like I’ve got no chance at all.”
I told her that I was getting a second opinion at the Cancer Treatment Centers of America in Philadelphia the following day. Dr. S. and the nurse both rolled their eyes. The doctor said to her nurse, “Um, you want to take this one? I can’t, I can’t.”
The nurse went on to say in a very schoolmarm lecturing tone that they heard bad stories about them, like how they did unnecessary CT scans after every cycle of chemo to make more money (which isn’t true). I was appalled at their commentary which struck me as unprofessional.
The final straw came when I mentioned that I have a functional medicine doctor in Michigan, and I asked if they would be willing to work with them during my treatment, as I intended to stay on my supplements to boost my immune system through any type of conventional treatment.
Dr. S. said their pharmacy would evaluate all of them and they would be the ones to decide if I could use it or not. However, she said that the red blood cell support I was on was a definite no because these are usually high in iron and it could make me more constipated than I already was (my tumor was almost fully blocking my colon).
I explained that I was put on that supplement after my diagnosis because a blood test showed I was anemic. The pills made me feel better, and my lightheadedness was less severe since taking them. However, my explanation apparently didn’t matter (in other words how I actually felt didn’t matter); she said she didn’t support them. I was furious.
Nobody has more insight into their own body and how it reacts to medications, food, and so on than they themselves. There is also nobody who has more invested and therefore should have more say in how they pursue medical treatment. Unfortunately, many doctors don’t quite understand or accept this reality.
I got up out of my chair and said, “OK, thanks!” I couldn’t get out of there fast enough. This was the worst doctor’s appointment I had ever had. I felt disrespected and dismissed.
I never went back.
A few days later, I received an email asking for written feedback of my visit with that doctor. I documented everything I’ve just shared and added: “If you think this is the way to earn my business, you are sadly mistaken.”
I was relieved that I had another facility to consult within my back pocket. My experience at the Cancer Treatment Centers of America was very different, so tune in next time when I will share what that was like.
Until then, breathe deep, be kind, and take it one day at a time.
Michele Goncalves is a financial compliance and fraud auditor for a Fortune 500 company by day and a passionate pursuer of holistic and functional medicine knowledge by night. She is also the author of the column The Consummate Traveler.