The Oncological Menu at the end of the Metastatic Universe

It just dawned on me as I was driving home, for expertise and advice we choose those people with whom who we agree, and more importantly, who agree with our way of thinking to be around us. No matter the circumstance: hiring staff; new friends; the closer of our family members; electing the president; even professional contractors and our mechanic. As human beings our fight or flight instincts can override our critical, logical thinking as a relationship becomes more intimate over time. We might find ourselves arguing and we may even decide to no longer see a friend due to irreconcilable differences of philosophies.

Simply stated: we don’t become friends with people we don’t see eye to eye with.

So why do we remain under the care of an oncologist with whom we disagree on treatment or with whom we cannot communicate well?  This person is the primary decision maker regarding the major decisions and details of how we can fight with the dread disease. They should at the very least talk to us and answer our questions in a way we can understand. I mean, if we’re good patients we become an integral part of our oncology team, and even go so far as to help in picking the solutions that we want as we go along our journey.  Hell, they cannot do it alone – they themselves wouldn’t have jobs without us – their patients.

So how can we define our role in our own care?  Isn’t it like we got parachuted like a soldier out of a plane onto a battlefield? A good patient navigates the terrain for themselves first and foremost. They don’t wait to get told what to do and they don’t accept blindly what’s doled out to them. When a soldier hits the ground hard, they release the parachute and get a view of where they landed and do their best to follow orders but that only goes so far. They have to protect themselves by the very nature of what they’re trying to accomplish.

A good patient will bring their oncologist information they’d would not normally have acces to. If you look at a time limit or a time that is spent with a physician – any physician like an oncologist, it’s just a sliver of time…just a small snippet of someone’s overall life. There’s not a way of seeing the whole picture in their dealings with the patient and they’re certainly not there on a day-to-day basis monitoring everything that’s going on with their patients.

It’s difficult for me to understand how, with so little time spent and only tests results to go by, they can make life or death decisions. You wouldn’t let your mother buy you shoes without your input; why would you let your oncologist treat you with things like chemotherapy and radiation therapy and other therapies without your input?  If your mother buys you brown shoes and you prefer black it’s your fault for not telling her you wanted black shoes in first place. She can apologize and take the shoes back. (Although you probably believes she should know your tastes.)

Your oncologist cannot force you into subjecting yourself to chemotherapy. She can’t make you submit to radiation therapy, which like chemo, might lead to more cancer. You have choices but you cannot have a say if you don’t speak up about your preferences. He can’t order an ultrasound rather than a mammogram if you didn’t tell the hI’m that you have very dense breast tissue and it would do more harm from radiation than good from a clear picture.

I am strange case apparently. I just seem to be responding well to treatments that many others haven’t responded well under. And I told my surgical oncologist today why don’t we just pretend that I’m stage IIIB instead of the stage IV? If I were stage IIIB you know I’d be getting metastatic sometime in the near term, right?  Because I’m metastatic, I don’t get a menu of options such as lumpectomy, mastectomy, and so forth because it’s just not in the restaurants in the at the end of the stage IV universe.
There is a tumor board that meets each Friday and  discuss my case as well as many others.  Before I even met with my surgeon he knew to expect my questions, he had heard of my annoyingly legendary knowledge base, he expected me to stand up for myself and ask a lot of questions if I didn’t understand what was going on. I chose to have the lumpectomy. My surgeon knows me well enough now. And he knew if he couldn’t get clean margins in my originating tumor he would push for me to have a mastectomy. I had my lumpectomy two weeks ago.

In my follow up appointment last week he looked at me and knew the answer before he even asked the question – I would say yup let’s go ahead and cut it. He said he said well I’m going to see the oncology board Friday I’ll speak to your oncologist as well as your other doctors and we will all decide. He said the first thing I’m going to do is make you an appointment with the plastic surgeon. We don’t want me walking around with just one boob really leaning into the doubt and says what are you curled call a girl with one boob? Ilene.
But guess what? No mastectomy needed. I can stand tall and straight and sit here and tell you to speak up and ask for what you want. Find the right team to help – ones who will work on YOUR side, not only by the books. The books change all the time and sometimes because a patient asked for something different than the set in stone procedural possibilities.
And be happy this holiday season. Do not forget your nurses and your team and thank them. You’re reading this and they’re glad you’re here.

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