Patient Experience: 16 Days, "Dad you have cancer…"

So the morning came and by about 10am I was done waiting to hear from my mother and I called her for an update. She had informed me that as of that moment, no one had called her or my father back. I encouraged her to call both the primary care physicians office as well as the GI surgeon. She had to leave messages.
About an hour later, the nurse for the GI surgeon gave my mother a call and told her that someone from central scheduling would be calling her to set up a PET for my father. She also said that the physicians assistance would be calling in the afternoon with the pathology results.
A few moments later my mother called me again, this time with my dad on the phone, both speaking to me via speaker phone.
My father asked me, “I thought they couldn’t order this test because of my kidney.” I took the time to explain to him that previously he was unable to get contrast due to a high creatinine level. This is a PET scan that injects a radioactive sugar into his system to see how his body is behaving.
I used the comparison of a weather map. CT: seeing the states, land, boundaries; PET: is the ability to see weather patterns on top of the map. Alone it tells only a partial story, together it tells a more comprehensive story. My dad understood.
My father then asked me, “Is this the test you asked them to do at the beginning but they said they couldn’t?”
Oh crap, how do I respond? Do I tell the truth? Do I deflect until the physician calls? Deep breath. Breath in. Breath out. Go for it. My response, “Yes. At the beginning they said they would not order a PET because it will not be reimbursed. Insurance will only reimburse a PET scan once you have been diagnosed with cancer.”
My father quickly jumps in and responds, Oh, so you are saying that this is cancer.
I reply, “Yes dad, this is cancer. I am sorry to be the one to tell you. When the doctor calls this afternoon this is what they will tell you. You now have cancer.”
I could tell my father was a bit deflated in the news. He then jumped and said, well we will get the test, and then they should be able to operate and cut out the spot in my pancreas and the two spots in my liver, right?
I told my father that he would need to wait until we heard from the doctors office to understand the pathology. We would need to see what the PET scan shows. If all goes well, then yes, you may be able to have surgery.
My father said okay. Sounds good. Let’s get this done.
I did then mention to both my parents that I have another suggestion. Since this is pancreatic cancer, and there are two spots in the liver, that it would make sense to seek a 2nd opinion at a larger medical center. Pancreatic cancer is not as common as prostate, breast, or lung. It is about who has expertise and sees enough to be equipped to treat it appropriately. You should consider an opinion from UW Madison or Mayo. The other item is that the topic of pain also needs to be front and center of the discussions. At one of the mentioned facilities, they have multidisciplinary teams in place that can address you pancreatic cancer, but will also make a plan on how to manage your pain throughout, and if that point in time comes, when and how to transition to palliative and hospice.
My parents said that they will seek a second opinion and know I am directing them as I would anyone else, and that this is my expertise. They trust in my opinion.
I also told my father that I can give him the information, I can help him understand it, and I can advocate that his voice is heard in all of the decision making process with treatment. I also said that ultimately this is all your decision to make. I can guide, but whatever you decide, I will respect.
This is your story. I can provide the paper on which to write it, but you hold the pencil. Only you have the power to choose what words are written, and what words are omitted.
This will be my fathers chapter on cancer. Hopefully there will be plenty of other chapters to follow.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM
#PtExp #PX #cancer #clinicalpathways #hcldr #hccosts #hcsm

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