Today was my first appointment with a medical oncologist at the University of Pennsylvania (Penn Medicine).  It was a surreal experience to say the least.  The waiting area was filled with cancer patients at various stages in their disease, ranging from newly diagnosed (me) to recurrent disease patients.  I couldn’t help but wonder – which of this cast of characters would I identify most with in the coming years?  Some of the patients looked quite weary from their battle – tired and frail.  Unfortunately I was no longer an outsider, but rather just the latest soldier enlisted to fight a common enemy.  It was disheartening.

radiology_PETWhile I read the radiology report from my PET scan last Friday, I couldn’t view the images on the Windows-only CD-ROM.  Today, the medical oncologist pulled the images up on a computer screen in his office and for the first time I saw the “enemy.”  The bright, glowing areas in the accompanying image represent the cancer.  One spot is the tonsil (where the cancer originated) and the other is the lymph node (where it has spread).  Both locations are on the right side of my body and the image is seen from the perspective of looking through my body from my feet up towards my head, which is why it looks reversed.  You can see familiar skeletal landmarks in the image, such as the jaw bone and teeth in front and spine in the back.  FYI – when I got home I was able to view/extract this image using a software program for Macs called OsiriX and you can obtain a free copy by clicking here if you ever get a Windows-based CD with radiology images on it!

The doctor confirmed Stage IV oropharyngeal cancer.  The location of the disease near the carotid artery would make surgery difficult, but that would be discussed at a tumor board later in the day.  The combination of radiation and chemotherapy would be the most likely initial treatment.  In this scenario, the chemotherapy (cisplatin) is used to make the cancer cells more susceptible to the accompanying radiation treatment.  The entire course of therapy would span 6-7 weeks and comprise daily radiation treatment Mon-Fri, with chemotherapy spread throughout.  The goal of the treatment would be to eliminate all of the cancer, which I’m reluctant to call a “cure.”

There is no sugar coating the side effects from treatment, especially towards week 4 and beyond.  The effects of radiation exposure are cumulative and will get worse with each cycle.  It will be hell.  However, there is a chance that the treatment will be effective – and it is that hope that will help get me through it.

The next step is to meet with a radiation oncologist and discuss various options, such intensity-modulated radiation therapy (IMRT).  IMRT is an advanced mode of high-precision radiotherapy that uses computer-controlled linear accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor.  However, Penn is one of the few centers in the region to offer newer “Proton Therapy.”  A proton beam conforms to the shape of a tumor with greater precision while sparing healthy tissues and organs.  This could lower the side effects of radiation therapy and may be an option for me depending on feedback from the radiation oncologist.

The main side effects from chemotherapy include hearing loss, which is why I need to schedule a hearing test to get a baseline.  If there are any issues with hearing loss before therapy, it could preclude the use of cisplatin and other chemotherapies would be considered. Radiation therapy can lead to dental problems, which necessitates also meeting with a dentist at Penn.  Best case is that all of these meetings can be coordinated on the same day as a follow-up with the radiation oncologist and I’m waiting to hear back on scheduling.  In the meantime, I have an appointment with a medical oncologist at Memorial Sloan-Kettering next week – as I am an advocate of getting a second opinion when it comes to major health matters.  My hope is to begin therapy within the first few weeks of January.

 

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  1. God bless. You will be in my prayers. As an RN, I am so impressed with this blog and the valuable information it contains. As a fellow human being, I am very appreciative of of your willingness to share this difficult journey. Do your best to stay focused on the positive you can find everyday.

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