Back story

A little back story to why we're at where we're at.... please note this is all based on my memory which may be fuzzy at times.

James has been a smoker for 30+ years, a pack a day. He talks about it starting in the military and how they could buy a carton of Camels for $2, crazy.

In 2010 his voice was becoming rough/gruff. His primary care physician (PCP) referred him to an ear nose and throat specialist (ENT) who scoped his throat and found Leukoplakia which they removed during a day surgery scraping procedure.

Note that James has never been one for going to the doctor. I'll schedule appointments for myself at the drop of a pin or twinge of pain but James will put it off and off and off forever.... In this instance the rough/gruff voice started back up again a year or two ago. He was assuming it was the Leukoplakia again, he had been previously stressed by the scraping procedure, he didn't have a great rapport with the ENT physician and so he avoided going back.

Flash forward to this fall/winter. When he was finally ready to make the appointment because he was in distress with throat etc there was a huge delay. James hadn't gone to his PCP for 3-4 years so he had been dropped as a patient. We do have health insurance through the Mass Health Connector (thank goodness for that) but the hospital clinic where his PCP is located had dropped him as a patient and were no longer accepting new. We had to jump through hoops to get him back into the system.

James' voice had been getting worse and worse, his breathing was impacted and he had an ear ache that wouldn't go away. Our daughter had been sick all fall and tested positive for the flu so James assumed he also had the flu. He suffered through a month or two of not getting better with rest fluids etc before he saw his PCP. James was put on an antibiotic for the ear and prior authorization was submitted to insurance for a chest MRI due to breathing issues. They schedule a follow-up with the ENT and follow-up with PCP both a month out.

The antibiotic does nothing to alleviate the ear pain. The "flu symptoms" are still there. No MRI has been scheduled due to an insurance issue.

A month later James sees the PCP again who resubmits for MRI. He's scheduled with the ENT a couple days later who scopes his throat and finds a large mass at the larynx. The ENT schedules an urgent throat MRI and also an urgent follow-up with an ENT surgeon who specializes in Oncology, both are booked for the following week.

The MRI shows a mass localized to the larynx. The ENT surgeon initially says it looked like it could be addressed with radiation/chemo prior to surgery to avoid full laryngectomy but after consult with radiologist they pushed for full laryngectomy straight away. We were not ready at this point to agree to laryngectomy. James wanted to know first if the cancer had metastasized, if yes he would not want to do the radical surgical procedure.

We left the ENT appointment on a Friday afternoon and that night James' breathing was so increasingly distressed that we drove to ER and he was admitted to ICU. In the ICU they started steroids which began to relieve the swelling/stress on the airway. After discussion with the PCP who had suggested a second opinion prior to full laryngectomy we agreed to have the surgeon biopsy and de-bulk the tumor to open the airway. We also wanted a PET scan to check that the cancer hadn't metastasized which could only be done on an outpatient basis. James was in ICU for 6 days, the surgery was successful, he could breathe again and the biopsy was positive for cancer.

James was released from the hospital on Dec 21. The following month was taken up with testing and phone calls to insurance trying to push for second opinion as suggested by PCP. The second opinion would never happen after a complete nightmare of run-around by ins co (a story for another time).

The PET scan was done and results are that the tumor extends above/below the larynx and involves the cartilage. Our options were to go forward with the total laryngectomy followed by radiation/chemo or start with radiation/chemo and most likely total laryngectomy afterward anyways. The radiation/chemo would further reduce function of the larynx which was already impacted by tumor. James was struggling eating/drinking and after much consideration opted to go ahead with full laryngectomy.

We do not regret the initial decision when in ICU to hold for further testing as we needed time to process the decision and James needed to know via PET scan that the tumor had not metastasized. He based the laryngectomy decision on survival rate and quality of life.

In hindsite and for anyone else questioning laryngeal cancer the symptoms for James it began with the gruff/rough voice and then ear pain, difficulty breathing. If you are a smoker I would recommend seeing an ENT at the first sign of voice change. Please don't wait until the other symptoms arise and please try to quit smoking.