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That didn’t go well

July 15, 2016

So, I just left the meeting with the surgeon and he was super gloomy. Really not the best bedside manner. He said that I look to have stage 2 cancer, with about a 70 -80% survivability rate. He told me that cancer can be treated three ways (radiation/chemo/surgery) but that chemo was not effective on head tumors so really it’s radiation or surgery.

He’s having me do what’s called a PET CT scan, which is a more intense CT where they inject you with a dye that swarms towards tumors so he can get a more thorough picture of how big the tumor is. Also, he’s having me meet with a radiation specialist, because he wants me to make the most informed decision possible.  Additionally I have to meet with two other experts, a dentist & a swallowing expert because radiation might destroy my teeth and my ability to swallow, which brings me to

The downsides of radiation treatment:

It burns really badly and you have to have your head strapped still in one position for 45 minutes during the session, with three sessions a week for 6 weeks.

The burning gets so intense that if the tumor you’re having radiated is in your throat, then after a few weeks, about 90% of the patients can’t eat or drink anything and have to tap out, at which point everything stops and the timeline gets re-set, only now they have to first have surgery to implant a tube in your stomach which stays there for six months and has to be surgically removed. That tube is the only way you eat & drink and then they start burning your throat all over again.

When the treatment is over, your tastebuds & salivary glands & speech muscles & swallowing muscles are all destroyed and need a while to heal up and will never be as good again.

And finally: the radiation will also destroy your teeth, which, if they’re young and strong they can recover from, but if they’re weak they will get infections and pass those infections into your jaw.

So this made me pretty psyched to have surgery. Except for

The downsides of surgery:

He won’t know 100% for sure if he can do the surgery without having to remove TOO much of my head until he’s reviewed the PET CT scan, and even then there’s a chance that once he’s in my mouth feeling around he may realize that the tumor is closer to my jaw than he thought and abort the mission. So I could go in for surgery, go under, and wake up un-surgerized and sent off to radiation instead.

He may do the surgery (it requires the removal of nearly 1 cm of tissue AROUND the diameter of the tumor) and end up really damaging my ability to speak or swallow nearly permanently.  He can’t replace muscle, and it will just scar over with scar tissue.

After surgery they have to do what’s grimly referred to as a “neck dissection” which is a SECOND surgery where they carve out my lymph nodes on the side with the tumor and dissect them to search for any signs of cancer/pathology.

BTW, this isn’t a downside, but he mentioned that they use a tiny remote controlled robot to do the surgery because it will fit in my mouth, whereas in the past they would have had to split my mouth vertically, episiotomy-style, in order to fit the surgeon’s hands & a light & a camera in there, and then reconstruct my face afterwards.

So: next up is a series of meetings and then a decision. I was worried that this was a lot of time wasting while I have death growing in my throat but he said that the tumor was more than a year old and had been growing slowly and will not be materially larger between now & a couple weeks from now. He also mentioned that I had the right to refuse treatment and also that if I did so I would die. He was not what you would call “a cool doctor.”

 

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