Ok, to start, a short story. Before I tell it, though, I must say that I wrote the story before I met 2 of the 3 doctors I saw today. Any resemblence to any doctor, living or dead, is purely coincidental (and, in my case, actually there is little resemblence…but don’t let that detract from the story itself).
A Medical Oncologist (i.e. chemo doc), a Radiation Oncologist, and a Surgical Oncologist all go in together on the purchase of a fixer-upper. They all three go to check it out and decide on the best course of, well, fixing it up.
The Medical Oncologist looks around a bit and says, you know, if we just strip the floors, put in some aromatherapy, and set off a bug bomb or two this place will be just fine.
The Radiation Oncologist looks around and says, you know, all this place needs is better lighting. Lets just put up some strategically placed high-intensity spotlights.
The Surgical Oncologist looks around and says, well, I think we are just going to have to take everything out of here. And, while we are at it, we should move the front door closer to the bathrooms.
Ok, now for my real tale which really didn’t go as the above might suggest.
First off, still elated that I kept my larynx, yesterday. I’m a little sore swallowing, but that is rapidly getting better. Took a vicodin to sleep last night, but Tylenol was fine for today. As to the doctor visits:
The Medical Oncologist was first. He went over all the options from his perspective, including his thought that ultimately the major surgical option might be the best way to go, but that he was open to starting with a more conservative therapy. We spent the rest of the time discussing the roadmap in the event we went more conservative. Basically a chemo cocktail every 2-3 weeks while simultaneously getting radiation therapy every week day. He didn’t expect that nausea would be any issue for this kind of chemo, but that the radiation might start making me feel bad after the first month or so.
Next up was my Surgical Oncologist who did the biopsy yesterday. He also said that long term, a complete laryngectomy was more than likely, but that he would completely understand and support starting with chemo-radiation while still watching to make sure that there were no issues that would take that option away.
The Radiation Oncologist actually spent more time talking about the risks of not having the surgery in general in terms of long-term prognosis. However, the increased risk, in the aggregate of patients, is not huge (like in the 5%-ish range). I have one bad thing feeding this: the tumor is large. However, balanced against that is that my general health is excellent, I have no breathing issues, I have no issues swallowing, I’m not obese, diabetic, or a present or past smoker. All of those would make chemo-radiation virtually a non-starter.
They all asked what my outcome desires were. I gave them all a hierarchy of outcomes. Overarching all: life. Beyond that, in order of best-to-worst outcomes:
- Restoration of voice and continue to have a mouth/nose airway.
- No natural voice (beyond whisper) and continue to have a mouth/nose airway.
- No natural voice and no mouth/nose airway (i.e. a stoma in my neck for breathing)
The first two are only possible without a full laryngectomy. The third would be the result of the full laryngectomy. Even without the laryngectomy, my voice might never restore. The anchor point of my vocal ligament on the thyroid cartilage seems to be missing. But, maybe not. It is not easy to tell.
A total laryngectomy would be a huge quality of life issue. It would restrict my activities quite a bit in ways that I really, really don’t want to be restricted. I know that this is creating a big bias affecting the decision to take a bit more risk. In the end, I’ll either regret this or not. I’ve decided to proceed with chemo-radiation. I should be able to return to work, but will be out at least 2 hours a day every day for treatment (chemo days I’ll be out all day, as it is about a 5 hour process). Two-three months of treatment, then we’ll see where we are. We might be right back to laryngectomy.
Meanwhile my chemo doc told me to fatten up. Later on, if I am queasy, I’ll need that energy. So, trying to eat 3 squares a day.
I should add that the above is a really condensed and biased synopsis of 3 meetings, each of which lasted 45 minutes to an hour. Which was pretty phenomenal considering I was basically a “walk-in” to all three. All the doctors said much more than what I’ve decided to relate, above, and I am sure I’ve skewed some of the details a bit. I recorded the meetings so that I could go back and review them (in lieu of notes), but didn’t have 3-4 hours tonight to do that. So, trusting to untrustworthy memory based on biased listening for this post. I might have gotten some of this wrong…blame it on me, not on the doctors. They were all great.
Tomorrow I go in at 7:30 am to be fitted for my head shield (cat scan of my head and upper torso so the shield can be prepped to my exact size). I’ll also meet the Radiation Oncologist’s research team (I agreed to participate in a trial that reduces the exposure of surrounding tissue to the radiation while keeping the same concentration of radiation on the diseased tissue). A possible benefit of the trial methodology would be less damaged tissue in the irradiated area in the event a laryngectomy is still necessary.
We’ll also have to see what happens as the tumor retracts from the areas of the thyroid cartilage that is affected. It could recalcify, develop hardened scar tissue, or just leave a hole. Hoping for one of those first two, as the third points back to laryngectomy. Also, the thyroid glands themselves are going to be, in the doctor’s words, toast. I’ll need to take thyroid supplements, but he said that is a well-developed protocol.
Even with all of the above, I’ll say again that all three doctors said that total laryngectomy is still quite likely even with successful chemo-radiation. No minced words. My hope does not equal either diagnosis or prognosis. So, I’ll whistle past the graveyard while I can still whistle.
Ok, enough for now. I need to finish my dinner before it gets cold. Tomorrow is another doctor day.