next up: radiation

Spent the entire day, a hard day, meeting with pulmonologist and radiation oncologist at Kaiser. Good guys both. The upshot: Val begins an intensive two weeks of palliative radiation on Monday to try to help with the coughing. More info will be added to this post soon.

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More detailed update:

Okay, so the recent scan showed that the reason Val’s breathing has worsened in the last couple months is that a) the cancerous lymph nodes in the center of her chest (around the place where the trachea splits) have gained in mass enough to be compressing her trachea from its outside; and b) there is now an endobronchial (= inside the bronchial tube) tumor growing into the the right bronchial tube, impeding 50% of the airway to her right lung. It’s itty-bitty (I saw the scan) but impactful.

So, on Friday morning Val met with the pulmonologist Dr. F. I wasn’t present for this meeting but Amber took excellent notes and Val said she liked Dr. F. He said one option would be for him to do a surgery Monday wherein he’d keep her trachea open with a tube, send tools down inside that, and burn or peel off the bit of tumor that is inside her right bronchial tube. An additional option would be to insert a stent that would keep that tube open and prevent cancer from regrowing in that exact spot, but stent surgery is tricky and also needs specialist maintenance and they probably don’t have someone at OHSU who can do that maintenance. Also, the surgery has a 2% chance of complications, which is a significant percentage. Around noon Friday the plan was to proceed with this surgery.

Then in the afternoon, Cyn and I joined Val for her consultation with Dr. N, the radiation oncologist. We’d met him once before in 2008 and liked him both then and now. He had already consulted with the pulmonologist and both oncologists (at Kaiser and OHSU). He helped us break down the pros and cons of endobronchial surgery vs. targeted radiation:

Endobronchial procedure:

• Immediate results
• Some risk
• Stent could keep airway open (some risk there too)
• Not be able to deal with the lymph node tumors outside the trachea
• Overall tumor bulk is large enough that procedure wouldn’t affect much of it; then if radiation was still warranted you’d ideally need to wait 6 weeks, which is rather long to go without treatment

Radiation:

• Goal: to open the airway.
• Can treat both the external compression from the lymph nodes and the part in the airway. (Would not be able to chase down all the lung spots.)
• Able (potentially) to reduce more of the tumor mass than the surgery option. (Question: would he be able to radiate the tumor above her clavicle, which is starting to cause her significant pain? Answer: Maybe. Will look at scans to determine by Monday.)
• More potent than chemo (although he says this won’t be a high dose of radiation).
• Would take 10-15 treatments to open the airway, over the course of 2-3 weeks (two  in our case, because our Kaiser insurance ends Dec. 31).
  • But would only do as much as Val’s body can tolerate.
  • Each visit about 25 minutes; the radiation beam itself = 1.5 minutes.
• Would take about two weeks to feel better after the end of radiation series.
• Give about three weeks after treatment ends to decide if it’s working. (If not, then could try stent or whatever our new oncologist, Dr. S at OHSU, advises.)
• Downsides to radiation:
  • takes time (2-3 weeks) instead of taking overnight effect
  • irritates esophagus, making it painful to swallow by the end of two weeks of treatment (likely to last a couple weeks). (Can address with oncology mouthwash and perhaps aloe vera juice, as well as pain meds.)
  • usually works but doesn’t always.
  • other side effects: fatigue; darkening & dryness of skin front & back.
  • because we are fitting this all into 2 weeks, side effects may be greater than if we were able to spread it out a bit.

Question: Is now a good time to do this? We don’t need to keep radiation in our pocket for later? Answer: Now is good, to reduce pressure from tumor mass around trachea (and also a little because of our weird change-of-insurance timeline).

Question: How long could beneficial effects of radiation last? Answer: hard to tell, but hoping for sustained benefit. Certainly “this area is currently the main threat to life,” so addressing it should make a good difference.

Dr. N also commands Val to put on weight! as a buffer to help her body withstand treatment (and because she’ll have trouble swallowing in a couple weeks), so we are amassing good protein and fat sources that sound edible to her. Memorably, he also told Val (as we talked about scary things like tumor load), “You [in person, talking and breathing and moving] look better than your CT scans do, which is something I like to see.”

So, as I initially wrote, we wound up with the plan to begin radiation treatments Monday and continue them daily (on weekdays) basically until our Kaiser insurance runs out on December 31.

Val is in a fair amount of pain (all-over achy, plus pain at the site of the clavicular tumor, plus pain from hard coughing). She is still regularly coughing so hard she throws up. We are all very tired and overwhelmed and sad. I am hopeful that radiation will make a good difference to her airway so that she can stop coughing.

But as Val says, the medical world is not the world that matters. The world that matters is the one full of friends and love, and that is where we live.