Chemo and the Cross
A week before I left Newark for Bilbao, I called Mom’s doctor at her request. “I wasn’t able to hear everything he told me about the cancer,” she had said. “Can you call him and talk to him? I don’t want to know what he says right now, though.” A few days after I left a message, he reached me in New Jersey. What follows are my largely unedited, contemporaneous notes of our conversation:
Reminds me she had ovarian cancer ten years ago last January. Treated with surgery and chemotherapy. They have followed her with CAT scans and PET-CT scans. The latter uses a sugar molecule that goes into rapidly dividing cells, such as cancer, and so those cells take up the sugar and create hot spots on the scan. They found three hot spots in May 2010. The pelvic spot went away, he says he has no idea why. [It went away after Mom radically changed her diet.] There were then two others, one higher up in retroperitineum and one in the top of the right lung.
She saw a doctor in Germany who convinced her that she should stop treating them with careful neglect and so we took one out of her lung. It looks like it’s not ovarian cancer, it’s lung cancer. Unfortunately, they save tissue only for five years, and while he wishes they had never thrown out her cancer slides [from when she had ovarian cancer 10 years ago], there is now no way of comparing the two.
Her recent surgery got completely around the one in her lung and it was small enough you wouldn’t do anything else. Now we’re left with the one in the back part of her abdomen, the retroperitineum. It’s in a touchy place to have a radiologist do a biopsy, located between the inferior vena cava and aorta, neither one of which you want to hit with a needle. Any biopsy would have to be done surgically.
If the lung cancer had been ovarian cancer instead, they could have convinced the radiation therapist to use radiation. But it looks like lung cancer, so the radiation oncologist isn’t keen to give radiation to what he doesn’t know. Both cancers will respond to radiation. He recommends she consider surgery, have it removed, then put in meda-clips so radiation therapist knows how far out to radiate, and radiate. Another option would be to cut as much out as possible and then do chemotherapy, because ovarian responds very well to chemo.
In February 2006 the last spot first showed up in a PET, 15mm, size of a dime, and in later scans it was 12, then 20, 19, 18, and in March it was 35mm in Europe (a little bigger than a quarter).
So she’s decided she’s going to do the Camino del Santiago [sic] and come back to get another PET scan, in October or November. See if it’s still the only spot. Options:
1. Surgery and biopsy
a. Consider chemo
b. Consider radiation
2. Radiate without a biopsy. He says it’s a good question to ask (as I did) why it matters defining the cancer, if both respond to radiation. The radiation oncologists say it’s not proven to be cancer and they don’t like to radiate that. Why not? I ask. Because radiation has a lot of side-effects. It would be close to her spine and intestine, could give her chronic problems, adhesions, diarrhea. 5000 rads in traditional radiation. Would CyberKnife (he calls it gamma knife) be a better idea to avoid the radiation? Yes, but it’s very expensive.
3. Do nothing
CA-125 score has gone up and down and so is not reliable as a measure.
I ask about the Stage 4 conclusion. Why is there not more urgency? Because they’ve watched it for five years and it’s not any worse, he says. Some would say when ovarian comes back, you do nothing until it becomes symptomatic. Some think recurrent ovarian is not curable, so one just controls symptoms (he’s not sure he agrees it’s not curable). He has one patient who had ovarian cancer 20, 15, and 12 years ago, each time with surgery and chemo and has not had a fourth recurrence. Everyone else who has had chemo in his practice has not had it go away.
Inge feels normal, and it’s hard to talk people into doing something when they feel okay. More spots, or the existing one in her abdomen, near her spinal column, growing would be ominous signs.
Radiation would be trying to hit a quarter-size spot. Blood vessels tolerate radiation well, but spinal cords don’t. Too much radiation could paralyze a person.
Would he recommend the gamma knife? She hasn’t seen the radiation oncologist in Montrose; doesn’t want to do so if she’s going to try the CyberKnife. He wouldn’t pay $50K to do it if one could do traditional radiation with high likelihood of few side-effects. He says the radiation oncologist in Montrose should give an opinion.
I ask about the nausea that was so bad for Mom the first time she had chemo. There are anti-nausea drugs available that were not on the market ten years ago, and the one she tried at $350 is now generic, and so cheaper. He has also had good results with patients treating nausea with medical marijuana.
He would not give chemo without a tissue analysis or biopsy. The chemo treatment is different for ovarian versus lung.
Is there ever a time when it begins to make sense to do scans more often than every six months? With her history, he says, no. Because things have changed so slowly over many years.
He says all of us, including physicians, in this day and age have to be judicious about how much we spend, else we run into intolerable debt.
When you’re hiking with her, you might suggest, Get that PET scan and then make a decision about doing something.
What are the risks of surgery to remove and biopsy? Inge’s pretty healthy, he says, she could do that pretty safely. Four to six weeks to recover. Risk of adhesions and thus bowel obstructions years later. Any risk of hitting the wrong thing? I ask. Yes, because you’re trying to remove as much of it as you can and doing so between two blood vessels that if nicked could cause bleeding. But surgeons are pretty good at working around it, and even if there is a lot of bleeding, they can clamp it off and close the hole. It’s easy for me to say, he says, I’m not a surgeon, but I’ve heard of that happening and surgeons take care of it. But you could get in there and find that it’s socked in around the blood vessels, get a biopsy, and get out. Put clips on it so that the radiologist knows exactly where it’s located, so you know exactly where you’re directing your radiation beam.
I say thanks as if to get off the phone. But he wants to summarize again. Adds that treatment for lung cancer, once it spreads, is more difficult to deal with than ovarian cancer. So maybe it’s time to do something definitive with this one in her ab-domen (he says it like this – ab-do-men). Any kind of cancer doesn’t typically grow this slowly, as slowly as the one in her lung and in her abdomen. They’re really not changing much, almost unheard-of over five years. Whatever she’s doing, I wouldn’t change it. Of course she’s really gotten religion with her diet and exercise in the last year, but whatever she was doing in the four years before that, that was working too.