Yesterday I had an appointment with an oncologist who specializes in lung cancer at the Seattle Cancer Care Alliance ("SCCA")for a second opinion. One of the nicer aspects of Group Health membership is that they authorize and pay for a second opinion, and I took advantage of that.
I met with Dr. M and his oncology resident, Dr. O at SCCA. Before arrival, Group Health had sent over all the tests and results, and I had filled out a lengthy form, which SCCA had sent. I turned it over at the check in desk and was given a green sticker that proclaimed I had passed their "do you have a cold" test--everyone, including visitors--had to fill out a questionnaire concerning current symptoms before being allowed to stay at SCCA. Can not be too cautious when you have folks going through chemo all around.
The view from the waiting room, overlooking Lake Union, was tremendous, and probably very calming for many. Me? Not so much.
After a 15 minute wait, we were shown into a standard examination room, and first met with Dr. O, who asked additional questions and did a short physical exam. Dr. O asked if I had considered genetic testing given the history of cancer in my family and said that it might not be of assistance to me, but it would help my children. Dr. O then took her oral history notes along with all my test results/readings and questionnaire answers to Dr. M for consultation prior to his meeting with us.
Dr. M is tall, charming, and very direct. First, he asked me what I understood about my current condition. I gave him my two minute precis: lung cancer diagnosed 9/18/09, stage 3-B, course of treatment prescribed, etc. I then asked what he thought.
Dr. M responded that (and this is in no particular order from our conversation) he wanted to take my case, which he found interesting, to the SCCA Tumor Board and solicit their opinions on the best course of treatment.
The Tumor Board meets Tuesday next week (I've been saying Wednesday to friends, but a quick check of my notes shows that is in error). This includes oncologists and radiologists and Dr. M wants input from the radiologists whether to do radiology concurrent with or consecutive to the chemotherapy. Dr. M agreed with Dr. N that surgery was not an option to the lymph node involvement, and the desire to recover my voice which would mean treating the nerve to my vocal cord with kid gloves.
Dr. M also wants a second biopsy done to see if the tumor has EGF receptors:
If so, this would give them a reasonable chance of finding the original source of the cancer and it could also change the treatment modality, perhaps significantly. They could shift to a pill(erlotinib*, not gefitinib which is not approved for use in the USA) and not employ chemo. Dr. M suggested a second punch needle biopsy of one of the lower left lobe tumors using a larger needle to obtain sufficient tissue to do the biopsy. It could take ten days to receive the biopsy results. Dr. M also proposed a different chemotherapy combination, using a drug named pemetrexed instead of the paclitaxel, and perhaps keeping the carboplatin, or using cisplatin in its place. The pemetrexed would lower the possibility of hair loss but would increase nausea, and there would still be potential problems with neuropathy if cisplatin is used in lieu of carboplatin.
Dr. M was presently of the opinion that chemo followed by radiation was the correct course, unless the Tumor Board determines otherwise.
Dr. M thinks that a month ago the cancer was 3-A, but that taking additional time to try to figure all this out would not be too slow for starting treatment. At some point, I said that this shows why medicine is an 'art' not a 'science' and he gave me the look he said his 12year old daughter gives him when she thinks he's been goofy. Still, I think that at the outer limits, medical diagnosis is an art, perhaps informed by science, but still an art nonetheless.
Dr. M talked about using the term 'control' rather than 'palliative' if it was found that we could not eradicate the cancer. He said that if I had been diagnosed with AIDs in 1985, I would have been dead within 6 months, but now those with AIDs have a likely chance to live our their normal lifespans. My prognosis gives me 2-2 1/2 years on the pill, before recurrence of the cancer. Using chemo together with radiation, the intent would be curative.
So he recommended that I get the port installed in my chest Tuesday morning, and await the determination of the Tumor Board deliberations before starting chemo--likely Thursday. That left the biopsy question unanswered.
I asked him to call Dr. N before I had my telephone consult with himf at 4:40 that day, and he agreed to do so. I said it was my hope that he and Dr. N could work collaboratively on my case and asked him what happens when doctors disagree. He laughed and said it was not at all common to disgree, that he fully expected that they would be on the same page. When I returned home, I emailed Dr. N and mentioned that Dr. M was going to call him. He later responded via email that he had talked with Dr. M at noon and was looking forward to our phone conversation.
So 4:40 came and went. So did 5:00; 5:15, 5:30; 5:40. During this time I emailed Dr. N, I called his office several times and was referred to the oncology voice mail that stated the office was closed for the day. Now I operate on the belief that my word is my bond, and if I cannot reach a client or fellow attorney at the time agreed upon, I have my legal assistant contact them to let them know that things are running late. This did not happen. In fact when I called Group Health's front desk, after being sent to the closed oncology office, I hung up and called Group Health back, and the woman (once again she complained about not being able to hear me) said sharply, "This is the number I have to refer you to. I can't do anything else." This all too common lack of care with the Group Health administrative staff reduced me to tears. But luckily, I called the main number once more and this time spoke to a different, more empathetic main operator who must've heard my distress and agreed to page Dr. N, so he would be aware that I was waiting. She put me on hold for a while, then got back to me and said he was running behind on my calls and would be calling shortly.
At 5:50 Dr. N finally called. I had managed to put myself back together again, but I was not on top of my game for this discussion. Dr. N said that he had spoken to Dr. M and he was in agreement with his recommendations concerning the Tumor Board and the shift in chemo meds. But he wanted to talk with Dr. L, a thoracic surgeon at Virginia Mason, he had earlier mentioned, to see if he could do a mediastinal biopsy of the tumor growing on the nodes next to the nerve for my larnyx. He was hoping that it could be done before Thursday, but because he was leaving shortly for a weekend in Colorado delivering a paper at a conference, he was not sure if it could get pushed on through fast enough. Although, Dr. N thought a week's delay would not be problemmatic. Dr. N said that if the thoracic surgeon agreed to do this, VM would probably run my case through their Tumor Board as well.
You know at this point, I just want to say that women of my mother's age aspired to be pin ups, and women from my generation wanted to be centerfolds in Playboy. Well my goal in life is that I want to have my PET and CT scans reviewed by Tumor Boards. Don't tell Sarah Palin.
The plan, which is still not fixed is that the port will be installed on the right side of my chest on Tuesday and chemo will begin Thursday. Once Dr. N returns from Colorado I hope to take up the issue of the biopsy and settle that fully as well. But as Dr. M said during our second opinion consult, you don't want to use a tank to kill this if all you need is a rifle. I can get behind that opinion. And I can be patient a while longer if this means the treatment is more tailored to my situation and it gives me just as good a chance for remission/cure, as well as fewer side effects during treatment.
And I got an email from Dr. N apologizing for his late call.
*erlotinib is a drug marketed by Genentech--which merits a shout out to Fred, a college classmate, who is a research scientist for Genentech!! Howdy there and tell them to keep up all the good work!