Family members wanted me to get my treatment at Memorial Sloan-Kettering or the University of Pennsylvania, the most prestigious cancer centers within reach. Meanwhile, I really liked Biren Saraiya, the smart and compassionate thoracic oncologist closest to home. I also didn’t like the idea of riding the train or driving an hour or two for chemotherapy infusions, tests, and appointments with the doctor (it was going to work out to at least one trip a week). With my coughing and fatigue, and the potential for nausea, I wanted to conserve whatever energy I had, and not use it all up on travel.
Dr. Saraiya is not just any community oncologist. He is affiliated with what was then The Cancer Institute of New Jersey (now Rutgers Cancer Institute of New Jersey), a National Cancer Institute–designated comprehensive cancer center. Still, TCINJ/RCINJ is not the same kind of household word in cancer treatment as Sloan-Kettering or Penn.
We came up with what I still consider a brilliant plan. Dr. Saraiya, who takes a collaborative approach I consider essential in thoracic oncology, encouraged me to go ahead and meet with the oncologists at Sloan-Kettering and Penn. If they could offer me something he couldn’t, like a spot in a promising clinical trial, he wanted me to take advantage of that. However, if they recommended treating me with drugs he also had at his disposal, he would treat me in New Jersey. Then, at any point along the way when we needed to contemplate a change in my treatment plan, I would consult with the big-city oncologists again.
I was worried that this was too complicated, but it turned out that Jamie Chaft, my oncologist at Sloan-Kettering, and Roger Cohen, my oncologist at Penn, liked the plan, too. There was no reason, they said, for me to endure extra travel for infusions with the exact same drugs I could get fifteen minutes from home. They would be happy to see me again at the next turning point in my treatment.
Dr. Saraiya explained that my being a patient at multiple centers improved his access to the latest information and clinical trial updates as well. He could always call oncologists at other centers for information, but returning his call might not always be their top priority. If they shared a patient, though, they could share information much more rapidly.
At the time, I was just pleased to be able to drive down the road for chemo, and not to have to go to New York or Philadelphia. Now, I’m actually stunned by the brilliance of my oncologists’ collaboration: because I am an active patient at three different centers, I have access to more clinical trials. (You can’t just sign up to take any experimental treatment; you have to be under the care of doctors who are involved in the trial.) Dr. Saraiya treated me from January to August of 2013; in August, when I joined the clinical trial for crizotinib at Sloan-Kettering, Dr. Chaft became my lead oncologist. If I ever need to go to the emergency room, though, I can still go right up the road, where Dr. Saraiya is right next door and has remained up-to-date on my illness and treatment.
The only thing is that I can’t assume they each know everything the others know. At every appointment, if I’ve seen one of the other oncologists, I try to repeat everything they said in my own words, to supplement the e-mails they’ve exchanged. I also keep a running list of questions for each doctor, and if they say they’ve asked or told each other something, I follow up.
Hi Irene,i just want to say I love you blogs. They have been so inspirational. How long did it take to receive your first round of chemo from the time of first diagnosis. My mother has been diagnosed with stage 4 lung cancer (mestasisized to bones and liver) and we have been stuck in the data collection phase for weeks (catscan, pets can, mri, tissue biopsy, etc. ). We are only just getting the final test (tissue biopsy) completed this week and the first available time for the oncologist is not for another full week. In all it will be about 5 weeks from the first diagnosis and then wonder how quickly the oncologist will start the actual treatments.
Jennifer, I received my diagnosis on January 2, 2013, and had my first chemotherapy infusion on January 23. I’d already had a biopsy and CAT scan, though, prior to the official diagnosis. Do you live in a place where you could call around to other cancer centers and try to get an appointment for a second opinion? I wonder if another thoracic oncologist might also be able to see her within a week, and then you could compare how you feel about them and how quickly it seems like they will be able to start treatments.
Thanks Irene for the advice. How many weeks did it take to do the biopsy and pets can? Am trying to get a sense if we can afford to wait a few more weeks to get into see a top oncologist recommend at Johns Hopkins or if the first treatment of chemo will look fairly standard regardless of hospital.
I was actually diagnosed by biopsy while I was hospitalized, so I didn’t have to schedule the biopsy separately. PET scan was second day after diagnosis — my community hospital moved fast on that! The PET scan will help the thoracic surgeon decide if surgery is indicated. I’d suggest going ahead and making appointments with a thoracic surgeon AND the oncologist at Johns Hopkins now, without thinking too much about it (see if you can schedule them on the same day). You can always cancel those appointments if you and your mom decide to proceed with treatment where she’s already being seen. Discuss getting second opinions with the oncologist she is seeing now. Ask about his/her sense of prognosis (is there time for second opinions?) and willingness to collaborate (will he/she be open to consulting with doctors at other centers?) That will give you more data to make the decision.
Jennifer, one more thought: It’s possible that a big cancer center might actually be able to move faster on starting treatment than where your mom is being seen. Say you meet with oncologist next week and it turns out he/she won’t start treatment for two more weeks. In that time another oncologist might be able to see your mom AND start treatment.
Oh, wait. I just realized that surgery may already be out of the picture because of what you’ve said about metastases. I’m not a doctor but I know they don’t usually operate when lung cancer has already metastasized. Please forgive me if I thew in some irrelevant advice.