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Note: This post is rather lengthy.
Hey all,
I'm now almost 4 weeks removed from my I/O, and I finally had my appointment with the oncology team (med onc and rad onc) at Dana-Farber.
First I met with the Med Onc. It was clear from the onset that he wasn't prepared for the appointment (he didn't know what I was there for). He pulled out the path report and read it for the first time; and, off the bat, he said that there's no need for adjuvant radiation and that I should go on surveillance (this came way out of left field considering I had pretty much decided RT). He then pulled out the CT data and read the radiologist report without look at the actual films. He insisted on surveillance, almost to the point that I wasn't even offered the option of RT. The guy then took off.
The Rad Onc showed up about 20 minutes after the med onc had left. The first point she made was that she was surprised there were 4 masses seen in the ultrasound, the path report only mentions 3, two of the masses were necrotic, and only one had viable tumor. She said this is a very unusual pattern seen in seminoma, and it is something I don't really know anything about (I'll look up some articles on PubMed tomorrow on the topic). Despite this, she said that since my viable tumor was small, she would not irradiate me and said I would go on surveillance. I then asked her about the details of their surveillance protocol, and she assumed the Med Onc had already gone over that with me. He never did; in fact, he had already left for the day. I then told her I was quite surprised about them not recommending RT, and she responded by saying that seminoma patients tend to consider themselves confident about being able to beat cancer, but deep down inside they are afraid of uncertainties over which they don't have control (whoa). I didn't get a protocol, and she told me to call her next week.
My take on this? I need a new treatment team. At the very least I'm cutting the med onc. The rad onc apologized multiple times for the "absent-mindedness" of the med onc (i.e. no surveillance protocol, not looking at the films, not being prepared for the appt). Be that as it may, this is my life, we're talking about, and I refuse to have someone be absent-minded while managing my care. My collaborator and future boss at DFCI is digging scoop on a substitute (this might take a while since he's in Ped Onc, and the Adult Onc operations are completely separate from Ped Onc).
In the meantime, I'm going for a second opinion at Sloan. I spoke to my fraternity pledge brother (urology chief resident at New York Presbyterian), and within a couple of hours, he brought up all of the issues with Joel Sheinfeld (they're writing a paper together). Tomorrow I'm sending him all of my films on CD by express mail, and I'm having the pathology slides sent over there for a second review. If something unusual comes up, I'll be taking the trip to NYC for a face-to-face.
Mentally I feel worn out. Perhaps I'm blowing this out of proportion considering that there is the very real chance (75-80%) that I might already be cured. I'm not angry because the docs disagreed with my original decision to undergo RT (just as I'm sure there are people that opt for surveillance and encounter a doc that will strongly push radiation). I am upset because I wasn't offered a choice, which is a luxury you have if things are caught early. I also firmly believe that MDs have to come prepared to meetings, especially when it's their first time meeting a patient.
OK, got this out. If anyone's still reading, thanks for your patience. I gotta try to get some sleep.
Hey all,
I'm now almost 4 weeks removed from my I/O, and I finally had my appointment with the oncology team (med onc and rad onc) at Dana-Farber.
First I met with the Med Onc. It was clear from the onset that he wasn't prepared for the appointment (he didn't know what I was there for). He pulled out the path report and read it for the first time; and, off the bat, he said that there's no need for adjuvant radiation and that I should go on surveillance (this came way out of left field considering I had pretty much decided RT). He then pulled out the CT data and read the radiologist report without look at the actual films. He insisted on surveillance, almost to the point that I wasn't even offered the option of RT. The guy then took off.
The Rad Onc showed up about 20 minutes after the med onc had left. The first point she made was that she was surprised there were 4 masses seen in the ultrasound, the path report only mentions 3, two of the masses were necrotic, and only one had viable tumor. She said this is a very unusual pattern seen in seminoma, and it is something I don't really know anything about (I'll look up some articles on PubMed tomorrow on the topic). Despite this, she said that since my viable tumor was small, she would not irradiate me and said I would go on surveillance. I then asked her about the details of their surveillance protocol, and she assumed the Med Onc had already gone over that with me. He never did; in fact, he had already left for the day. I then told her I was quite surprised about them not recommending RT, and she responded by saying that seminoma patients tend to consider themselves confident about being able to beat cancer, but deep down inside they are afraid of uncertainties over which they don't have control (whoa). I didn't get a protocol, and she told me to call her next week.
My take on this? I need a new treatment team. At the very least I'm cutting the med onc. The rad onc apologized multiple times for the "absent-mindedness" of the med onc (i.e. no surveillance protocol, not looking at the films, not being prepared for the appt). Be that as it may, this is my life, we're talking about, and I refuse to have someone be absent-minded while managing my care. My collaborator and future boss at DFCI is digging scoop on a substitute (this might take a while since he's in Ped Onc, and the Adult Onc operations are completely separate from Ped Onc).
In the meantime, I'm going for a second opinion at Sloan. I spoke to my fraternity pledge brother (urology chief resident at New York Presbyterian), and within a couple of hours, he brought up all of the issues with Joel Sheinfeld (they're writing a paper together). Tomorrow I'm sending him all of my films on CD by express mail, and I'm having the pathology slides sent over there for a second review. If something unusual comes up, I'll be taking the trip to NYC for a face-to-face.
Mentally I feel worn out. Perhaps I'm blowing this out of proportion considering that there is the very real chance (75-80%) that I might already be cured. I'm not angry because the docs disagreed with my original decision to undergo RT (just as I'm sure there are people that opt for surveillance and encounter a doc that will strongly push radiation). I am upset because I wasn't offered a choice, which is a luxury you have if things are caught early. I also firmly believe that MDs have to come prepared to meetings, especially when it's their first time meeting a patient.
OK, got this out. If anyone's still reading, thanks for your patience. I gotta try to get some sleep.
. But seriously, I did not have the same bias against DOs, but the interaction went like this: I was first seen by her fellow, who said that they believe that the tumor was caught early, despite the minor lymphadenopathy (at this point I had not seen my CT scans, but had been told they were clean). After his physical exam, she kept me waiting another, oh, 45 minutes or so, came into the room with an air of superiority, and then said for surveillance, she likes to see a CT scan completely free of lymphadenopathy. So she's recommending radiation... and then she set up an appointment. I sent her fellow to get me all of my reports and read them while she wrote me a script for a CT scan for my chest, which is NOT RECOMMENDED...by NCCN guidelines, but she insisted on it! When I read my P/A CT scan, I notice the following line There is no evidence of pelvic or retroperitoneal lymphadenopathy. I immediately questioned her on it.. and she got flustered and then blamed her fellow...I then realized that she must have been briefed by the fellow minutes before she met with me, and parroted his misreading of my CT report. Inexcusable! I fired her and I'm now med oncologistless. My experience with the rad onc was much better, so I have a level of confidence there, and my uro will henceforth be reading my surveillance scans until I find a med onc I can be comfortable with. He is colleagues with her (he is the director of her department) and he was suprised she had recommended radiation because they had previously met and had agreed on surveillance in my case.
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