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Hi,
Previously, I posted that I had stageI seminoma (good: margins, no LV invasion, no epididymal invasion, small tumor (1.5 cm), over 35 (I'm 38)), also, I was told I had normal tumor markers, CXR and AB/Pelv CT. I thought it made me a good candidate for surveillance. So did my urologist, and accordingly, arranged for a CAT scan in 4 months. I did ask to talk to an onco, and he referred me to one in his department. I wasn't scheduled to see her until yesterday, one full month after my orchiectomy.
I was slightly annoyed about the onco he referred me to because, A) She was a D.O. not that I have anything against D.O.s, but I really have never had one, and B) She has no publications in the area, while another onco in his department cites testicular cancer and kidney stone disease as his specialties (acutally, he's a surgical oncologist). He had also trained at Sloan Kettering during his fellowship. Nevertheless:
Yesterday I went there in relatively good spirits. It was completely different then I had thought though. I thought the onco and I would sit in an office and discuss my case. Instead, I was examined in a procedure room by a oncology fellow. He was friendly and discussed my case a bit, and said it was incredible that it was caught so early, and that I shouldn't worry about the slight lymphadenopathy too much. That was now news to me.
Anyway, one full hour after my scheduled appointment I got to talk to the onco. She went on about how she was not comfortable recommending surveillance because she would like to see a 'normal' CT to make that recommendation. In fact, she wants to rule out metastases and wants me to have a chest CT. She recommends radiation, but I told her I really want surveillance but I will definitely consider radiation. At this point I send the fellow to make copies of my medical records so that I have them. In the meantime, we schedule a chest CT, and a Rad Onc consultation and arrange for blood to be drawn. While I'm waiting for the phlebotomist, I review my records, including the CT. Nowhere does it say that there is lymphadenopathy. Some LNs were seen but "within normal size parameters". It the report it also says "all retriperitoneal, pelvic, and inguinal nodes appear normal".
So I confront the onco with this info, and she starts sidestepping, explaining that they noted lymph nodes on the CT and it worries her, and who told me I had lymphadenopathy anyway, and that she wants to take a look at the scans personally...
...and that was another thing that bothered me, she seemed completely unprepared to meet with me... she had not reviewed my pathology slides personally, she could not answer some questions that I had about the path report, and what I think happened is that she was simply quickly briefed by the oncology fellow and just parroted what he said about the lymphadenopathy.
Needless to say, I'm going to fire her. I made an appointment with the Uro for tomorrow (before my possibly unescessary Chest CT. I plan to simply tell him that I am uncomfortable with the onco he referred me to... nothing bad, just not comfortable.
I also called Dr. Sheinfeld's office at Sloan. They want to see my reports by tomorrow, so that I may get in by next Thursday. I really want to talk to someone who knows TC.
Any comments or advice? Should I bail on the Chest CT? Should I fire this D.O.? Is she right about the LNs not being usually commented on?
I'm not sure about the CT, but I will likely keep my appointment w/the Rad Onc.
DJM
Previously, I posted that I had stageI seminoma (good: margins, no LV invasion, no epididymal invasion, small tumor (1.5 cm), over 35 (I'm 38)), also, I was told I had normal tumor markers, CXR and AB/Pelv CT. I thought it made me a good candidate for surveillance. So did my urologist, and accordingly, arranged for a CAT scan in 4 months. I did ask to talk to an onco, and he referred me to one in his department. I wasn't scheduled to see her until yesterday, one full month after my orchiectomy.
I was slightly annoyed about the onco he referred me to because, A) She was a D.O. not that I have anything against D.O.s, but I really have never had one, and B) She has no publications in the area, while another onco in his department cites testicular cancer and kidney stone disease as his specialties (acutally, he's a surgical oncologist). He had also trained at Sloan Kettering during his fellowship. Nevertheless:
Yesterday I went there in relatively good spirits. It was completely different then I had thought though. I thought the onco and I would sit in an office and discuss my case. Instead, I was examined in a procedure room by a oncology fellow. He was friendly and discussed my case a bit, and said it was incredible that it was caught so early, and that I shouldn't worry about the slight lymphadenopathy too much. That was now news to me.
Anyway, one full hour after my scheduled appointment I got to talk to the onco. She went on about how she was not comfortable recommending surveillance because she would like to see a 'normal' CT to make that recommendation. In fact, she wants to rule out metastases and wants me to have a chest CT. She recommends radiation, but I told her I really want surveillance but I will definitely consider radiation. At this point I send the fellow to make copies of my medical records so that I have them. In the meantime, we schedule a chest CT, and a Rad Onc consultation and arrange for blood to be drawn. While I'm waiting for the phlebotomist, I review my records, including the CT. Nowhere does it say that there is lymphadenopathy. Some LNs were seen but "within normal size parameters". It the report it also says "all retriperitoneal, pelvic, and inguinal nodes appear normal".
So I confront the onco with this info, and she starts sidestepping, explaining that they noted lymph nodes on the CT and it worries her, and who told me I had lymphadenopathy anyway, and that she wants to take a look at the scans personally...
...and that was another thing that bothered me, she seemed completely unprepared to meet with me... she had not reviewed my pathology slides personally, she could not answer some questions that I had about the path report, and what I think happened is that she was simply quickly briefed by the oncology fellow and just parroted what he said about the lymphadenopathy.
Needless to say, I'm going to fire her. I made an appointment with the Uro for tomorrow (before my possibly unescessary Chest CT. I plan to simply tell him that I am uncomfortable with the onco he referred me to... nothing bad, just not comfortable.
I also called Dr. Sheinfeld's office at Sloan. They want to see my reports by tomorrow, so that I may get in by next Thursday. I really want to talk to someone who knows TC.
Any comments or advice? Should I bail on the Chest CT? Should I fire this D.O.? Is she right about the LNs not being usually commented on?
I'm not sure about the CT, but I will likely keep my appointment w/the Rad Onc.
DJM
. Anyway, tomorrow I'll meet with the uro and discuss the LNs, and I'll tell him I'm jumping ship...
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