Tweet
Hi all,
I usually lurk in a forum for a while before posting, to get the "lay of the land" and get as much information as I can from archives before asking questions of my own. However, I'm sure you can understand that time is critical for me right now, and so I apologize in advance for any breaches of forum etiquette.
My diagnosis is Stage IIA Seminoma, with three enlarged lymph nodes in the retroperitoneum (RP) on the side of my I/O (left). The largest node is 1.4cm. I have gotten a casual opinion from the urologist who did my surgery and four formal opinions from oncologists, two of whom are professors at Harvard Medical School (HMS) and practice at Dana-Farber in the genitourinary cancer center. The opinions seem to me to be inconsistent, so I'll just lay it out as follows.
The urologist informally said he thought that any lymph node over 1cm in the RP is a cause for concern, but that it would be "borderline" as to whether I could choose surveillance as a treatment. This I later found was not true - every oncologist I've seen said nothing about "borderline".
The first medical oncologist I saw was not a TC expert, and so he consulted with Dr. Glenn Bubley, who is the director of genitourinary medical oncology at Beth Israel Deaconess in Boston and also a professor at HMS. They both agreed that the standard treatment for my situation is a course of radiation over about 20 treatment days. However, they also said that just recently (last 6 months or so) in genitourinary oncology favor has begun to shift away from radiation toward chemo since the risk of second malignancies is thought to be less with chemo. They offered an alternative treatment for me: 3 cycles of EP. After doing much reading on several reputable web sites (TCRC and NCI, among others), I found that as they said, the standard for stage IIA seminoma is RT. For stage IIB it seems that some may be given the choice of RT or chemo, but in this case chemo is either 3xBEP or 4xEP. I haven't seen 3xEP mentioned as an appropriate treatment for any stage or type of TC. Their reasoning is that since my cancer is in early stage II, they would rather spare me the exposure to Bleomycin or to the fourth cycle of cisplatin.
My oncologist wanted me to speak with a radiation oncologist before deciding, so I met with one at the same hospital for a consultation. He informed me that the risk for second malignancies from RT is about 1%. That didn't sound too bad to me compared to the complications that can come with chemo, so I started thinking maybe I'll go with the traditional treatment.
I wanted to get a second opinion, if for no other reason than to set my mind at ease about my decision. I tried to get an appointment with Dr. Kantoff at Dana-Farber, but the earliest available appointment was in about two and a half months. Kantoff is listed on TCRC's experts page as one of four in the Boston area, but one of only two oncologists. I couldn't wait 2.5 months though, so I scheduled appointments with two other doctors in his group - one a radiation oncologist and the other a medical oncologist.
I met with the radiation person first, and she immediately set my mind at ease by telling me she has treated hundreds of seminoma patients with RT over a period of ten years and not one has had a recurrence or second malignancy! Sounds pretty good to me, where do I sign? She also said that sometimes she likes to hold off on treatment for nodes only slightly larger than normal, ideally for three months from the last CT scan but at least two months. At that time, she would order another CT scan and see whether the node had grown, shrunk or remained the same. If it had shrunk she might suggest surveillance as a treatment option. If not, she would go ahead with RT. She justified this by saying
1) sometimes lymph nodes may become inflamed from the I/O surgery,
2) my CT scan was three days after the I/O, so she said it's possible that it could just be inflammation (God knows there were some, ahem, outside parts in the general area that were still inflamed at that point),
3) she has seen this in seminoma patients with as large as 1.2 cm nodes
4) measuring nodes from the CT scan is imprecise enough that the 1.2 cm node in that patient could very well have been the same size as or even larger than my 1.4cm node, and
5) seminoma is slow growing and so waiting a few months is very unlikely to affect the outcome of treatment
After discussing it a bit more, we decided that I would get a CT scan about two months from the previous one, and the results of that would determine the next course of action. She said if she had to pull a number out of the air she would guess my chances for this "going away" by then to be about 50-50. I left her office in pretty good spirits, as you can probably imagine.
Two days later I had what I thought would be my third and final "second opinion", with a medical oncologist in the same group. After carefully reviewing my CT scans with a radiologist, she thought there was no question that I was at stage II, due to the location, number and pattern of lymph nodes involved. It turns out that the radiation oncologist I saw two days earlier had not been able to view the CT scans because of a computer problem, and she was going by the report written by the radiologist (at a smaller, non-cancer-specific hospital) who originally interpreted the CT scan. The second oncologist felt pretty sure than the first oncologist would change her opinion if she had been able to view the results herself, so they planned to meet between themselves that afternoon to go over the CT scans and come to agreement. Later that day I got a call from the first oncologist saying that now that she had a chance to look at the CT scans, she agreed with the other doctor in that there would likely be no benefit in waiting a month. OK, spirits not so good at this point.
(continued in "Weird situation, part 2 of 2")
I usually lurk in a forum for a while before posting, to get the "lay of the land" and get as much information as I can from archives before asking questions of my own. However, I'm sure you can understand that time is critical for me right now, and so I apologize in advance for any breaches of forum etiquette.
My diagnosis is Stage IIA Seminoma, with three enlarged lymph nodes in the retroperitoneum (RP) on the side of my I/O (left). The largest node is 1.4cm. I have gotten a casual opinion from the urologist who did my surgery and four formal opinions from oncologists, two of whom are professors at Harvard Medical School (HMS) and practice at Dana-Farber in the genitourinary cancer center. The opinions seem to me to be inconsistent, so I'll just lay it out as follows.
The urologist informally said he thought that any lymph node over 1cm in the RP is a cause for concern, but that it would be "borderline" as to whether I could choose surveillance as a treatment. This I later found was not true - every oncologist I've seen said nothing about "borderline".
The first medical oncologist I saw was not a TC expert, and so he consulted with Dr. Glenn Bubley, who is the director of genitourinary medical oncology at Beth Israel Deaconess in Boston and also a professor at HMS. They both agreed that the standard treatment for my situation is a course of radiation over about 20 treatment days. However, they also said that just recently (last 6 months or so) in genitourinary oncology favor has begun to shift away from radiation toward chemo since the risk of second malignancies is thought to be less with chemo. They offered an alternative treatment for me: 3 cycles of EP. After doing much reading on several reputable web sites (TCRC and NCI, among others), I found that as they said, the standard for stage IIA seminoma is RT. For stage IIB it seems that some may be given the choice of RT or chemo, but in this case chemo is either 3xBEP or 4xEP. I haven't seen 3xEP mentioned as an appropriate treatment for any stage or type of TC. Their reasoning is that since my cancer is in early stage II, they would rather spare me the exposure to Bleomycin or to the fourth cycle of cisplatin.
My oncologist wanted me to speak with a radiation oncologist before deciding, so I met with one at the same hospital for a consultation. He informed me that the risk for second malignancies from RT is about 1%. That didn't sound too bad to me compared to the complications that can come with chemo, so I started thinking maybe I'll go with the traditional treatment.
I wanted to get a second opinion, if for no other reason than to set my mind at ease about my decision. I tried to get an appointment with Dr. Kantoff at Dana-Farber, but the earliest available appointment was in about two and a half months. Kantoff is listed on TCRC's experts page as one of four in the Boston area, but one of only two oncologists. I couldn't wait 2.5 months though, so I scheduled appointments with two other doctors in his group - one a radiation oncologist and the other a medical oncologist.
I met with the radiation person first, and she immediately set my mind at ease by telling me she has treated hundreds of seminoma patients with RT over a period of ten years and not one has had a recurrence or second malignancy! Sounds pretty good to me, where do I sign? She also said that sometimes she likes to hold off on treatment for nodes only slightly larger than normal, ideally for three months from the last CT scan but at least two months. At that time, she would order another CT scan and see whether the node had grown, shrunk or remained the same. If it had shrunk she might suggest surveillance as a treatment option. If not, she would go ahead with RT. She justified this by saying
1) sometimes lymph nodes may become inflamed from the I/O surgery,
2) my CT scan was three days after the I/O, so she said it's possible that it could just be inflammation (God knows there were some, ahem, outside parts in the general area that were still inflamed at that point),
3) she has seen this in seminoma patients with as large as 1.2 cm nodes
4) measuring nodes from the CT scan is imprecise enough that the 1.2 cm node in that patient could very well have been the same size as or even larger than my 1.4cm node, and
5) seminoma is slow growing and so waiting a few months is very unlikely to affect the outcome of treatment
After discussing it a bit more, we decided that I would get a CT scan about two months from the previous one, and the results of that would determine the next course of action. She said if she had to pull a number out of the air she would guess my chances for this "going away" by then to be about 50-50. I left her office in pretty good spirits, as you can probably imagine.
Two days later I had what I thought would be my third and final "second opinion", with a medical oncologist in the same group. After carefully reviewing my CT scans with a radiologist, she thought there was no question that I was at stage II, due to the location, number and pattern of lymph nodes involved. It turns out that the radiation oncologist I saw two days earlier had not been able to view the CT scans because of a computer problem, and she was going by the report written by the radiologist (at a smaller, non-cancer-specific hospital) who originally interpreted the CT scan. The second oncologist felt pretty sure than the first oncologist would change her opinion if she had been able to view the results herself, so they planned to meet between themselves that afternoon to go over the CT scans and come to agreement. Later that day I got a call from the first oncologist saying that now that she had a chance to look at the CT scans, she agreed with the other doctor in that there would likely be no benefit in waiting a month. OK, spirits not so good at this point.
(continued in "Weird situation, part 2 of 2")
Comment