The resection surgery
We met with surgeons from both Columbia and MSK. I picked the one from MSK.
Columbia surgery
We met with Dr. Francis Lee, an orthopedic surgeon at Columbia. on June 26 and July 9, 2002. We asked a set of questions that I had prepared with the help of my parents and Bruce.
Dr. Lee described the surgery, using my pre-chemo MRI images to help explain. In removing the tumor, he would take up to 3cm of healthy nerve on both ends of the tumor (this means that a total of 13cm of the tibial nerve would be removed). He would remove a bit of 1 or 2 hamstring muscles. He would be able to leave the peroneal nerve, even though it is adjacent to the tumor. Because of the location of the tumor with respect to the blood vessels, the envelope of the vessels would be taken out with the tumor. This wouldn't leave a large enough margin, so I would need radiation (6 weeks ?) to sterilize the area. The new incision would encircle the entire biopsy incision (the biopsy incision and a margin would be removed to make sure that there are no cancer cells left in the local area); this would involve 2 inches x 7 inches of skin.
If Dr. Lee performs my surgery, he will have 2 residents assisting him. The surgery would last approximately 4 hours. I will have a drain for 3-5 days. I would probably have to stay in the hospital for 7-10 days.
Recovery: I will have some leg swelling (which might last up to a year), but should be walking in 3-4 days. (The swelling can be helped by elevating the foot and doing foot pumping exercises.) I would probably be on crutches for 2-4 weeks, and using a cane for a few weeks after.
Radiation would start 10 days to 2 weeks after surgery. Chemo could resume 2-3 weeks after surgery.
Dr. Lee discussed how it might be possible to save the tibial nerve if it is flattened on the tumor, and not involved in the tumor. (It is my understanding from the neurosurgeon who did the biopsy that the tumor is in the tibial nerve.)
Dr. Lee is not supportive of a nerve graft being done at the time of the resection. When it is done, it would be done with a piece of the sural nerve (which is located in the calf). The radiation might affect the ability of the nerve graft to take. He stated that I should be able to walk fine with an ankle brace; he called the brace an AFO.
He suggested that I meet with Dr. Peter Schiff (a radiation oncologist) before the resection.
He wanted a PET scan performed; it might be able to tell if the tumor is mostly dead before the surgery. (Dr. Keohan disagrees; she has seen obviously growing tumors come back PET negative.)
MSK surgery
We met with Dr. Brennan on July 12. The description that he gave of the surgery was the same as Dr. Lee with a few exceptions, e.g., I would probably have to stay in the hospital for 5-7 days. Due to his experience removing soft-tissue sarcomas, we choose him to perform the surgery.
Additional information
I spoke with Dr. Keohan, my oncologist, on July 3. I learned the following:
 | Picking between the two surgeons I am considering will NOT effect my survivability since they will both do a fine job at removing the tumor. I should be making my decision based on their plans on how it will affect my mobility. |
| I should press both of them on the issue of worst-case mobility (what muscles will be removed, etc.). In her conversation with one of the surgeons, it seems that he is not convinced that it is a nerve tumor, versus a soft tissue tumor pushing up against the nerve. |
| From the surgeon-point-of-view, it is not important that the tumor is a Ewing's sarcoma, but that it is a soft tissue tumor. If it is a nerve tumor, this is important. |
| She feels that the nerve graft most probably won't survive the radiation therapy if is it external beam; she didn't have an opinion on the bracytherapy. (So, if I need external beam therapy, I should probably wait until the end of rad/chemo to get a nerve graft.) |
| One of the points that the surgeons might differ in is what type of radiation will follow. Dr. Lee's plans are to use external beam radiation. Dr. Brennen MIGHT use bracytherapy. Each of these have their own advantages/disadvantages, but there haven't been randomized studies that I will be able reference for guidance. |
I spoke with Dr. McKhann, the neurosurgeon who did my biopsy, on July 3. I learned:
| At the time of the biopsy, the tibial nerve was encased in the tumor (at one end, the tibial nerve entered, and exited out the other end). The peroneal nerve was within 1cm of the tumor, but was not affected. |
| My tibial and peroneal nerves are split before the tumor. |
| He will want to make some calls once he talks to Dr. Lee about the surgery before giving an opinion on when the nerve graft should occur. |
| Since I do have some use of the tibial nerve, removing the tumor without a graft will cause loss of functionality/sense that I currently have. |
Some radiation pointers:
| bracytherapy overview from Columbia |
| radiosurgery article (this treatment is sometimes used with Ewing'g sarcomas) |
| discussion of Intersity Modulated Radiation Therapy (IMRT) (this treatment is sometimes used with Ewing'g sarcomas) |
| discussion of treatments from MSK for soft tissue sarcomas (some of this discussion is on the radiation treatments) |
Some relevant papers:
| abstract that says Ewing's sarcoma patients with early onset of postop irradiation might be slightly better off than those who wait. |
| article which discusses peripheral nerve repair. |