Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Our experience suggests it is very important to get a second surgical opinion if it looks as if your primary tumor is difficult to resect or "non-resectable."

We were recently surprised when we sent the CDs of our daughter's films to a Sarcoma Center (UCLA) and the surgeon suggested that a much less extensive resection was necessary. Please email me offlist for more details.

Dana Farber is excellent for molecular analysis and certain novel therapies (like the GVAX vaccine), but they do not have as extensive sarcoma surgery experience as Sloan Kettering, MD Anderson, or UCLA. Children are assigned general pediatric surgeons who may not have any specialty training in surgical oncology or sarcoma.

'F' - I know for sure that Dana Farber has very extensive experience in sarcoma surgery, I am almost sure that they do it more then UCLA - they only was certified as a sarcoma clinic last year, but I support you by 100 % about the having second surgical opinion (and even better to have at least 3-4 when the complex cases concern). Brilliant surgeons are like the any other rare specialties and they are very different in their experiences, technique, availability of the technically advanced tools end philosophy and when there is such a specific job to be done some of them might be better suited then the other, with experience being the starting point here.
This was the reason we traveled to Germany to have two very complex surgeries - extensive pulmonary metastasectomies - done by Dr.Rolle, because you have to find the one who can do it with the higher quality and minimal loss for a child. I have heard that one of the best abdominal sarcoma surgeons is from MDA.

It is a very complicated business, that is for sure, Olga. But I have to admit I am shocked at the degree differences in assessment. The expertise of the surgeon is affected by location (lungs, pelvis), you are right. Dr. Weldon's training is in general surgery with no specific surgical oncology experience. I think this matters especially in difficult-to-resect cases. We also learned that Tumor Board at DF is more medical oncologists, than the cancer surgeons.

The UCLA surgeon is did his surgical oncology training at Sloan Kettering and his dad was chief of the Sarcoma service before him at UCLA and pioneered the procedure that caused amputations for Ewings to drop from 40% to 5% with no change in survival or local recurrence rate. The procedure is called the Eilber protocol I think. We had gotten Fritz Eilber's name from Paul Sugarbaker, a surgeon who wrote a book chapter on the resection of pelvic sarcomas and I think was the head of a surgical division at the NIH.

Dana Farber is relatively new on the surgical sarcoma side - and in terms of volume UCLA is 3rd after Sloan Kettering and MD Anderson. LA is a big city. I did hear that DF is getting busier with sarcomas because GIST patients are finding them with the successes of Sutent, but it is a much smaller hospital. I looked at doing my internship year there.

One more thing, in case this ever helps someone. Eilber told me that sarcomas tend to push instead of attach or pull like other cancers. As a result a question arises - where did the sarcoma start? If it started in the wall of an organ, then that wall will have to be resected for sure. If it starts in stroma, then it is possible to spare neighboring but as yet non-invaded structures.

Also in our search for the literature re: extent of margins, we found that positive margins in resection of sarcoma primaries had much more significance in terms of local recurrence and survival for high grade tumors. ASPS would qualify as low grade.

When you say DFCI are you also including Boston Children's Hospital in that analysis? Anthony's surgeon was the Chief of Surgery at the children's hospital. Is it just the luck of the draw which surgeon they assign?

It is luck of the draw unless the attending (usually the oncologist) has a strong preference. The surgeons at Dana Farber come from Boston Childrens. We wanted Shamberger (my brother remembered him while he trained at Harvard), but at the time we were told we should proceed to surgery quickly and Shamberger was booked out for 4 weeks. As a result we were only given a choice of Weldon.

Once we saw Weldon, it seemed a little like "surgeon's code" - that it was not appropriate to seek a second opinion from Shamberger because Weldon was "just as good."

John Goldberg didn't want to make waves, but I think he was in his first year of being an attending and therefore less confident about doing something like this. Our current oncologist at Seattle Childrens (Hawkins) has no problem with getting additional opinions.

At least our experience - if you know someone is highly recommended, wait to see them before seeing whoever is available.

This post is here to prevent anonymous bumping, please disregard it.