We confirmed the biopsy at Brigham and Women’s on 4/16 at 11am. I called to see if I could get the CT, X-Ray and blood work results. They told me that after the biopsy and when the pathology is completed, the team of doctors working on my case will meet. They will go over ALL the information to decide the next steps. We will then get to meet with the team of doctors to talk about where we are headed. I was frustrated not being able to get answers but after researching the process, it makes sense.
So the timeline is: Biopsy 4/16 and meeting with the team of doctors to get results 4/24 or week of 4/27 depending on when pathology is ready. Ideally it is benign, we take it out and end of story.
Kathy and I have been doing allot of surfing to find information on Sarcoma. In doing that research we found that since Sarcoma is a very rare cancer (less than 1% of all cancers) it is cared for very differently than other cancers. One common theme is to make sure you are seeing a doctor or hospital that is well versed in treating Sarcoma. We could not be at a better place than Dana Farber. Hospitals from all over the world send samples and reach out for help from the folks at Dana Farber. No doubt in our minds we are in the right place.
We found this website that has a wealth of really good information. The link is listed below.