NIH cancer center 2nd opinion

jessie123

I have read on this board and other places that you should have your biopsy slides sent to an NIH cancer center for a second opinion. There are quite a few NIH centers in the U.S. I called Emory in Atlanta and UAB in Birmingham and was told by both that you can't just send biopsy slides -- you must actually travel to the center. Does anyone know which centers will accept the slides for cancer diagnosis. Maybe the doctor has to do it. A good friend of mine was diagnosed 20 yrs ago with breast cancer -- her doctor sent her slides to some place in New York and it turned out that she did not have cancer.

ShetlandPony

I wonder if there was confusion in terminology, especially since you probably spoke with a clerk and not a medically trained person. The phrase “second opinion” to me means you visit a new doctor/institution and get their take on your situation. But it sounds like you are looking for “pathology review” where they look at the slides to see if they agree with the original pathologist’s interpretation. So you might try calling again and asking how to get a pathology review. Or ask your current doctor. There will have to be doctors orders. The slides may be sent, or they just might allow you to hand carry them as I did.

By the way, a full second opinion (that includes a visit) from a major cancer center is always reasonable as well, especially with ILC, in my opinion.

jessie123

Thanks so much for the information. I agree that I need a full second opinion at a major cancer center, but I'm alone and almost 70, terrified of airplanes and M.D. Anderson is a 10 hour drive away. I could go to UAB in Birmingham which is a NIH designated center -- that's about a 5 hour drive. I wish that I still lived in Houston. We have a medical school here with a designated cancer center -- The Mitchell Cancer Center. The dr. I'm going to use is Dr. Dyess. She is well published on pub-med and currently the director of two breast cancer clinical trials. I'm hoping that is good enough because I'm exhausted already and I haven't even started. I will see Dr. Dyess on Tuesday for my first consult. She may have to do another core biopsy because that first doctor at another hospital screwed up. I'll ask her to send the slides to an NIH hospital -- Thanks again for your information -- I was pretty frustrated. I don't want to get this wrong like my husband did.

jessie123

Shetland

I see your tumor was about the same size as mine and everything looked good for the lumpectomy , but it reoccured a couple of years later. I think you unknowably just helped me make up my mind to have a mastectomy. All 3 of my friends who have had ILC have told me that if they had to do it again they would not have reconstruction. I guess I need to find some pictures of unconstructed breast, but at 70 I don't know why I'd need them. Although mine are large and even though I don't care about them they are part of ME and it will be weird not to have them.

ShetlandPony

Jessie, I hope my history did not scare you. I often consider before I post, the risk of scaring someone vs. the opportunity to provide helpful info. Keep in mind that I was quite a bit younger than you and premenopausal so that’s a different ball game, I think. Not sure a mastectomy would have prevented the recurrence for me. Do talk to your docs as much as you need to in order to understand mastectomy vs lumpectomy plus radiation, and what your own unique situation requires. Going to a medical school or university is a good plan. They should have more expertise and a tumor board to make recommendations for you.

I hope you can access an in-person support group and/or a social worker at the cancer center, and be ready to accept help from people who offer (make a list), to help you through this time. Sending you a hug.

There is a lot of discussion of reconstruction vs flat here on BCO. Just don’t let a surgeon push you into anything you are not sure about.