Friday, September 11, 2009

Appointment with Sloan Kettering Surgeon

I went for my appointment with Dr. Sclafani today. My friend Vanna came along with me. The appointment was for 10:45. We waited over 2 hours before they called us. Ugghh. It was great that Vanna was there. It gave us time to talk and catch up which was long overdue.

I liked Dr. Sclafani right away. She explained a lot of things and was very thorough. Her staff said that is why she is often running behind schedule. She discussed my options and agreed with my decision to do a mastectomy. She said the other area that was found to be questionable on the MRI is likely cancer. She said it is indeed possible for there to be a 5cm area of DCIS. (DCIS is ductal carcinoma in situ, it is a cancer that is confined to the duct of the breast and has not yet broken out. It is considered a stage zero cancer.) She said she has seen extensive ductal networks of cancer that had not yet broken out into the other tissue. She feels that it is highly suspicious because it is in the breast with the cancer. She also said that if it were simply menstrual changes there should be some evidence of it in the other breast. She said a lumpectomy of that magnitude (if necessary) would be very disfiguring and she would recommend a mastectomy if she did a biopsy and it was malignant.

I explained to her that I am already at peace with the decision to do a mastectomy and in fact want to do a double. She said that she didn't think I had tremendous risk to get it in the other breast but she agreed that she often heard patients regret that they had not removed both. Good enough for me. Since they are a set anyway I want to do both.

When I asked her what the prognosis was for this she said she did not know. She said it seemed like it was a stage 1 cancer but she would not be at all surprised if it turned out to be a stage 2. She also said it would probably be 8 treatments of the harsh chemo, a treatment every two weeks for 4 months. That is two more treatments than everyone else said. That is a big deal because it has a cumulative effect so each treatment is said have greater side effects. Essentially, the poison builds up in your body. It is to fight the cancer cells that might have escaped from the tumor but it kills good cells too. She also said it will be every two weeks instead of every three. This will make it much harder to get back to normal between treatments. She also said the treatment with herceptin would be a year. It would probably be infused every three weeks, but possibly more frequently.

We discussed reconstruction. She said that it may take some time to be able to coordinate the OR time with the plastic surgeon to do the type of reconstruction I want. The type I want is a DIEP flap. In that surgery they take the fat from the abdomen and move it up to form breasts. It involves microsurgery and is a very long extensive surgery. It will be a 12 hour surgery if it is done at the same time as the mastectomies. I have an appointment with the plastic surgeon, Dr. Colleen McCarthy, at Sloan Kettering in Manhattan. It is for Monday at 3pm.

I also discussed doing another IVF cycle. Dr. Sclafani feels that I will have time to do 1 or 2 more IVF cycles and freeze the embryos. The chemotherapy will probably put me into menopause, so this would be my last chance. I would not to be able to carry another baby so any embryos would have to be carried by a surrogate. Dr. Sclafani said the place she thought was best for breast cancer IVF is NYU. That is great because that is where I have been going. I am keeping my fingers crossed that this could work.

All in all it was extremely informative. There was good and bad information, but I appreciated her honesty and the fact that she was so thorough. She explained everything and even drew pictures to help explain things. I will know more after my appointment on Monday.

Thanks everyone for your support.


  1. I am SO glad that things are moving. It all sounds good, with the exception of the additional chemo burden. It's a year. It will pass. Please call on everyone - us included, airplanes are fast! - to help you.

  2. Mary Ellen
    Dido to what Nancy said. I know you have researched and thought things through and through. You are strong and we love you.
    Near & Far we are with you.