Finally Heard From the Surgeon's Office- Very Annoyed

So, I finally heard back from the surgeon's office. I called and called, no one calls back. When I spoke to Dr. Sclafani on Thursday she told me the surgery date should be 9/28 and she would call me back Friday to confirm it. I never got any call back. I called a bunch of times, no call back. There is no way to contact them on a weekend, no email or anything. Monday I started calling again. No call back. I called again today. After being on hold some time I finally spoke to Dr. Sclafani's assistant Vanessa. She said she is sorry she didn't get to call me back and she thought they could do the surgery on October 6th. When I told her Dr. Sclafani said she could do it on 9/28 she said that was booked and maybe she could get me in for 9/29 but if so I had to get to do pre-surgical testing today. If I can't get there today it would have to be 10/6. The last time I went to her office I waited over two hours so to do it today means making last minute provisions for Julianna. They had a 5 pm appointment. So we are back to 10/6.

So far I am so disappointed with Sloan I am so sorry I waited a month to get an appointment there. If this was someone working on my house instead of my body I would have dropped them by now. I got an appointment with a different plastic surgeon. It is for today. I emailed him over the weekend when I couldn't get in touch with anyone from Sloan. He called me back himself on a Sunday night. His name is Dr. Keller and he is supposed to be an expert on DIEP flap reconstruction. He said he thought I could have my surgery within two weeks.

I will post after my appointment with him.

http://www.breastflap.com/reconstruction-techniques/diep-flap-description.cfm

Surgery being moved up

I spoke to Dr. Sclafani today and I told her I wasn't comfortable waiting until Nov 17th for the surgery. She said she thought waiting that long was a very bad idea. She recommended doing the double mastectomy, recommended doing reconstruction with implants and possibly the full DIEP reconstruction later, after chemo. She said that putting the surgery off that long also required delaying the chemo and that was also a bad idea. She said she thought she could get me on the schedule for 9/28. That is pretty soon so it doesn't allow a lot of prep time.

They are going to let me know tomorrow if that date is a go. This smaller surgery will only require 3 to 4 days in the hospital instead of a full week. However, the recovery is still pretty similar.

IVF - Dr. Licciardi, NYU

I spoke to Dr. Licciardi at NYU IVF about the possibility of doing IVF and freezing any resulting embryos. He said there is less than a 1% chance of it being successful. He said the combination of my age, the freezing and thawing and the different meds would make it almost impossible. He said I could still try it if I really wanted to. I have done a lot of IVFs so I know it is really difficult. I don't think I am going to try it. I am very sad about this news.

He said in the future when all the treatment is over I could do donor egg and surrogate. I will likely do this, but I was really hoping Julianna could have a full sibling.

Plastic Surgeon - Sloan Kettering NYC

I met with the plastic surgeon today. Her name is Dr. Colleen McCarthy. Imagine that, an Irish doc, how cool! I liked her right away. The appointment was over two hours of her explaining the various types of reconstruction. She took a lot of time to explain everything in detail and even drew pictures explaining how each type of surgery is done. She explained the pros and cons of each type.

The type of reconstruction we both thought would be good will require over 12 hours in surgery. I would not be able to get a surgery date to do immediate reconstruction until Nov 17th. All the doctors say that the cancer really won't progress in that amount of time. I get that on an intellectual level, but on an emotional level I picture it getting bigger everyday. I really just want it out. I asked Dr. McCarthy if I could just do a lumpectomy with sentinal node biopsy now and then do the larger procedure on Nov 17th. She said that decision would be up to Dr. Sclafani since she is the breast surgeon, but from a reconstruction viewpoint that would be fine. She also said I could just do a mastectomy on the right side and have an immediate implant placed. I could then do the risk reducing left mastectomy and the whole flap reconstruction at a later date, poss Nov.

I should find out in the next day or so which way I will be able to go. The whole process will require a 7 day hospital stay. That is a bit of a bummer, but having it all at once and over with would be nice.

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.

Still waiting

So, I have finished all the tests for now. Most were good. I am negative for the BRCA mutation, there is no cancer in my bones and none in any vital organs. That is good and I am very thankful.
I am also very thankful for all the support I have from my friends and family. When I first found out about the cancer I felt (mentally) like I was hit by a truck. I am better now and back to my normal self. I am ready to fight it. I am anxious to get a surgery date. I never thought I would look forward to this surgery, but now I do. I am ready to have it out of me. I am ready to do it so I can put it all behind me.

I love you all and I thank you for getting me through the hardest part, the acceptance that this is real and that it is do able. I can do it and I welcome all the help that everyone has offered.

I am trying to do some fun things with Julianna because I know we won't be able to do much in the near future. Today we went to the Bronx Zoo. It was great. She loved all the animals and I loved her loving it!

Test Results

I got the preliminary BRCA results back and I do not have any identifiable mutations. They still have to do some comparisons but it is 98% sure that I do not have it. I am so happy!! I was so worried that I passed it on to Julianna. It is also much less likely that my sisters or cousins have it. It is a big load off.

I also got all the CT scan results back. They are all normal except for a functional cyst on my ovary, no big deal. I am super happy about this especially since I was obsessing about the cancer having spread to all of my vital organs. I know it is very unlikely but your mind can do weird things. So, all scans and tests are over. I just have to wait for my appointment on 9/11. I really want to get moving on this. The faster I start, the faster I finish.