Pre-surgical Testing

I had some pre-surgical testing today. I got to go to my own doctor, Jorge Gardyn. I had an EKG, bloods and urine. I still have to have the chest x-ray. It will probably be on Friday due to work and childcare.

As the surgery date gets closer I realize I have tons of things to do before I am ready. I have the CT angiogram on Monday. It is at noon, but I think it may be an all day thing. I am going to go to work Tuesday but I think that will be it for work for awhile. I have to try to get things done around here that I won't be able to do for awhile.

I am worried about what the final pathology report will show. I am also worried about the nodes. I am having some discomfort in my right armpit. I know that may be a bad sign. They said it could be from the biopsy trauma or possibly due to issues from my shoulder because I had surgery on it a number of years ago. However, there is a realistic possibility that it could be nodal involvement. I think the waiting and imagining is worse than actually knowing about a bad reality. So far its been helping to stay busy, busy, busy.

Thanks to everyone for your prayers, support and encouragement.

Surgery Confirmed for 10/9

I spoke to the doctor's office staff today. The surgery is confirmed for October 9th. I am glad it is finally really scheduled. They haven't given me the time or anything yet but i am sure that info will come soon.

Thanks everyone for your support.

Dr. Kostroff

I had my appointment with Dr. Kostroff. She was very nice and answered all my questions. Since she is the 4th breast surgeon I have seen I am getting pretty good at knowing what to ask. She can do the surgery on October 9th. She works with Dr. Keller all the time and it sounds like they have a pretty good system down. She looked at all my films and she said she will send my biopsy slides to LIJ.

She agrees with my decision to do a double mastectomy. She feels that the family history is so strong that it makes the risk high enough to justify it. She will do the sentinal biopsy on both sides. When I said I was concerned about my arms being hyper extended during the surgery she said that they are doing special things to reduce the risk of injury during the surgery. They will check for position of comfort and move my arms and legs during the surgery to reduce any injury from lack of movement or weird positioning. All good.

She said she can set me up with an oncologist who does strictly breast oncology and is on my insurance plan. That is great and I did not know there were even oncologists who worked with only breast cancer patients.

Now we get to the money. Always an issue. She doesn't take any insurance. I spoke to her financial person. She said my part of it would be $10, 500. I said I didn't think I could use Dr. Kostroff and would have to keep looking for someone on my plan. I am a little on the edge and PMSing on top of it so I just started crying. Dr. Kostfroff was nearby and said to come in her office.

When I went into Dr. Kostroff's office I explained the whole Julianna birth story to her. I said I had great insurance and was using an OB on my plan. Then, I got preeclampsia and HELLP syndrome. It led to kidney, liver and heart failure. I had severe cerebral edema and was going into DIC. They did an emergency c-section. The surgeon wasn't on my plan. The anesthesiologist, not on the plan. The sent in a hematologist, GI doctor, kidney specialist, neurologist, opthamologist, cardiologist, pulmonologist, family practice and on and on. As far as Julianna, the neonatologist, not on the plan and $1500 a shift, times 16 days. All in all, I am very happy we are both alive, but it was almost $60,000 by the time it was over, and that was just my 20%. Everything I had saved over 20 years was gone in 16 days. It is still not paid. So, here we are with catastrophic medical event number two in less than two years. I explained to her that I can't do it. She said she understood and agreed to take whatever the insurance paid her. I thought that was really nice and a HUGE relief to me.

Its funny, with the huge debate about healthcare these days I hear so many people saying how great their personal insurance plan is. I say get back to me on that after you have a catostrophic medical event. Just because you think everything is covered doesn't mean it is. The doctors who see you in the hospital bill separately from the hospital. I was covered for the hospital. If you need specialists, and you never know, you are probablly not covered for them all. Even with good insurance you are probablly responsible for 20% of the bill for those not on your plan. Let me tell you it will not take long to add up big. I do not really know anything about the current plan being proposed, but I can tell you that something really needs to change.

So I am happy about her working with me on the financial end. I really liked her and it sounds good. They said they would call me back tomorrow to confirm the date for 10/9.

Dr. Alex Keller - Reconstruction

I had my appointment with Dr. Alex Keller. His office is in Great Neck. I didn't have to wait at all which was great since I was on my lunch. He told me all about the DIEP procedure. He has done over 1000 of them. He explained how the vessels are reattached with micro surgical techniques. He measured me all over and then took photos. Topless photos again. Back when I was 20 they would have been pretty good. Not so much now. After that he said I could get dressed. I started getting dressed and he said I could go in the dressing room. I thought that was pretty funny considering he had just done the exam and took pictures.

The surgery takes at least 12 hours. I told him that the other plastic surgeon said may appendectomy scar, which is vertical, may cause a problem with the vessels that are needed. He said that he does a test called a CT angiogram to all his patients prior to the surgery. It produces detailed pictures of the blood vessels needed to perform the DIEP procedure. He said this makes it so he can operate with a "map" of sorts rather than going around blindly. He thought he would be pretty sure what to expect from this test, but there is always the possibility that he could find something he didn't expect once he gets in there. He also advised me that it was very likely I would need a blood transfusion after the surgery. There isn't time for me to give my own. I could get friends or family to donate or I could use the blood bank.

He talked about recovery. I can't lift Julianna for 6 weeks. :( That is a biggie but it is pretty similar with double mastectomy despite the type of reconstruction. I asked how long it would be until I could drive. He said 10 days to two weeks. Not too bad. I asked about showering. He said I could shower as soon as I got home. Very good. I asked how long in the hospital. He said three days. I thought that was great since Sloan said they keep you a week for this procedure. He said it was all comfort care and pain management after the first three days and he thought I could do that at home. He said I would need a visiting nurse to come to my house for a few days.

We discussed the DIEP procedure vs. implants. For implants the surgical time is very brief. However, you need multiple surgeries. They initially put tissue expanders in. Those have to have saline injected into them every few weeks until your tissue is large enough to take the breast implant. After that, there is an exchange surgery. In that surgery they take the tissue expanders out and put the permanent implant in. The problem with the implants is that it doesn't end there. You have to get an MRI every few years to make sure the implant hasn't ruptured. Also, they are not made to last forever and have to be replaced at least every ten years. The other problem is that it is a foreign object in your body. You can get saline or silicone. There are a lot of people who feel that leaking silicone implants are responsible for a lot of medical problems. The surgeons say that hasn't actually been proven, but why take the chance? So, they both have risks. With the DIEP procedure all the risk is up front because it is a long surgery, but after that you are finished. No long term follow up. It is your own tissue and actually the breasts will gain and lose weight as you do. It looks and feels like real tissue because it is. With the implants you have less risk at the time of the surgery but more lifetime risk and more surgeries long term. I prefer to get it all over with at the beginning and get it behind me.

Now we get to the subject of money. I asked him how much it costs. He said $60,000. He said he doesn't take insurance. I almost started crying right there. I don't have $60,000 and all my friends put together don't either. He said not to get upset and that I needed to speak to the woman in his office who handles the financial end of things. He said he has never turned a patient away for financial reasons. I spoke to her and she said she negotiated with my insurance company. They will pay for the whole thing!!!! All I have to pay is $100. I can handle that.

Dr. Keller works with two breast surgeons. One is Dr. Karen Kostroff. She is the Chief of Breast Surgery for the North Shore - Long island Jewish Health System. Impressive. The other is Marie Chen, also located in the same area. When I asked the office staff who they liked better they said they are both good. They said Dr. Chen takes insurance but Dr. Kostroff doesn't. They suggested I go to both and then make a decision. I thought that sounded like a good idea. I have an appointment with Dr. Kostroff today and I am hoping to see Dr. Chen later this week. I have to bring all my films and tests to each of these doctors. It was a little strange to call Dr. Sclafani's office to ask for my films. I told them I was going for a second opinion. I am still not cancelling the surgery date with them until I am locked in somewhere else.

I will post after my appointment with Dr. Kostroff.

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.