MD Anderson

I first set foot in MD Anderson, Orlando, on August 16^th. 2012. I felt I owed it to myself to at least see what they were all about. MD Anderson Cancer Center is the most highly acclaimed, world renowned, and highly recommended cancer institute in Orlando. I wasn’t really worried about my cancer. Ever since I was diagnosed in Seattle in May I knew it was early, and I knew it was small. My survivability was at 99.9%, unfortunately. I really wished they had caught this much later. I wish they had told me, “Amy, this is way too advanced. There is nothing we can do for you. You are going to die in 6 months.” I am extremely disappointed they did not say that. Extremely disappointed.

If that were the case I would not have to make any choices. I would not have to suffer the anxiety of how to live the rest of my short, miserable life with a mutilated, maimed, deformed and disfigured body.

Early in my research into the crazy world of cancer I read that it is best to tell your children, even your adult children the truth, especially the girls and not to keep it from them. I couldn’t tell the girls without telling the boy. From the moment I knew that I was going to need a mastectomy and not a lumpectomy my nightmare began and my panic attacks took over. My only other choice was to ignore the whole situation, and do nothing, to let the cancer run its course, and to die a natural death. No one could tell me how long it would take, one year, five years, ten years, 20…

That would have been my choice, but my children were adamant. They insisted that I had to live to dance at their weddings, and to see my grandchildren. Now that I live in Florida, I will never be able to travel to Washington to attend their weddings or see my grandchildren. But they played the guilt card and so, for my children, I had to live. I did not want to put them through the pain of losing a parent. I put their wants and needs before mine. I had no choice.

My only choice was how was I going to live after such a drastic, debilitating surgery?  It wasn’t about living; it was about quality of life. I could not bear the thought of going through the next 20 or, god forbid, 30 years, with only one real breast and nothing on the other side but a gash and a scar on a flat chest, permanently lopsided and stuffing my bra with a prosthesis. I would never be able to look in a mirror, or show myself to a partner. I would forever have to get dressed in the dark. No, reconstruction was the only way for me to keep living. It became my goal to find the best, the very best plastic surgeon in Florida to do me. I had no other choice.

My research showed that the plastic surgeons at MD Anderson are the best. They do the newest techniques and specialize in microvascular surgery. They harvest tissue from the woman’s belly, fashion it into a breast and attach it to the blood vessels in the chest. It then behaves like a natural breast; it gains and looses weight, moves naturally and feels real.

My first appointment that morning on August 16^th was with Kenneth Lee. Dr. Lee is young, probably very smart and extremely self confident. He claims to be passionate about what he does, reconstruction, and it was evident from his enthusiasm. He had a much more positive attitude than Dr. Zamora in Daytona.

But from the moment he saw me he told me the same thing Zamora did. I was not a good candidate for “tummy tuck” breast reconstruction, I did not have enough belly fat to create a breast. My only option was a silicone breast implant, just like they use in breast augmentation. He showed one to me and wanted me to touch it. I was horrified. It did not look like a breast or feel like one. It was hard and round, not the natural shape of a breast.

A couple of years ago I had an opportunity to have breast augmentation. I turned it down. I respect any woman’s decision to have implants, I just never wanted them for myself.  I love my breasts the way they are. They are beautiful. I was crushed and heartbroken. I had no choice.

Dr. Lee knew I wanted a natural look. So, he spoke to me very bluntly. He thought I had too high expectations and he did not want me to be disappointed. “Amy, your breasts are NEVER going to look the same again. You are NEVER going to look as you do today. You will NEVER have any feeling in your right breast, it will be completely fake. You are going to require a minimum of THREE surgeries before we are done. Your left breast will have to be augmented to look more similar to the right, but they will never be the same. And you may possibly loose sensation in the left. It is a process that is going to take about a year of treatment. You need to know the truth or you will be very disappointed.” I was devastated.

Then he showed me pictures of before and after surgeries he had done. They were all hideous and they all looked fake. I was horrified. He told me all the pictures he showed me were of bilateral reconstructions. He said that 90% of the women he treats opt for bilateral mastectomies. 90%! “That’s insane!” I said. “Why would anyone in their right mind cut off a perfectly good breast?” “Because then they will be more symmetrical”. “Do you have any pictures of any unilateral reconstructions you have done?” He thought for a moment and then he shook his head no. I think he was lying.

At this point it had been 12 weeks since my diagnosis.  I was still living in Daytona at my brother’s house. Orlando was an hour away. The deal on my house had not closed; I did not know when or if it was going to close.  Even if I had to drive to Orlando for treatment and back to Daytona to recuperate I did not want to be stupid. I knew this thing was growing and spreading. I did not want to lose my lymph nodes or have to go through additional treatment, like chemo, or radiation. I really had no more time to shop around. I told Dr. Lee I wanted to go forward. I had no choice.

My next stop was with the oncologist, Dr Shau, a middle-aged, Indian-American woman. She seemed like she was in a hurry and spent very little time with me.

Finally, I met Dr. Smith, the “lopping off” surgeon, a humorless, expressionless, android-like man. He promised me he would try to do a “nipple sparing” mastectomy but there was no guarantee of success. The nipple could die later and would have to be removed. I had to agree to the surgery, sobbing uncontrollably the whole time. I had no choice

The next challenge was scheduling the two doctors. Dr. Lee promised he might be able to insert the implant without the additional need for expanders if I would be willing to delay the reconstruction for seven days after breast removal. The thought of waking up to a see my chest flat was almost unbearable to me. But I acquiesced because expanders take weeks to work and require multiple doctors’ visits and additional surgery. I just had to grit my teeth and bear it. I had no choice.

The 7 days waiting period gives the blood vessels a change to reconnect. But the next time both doctors were available was Sept. 10^th and Sept 17^th. That was a month away! I was freaking out! Did they not understand how long it had been since I had been diagnosed? They were sorry that I did not come to them sooner, but they had other patients who needed treatment, too. This was the soonest they could get me in. I reluctantly agreed. I had no choice.

By now I was under the care of a psychiatrist, Dr. Oh, in Daytona. Dr. Oh is a Japanese gentleman, very professional, very reserved. I was extremely lucky to get in to see him. He asked me questions, he listened and took notes. He diagnosed me with anxiety disorder. He adjusted my medications and got me on the right track. I called him when I felt I needed changes and he took care of it. I never knew I needed a psychiatrist, but I do now. I have no choice.

The next time I visited Dr. Lee’s office I met with his assistant to sign the consent forms. She was very thorough and took her time explaining all the horrible things that can happen to me, and I believed would. She had a laundry list of at least 24 items, including, infection, bleeding, asymmetry, loss of feeling, numbness, loss of hair, etc. etc. At the end she explained that Dr. Lee would not know until the morning of the surgery if he would be inserting expanders or the implant. This was the first I had heard that! She explained that he had to see what he had to work with after the mastectomy and make that decision on the spot.

In the end I will be given the same procedure that the doctor in Daytona recommended and with the same results. I did not need to come to MD Anderson in Orlando to get expanders and implants; any Joe Blow in Hoboken could have done that. Shaking, disheartened, and sad I signed the consent forms. I had no choice.

I understand they have to go over every contingency, for legal reasons. I understand we live in a litigious society. But, when you are dealing with a woman with anxiety disorder, wouldn’t it be a good idea to insert a word of encouragement? Something like,” Now these things are rare and unlikely to happen.” Or maybe have Dr. Lee pop in and say something like, “Even though you will never look the same again, the majority of our patients are satisfied with their results. We will do the very best we can for you, Amy, I promise. This is the best decision you could have made. We are the best modern science has to offer in the world at this time.”

But he did not. I went home and had one of the worst panic attacks I have had in a long time. I had no choice.

One thing I can promise you, dear readers, is that I will NEVER, EVER go in for a screening mammogram again as long as I live. Or a colonoscopy. I never want to go through the emotional agony this experience has cost me. If I ever do have a recurrence of cancer, I don’t want to know about it. I am too old to go through any kind of “treatment”. There would be no point and I could not endure it.  If I ever contract any form of cancer again, I will let it run its natural course and kill me. I do have a choice.