I had my meet and greet with my Treatment Team (TT) on 6 Apr at 8:00am. I was scheduled to have baseline labs and meet the oncologist and then meet the surgeon later that day. My Mom and my very good friend Jessica came with me and stayed with me ALL day. You will understand how awesome they are when you hear how the day went.
To sum up the day very briefly - WAIT, explode with info, WAIT, anxiety, WAIT, info tidbit, WAIT, WAIT, anxiety, hunger, WAIT, explode with info, WAIT, WAIT, WAIT, hunger, frustration, info tidbit, HURRY, WAIT, test.
Duke is huge. And people come from everywhere to be seen at Duke. But, this means that the doctors spend time with each patient as necessary and everyone waits. Could be 5 minutes, could be 3 hours. They even use restaurant pagers to help. Whats terrible about the waiting is that the folks in the waiting room talk about their own cancer experience. This is scary to hear as a newly diagnosed person. I hate this part. Especially when they talk about dying. This happened the day of my biopsy too. It just makes everything scarier. I am going to start bringing my ipod.
Anywho - we first met with my oncologist, Dr. Kimberly Blackwell. She is awesome. She is blunt and frank and wants everything done stat. But at the same time totally cares about me as a person. I think I mentioned that I used to work with her when I worked for the Duke Clinical Research Institute (DCRI). She remembered me after a little reminiscing. This made it much more comfortable.
Dr. Blackwell will be the head of my TT. She likened it to the TT being a hand. She is thumb, then the fingers are the surgeon, radiologist, plastic surgeon, genetics / fertility. I may not have remembered that correctly, but you get the drift.
Dr. Blackwell will be managing treatment of me from head to toe and will be managing any chemo or hormonal treatment I might need. She specializes in breast cancer in young women so we talked a bit about maintaining fertility. Chemo can affect your fertility as can some of the treatments used to treat my kind of cancer (ER/PR+). She wants me to see a fertility specialist (she has one that she works with regularly) to discuss freezing some eggs. She told me that this is a good idea even if I'm not sure about kids so that I have a safety net. She said that there is much more success with freezing embryos vs. freezing eggs. That means I would need a donor, you know, of the sperm. Holy moses, I don't know how I feel about this.
She did not think that I needed any scans. She didn't feel like my cancer was anywhere else in my body. But she could tell that I was anxious and I told her my biggest fear was that it was somewhere else in my body. So she ordered the bone and CT scan for me.
She also wanted to make sure I didn't carry the mutated BRAC gene so she wanted me to see the genetic counselor. She made this happen the same day! Later the counselor said, something to the effect that Dr. Blackwell wants what she wants when she wants it. For this I am EXTREMELY grateful. I hate unnecessary waiting and it sounds like she does too.
She said that given the size of my cancer, I could probably have a lumpectomy (breast conserving surgery) so she wanted me to see the radiologist as radiation is required treatment for a lumpectomy. She made this happen that day!
Finally, she talked to me about the Oncotype. The Oncotype basically is a test that takes my tumor (either from my biopsy or the actual sample from my surgery) and spits out a magical number that tells Dr. Blackwell if chemotherapy would work for me. Personally, I think this is awesome, because if chemo is not going to benefit me, THANK YOU for not making me do it. The test can also help predict if my cancer will come back. Sounds like a little voodoo to me, but I trust my oncologist.
We didn't talk much about my treatments because she needs more information. I was OK with that, because I felt why ask questions about something you may not have to do?
Next I met with the genetic counselor. I talked about that in my previous post, so skipping that.
Then we waited forever to meet the radiologist, Dr. Janet Horton. This radiologist will be the one doing my radiation treatments not the radiologist who did my scans / biopsy. Radiation is always given last, so to be honest I didn't listen to a lot about what they said because I knew it didn't matter till much later in my game. I did hear, and remember, that they do worry about the effects of the radiation treatments on my heart. Especially because my cancer is on the left side (same side as heart). I mentioned my concern about the heart disease in my family. Basically it boils down that I need to be uber heart healthy (diet, exercise, etc) to counteract this. I also had to meet her resident first, which blew, because he was over eager and it was uncomfortable and awkward.
Finally, we waited about 2 hours to see the surgeon, Dr. John Olson. He was nice enough, but did not spend a lot of time with me. As with most men I am around, I turned into a giggly timid school girl. I need so much therapy. He basically said that he thought chemotherapy first would be best to try and shrink the tumor before cutting the fucker out*. He thought all I need is a lumpectomy. I was still not sure as I have talked to so many and read so much about women who have a lumpectomy and then the cancer comes back and they have to have a mastectomy anyway. I am not down with multiple surgeries. He wanted me to get an MRI to see if the cancer was in the other boob before he cut. I agreed. He also wanted me to get an ultrasound of my lymph nodes. He pulled some strings (aka called his buddy) and I was able to do this that afternoon.
*I rarely use the f word, but recently after my surgery was scheduled, I made the comment to some close friends that we were going to cut the fucker out, and well, I guess it stuck.
My follow up was to be with the surgeon once the MRI results were available which was 13 Apr. I will post about this later. But the long and short is - lumpectomy 22 Apr - chemo is still up in the air.
We finally left Duke around 5:30 that day. I really felt like I left there with no plan, a lot of information and MANY MANY MANY more unknowns. It was disappointing and exhausting. I came home and fell asleep. I felt like I had the flu the next day.
Mom and Jessica were so awesome. I was so happy to have Mom for comfort and Jess for comic relief. Made a very stressful day manageable.
THANK YOU TO JESSICA AND MOM for spending this day with me! SO GRATEFUL! and THANK YOU to Amanda, Nancy and Marg who made this appointment happen a whole week sooner for me!