Opinions upon opinions
We spent all of today in a doctor’s office, except for lunch time.
We got to my surgeon’s office just before 9 a.m. We had to wait a while to get in and the moment we sat down in the exam room, the surgeon peeked in. He apologized, said he was just called into surgery. He asked us to go take a drive or a walk and his office would call us when he got back. He wanted to have a good long talk with us.
I had decided I wanted a second opinion and knew I needed my records for that. Since my records were in the same building, we headed over to the office. Along the way, we ran into our neighbors. The wife told us if we needed a second opinion, that Dr. Schmidt from St. Vincent’s was very good. I already had called someone that another friend had told me about, but I made a mental note of this guy in case I wanted another opinion.
We got the pathology reports, then had to walk to another area to wait for the mammogram. It took quite a long time for the films to be brought to us — like 30-45 minutes. But we didn’t mind because we were absorbed in the pathology reports, comparing information to that shown in two books we had brought.
It didn’t take long for me to figure out what “went wrong” with the surgery. My tumor is poorly differentiated, which is bad news. That means cancer cells are in little, microscopic strings emanating from the main tumor, which is not a nice, neat little clump like most breast cancer tumors. So, it was impossible for the surgeon to know where to cut. Impossible to get clear margins.
We finally got the mammogram and were called back to the surgeon’s office. He sat and told us everything we had already figured out during the delay: that the tumor was poorly differentiated and aggressive. One of the cancer “strands” was dissected in surgery, meaning they could tell under a microscope that some of it was left behind. Other cancer cells showed up in the margins. So, a second surgery is essential.
He talked about the pros and cons of either surgery. One is called a “re-excision,” which basically means they go into surgery site and take out a margin around all of the edges. The other, of course, is a mastectomy.
The problem with a re-excision is that they have already removed a large amount of tissue and will have to go around all of the edges of that large area. He said a re-excision will remove tissue all the way up under my nipple. In the back, they have already take out almost to the chest wall and will just finish that job. He said I will have to have radiation and between the major removal of tissue and the damage from radiation, he doubts the end results will be very nice. A re-excision eliminates my potential to breastfeed from that side in the future, as they will have to cut through all of the milk duct connections to my nipple.
He said only about 15% of patients have a re-excision. For many, there isn’t enough breast left for it to be an option, so a mastectomy is the only option when margins aren’t clear. Most patients are older, too, and after hearing this news are willing to part with their breast.
If the margins are not clear on re-excision, a mastectomy will be required.
However, for me, this is not a simple matter. I’m 34 years old. If we can get rid of this little cancer problem, I have a life expectancy of another 50+ years. I want my boob. It’s important to me. It’s not the cosmetics of it; it’s the issue with removing an important part of my body. It’s removing a part of me that helps define my sexuality. It fed my baby. I want to keep it.
I’ll be getting chemo as well as radiation. This isn’t confirmed until I talk to the oncologist, but all the factors are pointing that way — the surgeon confirmed this. Reconstruction after a mastectomy won’t be possible until after radiation and chemo — probably 18 months later.
We left the doctor’s office and I felt in shock. It was sinking in that this was not the surgeon’s fault; nothing went wrong except my body decided to be hospitable to a very ugly type of cancer.
We headed into Indianapolis, with the hope we could show up on the doorstep of the second surgeon and work ourselves in the door. They were on lunch, so I couldn’t get through to the office. We had my info, though, and could at least leave it, as they had requested. In a phone call to them yesterday, they said to send the info and they would schedule me early next week.
We stopped at Kinko’s and made copies. We were close to the Georgetown Market, so we stopped there for lunch and to talk to the vitamin lady. My friend who is doing a nutritional therapy for her cancer advised me to get tumeric, so I picked it up. I discussed breast cancer with the vitamin lady and she gave me some resources, including telling me about The Wellness Community. They sound awesome.
While there, the “second opinion” doctor’s office called to say they could get us in right away. So, we jumped in the car and headed up. His office was in Community North Hospital, on the northeast side. This guy invented a needle biopsy machine. My friend who went to him tells me it’s what was used on me for the biopsy. We were sooooo grateful he was working us in today.
We waited in his office for almost two hours. We have figured out ways to kill time. I programmed important numbers in my cell phone. Troy made numerous calls to insurance, work, etc., on his. We talked. We joked around. It wasn’t a bad way to pass the time.
We finally got in. Liked the guy. Hated to hear his opinion. He asserted that I SHOULD have a mastectomy. He talked about this type of cancer and how it is very likely all through the breast tissue. He also made a very good case that I should have a breast MRI. He said this is not a “standard of care” diagnostic tool, but he finds them very helpful. If there are any signs of cancer in the left side, I will need biopsies on those tissues as well. Also, I need a genetic test (which was ordered by my oncologist two weeks ago) to find out if I have certain genetic markers. If I do, that means I’m extremely likely to get cancer in my second breast and in my ovaries!
I can’t tell you how sad this news makes me and Troy. I feel like I’ve been hit by a truck with no physical evidence. I can’t think. I can’t make decisions. I’m freaked. I’m sad. I’m tired. I hurt all over, even in my heart.