My parents, Eric, and my friend Stephanie all came, and I was super impressed with Dr. U. He had no notes and came in stating all of my past history, and even knew I had a 3 year old daughter. I also loved his witty sense of humor and he never skipped a beat. For example, at one point he said that the chances of this happening to a mastectomy patient are really rare, so I said, "I'm such a freak." He said, "Well, don't tell anyone, but that's what I call you outside of this room." My mom even said she could see us being friends.
He explained everything and said the goal was for us to be able to teach the class to someone else. So here it goes, I'm going to try. First we looked at the pictures from the PET Scan and saw there was nothing significant found there. So then we looked at the pictures of my MRI. Unfortunately, they found another spot and a lymph node that was larger than normal. He said I would have to get an ultrasound, and if they felt it necessary, would biopsy both. More on that later...
Then he explained that I needed to do surgery within the next 10 days to remove the lump(s). The results from the biopsies would determine whether I needed to just do the lumps or if we also needed to remove lymph nodes. Here is more information on lymph node removal and what that means.
The next step would be to analyze the tumors after removal with a test called oncotype. It analyzes the genes in the tumor and based upon the score, will determine whether chemotherapy would be beneficial or not. If the test scores low, then chemotherapy is not proven to be beneficial and we wouldn't go with that treatment. If the test scores high, then the chance of recurrence is also high, and chemotherapy would reduce that risk by 40%, making it beneficial. If I score in the middle though, we would have to have a conversation because there isn't enough statistical data to support chemotherapy is beneficial or not.
The next step, whether chemotherapy is in the plan or not, would be a combination of radiation and tamoxifen. My cancer is estrogen-receptor-positive, and tamoxifen helps reduce the recurrence. It's a pill taken once a day for five years. Here are the side-effects.
However, there's a caveat to that plan. In the past I did genetic testing for the BRCA I and II gene, and it came back negative. But he explained that whenever a young woman with no family history gets breast cancer, we need to look at gene mutations. So I need to do a genetic testing panel to test for other mutations. He's especially interested in TP53 or Li Fraumeni. That particular gene mutation makes you susceptible to a bunch of other soft tissue cancers (brain tumors, bone cancer, etc.). So if that came back positive, they would make sure to keep an eye out and try to prevent those other cancers from happening. Additionally, radiation may actually cause those cancers to get going, so they would want to avoid radiation as a treatment.
That's a LOT of information. I am a visual person, so I asked him to draw a visual flow chart of what happens in each situation. He was kind enough to oblige.
So, that was a very educational meeting. After he left, the genetics counselor came in and went over the genetic portion. I got blood drawn for the test and I will receive those results in 2-3 weeks.
Then it was off to my breast surgeon. That meeting was a lot faster and was more or less a reiteration of what we had just heard. She did say that because I already had implants, they would have to do surgery at the top of my breast where my tumors are located. Not much I can do about it, but if it's between having a visible scar on my chest or being alive, I choose the scar. I was set up to see my plastic surgeon on Thursday though so he can take a look and see if he needs to order any materials. Because my muscle acts as a scaffold for my implant, if they take too much of the muscle, he needs to replace it with other material to replace it.
After that, they sent me down to get an ultrasound again. The same ultrasound tech and nurses from a few weeks ago were there and remembered me. I was hoping they wouldn't see anything significant and send me on my way. That was not the case. Eventually, the radiologist came in and he and the ultrasound tech studied the screen for a good 10 minutes. Then it was decided I would be biopsied both in the other lump and a lymph node. In rolled the cart.
I laid on that table for a good hour and a half while they searched, and marked, and measured from the marks.
I'll admit, I felt like I was in a live version of Grey's Anatomy. The ultrasound tech and the radiologist didn't seem like huge fans of each other, and they couldn't really get on the same page. That made me nervous. I laid there and just kept thinking to myself, "Lay still, lay still, lay still, don't move." I knew at that point I wasn't a person. It was my lumps and lymph nodes that mattered, and it was like they were on a hunt for them. My job was to lay perfectly still to make it as easy as possible for them.
After they finished, he said, "Ok, we're done." He took a deep breath and said, "That was hard, but you went through the hardest part. I really hope that these come back benign." Yeah, me too.
I walked out feeling sore and frustrated. I didn't sign up for this. It wasn't part of the plan for the day. I didn't have time to mentally prepare. Afterwards, my dad and Eric wanted to go to lunch. It was 1:00 and nobody had eaten since our day started at 8:30. As we walked out to the parking lot, Eric said to me, "You should eat something healthy." I snapped back at him, "Can you not tell me what to do?" He said, "We just care about you and want what's best for you." I snapped again, "Well, I get that, but I have a lot of people telling me what to do and I'd appreciate it if I could just order what I want for lunch if that's ok with you."
When we got to the restaurant, I apologized and tried to explain that I just feel out of control and that so much is being decided for me. I just didn't want to be directed to do yet another thing. Needless to say, this is how I felt at the end of the day:
The lesson I learned was that I need to suppress my urge to plan and know the timeline. Dr. U said that with these things you have to take it step by step. It's impossible to plan the long-term. So, that's my personal goal now. To take things day by day and live in the present. That was something I was working on anyway before all of this, but it's a lesson I'm having to learn at a faster rate now. I didn't get my biopsy results today, so tomorrow I should get the call. I also have to see my plastic surgeon tomorrow. But, that's tomorrow. Live in the present.
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