When people are diagnosed with breast cancer, the first thing they usually do is see a surgeon. This kind of rocked my world. I need answers! About my cancer. I want to speak to a cancer specialist, asap. An oncologist. Not a surgeon. But this is the order of things, this is the way its done. An oncologist won’t even see you without notes from a surgeon. So I went along.
I guess at this point most people in my position would be deciding and getting opinions on whether they need a lumpectomy, a partial mastectomy or a double mastectomy. For me, I knew what I wanted no matter what. It was crystal clear.
I wanted a double mastectomy with reconstruction, direct to implant if possible. Because of my BRCA status, I had been researching these surgeries for quite awhile. Now, with my cancer diagnosis, I was more than ready. I even knew the right breast surgeon and plastic surgeon in town to do the job. They both had excellent reputations. Even though I had never met either one of them, I was pretty much ready to sign the dotted line and get this thing done. I felt ready to get my breasts removed and the cancer out of my body ASAP. I was lucky enough to get a quick appointment with the breast surgeon. Here is what happened at that meeting:
-I felt that he scolded me and was shaking his head the whole time in disgust that I did not do the preventative surgery earlier so I would not end up in this position. Yes, he is right. But not really what I need to hear right now! I just got a cancer diagnosis, there is no turning back…right? It bothered me that he kept talking about what could have been.
-He told me that my cancer is a Clinical Stage 1. This staging is based on what they know now, from the biopsy. It could change based on what they might find during surgery.
-He said that lymph nodes would be taken out during the surgery to see if the cancer had spread to them, but that “statistically speaking”, there should not be lymph node involvement. He said that he was not expecting to find it in the lymph nodes.
-He said if they find in the lymph nodes I would need radiation.
-I asked about radiation on top of an implant…”Well, thats not ideal”, he said. “It will make the breast harder and not symmetrical”. When I asked if the radiation could still be as effective with an implant there, he said it could. I asked if we could change the course of action based on the findings of the lymph nodes. “Nope,” he said. “If you sign on the dotted line that you want reconstruction, straight to implants and then go under, that is what you are going to get”.
-My cancer is ER positive, which he said is good.
-My cancer is PR negative, which he said is not good. And “rare” for this type of cancer, making it “more agressive”.
-My HER status (which still had not come back from pathology) would be very important. If HER is positive, I would “probably need chemo”. If negative, would probably not need chemo.
-I asked about direct to implant, nipple sparing, etc…and he said it all could be done but didn’t seem to want to go into too much detail at that point.
-He gave me numbers for an oncologist, plastic surgeon and radiation oncologist and said they would be calling me to set up appointments.
-They penciled us in for the first available surgery. 10 weeks away!
When we left the appointment, my head was spinning and I didn’t know what to think. Did I really want to wait 10 weeks? Do I trust this guy about it being stage 1 and probably not in the lymph nodes? He isn’t a cancer specialist, right?
I wanted to talk to an oncologist ASAP. And I knew I wanted a second opinion.