Before I go into detail about my postoperative appointment at Stanford, let me explain the one I had here in town on Monday...My mom, dad, and I went into a check-up appt with my oncologist here. He didn't have the final pathology report from my surgery, but had the preliminary. He was extremely happy to express how well my body had taken to the chemo and how they couldn't have asked for better results from my treatment plan. Obviously my family and I were extremely happy to hear that, I was trying not to get my hopes up and wanted to get the final report before spreading the great news. I expected to go down to Stanford and hear that I was close to being "cancer free", but that wasn't the case at all.
April 11, 2012-9 days after my mastectomy:
After we landed in San Carlos, Mike and his wife Beth drove my dad and I to my appointment where we checked-in and proceeded to the usual wait. The docs are typically at least an hour behind schedule. Finally the resident for my surgeon came in and asked if we had met with my oncologist yet and received the pathology report, because they weren't technically supposed to see me until after my oncologist...I tried to be sneaky by saying we had met with my other oncologist and got the results (hoping this would get my surgeon in sooner). The resident replied, "Oh, so you know about the HER2/neu.?." I'm pretty sure the expression on my face answered that question, I had no idea what she was talking about. Panic began to spread throughout my body, I was really really really hoping and expecting ONLY great news.
If I could wish for one thing it would be to hear from my doctor, "You're cancer free!". I have a fear and I think the reality of it is, is that I will never hear that. I was hoping this appointment was heading in that direction, but of course it wasn't. When I was first diagnosed we had a bone scare and my doc prepared me by letting me know if the cancer was in fact in my bones I would have 5-10 years to live. We never got a final answer and we never will on whether or not that one small spot on my right pelvic bone was cancer. We did repeat the scan half way through chemo and the spot had disappeared, and the second bone scan was also clear...but I was also informed that there can be cells so microscopic that they are too small to be seen on the scan, making the scan not 100%. The toughest lesson I've learned through this process is that not everything is black and white and some questions will never be answered.
Back to my post-op appointment story...
Eventually my surgeon came in. I immediately jumped into my cheery, happy, fun attitude, as if I wasn't worried about the news I was about to hear. He asked how things had been going, he examined, we joked around, and I begged for him to remove my nasty drains. He assured me that the one drain that was only draining 5-10ml a day was ready, but the one that was still draining 30ml was a little more risky. I was so uncomfortable that the resident numbed me, cut the stitches off, and pulled the tubes right out of me! Then came the serious talk. Because I am not a doctor and I definitely don't understand all the terms and vocabulary that comes along with cancer I can only try my best to explain what the doc told me. He went into great detail about the pathology report. About how originally I tested HER2/neu negative (You will have to research HER2, I honestly can't explain it.) but the report came back with some of my tissue being positive. This results in me being both positive and negative for this protein HER2/neu. He seemed very concerned about my case, although they've seen it before it's very rare and they're not completely sure on what the next treatment plan would entail. I asked a million questions including whether it was possible to have incorrect test results, but he ensured me it was correct. He explained that about 90% of the cancer was gone. We discussed the possibility of that the remaining 10% could be HER2 and the chemo that was administered to me doesn't treat HER2, and that they normally treat positive patients with the drug herceptin for one year every three weeks. The good thing about herceptin is that it doesn't have the terrible side effects that chemo does, and I should be able to maintain a normal lifestyle. The shitty thing is that it's another year of my life!!!!!! I know that seems silly to complain about a year when it involves my life or death, but I went into this appointment thinking I was on track to being cancer free very soon. I asked him why my surgery had taken so long and he said I was more of a tough case and was a case where he really had to use all 30 years of experience and figure out how many lymph nodes needed to be removed. Overall he questioned his actions, but thinks he made the right decision. He explained they did a lot of waiting on the pathology reports during surgery, and how the plastic surgery team came in and they had to push them back at least an hour. I think I was under for about 10 hours, when I should have been done in 6. I also asked how many nodes were taken and he wasn't able to give me an answer because they were unable to get an accurate count. My body had such a great reaction to chemo that all my nodes had shrunk and some had shrunk into my tissue making it impossible to count how many were really taken.
Another lesson I've learned about being a patient is you've got to act strong around your docs if you want to hear the reality of things. I love my surgeon because I feel like he gives it to me straight, because he knows I can handle it. Since this whole thing has started I've always wanted to know the worst case scenario, so I can prepare for the worst and hope for the best. That way whenever I received bad news I would be ready for it.
A few minutes later my female oncologist came in with her two residents. She's quite the talker. She began talking about how great things were looking and how well the chemo worked, how great the surgery went....blah, blah, blah, I already knew the good stuff, I wanted to know more about the recent discovery. She explained it in the most positive way she could about the HER2, but I was still fighting back my tears. After a long discussion she explained that they were going to send my rare case to this expert, Mike Press, down at USC and he should help figure what the next step is going to be. So hopefully in a couple weeks we will have some new results and treatment plan.
I guess the question I keep asking myself is if it's not a huge deal that I am positive HER2, then why don't they just treat me like a normal patient with one year of herceptin? I'm definitely not complaining that an expert will be looking at my case, but I just wonder if it's more serious then the doctors want to tell me or maybe there is more in the path report that needs further research that I don't know about.
I also asked again about my questionable pelvic bone. The question that we have been asking for months is whether we should radiate the small questionable spot, which of course depending on the doctor I got different answers, but overall they still aren't sure.
Let's hope for some good news in the near future. A huge thanks to Mike and Beth Paul for the flight down to Stanford!