Hi, my name is Amy and I have breast cancer
A little bit of history, and the details first. In mid February I went to my GP, because during a self exam I found a little lump. I thought for sure I was being paranoid, but my GP referred me to Cincinnati Breast Surgeons for a full work up. My first mammogram and ultrasound were followed by my surgeon showing me images and telling me I needed a biopsy ASAP...that afternoon they did it. Monday night my surgeon called me with the news- stage I breast cancer. Little invasive tumor (~1.5 cm), lots of non-invasive but abnormal cells (DCIS), lymph nodes look good.
Here is my first life lesson and one of the big reasons I want to share my story- please do your self exams (and screenings!), and if anything feels funny see your GP. You could be right, and it's much better to catch this earlier. Because while the tumor is not a ferrari, it's also not a turtle. And waiting would have been bad.
Here is my second life lesson. My second thought after diagnosis was how relieved and thankful I am to have health insurance. I am lucky. And I am beyond pissed off at the idea that health insurance is not a basic human right that we should do everything possible to make affordable. I've pretty much always felt this way, but now it's personal. More on this later.
So here I am, just married, and with this diagnosis in the middle of the semester. Pretty much up until spring break I had two goals (1) do everything I needed to fight this (2) get to spring break (I later realized this was so I had five minutes to process). There was imaging and tests. One test was for inherited mutations to genes that lead to an increase in cancer, you might be familiar with BRCA1 and 2, those were on the panel. Incidentally, requiring genetic testing is bull shit (more on that later). Anywho, I'm a microbiologist by training who has done a fair amount of molecular genetics, so this was fascinating to me, even after spitting like 10 ml into a sample cup. Dude. The second test was to type the tumor itself (oncotype is the terms), specifically the amount of RNA being produced from genes associated with cancer. The more RNA being made, the more the gene was "on" and the worse the little bastard is. Fascinating! And an important way to get more information for treatment.
So, before test results came in, I was looking at a single mastectomy. Cool. Let's cut that thing off and be on with our lives. Maybe both for symmetry. Maybe do some reconstruction. All of these are super personal decisions, obviously. I don't think we know what we will really do until faced with them, but I decided against reconstruction. One, there are multiple surgeries required and two, I had a visceral reaction to a prosthetic placed inside me that could really only be fixed or removed by a surgeon for something I wasn't sure I even wanted. I love "the girls" but I don't need them. And well, I always wanted to be an A cup....or a AAA. And prosthetics mean I could be an A or B or a C depending on the day. I love having options. And I am really thankful for the friends and family willing to chat about all that- give their opinions and reasons and such. I don't think I've mentioned how amazing my friends and family have been and continue to be. Damn. I'm tearing up just thinking about it. More on that later too. (I think I have like three more posts now to do).
Ok, so then the oncotype (measure of how bad the tumor is) comes back on the highest end of intermediate, and we have to consider chemotherapy. In the past chemotherapy was determined by pathology, lymph involvement, size of tumor. Based on that I was a "surgery, no chemo, hormonr therapy" treatment plan. Did I mention the tumor was estrogen receptor positive, progesterone positive, and HER-2 negative. That's actually a good thing. But I digress.. with the advent of this new tech (the oncotpye), we can use the gene expression of the tumor itself to help better target chemo. Because let's be honest, it's poison. And if you don't have to poison your healthy cells to get at the cancer you don't want to and it ain;t good for you. But if poison is going to decrease the chances of recurrence and increase the probability of survival. Yeah, I'm all in as it turns out my prognosis is better with chemo. If you ever do this get second opinions. Everyone agrees that chemo is necessary and the basics, but I was much more comfortable with the second medical oncologist's preparation, conversation and plan for care. Plus, the nurses were nicer, and I mean that's key. Ask my mom. :-) Did I mention my mom has been with me at every doctor's appointment? Yeah. Every. One. And she judged them and only found one wanting :-) Love ya mom.
So, they're going to put a port in me Monday so that drug delivery doesn't collapse my veins. I'm in. Then I start four 3 week cycles of T-C therapy. This is taxotere and cytoxan. Ironically, the day after I was told chemo was likely in my future I was teaching a case study taxol and breast cancer. Ha! Chemo starts Wednesday. I am so relieved to be starting therapy, even if it's going to be...interesting. That's the word :-) I'm going to try to keep this updated so friends and family can also stay updated.
I made it to spring break, and was able to process a lot of the implications. Thanks to my wonderful sister and friends for helping that happen (they don't know they did). Thanks to my amazing husband for getting me through that part and listening to some insanity. And thinking about things and sharing them. I needed a little catharsis, and now I'm ready for the next step.
Here is my first life lesson and one of the big reasons I want to share my story- please do your self exams (and screenings!), and if anything feels funny see your GP. You could be right, and it's much better to catch this earlier. Because while the tumor is not a ferrari, it's also not a turtle. And waiting would have been bad.
Here is my second life lesson. My second thought after diagnosis was how relieved and thankful I am to have health insurance. I am lucky. And I am beyond pissed off at the idea that health insurance is not a basic human right that we should do everything possible to make affordable. I've pretty much always felt this way, but now it's personal. More on this later.
So here I am, just married, and with this diagnosis in the middle of the semester. Pretty much up until spring break I had two goals (1) do everything I needed to fight this (2) get to spring break (I later realized this was so I had five minutes to process). There was imaging and tests. One test was for inherited mutations to genes that lead to an increase in cancer, you might be familiar with BRCA1 and 2, those were on the panel. Incidentally, requiring genetic testing is bull shit (more on that later). Anywho, I'm a microbiologist by training who has done a fair amount of molecular genetics, so this was fascinating to me, even after spitting like 10 ml into a sample cup. Dude. The second test was to type the tumor itself (oncotype is the terms), specifically the amount of RNA being produced from genes associated with cancer. The more RNA being made, the more the gene was "on" and the worse the little bastard is. Fascinating! And an important way to get more information for treatment.
So, before test results came in, I was looking at a single mastectomy. Cool. Let's cut that thing off and be on with our lives. Maybe both for symmetry. Maybe do some reconstruction. All of these are super personal decisions, obviously. I don't think we know what we will really do until faced with them, but I decided against reconstruction. One, there are multiple surgeries required and two, I had a visceral reaction to a prosthetic placed inside me that could really only be fixed or removed by a surgeon for something I wasn't sure I even wanted. I love "the girls" but I don't need them. And well, I always wanted to be an A cup....or a AAA. And prosthetics mean I could be an A or B or a C depending on the day. I love having options. And I am really thankful for the friends and family willing to chat about all that- give their opinions and reasons and such. I don't think I've mentioned how amazing my friends and family have been and continue to be. Damn. I'm tearing up just thinking about it. More on that later too. (I think I have like three more posts now to do).
Ok, so then the oncotype (measure of how bad the tumor is) comes back on the highest end of intermediate, and we have to consider chemotherapy. In the past chemotherapy was determined by pathology, lymph involvement, size of tumor. Based on that I was a "surgery, no chemo, hormonr therapy" treatment plan. Did I mention the tumor was estrogen receptor positive, progesterone positive, and HER-2 negative. That's actually a good thing. But I digress.. with the advent of this new tech (the oncotpye), we can use the gene expression of the tumor itself to help better target chemo. Because let's be honest, it's poison. And if you don't have to poison your healthy cells to get at the cancer you don't want to and it ain;t good for you. But if poison is going to decrease the chances of recurrence and increase the probability of survival. Yeah, I'm all in as it turns out my prognosis is better with chemo. If you ever do this get second opinions. Everyone agrees that chemo is necessary and the basics, but I was much more comfortable with the second medical oncologist's preparation, conversation and plan for care. Plus, the nurses were nicer, and I mean that's key. Ask my mom. :-) Did I mention my mom has been with me at every doctor's appointment? Yeah. Every. One. And she judged them and only found one wanting :-) Love ya mom.
So, they're going to put a port in me Monday so that drug delivery doesn't collapse my veins. I'm in. Then I start four 3 week cycles of T-C therapy. This is taxotere and cytoxan. Ironically, the day after I was told chemo was likely in my future I was teaching a case study taxol and breast cancer. Ha! Chemo starts Wednesday. I am so relieved to be starting therapy, even if it's going to be...interesting. That's the word :-) I'm going to try to keep this updated so friends and family can also stay updated.
I made it to spring break, and was able to process a lot of the implications. Thanks to my wonderful sister and friends for helping that happen (they don't know they did). Thanks to my amazing husband for getting me through that part and listening to some insanity. And thinking about things and sharing them. I needed a little catharsis, and now I'm ready for the next step.
Comments