I make it a point to know everything, and I mean everything, about everything that is happening to me. Let me be clear, only things that are happening to me do I know everything about. If you asked me about politics, world events, or who the contestants are on Dancing with the Stars, I'd give you a blank stare. But if I'm going through it, I get a damn PhD.When I was trying to conceive for almost a year, I read everything I could about fertility and how to get pregnant. I could have been a fertility specialist. When I was pregnant, I knew everything there was to know about pregnancy. I read tons of books, spent hours on the internet, joined groups of expectant mothers and learned a lot from them as well. I could have been an OBGYN. This summer when I had a board meeting with the 20+ medical providers caring for my dad, the head of the ICU said "What is your professional background? You have so much medical knowledge." I told him I graduated with a degree in hypochondria at the school of WebMD. Needless to say, you can bet your ass that when I learned I had breast cancer, I did more research in two months than I ever did in 4 years of college. I am fairly certain that I have reached the end of the internet in regards to breast cancer. There are pros and cons to this. The pros are that I know what I'm dealing with. The cons are that I know what I'm dealing with. There are women in my survivor group that are in the early stages of their diagnosis and have said they prefer not to know the details of their cancer, their stats, their prognosis. Ignorance is complete bliss. I know this. But every time I try to ignore a burning question that's in my mind, it eats at me, it keeps me awake, and I have to do research.
So right now I feel like I know this cancer pretty well. This cancer that's probably been in my body, unknowingly, for 10 years. I've met with my surgeons, oncology, and radiation oncology. They all have had a meeting, called "The Tumor Board", which sounds creepy and disgusting to me, to discuss my case along with the pathologists. Here is what I know from all of these people:
1. My tumor margins are clear! There was originally some question about this but it looks like when the plastic surgeon finished up his job after putting the tissue expanders in, he took more skin, and that tested negative for any cancer. So the good news here is that I wouldn't have to go in for more surgery to get better margins around the incision site.
2. There were microscopic cells in my sentinel lymph node. This was the lymph node declared negative in the OR but I was prepared for this kind of thing, because when they get into more detailed testing, they often find small amounts of cancer cells. A micromet is considered to be between 0.2mm and 2.0 mm of cancer. My question for the tumor board was how big was the micromet exactly. The answer is 0.3mm. Had it come in under 0.2mm, it would be considered an isolated tumor cell which is considered node negative. Unfortunately micromets count as lymph node positive but there have been studies to show there isn't much of a difference in prognosis between having them and being lymph node negative. The other 4 lymph nodes removed were negative so there is no need to go in and remove more, the tumor board decided. So while I was hoping for completely negative nodes, this really isn't that bad.
3. My tumor really was 4.5 cm. What. The. Hell? Tests going into surgery (ultrasound and doctor's manipulation) estimated it at 2-2.5cm so this was one giant surprise. It sure didn't feel that large to me. This is the most depressing thing about my diagnosis so far. Larger tumors have a worse prognosis, especially when they are grade 3 (aggressive) like mine. Guilt comes into play here too. If it were that big, why didn't I find it sooner? I feel a lot of responsibility in regards to this matter. I thought I was familiar with my body but I guess I really wasn't.
4. There was no lymphovascular invasion identified in pathology. This is really good! It means that, in the blood and lymphatic channels in the tumor sample, they did not detect any cancer cells! There are other ways for cancer to spread throughout the body other than the lymph nodes and the blood stream is one of them. So this not being identified is a very good thing. It is incredibly shocking to me that a tumor of my size and grade did not have this kind of invasion and only had micromets to 1 lymph node. But I choose to trust pathology and am going to assume my tumor enjoyed being fat and happy in my breast and didn't want to move on elsewhere.
5. My stage is 2B. This is still considered to be early stage breast cancer. Because of my age, they will throw everything at me since I have a lot more years to live than the average 60 year old diagnosed with breast cancer.
There are all kinds of tools on the internet to predict survival rates at 5, 10, 15 years post diagnosis for breast cancer patients. Some are limited to health care professionals only. I'm not going to lie, according to the breast cancer predictor tool used by oncologists all over the country, I am known as a health care professional (in training of course, so the tale wasn't too tall). These tools vary with how detailed you can get about your specific case. The lovely bar graph my oncologist gave me about my 10 year survival made me want to throw up. I think that was part of her plan to get me to agree to all of the therapies they were recommending, so that the green (good) part of my bar graph would grow. A more detailed tool online called Cancer Math, gives me a more favorable prognosis after I do all the required therapies at 15 years after diagnosis (85% 15 year survival rate). I'm so focused on these statistics and numbers despite the fact that statistics was my least favorite class in college and I had to take it twice. Eric reminds me that my stats are either 100% or 0%, I can't be 85% alive. I either survive this cancer and live a normal life span or I don't. I am sure as hell going to make sure I do everything I can to fall into the 100% survival category.
That said, breast cancer has no cure. I will never be considered cured, especially since I have estrogen positive breast cancer which can recur up to decades later. Some doctors will tell a breast cancer patient that if they die of a stroke at age 85, then they were considered cured. This is the hardest piece of information that breast cancer patients have to live with and many suffer from post traumatic stress disorder because of it. The best that you hope for is to be considered NED...no evidence of disease. I hope and pray every day that these aggressive, poisonous treatments will keep me NED until I'm an old lady!
Today I received my Oncotype Dx score! A company called Genomic Health does an in depth analysis of 21 genes that make up your cancerous tumor and gives you a score. The score puts you into a category of low (no benefit from chemo), intermediate (unsure of chemo benefit), and high risk (your ass better do some chemo). The scores are from 1-100 but from everything I've read, people rarely score over the 40's or 50's. I was sitting in my appointment today with the research nurse, signing my body over to science, when I saw that my nurse from the breast center was calling. I knew it was about the Oncotype score so I was dying inside. Luckily, the breast center nurse checked the computer and sent a text to my other nurse letting her know my score. 23!! So I was thrilled because I was prepared for them to tell me that I'm the first person they've ever seen with a score of 82. So what this means is that 23 is in the low end of the intermediate category and they don't really know what my benefit will be from chemo. It does say that based on this score, I have an average distant recurrence rate of 15% (range between 11-18%) after taking 5 years of tamoxifen as my only therapy after surgery. Because I'm in that gray "intermediate" zone they can't tell me how much more chemo will reduce this risk and it's up to me and my providers to make the decision. Well, we've already decided I'm getting the works, so I have hope that the chemo and radiation treatments will help bring this score down to below a 10% chance of distant recurrence. My tumor is a grade 3 which means it was rapidly dividing and chemo works best on rapidly dividing cells so I like to think chemo is going to kick some cancer butt! Other good news is that despite all of the aggressive factors about my cancer, the score came back on the lower side which ultimately means that I should get a good deal of benefit out of taking hormonal therapy. The standard is 5 years but my oncologist already told me she will give it to me for 10 years, as recent studies have shown additional benefit when taken longer. Plus there is always the option of ovarian suppression or removal to reduce my estrogen levels even more and then, since I will be considered post menopausal, I can switch to an aromatase inhibitor which is even more effective than tamoxifen. So anyway, I'm feeling pretty good about my score, because it was based on MY cancer and tailored to me, not some application on the computer where I plug in a few numbers. I'm also now feeling good about my choices to do chemo and radiation before I start my hormone therapy so that I can be sure I'm giving it all that they've got.
Today I went for an EKG and an echocardiogram. Both were uneventful. I also got a CBC and comprehensive metabolic panel done and hopefully the results of all of these tests are normal so I am cleared for my first "infusion" next Thursday!
Tomorrow morning I go for my port placement. For some reason this scares me more than my bilateral mastectomy. I guess because for some reason I looked at a bilateral mastectomy as a larger scale mole removal which was my only medical procedure reference to date. They were basically going to dig out those boobs and sew them back up. Easy peasy. I'm a little freaked out because tomorrow I will not be under general anesthesia and they will be placing this thing under my skin and jamming it into an artery. It just seems so invasive. However, they did say that I will be placed under conscious sedation, or "Twilight" anesthesia. I don't know what that means but I really hope Edward and Jacob are there. This will take place tomorrow around 8 am. Prayers are appreciated for a smooth procedure!!
Oh and I learned how to put pictures in my blog which is like super advanced computer programming stuff in my mind so here are a few pictures of me wigging out this week.
An expensive "real hair" wig:
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