Chemo, etc

I wrote the first post two weeks prior to surgery then realized I hadn't posted it yet, so threw it up the night before. There have been a lot of updates since then....some really good and some not so good. Let's get to the good stuff first.

In our first appointment with the surgeon she mentioned that it was unusual for a woman my age to get cancer without it being hereditary and I should get genetic testing done. We made an appointment with a genetic counselor and sat down to look at the family tree. She thought it was unlikely that I had the inherited susceptibility given my family history (no history of breast or ovarian cancer at a young age anywhere except me) but we submitted my blood for testing just in case. They send the blood off to a lab to study the DNA and see if there is a mutation on the BRCA1 or BRCA2 genes. http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA. If I had the mutation that they know of I would have what we all refer to as "the breast cancer gene". Results were due back in 4 weeks, which put us knowing results after surgery. This is significant because if you do test positive for the mutation then not only are your recurrence rates much higher, but you have a much higher chance of getting ovarian cancer too! With a positive result, mastectomy is the typical outcome (because of the recurrence rate). They also recommend you remove your ovaries once you are done having children. The good news is that the results came back early, the day before surgery, and I tested negative. So why did I get cancer at such a young age? Who knows. That test only tests for two mutations that they know about. There is so much that they don't know and many genes that have not been mapped yet.

The surgeon also recommended that I get an MRI so they could determine that the lump we found is the only thing in there. The reason for the MRI over a mammogram is because the mammogram did not show the cancer. Mammograms are not good tests for dense breasts, and because I am young AND breastfeeding, my breasts are very dense. Finding cancer on a dense breast mammogram is like "trying to find a snowman in a blizzard" the surgeon said. So the fact that I found this lump on my own is really really lucky. It would not show up on a mammogram. I did the MRI the week after my appointment with the surgeon. It was loud, clanky, annoying and extremely claustrophobic. You are laying face down for 45 minutes and are not allowed to move. We got the results back a few days later and they did not see any more cancer in the right breast than what we already know about, and did not see anything in the left breast. Great news. This was the determining factor to move forward with lumpectomy vs. Mastectomy.

Good news number three: the original pathology report had inconclusive results for Her2Neu. http://en.wikipedia.org/wiki/HER2/neu. This test tells us how aggressive the cancer is. They had to run more tests and the last test came back negative. Extremely good news! Also means I just avoided needing to take a drug called Herceptin.

The surgeon was also happy that I tested positive for the estrogen receptor. This means the cancer feeds off estrogen. She was happy about this because this makes me a candidate for taking a drug called Tamoxifen. This is a targeted drug that in essence blocks the estrogen from feeding the cancer, reducing your recurrence rates. They want me on this drug for 5 years after my treatments end.

Ok, onto the bad news. I am getting chemo. I had originally thought I would fight against this, but there are a few factors that convinced me otherwise. Since my cancer was a Nottingham grade 3 (the most likely to spread), they just don't know if it has gotten out. I could have one tiny cancer cell floating around in my bloodstream. They can't test for it, and is that really something I want to roll the dice on? The lumpectomy and radiation only treat a localized area. It does not treat your entire body. Chemo is a systemic treatment - it kills cancer everywhere. So if it had gotten out, chemo would kill it. Seems like a lot to go through when they don't know right? That is what I thought too...until the doctor showed me the numbers. With my exact cancer (2 cm lump, Nottingham grade 3, Her2Neu negative, estrogen receptor positive) I would have a 50% chance of recurrence with just lumpectomy and radiation. Adding in tamoxifen for 5 years lowers it to 35% chance. Add in chemo and it drops to a 15% chance for recurrence. The numbers are staggering. With other cancers and other treatments the combined drugs and treatments only shave off a few percentage points for recurrence. But with my combined therapy path, I am shaving off over 30 points. Yes, chemo will suck. But I'd rather suck it up for a few months then go through this again.

Ok, more bad news....with the chemo and the radiation and the tamoxifen for 5 years, the likelihood of having more children is pretty low. Some women freeze their eggs before getting chemo because chemo does not do good things for your fertility. And they do not want you to get pregnant when you are taking tamoxifen. Which puts me at 41 when this is all over. Not exactly baby making years. But we were not even sure if we were going to have more children anyway (plus I am fertile Myrtle) so we are just going to roll the dice. If at 41 we are ready for more kids and it happens, great. If not, we already won the lottery with Thomas. I never felt a void before having children and now my cup runneth over.

The big whammy for me with chemo is that they want me to start it as soon as I heal from surgery - and not more than 4 weeks after surgery. Living in SF without family, we just aren't in a situation where we could handle going through chemo alone. And to our wonderful SF friends who are like our family and are saying "but you won't be alone, we are here!" we just can't do that to you. We are moving at the end of this month to live with my parents in Oregon so they can help us take care me. There were too many scenarios that ran through my head when my doctor told me I had to get chemo.....who would come over at 3am to watch Thomas if I had a fever during chemo and Bob had to take me to the ER....who would help Bob if Thomas got sick and I was too sick to help? We are so lucky to be in a situation where my parents can take us in (and are actually pretty excited about it). And I'm very lucky that my company is supporting me, wants me to focus on getting better, and will let me come back when I am healthy and ready.

I know I keep saying how lucky I am and you are thinking - but you have cancer. Trust me, even with cancer I wouldn't trade my life with anyone. I have never felt so loved.