Hello again! It has been just over ten years since I felt the need to write about the mundanity of raising small children. Ten years later I have middle- and high- schoolers, a part-time environmental education job, four pets, and cancer. Happy birthday to me! Most of our pictures these days are of me and Joe together watching the kids do something far away.
October is Breast Cancer Awareness Month in the United States, and it has always bothered me. I think I might even have a post about it on this blog. Brands pink-wash everything to "raise awareness" and donate some tiny bit of money towards research. The only awareness I ever gained from this month was that boobs sometimes get cancer. Duh, I knew that already. I did not know anyone under the age of like 65 that had ever had it. Since my diagnosis, it turns out I have two friends that also have/had it and one of the parents of a former student is going through diagnosis right now. All under 40. I also did not know that alcohol and lack of exercise are the biggest risk factors, not genetics. So in the spirit of Pink-tober, I'm going to be sharing my story in the hopes that it might help someone else. I'm thinking there will be four posts. One each covering diagnosis, surgery/immediate recovery, treatment/long term recovery, and paying for cancer/survivorship. Is there something else specific you want to know about? Ask me anything.
Here goes. I think the easiest way to organize this is an annotated time-line full of nitty gritty details. I'm going to bold and highlight pink the sentences that I think have the most important information if you'd just like to skim.
May 8: Five days after turning 40 I had an annual physical exam. I have been seeing the same primary care physician (PCP) for over fifteen years. She knows that I am slightly hypochondriatic and am always convinced that I have MS. (I do not have MS.) For years I've been saying I feel really tired, and for years every doctor I've ever mentioned this too says something like "Well, you're a busy mom. Of course you're tired." In retrospect, this may have been an early symptom. Along with the usual annual exam things, she did a manual breast exam. I have been told from my very first breast exams twenty years ago that I have dense breast tissue and that I shouldn't be surprised if they feel lumpy bumpy and to not worry about it. Turns out women with dense breast tissue have a FOUR TO SIX TIMES increased risk of developing breast cancer. AND it is harder to find in regular mammograms. The doctor felt something on the left side, then went back and forth from left to right a couple of times, and walked over to her computer and started furiously typing. I thought, well that can't be good. She explained that she felt something on the left, but not the right and since I just turned 40 I should be going for my first mammogram soon anyway. But since there was this weird thing, she went ahead and ordered a diagnostic mammogram as well. She said not to worry about it, most of the time it's nothing, and try not to freak out. For whatever reason, this time I believed her. I went home and I didn't worry. After all, everyone had always told me they were dense and it wasn't going to be anything. Just another annoying test. It's also interesting to note that the American Cancer Society no longer recommends self breast exams, or even clinical breast exams! This seems insane to me. https://www.cancer.org/cancer/types/breast-cancer/frequently-asked-questions-about-the-american-cancer-society-new-breast-cancer-screening-guideline.html
June 4: I go in for my mammogram. They walk you to the "Spa Room" where you change into a cheap pink robe and there's a TV with some daytime talk show on and you wait with a bunch of other women until they call your name. A regular mammogram is uncomfortable. They squeeze your boob inbetween two plastic sheets while you awkwardly hug a machine and they take pictures. A diagnostic mammogram is twice as uncomfortable because 1) they're doing it AGAIN with more pressure and 2) they make you stand in really weird positions to get the best angle for the image. Then you also get an ultrasound. Afterwards they have you change back into your regular clothes and wait in the spa room for your results. This is the worst part, watching people who arrived after you leaving before you. It's never a good sign. Then a nurse shows up with a different color folder than everyone else's was and calls your name. Also not a good sign. They walk you to a special little room that is supposed to be private and calming with a fountain and some fake plants. The nurse explains that the radiologist did in fact see a 2x3x4 cm mass and is recommending an ultrasound guided biopsy and they can fit me in the schedule in two days. When you're only 40 and it's looking like cancer things move quickly. Then the radiologist comes in to see me. She explains that regardless of what the biopsy results are, whatever this mass is will have to come out. So at the very least I am for sure looking at surgery of some kind in the near future.
June 6: The biopsy was scheduled for early morning. I head back to the same hideous spa room and wait. A biopsy is where they take a chunk of tissue and send it to a pathology lab to see what's in it. The doctor explained they were going to use a local anesthetic to numb the area, and the only thing I should feel is pressure, but no pain or stinging. So they inject the lidocaine, wait a few minutes, then insert a large open bore needle. The doctor takes the first sample, KACHUNK, and it hurt. Like a lot. I'm pretty sure I whimpered. I told the doctor that I definitely felt that, so she stopped and injected more lidocaine and I had a mini panic attack before moving on. She took six samples, and the rest were thankfully all numbed. Then they drop in a titanium clip to help with further imaging and surgery. After the biopsy you have to go have another mammogram to make sure the clip is visible. And let me tell you, if a regular mammogram is uncomfortable, having one immediately after having chunks of your boob cut out is even worse. As I'm hugging this loud machine, weeping and visibly upset, the tech says again, "I've had three of these it's probably nothing". I understand that doctors and nurses don't want to cause unnecessary anxiety, but hearing over and over again about how it's probably nothing only makes it worse when it's not nothing.
June 8: The test results pop-up in My Chart on a Saturday in the middle of Thomas's hockey game. No phone call, no explanation, just the raw pathology report, followed by a panicked weekend of deep Googling:
Invasive ductal carcinoma, low grade
Estrogen receptor 92%
Progesterone receptor 98%
HER-2 negative
Ki-67 35% (unfavorable)
June 10: I finally get a call from my PCP who was really upset the report was released directly to me instead of being held until she could view the results and call. I get set up with a Breast Health Nurse Navigator, a pair of RNs whose only job is to manage breast cancer patients. They help get insurance approval, set up appointments, provide resources and education, and are the easiest to get ahold of for questions. These women are incredible. Maybe it's because they don't provide any medical diagnoses or treatment so it feels less judgey, but they are easier to talk to about whatever million questions pop-up in the middle of the night, whatever random internet advice I've found, or whatever alternative treatments I have questions about. They see all of your communication with all of the doctors and all of your test results and help follow up if it seems like the doctors haven't gotten to something. They also have seen so many different women, going through all the different kinds of things that come with this diagnosis, and they just know a lot about the medical system, how to get insurance to pay for what you need, and make you feel less lost.
June 12: By the time this appointment rolls around I am just a giant ball of anxiety. From all my Googling I've figured out that there is 97% survival rate at 5 years, 94% at 10 years, and 90% at 20 years. When you've just been told you're already in the 2% that got cancer, those numbers are NOT reassuring. It feels like there's no way you're going to be in the majority ever again and suddenly 20 years is not a long time at all. The oncologist explained that this is cancer in a milk duct that has started to spread to nearby breast cells and that the treatment is surgery to remove the cancer, then depending on what they find during the surgery possible radiation and chemotherapy, and definitely 5-10 years of hormone therapy. The strong ER/PR and HER-2 neg results are all good things. It is the most common type of breast cancer, and the easiest to treat. A Ki-67 number over 30 (out of 100) is an indicator that the cancer was growing quickly, and might mean a higher risk of recurrence.
June 14: After spending six days researching all the different types of surgery possible, I finally met with a breast onco-surgeon. She explained that there is no difference in long-term outcomes between a lumpectomy with clear margins, single mastectomy (SMX), or double mastectomy (DMX) with or without reconstruction. It seems weird that your risk of recurrence doesn't go down if you remove breast tissue. I understand they can never guarantee to get ALL of it, but it seems like less boobs should = less risk. You get bumped to the annual mammogram club for monitoring, so they will likely see a recurrence quickly. But then, she pulled up the images of my mammograms. The regular mammogram, that I would have gotten anyway just for turning 40, SHOWED NOTHING. The surgeon said the radiologist would have looked at this and said everything was fine. If my PCP hadn't felt the lump I would have never known. In that very second I knew I was going to have a DMX because I would never sleep again knowing that the standard imaging test didn't even show the cancer.
June 19: Back to the hospital for an MRI. For a breast MRI you are laying face down ona table with two holes for your breasts to sort of dangle freely in. So it feels less claustrophobic, but definitely weird. The MRI confirmed the size and location, far from my chest wall and the skin, and the closest lymphnodes looked clear. It also did not find anything in my right breast. That is all good news because it looks likely that it hasn't had the chance to spread.
June 28: I am generally terrified of surgery. I hate the idea of general anesthesia. I have a very low tolerance for pain (even though I've given birth drug-free), especially long-lasting or stinging pain. And I really don't like taking strong pain-killers because I'm terrified of becomming addicted to opiates. Not that I've ever had a problem with that, it just seems like the kind of thing that might happen to me. The onco-surgeon had me meet with a plastic surgeon to talk about all the different reconstruction options. As soon as he said the words "necrotizing nipples" I was done. I wanted the surgery to be as simple and quick as possible. And I wanted the shortest possible recovery with the least amount of potential complications. So after talking with Joe, I decided on an Aesthetic Flat Closure (AFC), and the surgery was schedule for August 5.
July 3: I had to meet with my PCP one more time to be cleared for surgery. I did take a little bit of joy at being able to say "Ha! This time it IS cancer!" when she walked into the room. Thankfully she's a good sport.
Aaaannnnddddd..... that's how I was diagnosed. Ask me anything about anything and I'll answer as honestly as I can. Next week, all things surgical.
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