All right! This post will be a pretty big one. In fact, it is huge! I talk about a lot of medical stuff, but try to explain things as best as I can. So here we go!
Treatment
On Tuesday I was able to meet with my new breast surgeon. And the appointment that I thought would only last about an hour ended up lasting for about four hours! But in that time I met with so many people and had a lot of information thrown at me, so I'll do my best to share what I know below. In addition to my breast surgeon, I also met with my new medical oncologist, nurse navigator, and nurse clinician. Everyone was so nice and really made me feel like I was their number one priority. And everything was so efficient! All the doctors came to us, they called and scheduled all my appointments for me, and my nurse navigator stayed with us until we left to make sure everything went smoothly.
The basic rundown is that I am starting treatment very soon. After a few additional tests over the last two days, I have been approved to start chemo! In fact, I just missed a call to start scheduling my infusion appointments, aka chemotherapy. My doctors' plan for me is to do chemo first, then surgery, possibly radiation, then more chemo, and following it all up with hormone therapy. The timeline for all this will be the entire year, maybe a little longer. The hormone therapy will continue for the next ten years. Yes, TEN years.
I still have three more big tests to do in the next week and a half-- a breast MRI, a full body CT scan, and a bone scan. These scans will be looking to see if cancer can be seen or detected anywhere else in my body. Pretty obviously, we do NOT want to see cancer anywhere else. If the cancer has not spread beyond where it is suspected to be right now, my cancer will be considered a Stage 2. My doctors' goal is to completely eradicate it and cure me! And obviously they think this is an attainable goal. It's just going to take a year.
Now if the scans show something else... we're talking about a totally different outcome. I don't like to think about that, so until I have these other test results, I am operating under the assumption that even if this won't be at all easy, it will be effective and I will be cured. Even though curing me is the goal, I do want to stress (and remind myself) that this cancer is still very serious. It is aggressive. And it is fast growing. But my chemo drugs, surgery, and other treatments should hit it pretty hard.
And how will they do this? Let's look closer at the steps of treatment!
Chemo and Surgery
Everyone has heard of chemotherapy, right? If not, just to review, chemo is a chemical drug treatment that is used to treat cancer. It is most often given in IV drip form. Sometimes it is a pill. In my case, it will all be given by drip. I will be taking a cocktail of four different drugs before I have surgery. A lot of breast cancer patients, if they need chemo at all, it is done after surgery. But because of my specific type, in particular the fact that I am HER2 positive, I need to do chemo before surgery. This is also known as neoadjuvant chemotherapy.
The benefit of doing chemo before surgery could be amazing for me. The drugs I will be on should shrink my tumor quite a bit, and my doctors think it may even completely disappear before surgery. That means that I will likely only need a lumpectomy! Even if the tumor goes away completely, they will still have to do some surgery to remove the area around the tumor and to make sure it's really all gone. The chemo should also shrink, if not destroy, the cancer in my lymph nodes. That would be amazing because then I will not have to have any (or as many) lymph nodes removed, which means I will be less likely to experience lymphodema later on.
Of course there is a caveat to all this in regards to just having the lumpectomy. Yesterday I gave blood to have some genetic tests performed. They will be testing me for certain gene mutations that have been known to cause breast cancer. Some of these genes also hold a greater risk for developing a new breast cancer later on. If I test positive for these gene mutations, I will discuss with my care team, but I will likely decide to have the bilateral mastectomy. That may seem extreme, but women who test positive for the BRCA 1 or BRCA 2 gene mutation have a 40% chance of getting a second breast cancer even after treatment for the first one. If I were to get the mastectomy, those odds would go down to only 4%. So you can see why I would opt to just have my breasts removed.
And what chemo drugs will I be on?
Taxotere and Carboplatin
These two drugs are the more generic chemo drugs I'm getting. I say "generic," but that's not entirely the correct word. These two are used specifically for advanced stage breast cancers, but they're generic in the sense that these won't be targeting my specific HER2 protein markers. The taxotere is used to interfere with the cancer cells' ability to divide themselves. The carboplatin is used to weaken or destroy cancer cells by damaging the cells' genetic material and makes it difficult for the cancer to repair itself and grow.
Like most chemo, these will come with some pretty bad and devastating side effects. The biggest one, or at least the most visible side effect, is that I will lose my hair. Probably all of my body hair. Chemo drugs target fast growing and fast dividing cells. Cancer just happens to be fast growing cells... but so are hair cells. So the drugs won't only just destroy the cancer cells, and that's why I will lose my hair. Other fast growing cells may be affected-- skin, nails, tongue, and mouth cells. With these two drugs I'll also likely experience nausea, loss of appetite, change in taste buds, heavy fatigue, nerve damage and neuropathy, and low blood cell counts. Sounds like fun, huh? One thing to note, though, is that the severity of side effects does not correlate to the effectiveness of the treatment. However, chemo side effects are accumulative; my first couple cycles might not be too bad, but the longer I get my infusions, the worse I could feel each time.
Herceptin and Perjeta
These are the two drugs that I am the most excited about! Okay, maybe not excited because I'm not excited about any of this. In fact, this is basically all bullshit, and it's bullshit that I have cancer, and fuck cancer. I'm trying to stay positive about it all, but I'm also really pissed off. So...
Anyway! Herceptin and Perjeta! These are going to be my miracle drugs. Herceptin has been around since the late 90s, but was officially approved in 2006 to treat HER2 positive, node-positive breast cancer. And just this past summer, the FDA approved the combination of Herceptin and Perjeta to be used for HER2 positive cancers. Studies have shown that women live longer and have the chance of the cancer coming back drastically reduced.
HER2 positive breast cancer is very aggressive (only 1 in 5 women will be HER2+), but these drugs are design to specifically target and fight it. Herceptin works by blocking the chemical signals that tell the cancer to grow. What's more, it sends a signal to the immune system to attack the cancer cells and eat them and shrink the tumors. Perjeta works to complement the Herceptin by attaching to a different part of the HER2 receptor.
Before these drugs existed, the outlook for women who were HER2 positive was not good. The cancer almost always spread because it could not be stopped or controlled since it was so specific. But now the outcomes have flipped and it is almost better and preferable that I am HER2+! These drugs will basically be the heavy ass-kickers!
The side effects aren't quite as bad, mostly some brutal fatigue from the Herceptin. The other huge concern is that Herceptin can cause weakening of my heart muscles. Because of this, I will have to get echocardiograms every few months to monitor my heart. I had my first one yesterday to get a baseline. But my heart looks good and strong. It kind of sucks that I have cancer, otherwise I would be super healthy!
Length of Chemo
And how long will I be on chemo? Well, about five months initially. I will be getting all four drugs spread out over six different sessions, one session every three weeks for about 18 weeks, all four drug drips on the same day. However, I will continue to get an infusion of Herceptin for the entire year or twelve months total. Yep, I am in this for the long haul.
After the first round of chemo, I will get about a month break to recover and then I will have my breast surgery which is TBD about what kind I will have to get. That recovery can take about 3 weeks, depending on what I have to do. After that, I'll still have to go in for the Herceptin and I might need radiation. The radiation won't be determined until after the surgery, as is my understanding. My hair should begin growing back about four months after my last chemo session. Fortunately, Herceptin does not cause hair loss, so I can continue to take that and still get my hair back. All in all, I will likely see my hair begin to grow back in October or November.
My Port!
Okay, I am excited about this, but only because it is going to make my life easier. On Tuesday I am going to the hospital for them to implant my port. Also called a "venous access port," this will be a device that is placed under my skin (in my chest) that has a catheter threaded up through one of my large veins. Under my skin it will look like a nickel-sized bump. But through this port, they will be able to give me chemo, draw blood, give other IV fluids or medicines. So basically, I will not have to poked and stuck with needles and have IV lines started all the time in my arms or hand veins! For any friends that see me in the next year, just know it will be visible under my skin, so don't let it freak you out.
Hormone Therapy
In addition to being HER2+, I am also ER+, or estrogen positive. That means that estrogen is also slightly feeding my cancer. I have a low positive result, but it is still a positive and means that I should take precautions to not have an issue with estrogen in the future. As such, I will be taking a drug called Tamoxifen. This drug is in pill form (yay!), but I will have to take it every single day for at least 5 years, but my doctor said probably 10 years in my case. I will also need more frequent mammograms and screening for the rest of my life.
Wow... that's a lot isn't it? As I said, it's curable, but still a big deal and it's going to be quite a battle. When it's all over, I will basically have lost a year of my life to this. But as I've already said to some friends -- I'm losing a year, but it's a very small price to pay to be able to live the rest of my life.
And obviously this is not the end to my updates. Chemo is starting soon and before chemo I have decided to shave my head. So I will have updates about that, about some of my other tests, the chemo itself, side effects, and most importantly about how the chemo is shrinking my tumor and curing me! If you have any questions, please feel free to reach out (just, once again, be patient with response times... I have a lot going on). I'm getting lots of wonderful cards and gifts and each one is such a nice boost of positivity! So thank you! Until next time....
A big hug, Ramona!
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