Welcome to Cancerland.
On the first day of October (Breast Cancer Awareness Month, ironically!), we met my new oncologist. Naturally, I was nervous...I was adamant to find one in my insurance network, but would I LIKE her? With my boyfriend by my side, I asked him beforehand to tell me how he FELT about her -- that was most important to me. Every survivor I had spoken to advised me that this would be someone that I would be with for a long time, there MUST be trust and they would now head "Team Rachel" (my new team of specialists that would help me kick cancer's a$%).
As doctor's appointments would soon become my new normal, friends and family gave me the following tips (which I still follow to this day, even though my appointments are less frequent):
- Buy a "cancer notebook." You will take lots of notes on this new "journey," so get a notebook to write it all down. It will be hard to remember everything, and you will be thankful for it later.
- Prepare your questions before the visit. Write them down before the appointment and make sure your doctor answers them before they leave. The doctor should not rush you and should ask if you have any questions!
- Take someone with you to the doctor. There is so much information being thrown at you that you will not possibly be able to hear AND digest it all during the visit. Also, make sure they have their own questions, in case you forget to ask something; they may be thinking of something that you may not. (The night before my appointments, my boyfriend and I would go over our collective questions to make sure we had them all written down.)
- Be comfortable with getting a second opinion. The doctor should encourage this; if not, you may need a new doctor! (One survivor I met said he interviewed five oncologists before picking one.) Remember, they work for you, not the other way around!
My new oncologist entered the room with a female surgical fellow (to speak to the surgical phase of my upcoming journey). My boyfriend and I attempted to take notes at the beginning, but there was way too much information. The oncologist recommended that we just listen, because then you focus more on taking notes than what is being said, so we recorded the appointment (which I still do at all doctor's appointments). If you have a good doctor, they will be fine with being recorded!
- Since the tumor was quite big (and I'm not!), the recommendation was 4-6 months of chemotherapy first (to shrink the tumor), then surgery, and then radiation treatment. (If surgery was done first on such a large tumor, it would leave a dimple in my chest, and my team did not want me to have this constant reminder. Plus, there would still be a high risk of recurrence from performing a lumpectomy first.)
- Depending on how the tumor responded to the chemotherapy, a lumpectomy was possible afterwards, but it would most likely be a single mastectomy/reconstruction.
- AT MINIMUM, I had Stage IIB breast cancer, but they would need to do more testing to confirm the (clinical) stage.
- I had triple-negative breast cancer (TNBC), which refers to breast cancer that does not express the genes for estrogen receptor (ER), progesterone receptor (PR), or human epidermal growth factor receptor 2 (HER2/neu). This also makes it more difficult to treat since the tumor cell receptors cannot be targeted.
- I would be receiving neoadjuvant therapy, treatment given before primary therapy (in my case, surgery). For example, a woman may receive neoadjuvant chemotherapy for breast cancer to shrink a tumor that is inoperable in its current state, so it can be surgically removed later.
- I could potentially prevent hair loss by using a cold cap (essentially an ice pack fitted tightly on the head like a swim cap, which puts the hair follicles into a dormant stage so they are not exposed to the toxic side effects of chemo). The caps are rented monthly for about $600/set, must be kept frozen and changed quickly every half-hour by someone else. Women sometimes ask friends or family to help, or patients sometimes hire "cappers", paying $300 - $750/day. That sounded expensive AND like a lot of work! (I remember defiantly thinking, "If I'm going to have cancer, I'm having it all the way! Screw you, hair loss!")
- Chemotherapy would start next week! WOW. When the Cancer Train starts, it starts fast. Be. READY! Before chemo even started, I would have to get a whole litany of tests: a bone scan, CT scan, breast MRI, brain MRI, echocardiogram (ECG) and BRCA1 & 2 test.
- If I needed to get my teeth cleaned, I better do it now. Due to the risk of infection that can happen after every chemo cycle, I should avoid having root canals, extractions, or fillings during chemo, since the gums of the teeth have lots of bacteria. Dental visits were possible but would have to be timed when my counts were up between cycles. (Chemo also does a real number on your teeth!)
- Oh, and by the way...did I want kids? WHAT, I have to decide that right now?! Because if I did, chemotherapy would shut down my ovaries. (No periods? At least one good thing came out of this!) I would need to see a fertility specialist NOW to freeze my eggs while I could. All I kept thinking was, "ANOTHER appointment?? When the hell will I do that by next week?"
I was mostly worried about how we would feel about the oncologist (it was also a huge trek without a car), and I wanted to make sure we felt comfortable with her. Given the distance, I still inquired about a referral for an oncologist closer to me, but my boyfriend reminded me, "Closer does not mean better." We had a good feeling about her, which was a huge relief. Also, how long would it take to find another oncologist? What if their therapy "recipe" was different? How long would that delay treatment? What if we didn't feel comfortable with them?
She clearly explained what was ahead and patiently answered all of our questions. Now that we had a game plan, I felt a small sense of relief. At least we would be doing something about my cancer soon, and this large lump in my chest would (hopefully) no longer be a part of me.
She later scheduled an appointment for me that day that I was supposed to do, but she did it for me anyways, because she knew I had a long day. This small act of kindness helped seal the deal for us that we had found our new oncologist, the ultimate leader of "Team Rachel." When I left, she went to shake my hand. To me, it felt awkwardly stiff, given everything we were about to face together. I made her hug me instead and said, "We're going to know each other for awhile!" (Also, since she just played with my boobs, I figured we were past the handshake stage.)
Looking back now, I'm so thankful that we recorded that initial appointment. We were such noobs! We didn't know what any of the terminology meant or what awaited us on the long road ahead; learning about cancer is like entering a whole new country, with a new foreign language to absorb, and an unknown community waiting to welcome you.
We didn't know what we didn't know. It was too tough to think about Step 10 when we were barely on Step One. If we thought any further than that, we would drive ourselves insane. We could only think about this one day at a time, one appointment at a time. That was the only way to get through it.
Welcome to Cancerland.