The Diagnosis: Part 2

From the moment I heard the word “cancer”, everything happened so quickly. Like someone hit the fast forward button and couldn’t figure out how to turn it off.

Carlos and I had a flight booked to go to Hawaii for a week on August 2nd (for my 27th birthday) and I had no idea if I would be able to go. They rushed my first appointment with my oncologist for this reason. I met with her on July 31st and she told me the tentative plan for treatment:

  • 8 rounds (~4.5 months) of chemotherapy (expect hair loss, nausea, fatigue, and bone pain… yes BONE pain)
  • Nightly injections in my stomach to boost my immune system during chemo (expect more bone pain)
  • 1 year of targeted therapy (this is toxic to your heart so regular heart scans are needed)
  • Surgery (preferably lumpectomy with lymph node dissection)
  • 20-25 rounds of radiation (every Monday-Friday for 4-5 weeks)
  • Hormone therapy (oral pill and monthly injections) for possibly 5 years (this keeps your body in chemical menopause so that no estrogen can make the cancer grow, expect hot flashes and mood changes)

As someone who once fainted at the optometrist when I found out that I needed glasses, you can imagine how I handled this information.

When I asked about the trip to Hawaii, she explained that delaying treatment by a week wouldn’t make a difference and that I should go ahead and enjoy my vacation before I begin treatment.

So that’s what we did! It was a little taste of paradise to hold on to before I entered… well, not paradise.

The Road to Hana, Maui
RIP hair. It should be noted that I resisted EVERY temptation to not shave my head in Hawaii. Having to detangle it from salt water and wind every day was extra tedious knowing it would all be gone in a few short weeks.

I know it’s hard to believe, but I actually had an amazing trip. Sure, there were times when it all hit me at once, but changing my environment was the best possible thing I could have done for myself. On my birthday I rolled around in the sand, splashed around in the waves, went to a movie, and ate the most delicious fish tacos I’ve ever had in my life. It was perfect.

Having cancer sometimes makes being alive feel like you’re touching a live wire. It’s like all of a sudden, everything is amplified. The highs are so much higher, and the lows are so much lower. You start seeing beauty and joy in so many places you never saw before. This trip let me experience that and it kept pushing me to live in the present moment. When everything is new (new sights, sounds, smells, foods, activities, etc.) it invites you to fully absorb the present moment, which is exactly what I needed.

When I land back in Vancouver, it’s go time. Here’s a brief timeline of what happened:

August 14th: I have a port surgically put under my skin on my chest so that I could get treatment and blood work more easily (you can read about that here)

August 16th: I have a PET scan in order to find out exactly what stage I am.

August 17th: I start chemo (ew).

August 18th: Me and my amazing friend Charli get pixie cuts together to prepare me for hair loss.

August 21st: I go with Carlos and my sister Lucy to meet my oncologist for my first follow up appointment after chemo. My oncologist also has the results of my PET scan (warning, this is where shit gets real). Her voice gets a bit somber. She says “The good news is that it’s not in your heart, your liver, your brain, or your lungs, but… we did find two small spots on your sternum, I’m so sorry Sarah”.

My mind went completely blank. I instantly crawled up into a ball and just kept turning towards Carlos and looking at him with a complete look of panic. I couldn’t even cry. I was completely shell shocked. I couldn’t look at Lucy. I could see her in the corner of my eye with her head between her knees and her hands on her head. My oncologist continued, “So unfortunately this does make you stage 4 and you will be considered a cancer patient for the rest of your life“. I basically combusted into a ball of anxiety and panic. I didn’t have anxiety, I transcended and BECAME anxiety personified. Even though she followed this up with “but I don’t view you as a stage 4 patient because you have such a minimal amount of disease in your body”. And “There is a very good chance you will make it through this”.

So let me just clarify, no I’m not dying. The cancer did metastasize to my sternum in a small area (which technically makes me stage 4), but I’m not considered terminal by any means. My oncologist explained that I am what is considered “oligometastatic” (a new term, and very rare). Oligometastatic means the cancer has spread to a different part of the body, but it has only spread to one area and in a very small amount. What does this mean? It means I have a shot at a “cure”, meaning I could live a long life without this ever coming back. The other good news is that my mets (metastases) are in the bone, and women with bone mets have better chances of long-term survival. Bone mets also respond really well to radiation.

Let’s fast forward to present day for a second: The GOOD news is that I responded insanely well to chemo. After my lumpectomy, they analyzed the breast tissue and 7 lymph nodes they removed and found ZERO cancer cells. In the cancer biz, this is called a complete pathological response and it’s the best case scenario. Although I haven’t had a follow up PET scan yet to confirm all the cancer is gone, my doctors tell me it is HIGHLY likely that the mets on my sternum are also gone.

So am I cancer free?
The answer: we think so, but it’s not yet confirmed. But trust me, when I know for sure I will scream it from the rooftops!

I expected my treatment plan to completely change with this new stage 4 label stamped across my forehead, but it didn’t. What did change is that my oncologist added an extra drug into my targeted therapy regime. Instead of just receiving the drug Herceptin for 1 year, I was now going to receive Herceptin and it’s sister drug Perjeta to better attack the cancer cells. She also explained that instead of just doing targeted therapy for 1 year, I should now do it for 5 years. However, since I had a complete pathological response, she thinks that maybe it won’t be necessary (it’s something we’re going to discuss in the future).

In case you don’t already know, the survival rate for metastatic breast cancer is extremely discouraging. But, I am not going to let it bring me down. I’ve responded incredibly well and I’m going to keep fighting every day to live a happy and healthy life for as long as possible. I never understood the concept of “fighting” cancer until I had to fight it myself. It’s more than a physical battle, the real fight is choosing to take back your life every day and live it to the fullest, despite your circumstances. So that’s what I’m going to keep doing. It’s hard as hell and I didn’t expect to ever have to do this, let alone do it in my 20s, but it’s really the only choice I have.

I don’t know why I suddenly feel like writing a thank you speech, but I honestly cannot put into words how much I love and appreciate all the people in my life who have been there for me or supported me in one way or another. I have the best partner, family, friends, and coworkers anyone could ever ask for. My heart feels so full and I’m so excited to beat this with all of you amazing people by my side.

xx

Sarah

The Diagnosis: Part 1

Hi!

My name is Sarah and I was diagnosed with breast cancer at age 26. This is my story.

July 2017: I just finished grad school and was on top of the world! It was finally time to move across the country to be with my partner Carlos and to start my first real-adult job as a Speech-Language Pathologist. Once I get all settled in Vancouver, I decide to see a doctor at a walk-in clinic for the pain I was having in my left breast. She gives me a breast exam and explains that I’m most likely experiencing pain from a cyst and that I need to quit caffeine and manage my stress levels (as caffeine and stress can cause cysts to form). She explains that breast cysts usually go away on their own and only need to be drained if they get too big. I figure “Ok, makes sense! My family doctor back home also told me I have cystic breasts, my mom had a breast cyst before, and I have no family history of breast cancer”. I follow the doctor’s orders and quit drinking coffee immediately. Coincidentally, the pain subsides and I figure “problem solved!” (spoiler alert: the problem was not solved).

January 2018: Six months later I return to the same doctor for a routine pap test and breast exam. She doesn’t feel anything concerning during the exam (and neither do I at this point), and I’m no longer experiencing the sharp pain in my breast. All appears well.

May 2018: Fast forward to May, I find a pea-sized lump in the 6 o’clock position of my left breast (it is my non-professional opinion that this is the worst place for a lump because it is the most hidden!). My first thought is “Shit. It’s probably a cyst. I have been really stressed lately. I should go to the doctor. Hopefully it goes away soon”.

Ok listen… I know what you’re thinking. Before I was diagnosed, I would hear stories of women finding a lump in their breast and not worrying about it or not acting on it right away. I used to think to myself “How can you not be worried about a lump in your breast??”. In my defence, I was worried, but I had been told by my doctor (and my previous family doctor back home) that I have cystic/”lumpy” breasts (scientifically known as “Fibrocystic Breasts”), I had had two recent breast exams done by a doctor, and I hadn’t had any breast pain in about 9 months. All of this along with the fact that I have no family history of breast cancer meant I didn’t see a huge red flag. *rant over*

June 2018: I notice the pea-sized lump is suddenly much bigger. I start googling like mad. Google tells me that cysts grow quickly and that tumors grow slowly. I figure “Well this is definitely growing quickly so it must be a cyst). Worst case scenario, it will need to be drained” (ah, how I miss my naivety).

July 2018: The lump is still growing (now the size of a large grape) and I can’t delay it anymore. I drop everything and decide to go to the same walk-in clinic, but they tell me I would need to wait another 10 days to get an ultrasound. My anxiety gets the best of me, so Carlos and I decide to go to the emergency room. The doctor there also tells me it’s probably a cyst but refers me to a rapid access breast clinic for an ultrasound to be sure. Even as a self-proclaimed hypochondriac with an anxiety disorder, not even I was seriously entertaining the fact that it could be cancer.

July 19th, 2018: I go alone to my ultrasound (pro tip: don’t go to important appointments by yourself). When the ultrasound is over, they bring me to get a mammogram right away. I keep asking the staff if I could see a doctor. Finally, when a doctor does come to speak with me, I think it’s because I had succeeded in badgering the staff for one, and not because the doctor had life-changing news to tell me. They bring me to a small dark room (normally used for ultrasounds). The doctor looks very young and seems a little nervous. I wonder if he’s nervous because he’s inexperienced (in hindsight it’s clear why he was nervous). He explains that they won’t know for sure until they do a biopsy, but that the imaging showed all the characteristics of breast cancer

It feels like my chest is on fire. My ears start ringing and I can hear my heart pounding in my head. It doesn’t make any sense. I feel like I’m watching a movie and someone else is sitting on the hospital bed hearing these words. The word cancer feels like it’s being seared into my skin. I burst into tears of panic. The doctor robotically puts his hand on my knee and I want to recoil from him. I’m furious and confused. I ask for a tissue. He looks around the room and hands me a towel, it feels scratchy against my face. Once I compose myself a little, I try to make sense of what he is telling me. I ask, “So how sure are you that it’s cancer? Like 90% sure?”. He replies “Yeah about 90% sure”. All I’m thinking is… “Are you just saying 90% because that’s the number I threw out there?? What the hell is going on?!”. As he continues on, he explains in detail why exactly he thinks it’s cancer. He then tells me that he will do the biopsy himself tomorrow morning and the results from that will tell us for sure. With all care for social etiquette out the window, I ask if he’s done this procedure before. He laughs and tells me that this hospital does the most breast biopsies than anywhere else in the province. Even though it wasn’t confirmed yet to be cancer, the doctor had enough confidence that I lost all of mine.

Biopsy Day (Made possible by Ativan and warm blankets)
Also pictured: The ominous black blob

We have to wait about 6 days for the results of the biopsy. Let’s all take a moment to appreciate Carlos for literally keeping me alive through these 6 days. I could hardly eat or move for the first day or two. I lost about 10 pounds in the first week alone from stress. I just couldn’t fathom that everything I knew felt like it was being ripped away from me. But as time went on, Carlos pushed me to keep living life. We went to the gym together, we went blueberry picking, and I went to work. That’s the crazy thing, life continues on even after it feels like a bomb has just been dropped in your lap. I allowed myself to feel my feelings but needed to be pulled back to reality every once in a while (ok, more than every once in a while). I had to grieve the life I had before cancer because I knew my life would never be the same again. It’s important to go through the grieving process, but it’s also important to keep living life, as difficult as it is sometimes. My motto became “one day at a time”. Everything seemed so insurmountable when I looked at it as a whole, but I slowly learned to focus on getting through each day at a time.

When life gives you lemons, pick blueberries!

July 25th, 2018: Biopsy results day. I wake up and think “Ugh, someone is going to tell me I have cancer today”. I meet with my surgeon that afternoon and lo and behold… I receive the official diagnosis of Invasive Ductal Carcinoma. Breast cancer can be described in three main ways: estrogen +/-, progesterone +/-, and HER2+/-. My cancer was ER+, PR-, HER2+. My surgeon tells me that the HER2+ component of the breast cancer is a very fast growing and aggressive form of breast cancer that was considered practically untreatable up until about 15 years ago. However, now, many women with this type of cancer respond very well to treatment (thank you science!). THIS is the reason that sucker grew so fast. After my surgeon examines me, she tells me she thinks I’m very early stage 2. I think to myself “Ugh why couldn’t it be Stage 1! I could handle Stage 1”. However I wouldn’t find out my actual stage until I received a PET scan (more on that in the next post). My surgeon gives me an idea of what she thinks my treatment plan will look like, but explains that I won’t know for sure until I meet my Oncologist (and so begins the life of having so many doctors that your family and friends begin to lose track of who’s who).

I’ll have to cut it there for now, otherwise this is going to turn into a novel! I’ll talk more about the staging of my diagnosis in the next blog post (read here). Thank you for making it this far!

xx

Sarah