This morning I woke up bright and early to make it on time for my 7:30 am appointment with Phlebotomy ( the place I do my blood test before every cycle). My alarm clock went of at 6:30 am, but of course I pressed the snooze button. Quickly, I put on my face (make-up) and got dressed. After making my way downstairs, I gulped a glass of orange juice poured by my mother and we were off! Nik would join my mother and I for my second session but he’d still be working from his laptop.
I directed everyone to their specific route of where they should meet me, Nik would wait for me in the lobby, since the Phlebotomy office prefers patients to come alone, and my mother would park the car in the ramp and meet us on the second floor infront of the Breast Clinic. We arrived a little late, but it was ok because there was only one gentleman ahead of me to get his blood work. Unfortunately, the computers in the office froze and I had to wait a little longer than expected. The nurse who took my blood made it quick and painless, the fact that I’m young and fit makes me a perfect candidate for getting my blood drawn. Anyone who has difficulties with me, just can’t do their job right. Plain and simple. Anyways, I kindly thanked the nurse for the job well done and made my way towards Nik.
Walking out of the elevator, my mother was already sitting in a comfy chiar and reading her book. I checked-in at the front desk in the clinic and waited to be seen for my vitals. After 5 minutes or so, the nurse called my name and I headed in. My vitals were perfect, although I’ve gained some weight since my first visit. That I do not appreciate, not at all. It’s actually quite funny, many women doing chemo anticipate losing weight but on the contrary many women with BC actuallly gain weight while on chemo, not becuase they eat too much but because the food that tastes best is blend food and comfort food. Foods rich in carbs are usually what the women crave, I am no exception :). I’ve been stuffing my face with breads and buns, at one point I couldn’t wait to get home, I opened the box of mini croissants in the parking lot of the store and scarfed down 3!!
At the doctors office, I was seen by my oncologists Nurse Practitioner. It was a short and sweet appointment where Nik and my mom joined me in the room. She did a basic physical exam, looked at my extremities, listened to my lungs and heart, and she also took a look at my incision from the mastectomy. “Everything looks great” she said.
After the PE we briefly discussed my new discovery, the positive BRCA1 mutation. There is an optional mastectomy of my left breast, the only one I have left 🙁 , and an oophorectomy, which is the surgical removal of ovaries and totally necessary. She asked if I was planning on having children, I responded with an “absolutely”. When my chemotherapy is over, I can talk to my oncologist about when it is a good time to start conceiving. 🙂 Nik was in the room the whole time and didn’t run out! I got myself a keeper, as if it wasn’t anymore obvious. I am so lucky to have such a supportive boyfriend, he truly is amazing. After all the baby talk, the NP was going to try to schedule a genetic testing appointment for my mother and possibly doing my Neulesta shots at home.
It was close to 9 am and by this time we were feeling a little hungry and decided to go have breakfast at the cafeteria. I had eggs, bacon and pancakes with yogurt and tea. We sat there for about an hour, Nik was working and I was Skyping with Natalie. My sister is currently in the same Medical School as I was in Poland, the time difference is 6 hours. At 9:45 it was time to go down to register at the Infusion center so I could begin my chemotherapy.
Boy oh boy was that place packed with people! I was 7 people away from seeing the nurse just for registration. I did not mind waiting, there was no rush. After 20 minutes I was called to go in, I requested a private room and the lovely nurse registered me and handed me the buzzer. Anna, at this point was almost at Roswell Park and conveniently arrived moments before my buzzer went off.
The buzzer went off and up I went into the Infusion Center. Unfortunately there was no private room available so they gave me a partitioned room in the corner instead. In I went to sit on my chemo throne with Nik close by me.
I had a new chemo nurse today, she wasn’t too thrilled that I had that many people with me ( my mom, Anna and Nik), but she seemed to let it go. As soon as she came back again, I asked her to page the Genetic Counselor that I had an appointment with at the same time as my chemo appointment so that they can come speak with me in the Infusion center.
There was so much chaos today, everyone was trying to get at me. The nurse needed to have me alone in order to access my medi-port, which requires a sterile environment, we both have to wear a mask when she is accessing it. The Genetic Councilor and her resident were waiting out the curtain along with my guests. When the NP was done, they all filed into my designated area.
Before even meeting the doctor, I know she was European. I didn’t even have to hear her speak, the only thing that gave it away was her shoes. Her beige, pointed toe, strapped stilettos. How happy I felt seeing those shoes :). The meeting lasted about 45 minutes, where we discussed some possible options and some basic genetics (stuffed I learned in med school) regarding my faulty gene. This will seem a little more interesting to anyone who has taken a genetics course. The doctor pulled out a blank sheet of white paper and began drawing a pedigree and drawing the characteristic circles and squares after we answered our family history. HINT HINT, anyone interested in becoming a genetic counselor or working in that field, you better know how to draw a pedigree!!
To sum up my meeting with the Genetics team, I was told that I have several options of prophylactic adjustments. For my breast: the chances of developing a second cancer in my left breast is 60%, I could either get a mastectomy or I can opt for screening two times a year, switching from a breast MRI to a mammogram every six months. Screening usually for high risk patients with the faulty gene does not start until 25 years of age, regardless. Even if I knew I have the faulty gene before my visitor arrived, I would have not received my first mammogram until 25. Still a scary situation. This applies more to my daughters than to me, and even women how do choose to have children naturally with the BRCA1 mutation. Both have advantages and disadvantages, this is a decision that I have to think long and hard about.
For my ovaries, I only have one option: they have to go! The chances of developing ovarian cancer in my lifetime is about 60%. The question is WHEN??? Before I remove my ovaries, I will need to get screened 1-2 times a year. Screening for Ovarian cancer involves a pelvic examination, a transvaginal ultrasound and blood test looking for blood marker CA-125. The blood marker CA-125 is a specific cancer antigen that is found in the blood if there are any cancerous cells related to the ovaries. However, this screening test is not as helpful as the BC screening tests, that is why it is absolutely necessary to have an oophorectomy after child bearing years.
Because I want to have children, my future husband and I will need to decide how we want to conceive. We can either have children now within the next coming years or I can freeze my eggs and do in-vitro fertilization, IVF, and save my eggs for the future. If I choose to have my babies naturally, there is a 50-50% risk of my children getting the mutated gene. More importantly if we have baby girls they would not be able to test for the gene until they are 18 years old, as per the current standard guidelines for high risk females for BC. If my partner and I choose to conceive via IVF than we can choose the embryos that do not have the faulty BRCA1 gene and not worry about the 80% chance of her developing the breast cancer and 60% ovarian cancer. Males with the mutation also have an increased risk of breast cancer but that number is only 8%. What a major difference. Unfortunately, not everything is so clear cut with these options, as with my breast options, there are advantages and disadvantages. As for children, there are other options as well, however these two mentioned look more favorable from my stand point at the current moment.
After the baby question is settled with my future husband, my next decision would be when to get my ovaries removed. In most high risk women ovaries are removed at ages 35-40, but in my case it was suggested that they be removed as early as 30 years old. Shocker. If I were to get my ovaries surgically removed, my body would stop producing estrogen and I would go into menopause and increase my chances of developing osteoporosis, along with other side effects. There is an option of short term hormone therapy with estrogen, but only for a limited time. As you can see, this new discovery of BRCA1 has turned this journey into more decision making process.
Next, the Doctor had to choose who from my parents would get tested first. Virtually no cancer, and no cancer in young age, runs in either my fathers or my mothers side of the family, she recommend that my mom get tested first for the BRCA1 mutation. My sisters, Anna and Natalie, need to be tested as well. They are at at risk the most if my mother is positive. My mother has 2 sisters who have 3 daughters in total, if they find the gene in my mom, it would mean that it is very likely one of her sisters might have the gene as well. The earlier the detection, the better the prognosis! My father on the other hand has one sibling living, his sister and she has two boys. Hopefully she is at less risk.
In conclusion to today’s meeting, there are several options that I have regarding my faulty gene.
- I can choose a mastectomy that will lower my chances of getting BC in my second breast by 90%, without this procedure my risk of getting BC again is 60%.
- I can have biannual breast exams, a breast MRI and a mammogram, this option helps with early detection.
- I will need to get my ovaries removed sometime in the future, but first my partner and I would have to decide how we want to conceive our children natural or IV, until then 1-2 times of OC screening tests.
And with that our meeting concluded! The doctor said something very inspiring to me, she said “You should not live in fear after hearing all of this, you just need to make some adjustments and live your life to the fullest.” I also have to keep in touch with her regarding my case and call once a year to update her with my recovery. She also mentioned that she doesn’t mind hearing about good grades regarding my medical studies.
She is more than right, I cannot, no one should live in fear about statistical numbers that involve thousands of people in their data. Yes, we are part of a global, international and national community but we are also individuals and many people are told they have months to live by doctors based on the statistical information but end up living for decades! I will become old and grey, and look back on this as something that made me even more stronger and more compassionate. I’m sure I will have bad days where I will feel depressed and angry and alone but that will be only a handful of days compared to the days where I will feel great and happy and most importantly blessed. There will also be many days of stress and anxiety, for I am still a medical student!!
After my meeting, my chemo nurse came and proceeded with infusing the toxic drugs into my system. While talking with the Genetics people, I was administered my two anti- nausea drugs and popped an anxiety pill that was prescribed to me, only to find out that it was the generic drug for Ativan, the drug they gave me on my first visit. 🙁 It wasn’t as strong enough, but towards the end of my treatment I was feeling happy and intoxicated. With the last pushes of the syringe that containing the red fluid Adriamycin, I started craving Chipotle, a mexican grill franchise that serves burritos, tacos among other things. This is where I wanted to have lunch!!! When the Adriamycin emptied, the nursed added the Cytotoxan and let it drip for 30 mins until the IV bag emptied and I was done-zo!! Wohoo cycle #2 was OVER!!! I felt great. Loopy and cheery, I felt like I had a few cocktails while sitting in my chemo throne. All that was missing was my crown. The hang over would start in the next coming hours. 🙁
When all was done, we made our way to Chipotle and I had a delicious salad with rice, barbacoa (a beef meat), lettuce, medium salsa, corn, sour cream and cheese with juice… YUM super yummy post-chemo food!!! Everyone else had plain yummy chipotle. 🙂