My Story

Discovery of the “Lump”
The Day of Tests
The Diagnosis

Discovery of the “Lump”

I was just entering my final semester in Medical School before starting rotations. I was on top of the world, working out 3-4 times a week and preparing for the new semester. Finally my time management skills were in full play and well managed. It was already a week or two into the semester when I discovered my lump.

The night I discovered the lump I had came home from the gym, showered then went to study at my desk in the attic. Sitting in front of my laptop studying pharmacology, I stretched my arms back, and felt a striking, pulling tension in the right breast. Not comprehending where or why this pain was coming from I continued studying. However, after an hour or so, sitting there and studying, the pain was radiating throughout my entire breast. This burning tension would not go away! That’s when I decided to investigate.

It was the end of February; I remember the time exactly because that is when my monthly gym membership was up for renewal. I began the nerve wrecking task of palpating my breast to look for the culprit of the pain. It was not hard to find. To my horror, I discovered a hard, smooth lump in the upper right quadrant of my right breast, the size of a long grape. My first reaction was shock, followed by immediate worry. Breast Cancer never came into mind. “I’m a young woman, 23 at the time, there are a lot of other things that can be going on” Is what I thought to myself.

As soon as I discovered the lump, I ran to my sister who was downstairs in her room and told her to immediately palpate what I had found. She’s had some bumps and lumps in her breast before so I knew we could compare. Having a lump or feeling a bump in the breast does not always mean its cancer. In fact there are many different types of lumps that can be discovered before, during or after the menstrual cycle.

Googling was my next step. I typed in “Hard painful, smooth mass in breast” in the Google search bar. The first thing that popped up was “fibroadenoma”. But from what I read on the websites, fibroadenomas were more common in women in menopause and some 30-40s year olds. As you can see I am neither in my 30’s nor 40’s, nor am I in menopause. But in medicine not everything is black and white. There are variations in everything. So I was not worried. If it is a fibroadenoma, or a cyst, it will be easily removed or it will go away on its own. I’m a young healthy woman with a healthy, active lifestyle. It was as simple as that for me.

A few days later, I decided to tell my parents about my newly discovered lump and my boyfriend. My parents did not seem too worried, my father was a gynecologist in the Soviet Union so a few lumps and bumps were common in young women. My boyfriend was worried but he had already googled everything and told me what the procedure would be like. “Fine needle aspiration and its out!” He said to me. Whatever was to happen, I had to go home where I have insurance, and my mom to take care of me if any procedures were to take place.

I later told my two girlfriends in Poland about my new discovery, they were a lot more worried than I but I assured them it was nothing too serious. At this point I stopped going to my aerobic classes since the classes required a lot of upper bodywork, like push-ups and working with dumb bells. Studying was still going smoothly :).

The pain radiating in my breast was constant. I was popping Advil or Ibuprofen 3 times daily just to numb the pain. Sleeping at night was uncomfortable; my favorite spot to sleep on was on my right side. That was no longer a go.

Coincidently, that following Saturday I had a lecture in Pathomorphology about the Breast. The professor talked about fibroadenomas, cysts and other lumps that can be found. He then went into the topic of Breast Cancer, the topic that never crossed my mind.

After researching some more through Google, breast cancer tumors are commonly painless, hard and not smooth.. Fibroadenomas on the other hand are smooth, painful and moveable under the tissue. That all I applied to myself.

Still feeling uneasy about this painful lump, I decided to make an appointment to a breast surgeon in Katowice, Poland to see what his recommendation would be. Of course, the doctor looked worried and recommended that I either get a biopsy or he would remove the lump and later would find out the histopathology. The doctor performed an Ultrasound on me and located a possible fibroadenoma at the 10 o’clock position. It was 30 mm in length.

ultrasound

My sonogram from the breast surgeon in Poland.

A few days after the doctors appointment I booked my plane ticket home so I can see a specialist in my hometown of Buffalo, NY. The timing was perfect. It was Easter Break in Poland and I had 10 days off to do everything I needed to, so that I could be freed from the “lump” in my road. My journey home was long.

The flight from Frankfurt was packed. My lump was constantly giving me a burning sensation, and if I picked up something heavy or stretch the wrong way, it was a horrible striking pain. In good spirits, I was even studying during the plane ride. I also decided to relax on my plane ride and have a spa session by putting on a mask to hydrate my skin from the 9-hour flight. People must have thought I was crazy sitting there with eye patches under my eyes. Silly girl.

I arrived in Toronto at 9 pm and the same night drove to Buffalo with my mom. The next morning I had an appointment with Windsong Radiology for a mammogram, ultrasound and possible core biopsy. The test results that would change my life forever…

KTW- FRK

My flight home from Katowice, Poland

The Day of Tests

The next morning, on March 27,  I woke up early to make my 8:30 am appointment at Windsong Radiology. My father, mother and I packed into the car and made our way over to Williamsville, NY. It was about a 25 minute ride over. I checked in with the receptionist downstairs and was directed to go upstairs to the second floor for my mammogram and ultrasound. Walking up the stairs, I felt so relaxed. The building looked so spa-ish. Nice calming colors, and a spacious waiting room. I had to register with the nurses on site and then was taken into the back into another waiting room, my mother accompanied me while my poor dad stayed outside in the waiting room for the next three hours.

I met my nurse and was asked to take off my top and change into a robe with the opening facing the back. There were many women in the waiting room waiting for their routine mammograms, I felt so out of place. After quite some time, the ultrasound technician came and we headed into the sonogram room. Everything felt routine, nothing abnormal mentioned by the sonogram technician.  I can tell you that any move on my lump was the most painful feeling ever. The last time I felt that pain was when I was in the Polish doctors office. Just thinking about it now makes me cringe.

After finishing with the ultrasound next was the mammogram. Oh my god, I never imagined such a painful examination method of looking for breast cancer. My breasts are already so small I did not think that they could be squeezed by that nasty machine. The second I felt the squeeze of that 20 million ton machine I yelped!!! My lump was right under it, being squeezed out like a white head in a pimple. I swear it was going to come out of my nipple. And I had to pray that the shot they got was good enough to use. With my luck, the right breast had to be redone at a slight angle. My goodness, did my mood change after that exam. What was all of this for? I thought to myself. Something isn’t right, I don’t need all these stupid tests!

Walking out of the grueling mammogram, I ran to my mother who was waiting for me in the waiting room. I felt so violated, so abused :(. But of course this needed to be done and once more I was able to move forward.

The radiologist called my parents and I in to her office to tell us that I had dense breast tissue in my breast which was quite normal for my age and size of my breast. Also the lump did appear to be a fibroadenoma. Next all was needed Core-needle Biopsy.

I had to go into another waiting room, this time my mom and I were the only ones in this little room. We watched a movie about the procedure I was about to get. I must admit I was pretty nervous. Know that a massive needle was going into my breast made me anxious. This would be my first invasive procedure, in all of my 23 years.  My mom was asked to leave and I was taken into the room where the biopsy would take place. I waited a few minutes before the nurse and doctor came in, to put me up on the table.

The nurse located the tumor, the doctor came in and the procedure was in full effect. He quickly injected the site of the incision with lidocaine to make sure I was well numbed. He seemed like a nice man. Even guessed that I was from Ukraine, based on my name. I was so surprised. I have a Russian name and anytime anyone can say I’m Ukrainian, well I just get excited.

I heard two clicks and that was that. The procedure was over. The doctor took out the needle and quickly put pressure on the incision site to start a clot. Another nurse took over and the doctor was gone. And there I was on the table with my poor boob violated and bleeding. I felt so bad for myself. But what could I do? This was for the best.

So after four hours of waiting and test taking, my patient parents and I were able to leave and go have lunch.

And that was that. My day of grueling tests were done. Now for the results…..

The Diagnosis

April 1, 2013, Happy April Fools Day!!! Too bad, there was no “just kidding” at the end when the doctor told me my diagnosis. Early in the Morning we packed into my Hyundai to go to the Breast Surgeon to discuss the results of my tests that I took the Wednesday before. In the waiting area, my whole family was there along with my boyfriend. Still at the time and given the fact that they were all there, it never occurred to me that I could have this diagnosis. We had to wait a few minutes before we could see the doctor, because my father was coming straight from work, he was on-call the night before. My father arrived and we were asked to go into the room in the back. I sat down on the examination table, undressed only the top and put on a gown. The doctor walked in and took a seat. I was expecting to hear that I had a fibroadenoma that was benign and a simple lumpectomy would do the trick. I was wrong.

I specifically wore my prescription glasses to the doctors appointment that day and no make-up, just in case there would be tears. And I made a right decision. The nurse knocked on the door and handed the doctor my results. My doctor opened them, but before breaking the news she first asked what we heard from the doctor who performed the core biospy.

We replied with “nothing specific”. Although my parents, siblings and boyfriend knew ahead of time.

Then the words came out of her mouth “It is breast cancer.” I was diagnosed with a Her-2 positive breast cancer, stage 2 grade 3. Stage 2: Meaning that there are is no lymph nodes involvement, no metastases. Grade 3: highly undifferentiated cells, meaning that the cells in this tumor did not resemble the normal breast tissue, instead they did not look like any cells just a big mess, no organization.

I was ER/PR neg and HER-2 positive. ER/PR negative means that the tumor was not giving off receptors that would have a lock and key mechanism with my hormones, estrogen nor progesterone. HER-2 positive means that the receptors on this tumor were feeding off epidermal growth factor. The latter is more aggressive with a worse prognosis. And that was the diagnosis that I received based off my core biopsy. Later, after my mastectomy the diagnosis would slightly change.

I sat there in disbelief, first trying to absorb the absurd information coming at me. Then the tears came, I tried to hold then back as much as I could but I was too weak. My mother quickly ran to me to console me. All that was going through my head was the word “CANCER”. “But how can it be? I am so young this isn’t right”. I thought to myself.

My next thought was dying at a young age. From what I have learned in my first two years of medical school is that cancer, especially at a young age (30’s) was only typical in women who have a family history of the cancer. There is absolutely no one in my family history that has any breast cancer, let alone cancer at a young age. I was in disbelief, tears were flowing, my head was swelling and aching, I could barely hold it up right. Then my sisters came in to hear from the doctor my diagnosis, although they already had an idea of what could be said, it’s a lot different when hearing and seeing the reaction of the loved one.

My father had to leave for work and as he left he called my boyfriend, Nikita, to come into the room. Nik  came to see me from New York City for the few days that I arrived for my initial tests. That day he would rebook he departing date to a few days later given the circumstances. We were all in the room, some standing some sitting, in shock and disbelief.

The doctor’s office immediately made an appointment for me to see the team’s Medical Oncologist, the appointment was in an hour after we finished with the breast surgeon. She also recommended that I take a genetics test in her office to test for the BRCA1 and BRCA2 mutations, in case it was hereditary (passed on from the parents). I was given a few options of treatment. One was either a lumpectomy or a mastectomy, followed by chemotherapy or chemotherapy first then the lumpectomy/mastectomy. The latter is a new form of treatment called Adjuvant Chemotherapy.

With all that said, I some how managed to stand on my feet and go downstairs for my next appointment to see the Oncologist at Windsong Radiology in Williamsville, NY. Billy, Natalie’s fiance would meet us in the oncologists office.

The medical oncologist was an older gentlemen who looked smart. He performed a typical physical examination of my breast and the surrounding lymph nodes and also listened to my heart and lungs. He felt a swollen lymph node in my right axilla, from where the breast cancer tumor was located. The swelling could have been due to inflammation from my Core biopsy from early last week or a metastasis. A metastasis would not be in my favor, in fact it would have been more aggressive and if my axillary lymph node was involved then the prognosis would be worse. My diagnosis would change from a Stage 2 to a Stage 3.

The doctor highly recommended that I see another specialist, one in Roswell Park Cancer Institute that specifically deals with breast cancer and had younger female patients. In fact, he had his nurse make an appointment for me that same week to see the other medical oncologist at RPCI. He also ordered for me to get a a medi-port placed in so that the chemotherapy drugs would be administered into the port instead of my veins. That would have been done on Friday April 5, 4 days after my initial diagnosis, at the Gates Vascular Institue in Buffalo, NY. I was also referred to have an PET CT scan the next day which would look for any increase metabolic activity in my body that would be suggestive of cancer, it can also provide a clue for any unseen metastases missed by the Breast MRI I had done over the weekend. Finally he schedule a MUGA test which looks at my whole heart because one of the Chemotherapy drugs can damage my heart and have life long side effect, the chance of that happening is about 1%.

We discussed several options of treatment, as stated earlier. The doctor himself was keen on starting the adjuvant chemotherapy which meant having the chemotherapy first to allow the tumor to shrink and then to have a lumpectomy. This treatment versus a mastectomy, does not show any major differences in prognosis thanks to many research studies about these two particular procedures for breast cancer. The doctor also informed me that every Monday, Windsong holds a seminar for people newly diagnosed with breast cancer, where the whole Breast Team would sit in on a panel discussion group and introduce themselves and provvide some details to their work. My family and I agreed that it would be a good idea for us to go that same Monday and see what was to come ahead of us on this new journey. With all of the new information I had received today, my brain had stopped working. I had no questions, I could barely keep my head up and I could barely put a smile on my face. The tears seemed to dry out by the afternoon but I constantly felt as though I would leash out a river by a slightest bad thought. I felt empty.

We left Windsong radiology and went to lunch at Black&Blue, a seafood place. Then we went home, sent Billy and Natalie back to Toronto. My mother, Anna, Nikita and I went to the Wingsong Radiology Breast Cancer seminar. There we heard from all the doctors that would be involved in my care or anyone who is going through this disease. We heard from the Radiologist, the Breast Surgeon, the Oncologist, the Psychologist and the Breast Resource representative and the nutritionist. All questions were answered that other patients and thier families had.  While we were sitting in the Breast seminar listening to the professionals talk about their jobs and duty, a major snow storm broke out. The sun was still shining.  Sandwiches, beverages, and cookies were provides for us. I was in no mood to ask any questions or talk to anyone there, I also did not want to go and pick up any pamphlets. My mind was already filled with so many thoughts that I could not fit anything else. Nikita and my mom stayed with me, while Anna went up and asked all the questions and picked up the necessary pamphlets. The nurses at the seminar came up to me and sent me their best wishes and also told me that it was a good idea that I showed up today. My next appointment with the oncologists at the Windsong building was a week from the first day I met him.

After we finished with the seminar, Anna was sent back to Toronto to feed her babies and husband. My mom, Nik and I on the other hand made our way back home to tell my dad all about our day.

This is how I first learned about my diagnosis. I have cancer and I felt every stigma that the word has. Getting cancer at such a young age, really scared me. The chances of reoccurrence must be great I thought to myself. How long from now until the next one pops up? At the seminar, the nurses and doctors asked us to abstain from googling anything regarding our diagnosis, instead they provided one website to look at. It was the NCCN.org, the National Comprehensive Cancer Network which is an evidence based cancer website, meaning that most of the information on this website is research based. I complied with the advise of the professionals and did not look anything up on the internet. I decided that I would hear the best information from my doctors.

on April 4, 2013 I went to see the Medical Oncologist at Roswell Park Cancer Institute who specifically deals with breast cancer patients. Funny enough, I was a volunteer at RPCI a few summers ago. I would have never thought, in a million years, that I would be going there as a patient. It wasn’t  a happy feeling.

As always, all of my family was present for this appointment. My parents, my sisters and our partners. I was taken to an examination room to have my vitals checked, weighed and asked about any serious illnesses and my medication list. I am a healthy 24 year old with no serious health illnesses, no allergies, and I have no med list.

The doctor did a physical exam of my breasts and my lymph nodes. She also palpated my abdomen since the results from my PET CT scan that I took earlier in the week showed some metabolic activity in my abdomen.  That was a concern. Also while palpating under my armpit, the doctor felt a lymph node enlargement. That gave her some concern as well, considering the size of my tumor it would not be surprising that the cancer had spread to my lymph nodes. She then took my train of support and I into a room with chairs where we could all talk about my options. She also stressed that I get a second opinion from another breast surgeon.

While talking with my family and I, the doctor went over my diagnosis and what it means. Basically everything that I explained earlier. Her medical opinion was the I get surgery first, then chemo. Specially a mastectomy. Being a doctor at RPCI, there was a study that I could be part of, specially a research study for the treatment of HER2 positive breast cancer patients that indeed had the lymph node involvement with a new drug that is used to treat metastases. If I were to choose the mastectomy and her as my medical oncologist, I would know if I qualify for the research study after my mastectomy.

During the discussion, we could all tell that she was extremely worried about my diagnosis. My age, the size of  the tumor and possible lymph node involvement would drastically change my prognosis. The oncologist was also able to have the breast surgeon come in and look at me. Earlier he performed the same physical exam on my breast and later my family and I saw him in the conference room. He blatantly stated that I need to get a mastectomy and that I would very unlikely find a surgeon who would perform a lumpectomy on me based on the size of my tumor in relation to the size of my breast. Thats right folks, although the tumor was extremely big, I still have a small breast size and if they were to perform a lumpectomy then 1/4 of breast would be gone.

I guess with all that being said, I choose to stick with the RPCI breast cancer team and have my treatment there. I agreed to the mastectomy and would wait to hear for my appointment. The breast Clinic at RPCI is extremely busy and booking an appointment to be seen by a doctor may take several weeks. However, given the severity of my breast cancer the doctors wanted to help and see my case. It is very unusual and extremely rare for a woman my age to develop breast cancer, it being sporadic or due to the BRCA1 mutation. At the time of my diagnosis it was unclear how or why I got this cancer, and unless the genetic results came positive with the BRCA1 or BRCA2 mutations, we would never find out why.