Part one – Stage 0-I
I remember it vividly. It was late July, 2007, and a few days earlier I had had my annual mammogram, and now my OB/GYN was on the phone telling me that something was looking a little suspicious on my mammogram. He said that an MRI was needed just to make sure everything was OK. I didn’t know what to think or say; there I was packed and ready to walk out the door with my husband and four daughters for the Carnival Cruise Ship that was leaving New York City in just a few hours. I told the doctor that we were on our way out and he said “Oh don’t worry about it, just go on your vacation and have a great time. Don’t think about it much but call me when you get back.” I got to admit, I was a little stunned. I told Vinny (my husband) what the doctor said and since he said not to worry; out the door we went to go embark the cruise ship.
The cruise took us to the Eastern Caribbean Islands and we enjoyed the beaches, the ship, its food and entertainment. However, the question “what if” kept popping up in my mind throughout the week. I didn’t know of anyone in my family that had ever been diagnosed with breast cancer, so why would I be the first one? I did my best to not worry about it but; needless to say, it was on my mind.
Back home I called my doctor and scheduled the MRI. The MRI confirmed that there were “micro calcifications in clusters” in my left breast. We needed to find out if they were malignant so a biopsy was scheduled. I had my biopsy performed on September 24th 2007 at a local hospital. Two days later I was going to get my results over the phone at 1:00PM. By that time, I had searched the internet and found out that 80% of all micro calcifications are benign so I felt sure that this was just like the doctor had said; nothing to worry about. Vinny had come home from work to be there when the phone call came in. So, at 1:10PM the doctor was on the phone. She just came right out and said it; Karin, it is cancer! I don’t remember anything else she said, because after those words; my whole world crumbled.
I couldn’t let myself break down; I had to keep it together for the girls. Luckily, I was working at the local hospital and was friends with an oncology nurse and with the oncologist. Within minutes I was on the phone with my friend nurse Nancy and told her about the news. She had told Dr Ruiz (the Oncologist) that I was to get my results this day and he said that if the results were bad, I could call him at home. I did call Dr Ruiz that evening and this wonderful man spent almost two hours with me on the phone. I didn’t have much information about the type of cancer I had since I didn’t hear much of what the pathologist had said. However, he covered the most likely scenario I’d have to face. He was right, my cancer was ductal carcinoma in-situ, Stage 1, which was considered early stage and very curable. Dr Ruiz got me in with a breast surgeon and the following week Vinny and I were in his office. He discussed the different surgery options. There were several clusters of micro calcifications in the breast so a rather large part of the breast would need to be removed. I could have a lumpectomy or I could opt for a total mastectomy. I didn’t need much time to decide, I wanted everything out, so a mastectomy was my first and only choice. A few days later while sitting together at the dinner table we broke the news to our girls. It was heart breaking seeing their pretty faces so sad and worried. We assured them that the cancer was caught early and the doctor had said I was going to be fine. At ages 15,13,11 and 8, hearing that their Mother has breast cancer, and must have her breast removed is a scary thing. However, they dealt with it pretty well and they all made excellent home care nurses.
On November 7th, 2007 I had my mastectomy and 10 days later, just before my 46th birthday I went in for my breast reconstruction, which was a Tram-Flap (a procedure where they use your abdominal muscles to create a new breast). While recovering at home my husband and my four young daughters were at my bedside day and night and took care of me and made sure I had everything I needed. I waited anxiously for the pathology results of my mastectomy. During a follow-up visit with my surgeon a couple of weeks after my surgery; the path report was in. During my mastectomy four lymph nodes were removed including the sentinel lymph node and they showed no signs of cancer and the breast tissue came back with clear margins except for one area that they called micro invasive, it was barely 2.8mm and believe me that is tiny, but that made my cancer Stage 1. I was told that they got it all and I would not need any chemo or radiation. Due to a history of recurrent deep vein thrombosis (DVT) the medical oncologist that I had made an appointment with did not think AI’s or Hormone blockers were good options for me. Subsequently, I was declared cured of cancer and I was thrilled and couldn’t wait to get back to work and to move on with my life. The recovery from my reconstruction was long and painful and it took about 10 weeks before I could go back to work but I felt strong and proud; I BEAT CANCER!
Part Two – Stage 4
In the spring of 2012, just a few months before my five-year mark, I was experiencing severe pain in my left arm and had some swelling in my armpit and left upper arm. Several tests and scans later I was diagnosed with Metastatic Breast Cancer. Metastatic breast cancer, also known as MBC, stage IV or Advanced Breast Cancer, is cancer that has spread beyond the breast, and it has no cure. The most common sites of metastases are the bones, lungs, liver and brain. My cancer was found in my lymph nodes, pectoral muscle, chest wall and lung. My treatment was aggressive with two different chemo drugs every three weeks and Herceptin infusions weekly for 18 weeks, and after that I got a Herceptin infusion every 3 weeks. After my 6 rounds chemo, I had 28 radiation treatments to my chest area. The treatments are tough, I lost my hair, slept for days after treatments and got a burn on my chest from radiation. Ultimately, it was worth the discomfort because it gave me 4 more years of time to live, love and enjoy life….
After over 4 years of different hormone blockers and Herceptin the cancer figured out a way to outsmart the treatments and grew rapidly in my lungs and showed up in my liver. Once again I was treated with Chemo and Radiation to stop the progression. After a few months of weekly treatments, I was stable. Stable means that there’s no new cancer growth, yay for me. However, I still had to stay on treatments and this time I started Ibrance and Faslodex treatments. The side effects were miserable, with constant fatigue, shortness of breath, mouth sores, weakness in legs and arms and other nasty side effects that I'd rather not mention.
18 months after starting the new drugs (July of 2018), I was again faced with progression. This time my liver showed more that 14 lesions in my liver and a few in my lungs and lymph, and they were growing rapidly. Once again I was faced with IV chemo and it was really taken a toll on me but you do what it takes to get out of bed every day and go on with your life. I knew my new treatment wasn't going to work forever and for sure, in April 2019 progression occurred once again. Now it showed up in the liver, and in my retroperitoneal lymph nodes (abdominal cavity). Since I've been on so many traditional chemo treatments it is difficult to find new promising drugs that wont disable me with its side effects. Therefore, I was offered to join a clinical trial in Sarasota Florida. It is a drug that is pretty kind on my body and though it is still a trial drug, it has shown to work for some patients with my type of breast cancer so I'm hopeful. This is not a drug that is expected to cure my cancer but hopefully extend my life and its quality.
Consequently, while living with MBC, every day is a struggle. My days and weeks consist of endless treatments, scans, procedures and fear. There is fear that treatments will stop working, and thus, I will exhaust all available treatment options which will ultimately lead to my death. I don’t know when I will die but I do know that I have lived longer than the average person since diagnosis. The average survival from date of Metastatic BC diagnosis is only 33 months.
Despite all you hear about how far we have come in treating cancer, over 40,000 people still die from breast cancer every year. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The spread of cancerous cells to a vital organ is what kills. Women of all ages are diagnosed with MBC. I recently met a woman that was just 23 when diagnosed!!!
A diagnosis of MBC means you are on treatment forever...An estimated 155,000 people are living with MBC in the US. It is a well-known fact that MBC patients live for three months at a time and we all live a SCAN,TREAT & REPEAT kind of life!!
Quality of life is an important aspect for people living with MBC; it is a balancing act in a way. The quality of life is to me, just as important as staying alive. What kind of life would it be if one can’t walk or move without severe pain? I can easily tolerate some pain, but if it is severely affecting how I live my daily life, it just isn’t worth it! Due to the side effects, I had to stop working, and I miss that part of my life a lot. Before my MBC diagnosis I truly enjoyed going for a run. I used to run 4-6 miles 3-4 times/week and I loved it. It was my way to de-stress and collect my thoughts after a long day at work. Since my dx, I’m happy with completing a very short walk. Now, I try to spend my days doing what I enjoy the most; spending time with family, sitting in the sun (that’s easy; I live in Florida), watching the sunset, socializing with friends etc. I’m not complaining, Life is Good!
I might not have a lot of time, but I do have HOPE. My hope is that Metavivor will achieve their goal and transition this disease from a terminal disease to a controlled, permanently survivable condition, with a decent quality of life. However, that can only happen with more research, and we need more than the 4% of all funds raised by Breast Cancer Organizations we are currently receiving. 30% of all early breast cancers will eventually come back as MBC, therefore, we need a minimum of 30% of all funds for research.
Love and Blessings to all,