I remember being newly diagnosed and wanting to hear every cancer story from each survivor that I met. I did a lot of reading and I tried to talk to other patients who seemed willing to share their journey with me. I don't know if this is too much information or not enough. But, if you or someone you know is newly diagnosed, feel free to share this with him or her. Also feel free to have them contact me if they have other questions that I may be able to answer. I am not a doctor, I cannot give any medical advice. I can just share my experiences and hope that they can help someone else anticipate possible steps they may face.
My case goes something like this:
My original diagnosis was in September 2003; I was 28, brad and I had been married for 14 months & Trent was a baby. I found a lump while I was pregnant, but the doctors told me it was nothing and it was typical for a new mother to have lumps and bumps. I pointed it out when I went to all those prenatal appointments and two of them took me serious enough to examine it before they told me, it was nothing. By the time I was persistent enough to demand a mamogram, Trent was three months old and the tumor had already spread to my lymph nodes under my arm. I was diagnosed as a stage 3 and the biopsy showed that my tumor was Estrogen positive.
The general surgeon that did my biopsy started said his office would contact me with a surgery date. My mom had lost her battle with cancer nine months before my diagnosis so I had a little schooling on cancer. I asked him how many other 20-something breast cancer patients he had ever seen. When he told me that he thought someone in his practice has seen a woman in her mid thirties a few months ago, I started to get nervous. I also told the surgeon that I would feel more comfortable if I could see a medical oncologist before I had surgery. He refused andtold me that wasn't the way they did things there. I told him I would be by the next morning to pick up my records. And, the next day I got my records and went to the hospital and picked up my films from Winchester Medical Center. I called Hopkins and met the director of the Breast Cancer Center and "interviewed" a few doctors there. Although I totally agree that there are great doctors everywhere, at the time (and still now) Johns Hopkins is where I belong.
After scans to be sure the cancer had not spread outside of the tumor (which was about the size of a chicken egg) and lymph nodes, I began chemotherapy. I had Adriamycin/Cytoxan (AC), four rounds every other week; then Taxol, four rounds every other week. During my eight weeks of AC, I felt tired and sick. Almost like I had the flu. The taxol made my bones ache. I also gave myself Neupogen shots to help out my white count so I could keep up with the chemo schedule. At the time, chemo before surgery was a cutting-edge method of treating breast cancer, it is now the norm for many cancers. Brad and I marveled as the chemo shrunk the tumor to almost nothing.
A few weeks after the completion of my chemo I had a mastectomy and lymph node removal. Never having surgery, I was too scared to have the tram flap reconstruction and opted for a saline implant instead. During my mastectomy, the plastic surgeon placed in an expander which would later be replaced with the actual implant.
After healing from the surgery I had 5 weeks of radiation on my chest wall. I was on a drug called Tamoxifen (an Aromatase inhibitor that blocks the bodys ability to make estrogen) for two years then I stopped and got pregnant with my second son, Ian. When Ian was a few months old, I resumed the Tamoxifen.
In May 2008, Ian was 16 months old and I was almost 5 years from my original diagnosis when the cancer came back. This time it was in my left femur, right pelvis, and I had a spot on my rib. I was now a stage 4 cancer patient. My oncologist explained that I would always have cancer, but that there are many treatment options available. I met a fabulous radiation oncologist in Martinsburg and received daily radiation on my right pelvis. My orthopedic oncologist at Hopkins put a rod down through the center of my femur to keep it from breaking, then I received radiation on the femur. I also had my ovaries removed. They changed my Tamoxifen to Femara (another Aromatase inhibitor) daily pills.
Things were quiet until October 2010 when I suddenly started feeling this weird pressure fluctuation in my head. I got dizzy one day with this weird sensation and threw up at work. The sensation in my head was caused by a brain tumor and when I threw up, the force fractured my left pelvis where I had a lesion. My oncologist introduced me to a very talented brain surgeon and the brain tumor was removed without issue. I received a very targeted radiation at Hopkins, then an MRI revealed that there was cancer in the lining around my brain so I was given total brain radiation. Healing the pelvis required a lot of sitting and after the brain surgery, I was diagnosed with a blood clot in my leg. I was in the hospital for a week while they gave me an IV drip to resolve the issue. After a lot of rest and patience, my pelvis got gradually stronger and I was able to go from a wheelchair to a walker to a cane. They didn't think I would walk again but I returned my wheelchair in the spring.
I then began taking a pill form of chemotherapy called Xeloda. It was very convienent to take at home, but it was very hard on my stomach and for the first time in my life I felt like food was my enemy. During that treatment I pointed out to my doctors that my shoulder was getting sore. A scan revealed several lesions that were quickly healed by radiation. This past summer I had another incident. I was walking down the hall at work when pain shot down my leg and I started losing feeling in my thigh. Turns out a little lesion on my spine was irritating the nerve that sends signals to my leg. Again, so radiation cleared up the lesion and it was gone.
My latest trick was the fluid around my heart which called for a life flight to my oncologist at Hopkins. That was in the beginning of November of 2011. But, they drained the fluid, put in a pericardial window, left a drain tube in my chest for a few weeks, got me all patched up, and sent me home. They changed me to a chemo drip called Eribulin and put in a port. I love the port and it is working so much better than getting stuck in my one good arm all the time! We are trying to find a chemo schedule that my body can tolerate. I am still giving myself blood thinner shots twice a day and will be adding Neupogen again to try to help my white count keep up with the schedule.
Last week I found out that the reason my right arm doesn't work right is that there is a tumor on my forearm and maybe a fracture. My doctor was shocked as she had explained that people don't get 'arm cancer' as she was writing the script for the x-ray. Yeah....apparently I'm the only one who gets arm cancer. LOL! So, we will look into that in the coming weeks.
WOW. That was a lot. If you found it long and boring; I am sorry. If you are working through cancer and need more specifics; let me know. To Dad and my bestest friend Aly - I know you will remember things that I forgot. One thing to remember about all of this is that my family and I have been doing this for 8 1/2 years. I have still been a wife, mother, daughter, sister and friend. There are days I go to bed and I know I could have done better, but like everyone else in this world I just try to do my best. If you are a survivor, you can do it. Sometimes we have had to work life around cancer and sometimes we have had to work cancer around our lives. Find a doctor YOU feel good about and keep moving forward!
