If you know of anyone who has ever been diagnosed with a rare breast tumor of any type, could you please contact me? I am building a database for rare breast tumor patients, past and present.
This account of my story is the 'emotional' side of it only. If you want the diagnostic specifics, please read about that here - My Diagnosis. If you would like to read more about AdCC in general, please visit the Adenoid Cystic Carcinoma Website.
In 1993, at age 45, I was doing a routine breast self examination and found a miniscule, solid, lump. I was being seen by a breast specialist for my mammograms because I had fibrocystic breast disease; so I called for an appointment. A standard mammo and needle guided mammo did not reveal the lump. We chose to wait and do a follow up mammogram. The lump did not show up until 1994 on mammography. When the breast specialist reviewed the films, she determined that it was a calcification and told me not to worry. The next year, and every year after that, it grew.
My life was taking a chaotic path in the meantime, so I did not press the issue. My husband was sick on and off for two years and passed away in 1995. My son's fiancé had a cancer crisis in her family and I tried to support them through that and their upcoming marriage. And, I was a live-in caretaker for a good friend who was dying from cancer. I was overwhelmed with the health problems of others. I did not find the time to take care of my own.
Each year I would have a mammo and a fine needle aspiration of that 'calcification'. I was told that everything was okay. My doctor always reviewed the films with me. In 1998, when I went for my routine mammogram, I looked at the films and panicked. I saw that my 'benign' lump was growing arms and legs. A bad sign if it was cancer. (My instincts had been telling me all along that it was and I shared that with the doctor each year.) I asked to have the lump taken out and the doctor, reluctantly, said that she would have someone do that. She still believed it was nothing.
Off I went, with films in hand, to the surgeon. He reviewed the films and tried to talk me out of having the surgery. (After all, a lump this big could not possibly be a cancerous lump without causing me other problems.) I insisted. The surgery was done with a local anesthetic and was painful, but I got through it. I was not shocked when I got the phone call several days later. It was cancer, although it was a very rare cancer that the surgeon and breast specialist had never experienced before - Adenoid Cystic Carcinoma of the breast. And it was large. He did not get clean margins during that first surgery.
Now what should I do? I cried a little, I complained a little, and then I rolled up my sleeves and tried to develop a course of action. My 'attack mode' was not easy with this particular cancer. No one was familiar with it. No one had information on it. No one knew how to treat it. Susan, my daughter-in-law, had done a considerable amount of research on her Mom's cancer online. When I told my kids what was happening, Susan started to do some online research. I also spoke to a local medical librarian at my local hospital. These two people pushed me to get online. Although I had a computer science degree and had worked with computers for years of my life, I had not yet been online and I had not touched a computer in 10 years. I was facing a big learning curve.
This was the beginning of my internet journey. I met some wonderful ladies (and gentlemen) from the Breast Cancer List. I 'lurked' for a long time and finally mustered up the courage to post. My original online post can be found in their archives here. I got moral support from the ladies, but I wanted to find others with my rare cancer. I eventually learned enough to 'connect' with other adenoid cystic carcinoma patients for support. There were very few of us online back then. I had to teach myself how to find medical research on the internet through trial and error.
I argued with the doctors. I turned down treatments I felt were unnecessary and insisted on those I believed I needed. The 'specialist' disagreed with me and could not substantiate their treatment suggestions with research documentation or statistical data. We parted ways. Most of these doctors wanted to treat my cancer as a standard breast cancer, and it was not! I finally found an oncologist who honestly told me that he could not spend his research time on my rare cancer. He needed to spend it on the cancers that would allow him to help the majority of his patients. He did agree to read every piece of research I brought him. With his honesty and cooperation, we came up with the best treatment plan for me, based on my cancer, not someone else's.
I went through multiple lumpectomies, a partial mastectomy, a lymph node dissection, an exploratory surgery for a lump in the other breast, 37 high dose radiation treatments, and a plastic surgery reconstruction over the next two years. I did this alone, with no family or help from others (they all lived a long distance from me). I was very sick after so many surgeries and the radiation treatments made me tired. On some days, I lost hope and the will to keep going. It was not easy, but it was the journey I had personally chosen. I knew that I was either going to live or die, but I would be responsible for either outcome .I felt empowered because I made these choices. I think that helped me to stay strong through it all.
This entire process changed my life dramatically. I quickly showed my fighting nature to my online friends and they used that. They put me to work as a volunteer. Over the next several years, I migrated from volunteer position to volunteer coordinator to website author. I did volunteer work for several online organizations, but always had an angst in my heart for the rare cancer community. We were (and still are) underserved, misunderstood, often misdiagnosed, and sometimes treated with inappropriate treatments.
I polished up my computer skills and set to work. I created a website for my own rare cancer, in all body sites. I chose to create the site you are now visiting for all rare cancers and freely share the information and knowledge that I had accumulated over the years. I was asked to expand the site to include pediatric cancers and borderline tumors that have a potential for becoming cancerous. I can honestly say that the work required to maintain and enhance this website is overwhelming. Although the website still requires a lot of work to be of maximum benefit to everyone, the hours are extremely long and the 'to do' list is even longer. I have had no luck in finding volunteers that are willing to put some effort and time into it.
Take Care, Sharon
To help me, you could distribute a flyer, donate your time, become a survivor volunteer, let us know about your research fund or fundraising efforts or donate to these efforts, share your story with us, donate a portion of the sale of your personal items to our research efforts, submit upcoming events.