I do not have metastatic breast cancer (MBC). In March 2010 at age 62 I was diagnosed with early stage breast cancer. A routine mammogram showed what appeared to be DCIS in my right breast. After further diagnostic tests and consultations with three different surgeons, I had a right mastectomy and opted for a prophylactic left mastectomy. Upon tissue analysis of my cancerous right breast, my diagnosis was revised to invasive breast cancer, Stage 1. My oncologist tells me that based on my diagnostic tests, tissue analysis and treatment choice, I have less than a 2% risk of recurrence. I currently take no medication and have oncology visits every 6 months.
So, in the absence of having metastases, why would I have an interest in volunteering with MBCN? That was Joani’s question to me after mentioning that I was the first volunteer with whom she spoke who did not have metastases and who wanted to volunteer with MBCN. I must admit that I was rather surprised to hear that because I learned, through the links of MBCN, that as many as 30% of all women diagnosed with early breast cancer will develop metastatic cancer. One needs only to read the biographies of two MBCN Board Members, Ginny Knackmuhs and Shirley Mertz, to see that DCIS, Stage 0, reported by some in the medical community as 100% curable, is not excluded. No one diagnosed with early stage breast cancer is safe from MBC. So, it is for very personal reasons that I would like to contribute my time to this organization to help create a greater awareness of MBC and hopefully generate an interest for more funding to study the complexities of metastatic cancer.
Most importantly, I want to offer my support to the amazing women whose stories I have read on the MBCN website in both the ‘Your Stories’ section and the ‘Board of Directors’ section. The courage and strength of these women and all women and men living with MBC is truly inspirational to me. For those having metastases, every day is filled with the worries of diagnostic procedures and outcomes, treatment choices, the effects of the emotional rollercoaster, and the successful management of everyday family life. These are difficult challenges faced by individuals every minute of every day.
Although I don’t have MBC, I still feel a kinship with the women and men of MBCN as I feel a kinship with all individuals having breast cancer. I have often said that those of us who have breast cancer are lifetime members of a very special, unique ‘club’ where the camaraderie is unparalleled, yet no one wants to join. The strength of this bond is very visible throughout the history of MBCN and it is my honor to volunteer my time for this organization.
Thank you so very much for your volunteer work!!!! I was diagnosed in 1993, same rountine as you except I did not have the left prophylactic until later. I was told at the time I had a 5% chance of recurrance. What do doctors know??? Had a local recur in 2002, 2003 had the left proph, 2010 met to spine, 2012 mets to adrenaline gland. In between in 2007 had right nephrectomy due to renal cell carcinoma. The great news is the adrenaline mets is so very tiny I do not even have to change treatment right now and my tumor markers have gone way back down. Besides I have a great husband who has taken care of me all this while and a great bunch of kids and friends. And that’s the important things!!!!!