Treatment Options for BRACA Gene Carriers

So I chewed on the fact that I had the gene for breast and ovarian cancer.  Being a teacher, my principal was the first person I saw when I returned to school from the results meeting.  From his office, he motioned a questioning thumbs up-thumbs down sign, which has symbolized my results all along:  thumbs down that I carry it, but thumbs up that I know and can do something about it.  How many other women would love to be able to find out their potential risk?  MANY, based on the conversations I have had the past nine months.

My mom felt bad, but I told her I had inherited many great genes too.  :) I knew just how she felt, having a daughter myself - and a son, because breast cancer does affect males too!  Currently, my sister and female cousin have not taken the gene test but they are younger and can watch my progress.

My gynecologist referred me to the University of Kansas Cancer Center, which has locations all across the Kansas City metro area.  I was assigned a female oncologist that specializes in hereditary cancers. I've never had a doctor spend so much time with me, of course I have always been very healthy too.  With my husband there, we talked about the potential risks of both ovarian and breast cancer and my options to reduce the risk.

I have to say, just one visit to the Kansas City Cancer Center KCCancerCenter.com helped me make my mind up that I was going to follow through on whatever it took to reduce my chances of developing cancer.  A waiting room full of people ready for chemo is just the trick to make you think about your own path.  I felt safe back at my gynecologist's office where I took the test and received the results; now I was looking cancer in the face - literally.  I tossed my shoulder length hair around as they placed a hospital-style bracelet on my arm.  I wanted to declare "I don't have cancer, this is my real hair and I intend to keep it!"

During that October visit, the oncologist mapped out my family tree and talked about the importance of my sister and our children being tested for the gene.  The good thing is they can specifically look for the genetic marker they found in me, rather than doing the extensive review that was done on my blood sample.  That reduces the cost to about $300 per test.  They would like to test my daughter when she is 18. My sister and my children have a 50% chance of having the gene since their parent does, but like me they will have to decide if they want to know if they are carriers.

The best way to lower my risk of breast cancer  is to have a mastectomy; lowering my risk more than 90%!  In addition to the gene, I have plenty of dense, breast tissue which makes routine screening even more difficult.  I decided to have the surgery early in summer break, so I would have several weeks to recooperate.

To reduce ovarian cancer, the best option is to have a hysterectomy, however for a pre-menopausal woman like myself, you must have the mastectomy first due to hormones. Darn! I was really ready to do that less invasive one first at my local hospital with a physician I knew well, but that was not to be.

In the meantime, my doctor set me up with a screening plan that would be similar for a gene carrier who is wanting to still have children or for whatever reason is waiting to do surgery, etc.  Monthly self exams, quarterly office visits for breast exams by a physician, yearly mammograms, and yearly MRIs- six months after the mammogram.  For ovarian risks, pelvic ultra sounds and the CA125 blood test are given every six months.  These roll around faster than you think and for someone who is not used to doctor visits, I could not see myself continuing this pattern the rest of my life if I had a choice.

My oncologist referred me to a surgeon and plastic surgeon, as I was interested in having reconstructive surgery.  She set up a plan to see me again in three months and gave me plenty of information to share with the rest of my family.  More than anything she assured me this was the BEST option for addressing my risk, especially since we were done having children. This was so reassuring because my regular MD had been so critical, but it would be the endorsements of the surgeons that would convince me this was so doable for me.

Next post: visits with the general and plastic surgeon