Testing out the waters of a new marriage – discussing possible mastectomy

Just Married


wedding day

Although we have been together for many years, we just tied the knot this past summer and made it official.  My new husband is well aware of my family history of breast cancer.  He was also aware of my deep desire to have a breast reduction.  And he swears up and down his main attraction to me is not my large breasts and he is perfectly fine with me making them more comfortable for me to carry around.  Thus started this whole ordeal with muddling over a preventative mastectomy.  Prior to seeing my chosen surgeon for the breast reduction, I ordered a genetic test that would rule me out from carrying any mutated genes suggesting I was at risk for breast cancer.  The company was recommended to me by another breast surgeon that I had seen.  It was called “Color”.  They did a really good job of reporting my test results and they have a really informative website that you can even fax over their reports to your own provider.  I went ahead and did these tests because I wanted to make sure I had the information ready to discuss with my surgeon that was going to do my breast reduction.  But the big surprise was that it actually came back with results indicating I carried some sort of mutated gene.  It was not the commonly known genetic mutations that occur with BRCA1 and BRCA2.  As a matter of fact this genetic mutation has not been as well known and researched as the before mentioned genetic mutations.  The one that I came back positive for is called the Chek2 genetic mutation.  Much less is known about this particular mutation.  They say it could increase your risk of breast cancer, colon cancer, brain cancer and several other cancers and the report gives you some statistics of your increased risks not taking any familial history into account.  Armed with this information I went to see my breast surgeon.  She informed me that this information was a good indicator that I should probably undergo a preventative mastectomy rather than the breast reduction I had originally consulted her for.  She also asked that I go see a genetic counselor.  I did.  Talk about confusing.  The genetic counselor was as confused as I was about what these results meant.  At one point she told me that I was at no greater risk than the average woman on the street.  Which I knew was not right just based on my mother’s history alone.  The genetic counselor kept saying that this mutation was not well researched and we just don’t know exactly what it means.  She later called me back and apologized for her conflicting information and told me that I should probably consider myself at a risk factor of greater than 50% chance of developing breast cancer at some point in my lifetime.

My husband was present for all of the above mentioned appointments and he heard all but the phone call where the genetic counselor took back her words and indicated that I am at a greater risk than she had indicated in her office.  So I am certain that he was still feeling that all of this was being blown out of proportion and a total mastectomy was a little drastic.  He reported to me that his/our friends from his work had said just those same words that this was certainly being drastic and that a woman’s breast are her womanhood and how could someone think of taking them away when they were healthy and causing no problems.  Was he thinking this too?  Or was he just repeating their thoughts to me?  Did their thoughts on this sway him to think this was drastic too?  He never said so in his own words but I will always wonder if he wasn’t thinking the same.  He has always said that he supports the decision that I make, no matter what but he encouraged me to take as much time as I need to make the right decision.  His thoughts play a big role in what decision I make.  Will I disgust him if I have the surgery?  He didn’t bargain for all of this when we said “I do”.

Informing my children about my genetic gene mutation and what that could mean for me and for them.

My three sons are all very different in how they emote and communicate so I knew discussing the discovery of the Chek2 gene mutation would elicit very different responses from them. I was not very wrong from my prediction. While two of them both state it is my decision and they support whatever choice I make, the third one was completely against prophylactic mastectomy and told me it was crazy to even think of doing such a drastic surgery for an unknown factor that might not even ever occur. He said “what if I am at risk for throat cancer? Do I cut my throat out?” I get his point and listened to all of them with the intention of taking what they said and letting it soak up into the rest of my thoughts surrounding this decision. I also wanted them to know this information for the sake of the risk that is associated with it for them.

My boys 2

Informing my children about this gene mutation was not just to tell them about what could happen to me but also to let them know that they could have inherited this gene as well.  The way I understand it, there is a 50% chance they have inherited the gene from me.  Not only is this gene a risk for breast cancer but also several other types of cancer.  I will blog about what I have found out about the mutation of this gene on another blog as I would like to get some feedback about what others know and have experienced first hand.

All of my boys were very close to their grandmother and were there with her while she struggled with her battle with breast cancer.  They may not have understood everything that was going on during those years but they were very hurt with her passing.

My biggest fear is that my mother’s scene at the end of her life will repeat itself with me and I really don’t want my children to have to go through that.


Journaling my Journey towards making decisions regarding preventative mastectomy.

I’m Joy. My mother died from breast cancer and I recently found out I carry a mutated gene that could mean breast cancer for me.

To begin with I want to tell you why I want to write this blog. I am currently 53 years old. My mother died of breast cancer 13 years ago when I had just turned 40. I was there along her side as she marched her long and painful march with breast cancer. She confided in me about her pains and her fears. But sometimes there were things she didn’t want to tell me because she didn’t want me to hurt anymore than I had to. I did hide away my emotions in denial quite a bit. The pain of her whole struggle from diagnosis to her death haunts me every single day. And now I found out I run the risk of marching that same scary march my mother did at a greater than 50% chance. I want to document my journey here as I face some very difficult decisions.Joy on a rock