Now, on to the other stuff in a bit more detail for all you enquiring minds that want to know.
I promised that I would go over what the genetic counselor discussed with me, so today is the day where I delve back into that. It's okay for me now, but I was way too emotional (read bitter, angry, gutted) to talk about it right afterward. I felt raw and beaten down, and I knew that if I tried to describe what we discussed that I would be spewing vitriol all over the perfectly innocent interwebs. So I waited until I could gain some objectivity. The tumor shrinkage confirmation definitely helped me regain my equilibrium.
First, my counselor and I met at the Vanderbilt Breast Center in a small conference room-- sometimes it's nice to get out of the more clinical setting of the exam room. The counselor, a pretty young lady with a master's degree in genetics or genetic counseling, asked me about my family situation and my personal feelings about genetic testing.
Since her job is to look at the whole family, I understood her need to get a handle on my family dynamics so I gave her a brief rundown on where we stood: my mother was diagnosed with cancer at the same age as I am now (40, in case you didn't already know), and my sister is 36 and worrying about her near future. No one other than my mother and I have ever been diagnosed with breast cancer. Period.
|Self portrait that I took in February or March of this year -- before I knew that I had cancer.|
With a couple of exceptions, members on both sides of my family live well into ripe old age. As a historian, I am very interested in genealogy and have done extensive digging into the old family background, so I'm not just mentioning what I've heard -- I'm also telling what I've seen through death certificates and the social security death registration as can be found on ancestry.com.
As to how I feel about genetic testing, well, I'm not necessarily for it without a good reason. No, I'm not worried about being denied health coverage or a job, and while I think movies like Gattica have relevance to our society, I'm not afraid of a life like that either. But I don't believe in borrowing trouble. If I test positive for a BRCA mutation, that is fine -- it's a tool to help me decide my treatment from here on out. But if I had had the test done years ago, it would have served no purpose other than to worry me, to stifle me, to make me live in fear. I would not have had mammograms performed any more frequently (I have gotten every year or every other year since I was 35) or talked about prophylactic surgery with any of my crappy doctors in Kentucky. My sister tested negative for the mutation years ago, and has pushed for me to get tested ever since. I always said no. My attitude hasn't really changed any, but my circumstances have, and that is why I've given blood to be sent off to a lab.
Because my mom was the only person to have breast cancer in our extended family, I also never felt like I had the BRCA mutation. After talking with the counselor and digging into the family some more, I see that it might be possible. She explained to me that because there are a couple of generations where there are all males or only one female, that it is entirely possible that the gene was passed through the men. So the gene could have come from my mother's father, even though his sister lived into her 90s, or it could just as well have come from my mother's mother, even though her sister is either still living or died within the past few years. There are more details that I could add, but in essence, my reasoning, while logical, may have been flawed because of a lack of information.
At this point, I will just have to wait until my next chemo infusion to find out, because that's when I will meet again with the counselor, and she will have the results then.
I'm sure by now you are wondering why I felt so terrible after meeting with the counselor, based on what I've mentioned so far. But there was one or two other items that we discussed that really hit me hard. Apparently, you basically have a couple of choices about treatment if you do test positive for the gene mutation. You can choose a bilateral mastectomy (the surgeon already told me I am not a good candidate for a lumpectomy so I knew I was going to lose one breast), or you can choose to just remove the breast that is currently affected.
|Me, at the doctor this week before my infusion. I love my purple no-hair hat that my grandmother crocheted for me. :)|
The whole idea of surgery bothers me on so many levels that I can barely comprehend, much less explain. In my life, I have broken my foot, which required a special shoe and nothing more, had this port installed, and had three moles removed. The thought of someone taking a sharp implement and cutting into my flesh creeps me out beyond measure. But my angst on that particular day goes much deeper.
The counselor told me that if I opt for the double mastectomy, I will have no more imaging done. Now, I knew that they wouldn't do any more mammograms because reconstruction with implants means no way of seeing what's behind them. But I didn't know that this also meant that breast MRIs are off the table, too. Maybe that wouldn't bother me so much if I didn't know that if they leave even one little cell of breast tissue behind, I can get cancer again, or it could just come back in my lymph nodes that they leave on the left side. My only way of knowing if I were suffering from breast cancer again would be through self-examination or a doctor finding it. I was very disillusioned by this, because it's like they're just cutting me off even though I am still at risk.
Whether I should or not, I take that personally. I deserve to be treated better than that.
And the other option? Save my left breast, and risk a 1 in 2 chance of getting cancer there. On the plus side, I would get a mammogram or breast MRI done every six months to monitor my health, but would it really be worth it if I eventually have to go through all this crazy treatment again? The truth is, I could already have cancer in my left breast, and it could just not show up yet. Regardless, my plan for this life is to be bald once, which means chemo only once. So I'm waiting to see if I fall into the BRCA positive category before I make my final decision, but we'll see. It also affects whether I decide to keep my ovaries or not, or if I have a full hysterectomy.
Seems like a lot to throw on someone my age all at once, and that's what broke me down the other day.
But I'm back in fighting form now, because I realize that I got a lot of good information from the counselor about my situation. I've been reading blogs by other women who have had breast cancer and I don't think they've been given as much information before deciding on their treatment, so I'm trying to just be thankful that I have so many good people on my side.
Oh, one more thing before I go, and then I promise I'm done for today, even though I still have lots of good information that I got from my doctor yesterday. You'll just have to wait to hear about that. The counselor told me that if I do have one of the 2 mutations for BRCA (which is a gene that everyone has that works as a tumor suppressor), that she would be almost certain to put me in the BRCA2 camp. BRCA1 is almost always what is known as triple negative, and I am triple positive. That just means that the receptors for HER2, estrogen and progesterone are all positive, and it's what makes my treatment with Herceptin possible.
Long live Herceptin, miracle drug that specifically homes in on cancer cells and destroys them!