Wednesday, October 20, 2010

the value of a second opinion

I hate to put it out here because I know most of my readers can relate to what this poor woman must be going through. It breaks my heart and makes me just sick. I heard a true story of a woman that went in for a breast biopsy and was given a diagnosis of cancer. Not sure what the exact diagnosis was, or if she was brca+, but it must have been serious since she elected to have a bilateral mastectomy. Now when they remove your breast tissue, it gets sliced and diced and every little piece gets looked at for cancer. This is when they realized a mistake was made. Because they did not find ANY cancer in her tissue in either breast. Turns out they put her name on the wrong tissue sample at the time of her biopsy. I'm not sure a second opinion would have even helped her because normally that would have just been a case of sending that same mislabeled tissue to another pathologist. One can only hope that the other woman whose tissue was also mislabeled has been found and that the whole lab is getting a shake down to fix the broken processes. I am not a litigious person but this just cries out sue, sue, sue. Really though, can any amount of money give this woman back what she lost? Maybe she is more forgiving than I and is simply happy that she did not have cancer.

I did not seek any second opinion on my biopsy results nor did I meet with more than one breast surgeon before my lumpectomy. Everything turned out ok in my case. I can understand why people don't seek multiple opinions. For one thing, when this is all new to you it is overwhelming and you tend to trust what they are telling you. Maybe you never heard of a radiologist or pathologist before and surely they have much more cancer experience than you do so you just go with what they say. It is also expensive to shop around for docs even if everything is covered by insurance, you still have to pay that office visit copay. Sometimes you can't even get a second opinion as is the case with testing for the brca mutation. Currently one company holds the patent on brca gene testing. This is troubling for people who want to double check the test results before making such tough decisions as removing body parts. As someone who did have breast cancer and such a history of it in my family, I would have been more surprised if my test came back negative and probably would have wanted to send my blood to another lab just to make sure. And while I am more than happy to believe that my little sisters' tests did come back negative I still can't figure out how the lab processed their blood so quickly. I think they found out two days after the blood was drawn and sent from ny to ut. Is that even enough time to get the package off the truck and into the lab, let alone run the test and call their genetic counselor? Don't forget they usually call your insurance company first to make sure they will pick up the $3000 tab before they even start running the test. All this was accomplished during the week of christmas which is a barely functional week at most u.s. companies!

One second opinion I did get ended up saving my butt. With my family history in hand, I went to my primary doc and asked her what else I should be doing to keep myself healthy and we determined that I should get a colonoscopy. Despite the fact that all the guidelines said I didn't need one until I was 50, we added up all the questionable risks (diabetes, brca, half-uncle with colon cancer) and decided to get me to a gi doctor who pulled a precancerous polyp out of me. Whew is all I can say!

Friday, October 8, 2010

it's boob awareness month

Turned on a football game over the weekend and had to smile at all the nfl guys wearing pink for breast cancer awareness. It's october already which means that it is boob awareness month. I like math so of course I started crunching some numbers in my head. If the meadowlands, which holds 82,500 fans, were filled with average-risk women then about 10,300 of those women will get breast cancer in their lives (and 1,237 will get ovarian cancer). Let's say it were filled with brca+ women, then 41,250 to 70,125 women in the stands will end up with breast cancer (and 8,250 to 41,250 with ovarian cancer).

I think I feel a little more comfortable this october seeing all the breast cancer stuff out there. Maybe because it seems like we are making strides this year. Many new findings have come out recently that give me hope that things are getting better and we are coming closer to understanding the mutations. The more we understand about how a mutation works, the closer we get to finding a way to stop it. Recently they have been able to isolate the brca2 protein and they may have found a way to repair the brca1 mutation.

What do you think of when you see all the pink breast cancer stuff in the stores? Before I was diagnosed with bc I would see the pink stuff and think of my sis-in-law, the one who survived breast cancer. I would think about getting her something pink and cute because after all, don't all bc survivors need another pink thing to make them feel good or special? In fact, when I bought a new mattress one year (must have been in october) I received a pink sheep which I did send to her! I feel a little stupid now:) Yes, it is good that breast cancer is getting so much attention and some of that pink money must (I hope) trickle down to cancer research or cancer programs but I think we are forgetting the big picture. BOOB AWARENESS! I'm obviously aware of my boobs, are you? I mean, are you aware of your boobs?! I talk about mine all the time and now even think about them in the most random situations. I had to stop at the nevada/cali border for an agriculture check point on my drive here and open up my trailer. The guy told me to only open it a couple of inches otherwise I wouldn't be able to shut it again. He peeked under a one inch opening and said I could go even though he couldn't really see into the trailer. Same thing happened to dw on her drive here. My first thought was why do they bother making us open it a little and pretend they can see in? It's like having a mammogram but not having anyone read the film. Then I got to cali and we pulled our king mattress out of storage. I wanted to vacuum it but it is so large I didn't really know how to tackle the job until it dawned on me to break it down into quadrants as if I was performing a self breast exam. Do any of you (non-brca+) even do self-breast exams? Do any of you go and get your mammo every year? Do you all know what your family history is? When you see the pink stuff this year, please reach for your boobs and cop a feel (but try not to get arrested). And no, you don't need to send me any pink stuff unless it's really, really cool!

Tuesday, October 5, 2010

I left my heart (and part of my boob) in salt lake city

It's official. I've left utah behind and am now residing in california. I've rejoined my wife after 6 months weeks apart and while it is so good to see her again I'm going through an adjustment period. It's to be expected and I just need to roll with it. Living with the in-laws until I can find a job and we can afford our own place. Our pets and their pets learning to get along under the same roof. Trading mountain views for views of palm trees. I haven't even seen the bay yet as we are out in the burbs (I'm going to have to do something about that this weekend)!

It's funny how much difference a year can make. I know I say that all the time but it's so true. Last october I put a poll up on this blog asking you all to vote on where we should move next. I was so ready to leave utah. Now we have moved but I will miss it dearly. Two years ago as we left ny and headed to utah, I was so excited. So much beauty and so many places to explore in utah, not to mention the snowboarding! And we had an awesome first 8 months before cancer and brca entered our lives. The rest of that story is written here in the many pages of this blog. Somewhere between last october and this october I changed my mind about leaving. Somehow between my bcsw, snowboarding and working in the gardens I was healed. I got broken in utah but I got fixed there too.

So I'm back in cali and I expect to hear the typical utahn jokes when people find out I lived there. You know the dumb ones about how many wives I have, etc. And I expect to hear a little hatred because of prop 8 and current talk by some church leaders. When I hear people saying bad stuff about mutant 2 the kid in me wants to strike back or curl up in pain but the adult in me tries to remember what I've learned over the years: that is that you shouldn't judge the individuals of a group by what its leaders say. I mean, I grew up catholic and my pope doesn't like me but I know for a fact that many catholics do not believe in everything the pope dictates. And I assume that the same goes for the lds. I've had the pleasure of making the acquaintance of several lds and I like them and I hope they like me too. We don't have to agree on everything and believe in all the same things to get along. A little respect goes a long way and I just wish Packer had worded his speech a little kinder. If you've never been to utah, please don't be afraid to go there. It's a beautiful place and the people are pretty nice.