Wednesday, September 8, 2010

no shit, sherlock

You'd think because I haven't posted in so long that I've had nothing to say. That's not the case. I've had so much running through my mind I just don't know where to begin and at the same time, I can't get the words to flow out of my head and onto the screen. Finally getting back to my journal which is great but my hands are still hurting so writing is hard. I find it easier to type, although I end up paying for that later. I guess it is good I will be moving on from my wonderful gardening job soon as my body is falling to pieces on me. I'm hoping that my aches and pains in my knees and other joints are attributed to my job rather than the lack of estrogen starting to catch up on me. I was feeling pretty good prior to the garden (with the exception of some hand problems from my bike).

So lets talk about the recent brca study that came out in the journal of the american medical association. It states that preventative surgery (mastectomy and salpingo-oophorectomy) increases survival rates in brca1/2 mutants. This study has caused quite a stir with the media with a lot of tv shows and papers running stories.
ap
cnn
npr
abc
cbs
fox
jama video
 
For those of us in the mutant/high risk population, the study results aren't much of a surprise. It's kind of like when ellen came out as a lesbian. No shit, sherlock! I think most of us already knew that getting rid of our boobs and ovaries decreased our chance of getting cancer and increased our chance of dying of something else. Otherwise what's the point of cutting them off? The interesting thing about this study is that they looked at brca1 and brca2 separately so that now mutants have a better understanding of how surgery may affect their cancer risk based on which gene mutation they have. For those of you who don't know, brca1 and 2 gene mutations are very similar yet they do have some big differences including the percentage of risk of breast and ovarian cancer as well as the type of breast cancer you may usually get.

This study also looked at how removing your ovaries can have an added benefit of reducing your risk of getting breast cancer. This is something that they have known about but now we have some breakdowns on which mutants it helps the most. Since I never did end up cutting off my boobs, I was banking on the fact that getting rid of my ovaries reduced my risk of bc recurrence or new bc. According to the study, removing the ovaries reduces bc risk in mutants who have not had bc yet but doesn't have much added benefit to those who have already had bc. I was very upset to learn this but after reading the study a little closer and learning its limitations, this might not really be the case. The study looked at women who have had bc but did not look at what kind of treatment they had for their cancer. So some of the women could have had chemo (which often results in menopause) or tamoxifen (an estrogen blocker). Both of the treatments can result in the same benefits that removing the ovaries do. So still crossing my fingers that I have bettered my odds of not getting any more breast cancer.

Ugh, my posts feel really disjointed lately. My mind feels like it is going to explode. This surveillance thing is not easy. Although I do not feel worried (yet) about my upcoming mri, I am constantly thinking about my breasts and what to do. Being on the surveillance route feels to me like a temporary thing rather than a permanent thing. Like a person that does not have health insurance taking a gamble on how long they can go without it before it comes back to haunt them. I may have decided not to have surgery for now but I am constantly looking at reconstruction options and surgeons, etc. I'm not the only one in this boat. If you take a look at that study again, you will see that the majority of us are not going through with surgery, even though it shows it saves lives. Why is that? It's not an easy thing to do. We like our body parts and we fear the surgery, the pain, the recovery, the loss, the costs.

5 comments:

  1. Hi Janine. I feel your frustration - unfortunately for people like you and me there are no easy answers. Surveillance is anything but easy, in fact, may even be harder, but surgery itself is a bitch. I thought it'd be okay to talk like that here! I need to look at that study, though to be honest, I've sort of been hanging out on the outskirts of BRCA mutations this past month because of my own complications. In my world, most people I know are going with surgery over surveillance but I don't know the figures.
    I hope that you (and me, and the others!) can find some peace, and keep it..

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  2. Teri, swearing is allowed on this blog! In fact I'll shout out a big FFUUUCK for you and everything you've been going through. I hope the finish line is in sight for you. Hang in there, sister.

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  3. Thank you for your blog. I was recently diagnosed with breast cancer, and I'm finding blogs more helpful than all the strictly medical information I've found online. I look forward to going back to the beginning of your journey and reading every word. Thank you, thank you, thank you.

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  4. Hi 40, I just checked out your blog and see you are just starting your cancer journey. Even though you tested negative for brca, you might want to check out the link for FORCE on the left side of my page. Their message boards do contain a lot of info on preparing for surgery and what to expect as well as many of the side effects people have experienced from the different treatment drugs. You can learn a lot there. Good luck to you. Sending you a hug.

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  5. Hi Janine, Thanks for commenting on this study and providing all the links. I feel very similarly to the way you do - no shit Sherlock indeed! My reaction to this study was "duh" and "yawn". Been meaning to blog about it too. Good for you for sticking to your guns and to your boobs. Remember, it's YOUR body!

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