Thursday, October 08, 2009

Karyotype, names and rainbows

As mentioned yesterday, I got the results of the chromosomal karyotype of Peanut yesterday. This one is frustrating. I'm going to try to explain this as I understand it: in order to perform a karyotype of D&E tissue, which is dead tissue by the time it arrives at the lab, they need to be able to regrow the cells so they can read their DNA. Or some such hoo-ha like that. My lovely OBGYN, Dr. Beloved, actually chit-chatted with me for 5 minutes before giving me the results asking me how I was doing emotionally and how my boob surgery went. She sounded genuinely thrilled for me that the biopsy came back negative. So unlike every other doctor who tries to get off the phone asap. Anyway, she tried to explain the tissue analysis to me, but I was crouched in a windowsill of PF Chang's trying to hear her over the god awful jazz music that had blaring from the ceiling. Anyway, the weren't able to regrow these cells for whatever reason. Ugh. When they can't do that, they'll test for specific high-probability issues like X/Y, chromosomes 13, 18 ,21 and all of these came back as normal for Peanut. So basically no answers whatsoever. Dr. Beloved said that she still thinks it was likely chromosomal issues as that's the reason behind 75-90% of 1T miscarriages. But she's not sure. So I'm left in limbo between wondering whether my eggs are total crap or if I have yet another potential problem -- if Peanut was healthy, why did I miscarry then? I had that bad spotting from weeks 4 to 8, including passing that dime-sized clot, but no one seemed to take me seriously because up through that point, Peanut was looking like a superstar.

I have an appointment with Dr. B (RE) on Friday. I plan to grill him more about this -- if I can do any other testing, clotting or whatever, I will. I'm also pondering if I need to call his nurse today and warn them why I'm coming in. Last time they saw me, they were all smiles, patting me on the back and wishing me well after a great 8-week ultrasound. Now, all of a sudden, I'll show up again. I did tell the scheduler that I was coming in again because I had miscarried, but I don't know if that intel was transferred. I guess I'll call to be sure -- I don't want to deal with weird surprises on a day where I want solutions.

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Also, in response to Circus Princess and Sarah (callmemama), I'm at higher risk for breast cancer simply because they found atypical cells in the first place. Breast doctors use a very simple "Breast Cancer Risk Assessment" formula where they plugs in data about the patient, such as race, age, whether atypical cells were ever found, breast cancer in the family. Based on the answers to those questions, the formula spits out a percentage. It's very low-tech and Dr. Boob pointed out obvious flaws, like whether your job or lifestyle might increase/descrease your chances and it had nothing to mitigate my odds after the second biopsy was clear. But it's a guideline, and I know we're all familiar with those IF percentages, to help them determine how aggressive to be in monitoring/treatment. I'm 100% on board with aggressive monitoring, so if they're overestimating my chances I'd rather have that than them underestimating them!

This is actually the tool if anyone is interested:
http://www.cancer.gov/bcrisktool/

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Finally, I remember others wrestling with this in the past (Sarah, I'm talking to you ;) ), about whether to reveal personal info about yourself on your blog. I still think I'm not ready to share photos -- I'd love to show you guys, but I don't want someone, a work colleague for example, to be googling me and know for sure that they've found the right person. However, I don't see any risk in sharing my first name -- there's enough of any of us out there that it wouldn't really help to track anyone down. As much as I like the word "Noodle", it'd be nice if I could actually comment back and forth with people under a real name. Any of my message board friends already know this, so it's anticlimactic, but dun dun dun...

My name is Lara and I'm an infertile. (Edited to add: it'd be nicer to refer to ourselves as "subfertile", though, huh? "Infertile sounds so defeatist and we're still fighting!)

5 comments:

  1. Oh, no answers...ugh how frustrating. I'm sorry that you are still in limbo as to why Peanut is gone. This IF game of no answers gets so old, doesn't it? Good luck with your RE. I hope you get some answers somewhere.

    And...welcome, Lara...it's nice to meet you.

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  2. I'm sorry you didn't get any answers regarding Peanut :-(
    Thanks for clarifying the whole boob cancer risk factor thing - I totally agree, better to check and double check if you've had a scare like this.

    Pleased to meet you Lara. My name is Susanne and I'm an infertile.

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  3. Ugh I hate when there are no answers. That happened with both our m/c's. They actually came back chromosomally normal, but they were female so there is no way for them to know if my cells contaminated them. Our RE still feels like they were chromonsomal, because like you said 75-90 1T are, but in my heart I feel it was something different. I did all the clotting bloodwork and no answers there either. I hope you find your answers!! Good luck!! So sorry you have to go through this. Glad to meet you Lara. My name is Kari and I'm also infertile.

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  4. Hi Lara :) I'm sorry you didn't get any answers from the karyotype. I hope they are able to figure something out and tell you more.

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  5. Lara, I agree about the "sub-fertile" title - until we quit trying altogether, I think it makes me a little bit depressed every time I type the word infertile, as if it is confirming what is still unknown at this point.

    (I see you've added a new post on the karyotype info, so I'll add the rest of my comment there.)

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