October 17, 2012
Hey gang,
So, I’m going to make every attempt at brevity here…do bear in mind that the descriptor I have just used is “attempt”.
Over the last week, we’ve spent a great deal of time meeting with an oncologist, a surgeon and a plastic surgeon. The overwhelming conclusion that we were beginning to come to based on the educated information that we’ve been receiving along with our own gut feelings and stirrings from time in prayer was that she would get a mastectomy on the right side, reconstruction to match the left side, get her through this next few years with chemo/radiation/hormone therapy/etc, pop out some kids and then she would get another mastectomy and our worries of breast cancer in the future would be all but nill.
One thing that had allowed us to come to this rather complete idea of how we were going to handle this was our meeting with the plastic surgeon last Monday. He was kind of the missing link in all this. Meeting with him (a very soft-spoken Kiwi) was sobering to say the least. We got a very complete picture of the options that she has for reconstruction; anything from just taking it off and leaving her with nothing, to using butt fat to reconstruct the boobie…there I go with the boobies again. Boobie. Anyway…I digress. And yes, you can use butt fat to make boobs. Who knew?
This plastic surgeon was talking as if mastectomy was the only option (which we both still stand that if she comes back positive for the BRAC gene which is the one the predisposes her to a much higher risk of a repeat carcinomal offense, then we WILL go for mastectomy…its just not worth the risk) So we then proceeded to spend the next 45 minutes looking at breasts. Big breasts, small breasts, old breasts, young breasts. Never seen so damn many breast in my life and never care to again. It was very helpful however in determining what the potential reconstruction options were and the trauma associated with each type of reconstruction. I make light of this yes, but in reality, “trauma” is a great word for this. This is an intense surgery. There are variations that aren’t as bad, but I’m beginning to very intimately understand why this is so difficult for women. We discussed for the better part of 2 hours the best way to remove and then rebuild using various body parts (both from currently living tissue as well as that of a cadaver) one of the things that is a physical watermark of her being a woman. She is still a woman and in my eyes she is no less without her breast – period. I am realizing though that it’s so integral to her physical identity and how she feels about her body and it helps her feel sexy and feminine and well…like a woman. As I said, it was sobering and scary. It was just a heavy day on Monday.
Tuesday didn’t get much better. I unfortunately had to work so my wonderful mother-in-law (word up MJ!) went with her to the Anschutz Cancer Center at the University of Colorado. She essentially got a run-down of the last week and a half, only she got it with 4 different doctors and they crammed it all into 5 hours. Needless to say, she was wiped out. A synopsis of her time there; The doctors down there want an MRI of the whole area and an ultrasound of her right armpit. The reconstructive surgeon was very easily talking as if lumpectomy was a total possibility, and they also tested for another rare gene called the P-53. There is a small chance that she even has this, (5%) but they look for it in people who get cancer at a young age. It’s associated with breast cancer, childhood cancers, lymphoma and some other weird and nasty cancers. Typically speaking if someone tests positive for the BRAC gene, they will not have the P-53. We should have the results of the BRAC test back in the next few days, but wont see anything about the P-53 for about 4 weeks which will be after surgery. The hard thing with this is that if she gets a lumpectomy, she will have to do radiation. If she tests positive for the P-53, they wont allow her to do radiation because the two don’t mix well. She would have to go back and do a mastectomy. We do NOT want her to have to do any more surgeries than are absolutely necessary.
So here’s the kicker – because this steenking tumor feeds on estrogen and progesterone, one doctor has told us that he wouldn’t even let us harvest eggs (there is a 15-30% chance she wouldn’t come out of menopause and would remain infertile) because to harvest you have to take high doses of estrogen and progesterone…carry the 2…bad for cancer. Another doc said that the amount of time that you have to actually be on the high doses of hormones is short and it happens after surgery so they weren’t as worried about it.
Well thanks doc…what now?
Another complicating factor is that the Anshutz cancer center has a department of folks who deal only with breast cancer in young women.
That’s the gist. Here is the request in all this. Please, please pray for us for discernment, for a clear path and the guts to make a decision. We have also sent all of her information to a third breast team and are hoping to bounce all this off of them and see which way they lean. Its scary when you get any sort of conflicting medical advice when dealing with something of this nature. You have to decide who you believe is right and more educated and has more experience and blah blah blah. Its incredibly hard to do, and quite frankly it makes me want to crawl into a hole. That I do realize however would not make this go away, so I refrain.
Here’s the decisions we are up against…please pray over these:
-Which treatment center and team of docs to go with
-Mastectomy vs lumpectomy
-Is it safe to harvest eggs just in case she stayed in menopause?
-Should one be necessary, does she get a reconstruction using cadaver tissue, her own abdominal muscle, a muscle and patch of skin out of her back or as was suggested does she even need to add extra muscle or will the existing pectoral muscle suffice?
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So that’s it…sorry it ain’t shorter. I actually really am…if this drives you nuts to get super long emails like this I understand. Bear with me…
No dates to report, we don’t know what we’re going to do.
Thanks for the phone calls and the texts and the chili and the flowers and the frogs (stuffed) and the beer and the cards and the pink ribbons and the prayer. We love you each and appreciate so much how you all have rallied. Its actually fairly overwhelming at times in such a good and tender way. God is good to us and so are you.
Love,
Jeydrienne
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