July 11, 2010

First big update

This is slightly dated now...a letter Jen wrote to family on July 2:


Well, it's been a busy week and I'm still trying to catch up to it and digest everything, but I thought I'd give you a little summary of where we're at. So biopsy results were last Friday (just preliminary, invasive ductal carcinoma). Monday was surgical onc and the nurse practioner to talk about various options for surgery, etc., but the bottom line was that they didn't have good enough pictures (because of breastfeeding) to really definitively walk through a game plan. The lump I felt is about 1.5cm and closer into the chest wall on the R, and about 3 cm away from that lump is an area of calcification they are wanting to know more about. As far as they could tell, the L side is clear but again they want better pictures. Tuesday was supposed to be an MRI and ultrasound of lymph nodes. They postponed the MRI and told be to stop breastfeeding right away, want the MRI after I've weaned for a week to get better images. The weaning's been okay for Olive aside from one mad middle of the night, but it's been very sad and uncomfortable for me. They did the axillary ultrasound and said they saw 3-4 nodes that are "suspicious", so I am having a node biopsy and the MRI next Thursday. Wednesday, Julie and I sat down for a long genetic counselling appt and I did decide to have the blood work done, so those results take about 2 weeks. Yesterday I talked to the NP and she said they had some more biopsy info, that my tumor is estrogen and progesterone receptor negative (= chemo, tamoxifen not an option), still don't know the Her2/neu status yet that may target the chemo more.

So, we know some more but not all, still waiting for the last of the biopsy markers, the MRI, the node biopsy, and the genetic testing to come back. After that, I can sit down and have a better basis to make my surgery decisions, along with a plastics appt next Friday. They're looking to have the surgery in the next weeks, and it sounds like they'd like to step up that timetable a little from the original 6-8 weeks "urgent but not emergent". Once all these other pieces are in place, I'll hope to decide in maybe 2 weeks and then think about timing.

To come back to the genetic testing piece for a bit, I want to talk through a little more what that means to the rest of the family. Kathy had a known BRCA mutation (Aunt Linda was kind enough to walk though the family history with me and even e-mailed the specific mutation yesterday) and Judy was negative, Linda was never tested. If I test positive for the same mutation Kathy had, then it would have implications for the odds of the rest of you having it, and there is a separate possibility that Mom had her own mutation. We've all known the high-risk category the family falls under, but this may get much more detailed and I can't choose for all of you how much you want to know about it, if you would change the screenings you get and when, etc. It was a very eye-opening appt with an overwhelming amount of info. Please sit and think about it, and I will start with the approach that you all don't want to know unless you tell me otherwise. I particularly want to be sure that, Dad & Jeff, this would definitely apply to you, too, because it's not just an increased male breast cancer risk. I can walk through the numbers and risk categories more for those that want to know, and Julie took in all this info, too. Again, it'll be about 10-14 days to get the results back, so I don't have more detail now.

In the meantime, how am I doing? I don't know. There can be long chunks of the day when it doesn't even register, I'm at work and actually working, etc. Everybody has been great, supportive, flexible, and we've got about 30 new babysitting offers. One of the MDs at work gave me recommendations for the medical oncologists from his wife, also an oncologist that works in the Cancer Center with them, and he's contacting them on my behalf to tell them to treat me right! Weaning Olive has been the most emotional part so far, and then I'm guessing it will be unreal again until the surgery time. We'll still be busy in the next couple of weeks with our Chicago trip Mon-Tues, possibly still camping next weekend.

There you have it! Thank you all so much--I know you're there for me in whatever ways you can be.




Kathy said...

GO VIXEN!! We are right there behind you and under you, giving you our strength...
Love YOU!

Monika said...

Cancer never met a vixen like you, Jenny Jenny. It just doesn't stand a chance. You can tell cancer we said so.

The King and Queen of Monikandyland