settling into diagnosis

it’s been 72 hours since we got the news of my breast cancer.  it’s still surreal, and we joke that we’re on this roller coaster that we never really wanted to ride but we have no choice but to finish it and get on to the next adventure.  hopefully somewhere more exotic (e.g., bora bora, an italian villa, etc) than hospitals and breast clinics (although i will note on the latter, mike is most upset at how much time he’s been spending in breast clinics without actually seeing a breast).

we created this blog to have information on my diagnosis, treatment, and journey in one place. hashing this over multiple times can be exhausting as we try and process what we’re learning each day. we’d love talk with everyone in our family and friend circle personally, but it’s just not possible. email can often be hard to manage too.  we hope you understand.

we also know this is hard news for anyone to hear, as each of you have personal challenges you’re working through.  you may choose to not engage with us here, and that’s ok.  life is messy.  no one lives on the easy street.

that being said, hearing and reading your messages is so uplifting, so please keep them coming. even if you feel like you might be speaking to the void, you are not.  we listen to and read everything, and that nourishment is what we need.

maybe one day i’ll identify myself as a cancer patient. but not quite yet.  maybe when my first clump of hair falls out it will be real.  or when i sing kumbayah with other bald women in a therapy group. or come home from surgery with a nasty drain. or get chemo-induced hot flashes [i know you’re thinking…thank gawd it’s not me!][i would be too].  i wish breast cancer would change its color to something other than dreaded pink.  i am a chick, yes, but pink doesn’t look good on everyone. maybe that will be my contribution to the movement. think teal! although it doesn’t have the same charming rhyme qualities.

on to the other hard stuff.

my diagnosis is invasive and in situ ductal carcinoma.  i am estrogen receptor (+), progesterone (-), her-2 (+) and have a mid-level cell proliferation rate of 40%. it’s not the worst, but it’s also not the best. it will be formally staged after surgery when they can see size, lymph nodes, margins, etc.

over the next week, the following things will happen:

  • an MRI to get an understanding of whether the cancer has spread to my lymph nodes.  right now, the surgeon is optimistic it has not.  the results will impact whether chemo is done before or after my surgery, with the thinking that chemo could help attack any cancer in the lymph nodes before surgery. it will also influence if a full body PET scan is necessary.
  • genetic counseling. this will tell if i carry the BRAC-A gene and thus would be at high risk for breast and ovarian cancer. i have a 7% chance. the results take 2 weeks and will influence surgical options.
  • meeting with medical oncologists to find the right fit for someone i’ll work with over the next 5 years.
  • continued meetings with a fertility specialist. by monday we will decide if we’ll be harvesting eggs/embryos to freeze before chemo for use a later date. chemo will greatly diminsh my chances of having an unassisted pregnancy.  the good news is that my ovaries and uterus appear cancer free, and i have a plethora of eggs at the ready. mike just has to get his swimmers tested and we’re good to go [he didn’t proofread this post and will absolutely melt into the ground on this point.][but if you can’t laugh about sperm, then what can you laugh about?]
  • plastic surgeon.  because of the size of one of the tumors, removing just the lumps will leave me pretty…unpretty.  i have opted, with support of the surgeon, for a mastectomy of the right breast. they will do reconstructive surgery at the same time of breast removal.  if, for example, i test positive for the BRAC-A gene, i may opt to have a mastectomy of both breasts.  the earliest i could have surgery is 2-3 weeks, again depending on chemo timing.
  • integrated counselor.  talking about emotional health isn’t something a lot of people are comfortable with.  but, we need to figure out how to cope, take care of ourselves, share information, and ask for help.

we’ve decidedly never talked so much about breasts in our lives as we have in the last 24 hours.

so, we’ll post more as we feel up to it, sometimes more, sometimes less.  this will be an outlet for sharing as we said, but also for processing, venting, and reflecting.

and if you made it through this blog post, we know you’ll help us make it through too.


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1 Response to settling into diagnosis

  1. I am so very sorry that you and your family are going through this. I also started my blog after my diagnosis because I couldn’t emotionally handle telling the same story over and over, so I started blogging and directed family and friends to that. It also helped me to just write and get my feelings out.
    I hope your blog can be an outlet for you to express your feelings, fears, and the positives in your life as you go through this journey called breast cancer.
    Best wishes to you and I hope that you get good results from your upcoming testing.

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