Waiting is the hardest part...

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xtinar
xtinar Member Posts: 3

I've been lurking around and "over-googling" the past few days as I wait for biopsy results and realized that I could reach out for support - AND - share my story - which could potentially benefit others.

 I KNOW BREAST CANCER SUCKS: My mother died when I was 10 years old (back in the 80s) - she duked it out with breast cancer for 8 years - ER-/PR+ - Radical Mastectomy, Radiation, Chemo, amazing MDs at Memorial Sloan Kettering... She was my hero. 

 I KNEW I WAS AT RISK: Every year when I would visit my OBGYN for a checkup I would ask "When should I get my baseline mammogram?" - My sister had her first mammogram in her 20s, so I figured that my MDs would write the orders "next year" each time I went... 2 years ago (When I was 31) I demanded a baseline mammogram. 

AND THEN IT ALL BEGAN: Don't worry, my story didn't take THAT sharp of a turn... I had the mammogram, it wasn't so hot. Had a diagnostic mammogram and ultrasound... Threw in a stereotactic biopsy, an MRI, a few consults with surgeons ranging from country docs to big cancer centers, 3 pathologists and then I landed myself in the OR having a lumpectomy. Wound up diagnosed with ADH (atypical ductal hyperplasia)

This, combined with a pretty strong family history of breast and ovarian cancer, put me into the high risk category that basically made me feel like a cancer ticking timebomb. 

IT GETS SO CONFUSING: My "big cancer center" wanted Genetic Counseling, my gut told me no. I found myself a medical oncologist that I could talk in depth with and reviewed my options. I became an official pain in the behind for my ENTIRE treatment team. They don't generally treat gals my age, women who want to preserve their fertility yada yada yada... We agreed that my husband and I could try to conceive provided that I would continue on 6 month rotations with Mammogram/Ultrasound in the spring and MRI in the fall. 

EVERYTHING SEEMED GREAT: Had a few "nothing new" mammograms, ultrasounds and MRIs. However, I've been a bundle of nerves every 6 months. AND (outside of the breast cancer fear) I've had a wild and crazy year with incredible amounts of stress that deep breathing, cups of tea, and a long walk can't solve...

I scheduled my MRI thinking positively: "This will be the last MRI I have before we make a baby!" I even scribbled notes to myself to remember to talk with my oncologist about ways we could deal with my fear of not being checked throughout pregnancy. I was CERTAIN that he would be able to set my mind at ease. 

AND NOW MAYBE IT ISN'T: Week before last I had my MRI and wound up being called back in for MRI guided biopsy last week. Apparently Righty (which has already had a lumpectomy) had a BIRADS 4 rating. Go figure. Totally new part of the breast from last time...

So here I am, putting the cart before the horse... Over analyzing, channeling all the braveness my Mom had throughout her treatment, and wondering what the heck the MDs are going to say. So grateful that so far it's only been ADH, but beginning to realize how fast things can grow - and how scared I am. 

Wondering how many lumpectomies Righty can take. Scared that Righty's BIRADS 4 is totally new. (Not seen on 2010 MRI or Spring 2011 Digital Mammogram or Ultrasound) And realizing that the microcalcifications that are showing in Lefty continue to hold at a BIRADS 3... Ugh. 

How can we stay sane when it's a rollercoaster every 6 months? I'm frustrated that I'll see my oncologist and breast surgeon 2x a year "indefinately."(Even though I don't technically have cancer!) I'm not generally an anxious person, but this "6 Month Club" has me in a whirlwind. 

AND... That's the end of my (very long) first post ;)  So very thankful I've happened upon this discussion board and have had the opportunity to read about so many of your experiences. It makes this lonely, awkward time so much more easeful. 

Comments

  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited October 2011

    xtinar, this post really captured my attention.  Indeed, how can we stay sane?  Since your mom passed away from cancer, you certainly have more mental anguish about this issue than many of us on the 6 month cycle of tests, recalls for diagnostics, maybe a biopsy, BIRADS 3 and back on our way.

    I heard you loud and clear!  My thought is if you want to be a mom, get on with it and don't let this issue take control.  Reason I say this - after I started having breast issues, I also started having gyn issues for the first time in my life - uteran fibroids, ovarian cysts, etc. Not sure if the two were connected somehow, but it led to an unexpected total hysterectomy.  My body just seemed to get all out of whack.  Thankfully I had a child in my mid 30s, so I gave up all of my reproductive parts happily since they were causing me all sorts of problems.  I don't want to scare you, just presenting a different view. The every 6 month thing used to cause me to put all sorts of things on hold but I've taken back control from this lurking beast.  Sending you a hug, sweetie! We're all here for you and we totally understand. 

  • Crescent5
    Crescent5 Member Posts: 442
    edited October 2011

    "And now maybe it isn't" ... I keep getting that %$#@ing one, and it's TORTURE! I just want to say there are hundreds (or thousands?) of us here who understand. Oddly, when I go for my screenings, it's not just cancer I fear .. it's more testing. So I get it. The 6 month club sucks, but the members are wonderful. Best of luck to you.

  • xtinar
    xtinar Member Posts: 3
    edited October 2011

    Thanks for the reponses! I've been glued to the phone checking my voicemail the past two days (the Docs assured me that pathology would be ready for me Monday or Tuesday... I had the biopsy last Wednesday)

    But here I am, end of day Tuesday with no news. I did check in with the team earlier today and there was no pathology available in the computer system, so it looks like I'll be a neurotic voicemail checker tomorrow as well. Lucky me Surprised

    @carpediem1965 - I really wish that we had gotten pregnant this year (past 12 months)... My MDs have been clear that after we create a kidlet that they recommend surgery. My fingers are crossed that we will still have that opportunity. 

     @crescent5 - For real. Even as I sit here anxious as anything about waiting for my pathology that SHOULD have been ready by now.... I dread it. Because I know that when I meet with my new BS on Friday she will be discussing incisional biopsy/lumpectomy JIC (just in case). And then I'll be stuck playing the waiting game all over again... 

     This morning I made a sticky for my 2012 calender that reminded me to see how I might adjust my 6 month screenings so that I don't wind up wallowing in the land of PINK that is October. I'm not a pink hater, but I'm finding it difficult to navigate.

  • mawhinney
    mawhinney Member Posts: 1,377
    edited October 2011

    After my mx, I had some sort of screening every 6 months for the first year. I would alternate every 6 months between a mammo and an mri. Other tests were done as needed.  I was happy to do the screenings because it meant a medical professional was looking out for my welfare & if something was found it could be dealt with before it had a chance to grow.  At the 2 yr. mark my screening program was changed to once a year unless something cropped up between appointments.  The change to once a year screening was scary as it would be a longer time between check-ups.

    Yes, waiting for test results is the hardest part. I've learned to ask at the time of testing when the results would be available and who would give the results to me. I also request a written copy of the results.

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