Feeling like I opened Pandora's Box

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mom2kk2001
mom2kk2001 Member Posts: 4
edited July 2017 in Waiting for Test Results

I had my first mammogram on June 26, called back for a biopsy on the left side for a suspicious lump and for a second mammogram on the right for a group of calcifications. The lump freaked me out, particularly when I was laying there and they were measuring it...it just became so real. So I was sooooo relieved when they told me it was a cyst, but would watch it closely. Then the bomb--the calcifications, which I wasn't worried about, are suspicious for malignancy, BIRADS 4, have to have a stereotactic biopsy. I am having it and a galactography this friday the 14th. I know the percentage is on my side, but that is not all to my story. About a month and a half ago, I had genetic testing, which I tested positive for the MSH6 gene and was diagnosed with Lynch Syndrome. (My mom is currently undergoing treatment for Stage III ovarian cancer). For those who don't know what this means, essentially I have a higher rate of cancer occurrence in my colon, digestive system, uterus and ovaries. So testing positive means a whole host of tests at 41--colonoscopy, pelvic ultrasounds, endoscopy, etc. So we threw in the mammogram, "just to be safe". I was prepared for the other stuff, well sort of, but not for this at all. My pelvic ultrasound I had around the same time revealed a problematic complex cyst so I am scheduled to have my ovaries removed on the 8th of August (had a hysterectomy a couple years ago). So right now, I have to get ready for all that entails--at best a surgery and recovery, at worst, a cancer diagnosis, plus I have to go through a endoscopy and colonoscopy in 2 weeks. Like I said, I know the odds are in my favor, 80% being benign, but I just feel like I opened Pandora's box and no matter what I do, I am just waiting for "what's next?" This biopsy has me so I am crying, telling myself not to worry, crying more, completely not able to concentrate, moody, you name it.....I have a great support system, I really do, but they just don't understand that even though there is a good chance it is benign, there is STILL a part of me that says "what if". If the biopsy comes back positive for something, then I am dealing with that AND ovarian issues AND digestive issues. I know in my head that things will all work out the way they are supposed to and one day I will likely look back on this and say, wow, that was tough, but I got through it, but my emotions are all over the place. I guess I am just looking for support, it seems like friday will never get here and I am a mess. I am trying to take it day by day, but it is hard. I know you have all been here in some way and I am hoping that being here will help since you can relate.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2017

    mom, I went through something very similar. I had a rare and huge ovarian cancer. Getting into the "system" triggered all kinds of similar stuff for me after my surgery. After having my mammogram and biopsies, I was diagnosed with LCIS, then referred for genetic testing, including for Lynch because my paternal grandmother died of colorectal cancer, my dad's sister had it and my dad grows really big "bad" polyps very quickly. Colonoscopy - I had a few polyps. Genetic testing was negative for me, so things settled down after a hard year, but I still require frequent monitoring on the breast, pelvic and colon issues.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited July 2017

    I can also relate. I was diagnosed at 38, so went ahead and had my first colonoscopy because colon ca is rampant in my mother's side of the family. They found several polyps and now I'm on increased monitoring, having had 2 more over the years, and due for another. No one recommended genetic testing back then (14 years ago) but it is still a consideration (a Lynch-type variant being on the list of suspicion). The "Pandora's box" feeling is familiar. I try to take each thing as it comes, now, not focusing too far ahead. That seems to help me. I've also worked quite a bit in mindfulness and breathing, which help when I get overwhelmed. You are not alone! Try to stay as busy as you can so your mind is distracted between now and Friday. Sending you calming energy and gentle ((hugs))

  • mom2kk2001
    mom2kk2001 Member Posts: 4
    edited July 2017

    Thank you both......i appreciate your kind words.....MTwoman, you are right, right now, distraction is key and I think some meditative breathing and mindfulness will prove to be most helpful. I know I can do this, I am not alone and I can do this. The nurse that will be working with me on friday called a bit ago to go over instructions and how the procedure will work. That actually was calming because for me, the unknown is the worst. I need to be able to plan ahead and account for the outcome. I have just been so taken aback by all this that I can wrap my head around what I will do if it isn't benign and that scares the bejeezies out of me. With the ovaries, I had a little time to process that, go over it in my head, develop a plan, but with this, I am just not there yet. I will keep you updated as things progress. Thank you again.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited July 2017

    If it's helpful, I took music/headphones with me everywhere I went. (they even let me have it in nuclear medicine when we were doing the dye injections and mapping my sentinel nodes). I had some music pre-selected through experimentation and practice at home, that had the right tempo to encourage even breathing and I would play it in waiting rooms or wherever I needed. It was just the right amount of distraction for me, as waiting rooms were a bit too nerve wracking to read anything (another useful 'escape' tool for me). You can do this. Find what works for you. Being able to distract yourself and calm yourself are really critical skills that will serve you well.

    If talking through things with the nurse was helpful, maybe there is a navigator at your center. I had a nurse navigator who would meet with me and talk through procedures, options, etc that I found really helpful. We're "in your pocket" when you need us!

  • lekker
    lekker Member Posts: 594
    edited July 2017

    I can understand why you're feeling overwhelmed with all of this. I had comprehensive genetic testing because I had a malignant colon polyp removed at age 30 and invasive lobular breast cancer at 42. No mutations were found but I chose to have a hysterectomy and oophorectomy at 43. No further cancer was found after that surgery but I'm glad I did it. They will look at all tissue removed during your surgery so hopefully instead of a cancer diagnosis, you can be reassured that there was no cancer there! And while the odds are in your favor for the breast biopsy, I can understand why you're nervous. We are here's to support you each step of the way. You also might try googling for Lynch support boards as there aren't whole lot of members here who post about that. Please keep us posted!

  • mom2kk2001
    mom2kk2001 Member Posts: 4
    edited July 2017

    Thank you again, great suggestion for relaxation and for checking out some Lynch support boards. I am so all over the place right now, it is difficult to know where to turn. Two more days until the biopsy. I will definitely keep you posted. I just really appreciate the support here, just really appreciate it.

  • mom2kk2001
    mom2kk2001 Member Posts: 4
    edited July 2017

    I just wanted to check in and let you know that I found out friday that things are benign. I have a lot more to my journey, but at least this part is over for a bit. Thank you so much for your support and kind thoughts.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited July 2017
  • MTwoman
    MTwoman Member Posts: 2,704
    edited July 2017
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2017

    I'm so glad you have at least that part squared away for now.

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