Just Diagnosed with a double whammy

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linda505
linda505 Member Posts: 847
edited August 2016 in Just Diagnosed

Hi all - I have posted in the triple + area but thought I would say Hi in general and let you all know my story.  Found a lump high on my left chest - above my breast - below my collarbone on Jan 24th.  Had a cold and coughed - put my hand on my chest with the cough and said What the heck is that.   Went to my GP that Monday sent me for diag mammo and ulta sound - couldn't see it on the mammo - too high up was marked as a birads 4 on the ultrasound.  Got in to see a breast specialist a week later and she did a biopsy and confirmed IDC.  She sent me for a chest xray, breast MRI and Bone Scan (as I had shoulder pain)  Chest xray and bone scan came back normal - MRI showed something suspicious on the right breast.  Dr called had me in the next day - did an ultrasound guided biopsy and just got those results today IDC in the right breast also -  this one in a place that should be seen in a mammo - My doc says even knowing now where it is - it cannot be seen and should be able to be seen.  With these two finds - I have decided on a double mastectomy with immediate reconstruction.  I have been reading here since I found my lump on January 24th and I really appreciate you all sharing your stories.  I know as I go forward I will look to you all for ideas and information.  Wish I wasn't here - but at least I am here with good peeps.

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  • mdg
    mdg Member Posts: 3,571
    edited February 2014

    Welcome but so sorry you have to be here :(    This is a great place for support.  I know all of this seems overwhelming - the beginning is the hardest part.  You WILL get through this.  I didn't think I could do it, but I knew I had no choice so I put on my big girl panties and sucked it up for a year.  Hang in there and know you are among lots of BC sisters who understand what you are going through.  Hugs and good luck!!!

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited February 2014

    linda505,

    Sorry you are joining us, but Welcome. Do you always go big ? Little over achiever eh'. ...Lol....Good luck with your surgery, I hope it goes smoothly. You will know more after your lab report comes back if you will need further treatment. Keep posting, it helps with the anxiety.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    linda 505, welcome to BCO. I had a similar story to yours. Two tumors that didn't show up on a mammogram. I'm sorry for the reason you are here, but you couldn't have picked a better group of ladies. Please keep us updated with your progress. Sending good wishes and hugs.

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  • AZ85048
    AZ85048 Member Posts: 2,613
    edited February 2014

    linda505 - Hi and welcome to the sisterhood!  Sorry you've found yourself here under these circumstances, but you'll learn very soon to love the women on these boards and the information they can provide.  So make yourself at home and let us know what you need.  We're all here to help!  Smile

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  • linda505
    linda505 Member Posts: 847
    edited February 2014

    Thanks for the warm welcome all!!  I think the hardest thing now is waiting to get started.  But I am ready for the fight.

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  • justachapter
    justachapter Member Posts: 158
    edited February 2014

    linda505,

    Welcome, though I just joined myself today and got the call today.  Been lurking around, appt is on Thursday to get the low down.  Interesting to read that the lumps were not not seen on mammo.  I was a birad 4 due to a cluster of microcalcs and after my horrible biopsy on Friday Dr. who did it said she expected it to be benign.  HOWEVER, after the microcalcs I started feeling around and found a lump in that area.  They looked on mammo before biopsy and didn't see anything.  So, I'm interested to see what becomes of that.

    Positive thoughts through the navigation process.

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  • linda505
    linda505 Member Posts: 847
    edited February 2014

    Hi Momto3boysaz,

    Sorry that you find yourself here too!!  But I guess we are lucky that we have found the forum!!  I now have a schedule of sorts - double mastectomy on March 18th and then chemo after that as it stands now.  Again the waiting for me is horrible - I just remind myself to take deep breaths.  I sure hope you get some good news on Thursday.   My first lump was way to high on my chest - really just below the collarbone - to be seen on the mammo.  But the second one - that was discovered on the MRI - should have been seen on the mammo.  My BS went over tht mammo over and over trying to see if she could see anything that should have clued in the radiologist to look further - but she couldn't see anything.  That is why I decided to get the double mastectomy - I would never feel secure with a mammography going forward as I guess I just have very sneaky breast tissue and sneaky cancer too.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited February 2014

    Linda, 

    I am glad  to see you have a surgery date, just wish it was sooner. Waiting is so hard. Most of us feel like our cancer was sneaky. I have lobular cancer, and it is the "sneaky" cancer, as it does not form a lump but grows in lines or sheets. Weird...I do not think I had ever even heard of Lobular before I was dx. I was & sometimes still feel like the mammogram failed me. The radiologists says no, it found my cancer. Which is true, but that little tumor was an active little bugger & really spread. My personal Dr. Says mammograms are not what most of us think. They do not see everything, especially for us with dense tissue.

    You will learn so much in the next few months, stuff you never wanted to learn about but it is what it is. 

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  • linda505
    linda505 Member Posts: 847
    edited February 2014

    thanks Holeinone!  When I got the date for my surgery I just cried - i was so hoping it would be next week.  i was originally scheduled for the lumpectomy this week and then when they found the other IDC in the other breast everything got cancelled.  I originally found this lump on January 24th so this just feels like it all took too long.  I am in Florida - so this is our season and our medical facilities are just overwhelmed - wish I could have planned this to have happened in the Summer 

    Funny, when I first came on this site before I knew if I had BC and what I kind I read the thread on ILC and how if hides and thought that is what they were going to find  so I have read on that and know that ILC doesn't really seem to get the attention and funding that it should.  Once I get through this AND I WILL!! I am going to make it my mission to do something to help with understanding of the limits of our current diagnostic tools and information on dense breast and detection.  Doesn't help now but I sure wish someone had just once told me I had dense breast prior to my diagnosis.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited February 2014

    Linda, I heard they have passed a law in several states that the mammography centers have to inform you in writing of your dense tissue. I think it was eastern states. I knew I had dense tissue, but assumed that the mammo would catch it before it spread. I was wrong...

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  • justachapter
    justachapter Member Posts: 158
    edited February 2014

    I learned about my dense breasts due to this law.  It was in a form letter they sent after the first mammo.  It was the micro calcs that were biopsied so I'm concerned about the lump that is there that wasn't seen on mammo and that after the biopsy that the Dr. (who performed the biopsy) thought would be benign (they shouldn't speculate) said I could get an U/S once the results came back.  Now I have  a hard hematoma sitting on top of that area from the biopsy.  Just talked to a friend who went through the same thing, originally DCSI, and then IDC once they did surgery and found the lump that didn't show up on mammo.

    I've decided I want to go to MD Anderson here locally and called them today.  After I get my pathology and info. from nurse navigator I'm heading over there for intake.  I used to live in TX and MD Anderson is the best.

    Linda so sorry you have to wait another month.  Hugs to everyone.

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