Angry about two different measurements

MomMichelle
MomMichelle Member Posts: 93
edited March 2014 in Breast Cancer #1
Had my second opinion yesterday and somehow the invasive part of my DCIS originally measured at 0.7mm, was found to be 4mm at the second hospital. Mad because I was considered T1mic (most likely no further treatment)and now I am T1a. I thought a ruler was a ruler, no matter how small. So basically I am looking at almost 6 times the amount of invasive cells. Then, my receptor status was copied from the first report to the second report and not actually rechecked. They don't think there is enough sample to do the FISH testing to double check strongly positive HER2 status (which I was told could be artifact from the DCIS). Doctor is extremely aggressive and is leaning toward chemo. He takes it up to the board at the hospital.

Feel like after researching what I thought I was dealing with for the last two weeks, my world has been turned around again. So frustrated and angry. Who do you trust? Who do you believe? Do I go for a third opinion? I also read that under 5mm of invasion, chemo is not really worth the risks. So confused...don't know what to do. Not dealing with it well at all.

Any thoughts would be appreciated.
Michelle

Comments

  • heidijez
    heidijez Member Posts: 441
    #2
    wow!
    there's quite a disparity between the two measurements! how much time elapsed between first and second opinion? i am sorry that you have to deal with this, but i know if it was me, i would definitely seek a third opinion.

    good luck to you, michelle, i will keep you in my prayers.
  • Jean 0609
    Jean 0609 Member Posts: 2,462
    #3
    Hi MomMichelle
    Sorry to hear about your different diagnosis. Like I've said before, this whole BC crap is like a roller coaster ride. Ups and downs. For me it was first just a lumptectomy. Thought I was done. My margins weren't clear. Then a mastectomy. Thought I was done. Then as a precaution chemo, with a year of Herceptin because I am HER+. Finished my second chemo yesterday. Half way done, two more to go. Hang in there. Remember we are all here for you. Hugs, :>) Jean
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
    #4
    I understand completely.
    I understand completely. After researching, reading everything you can get your hands on you feel like your back at the starting line. I had 3 drs. give me 3 different measurements. I had to go thru chemo I had no choice, so unlike you I wasn't left to decide chemo or not. Wait to find out what the board at the hospital has to say, then decide.
  • Hubby
    Hubby Member Posts: 325
    #5
    Tumor Size
    I would check the size with the first opinion doctor. Donna's surgeon said that when they take the tumor out, they flatten it out; squish it like a pancake, and the recorded size is larger. There is also a chance that the tumor grew between initial diagnosis and your lumpectemy. Either way, you need to be confident you have the complete story before you procede with treatment.

    Bob
  • mariam_11_09
    mariam_11_09 Member Posts: 691 Member
    #6
    Originally the lump in my

    Originally the lump in my breast was measured at 1.5cm then after surgery I was told it was 4cm and I had a 1.2cm mass in a lymph node that no-one, not even 4 doctors could feel in my armpit. I went from lumpecty to mastecomy (with no rads) to now having to do rads in addition to chemo and herceptin. As one of the other members mentioned it is a roller coaster ride and we need to just keep plodding along, putting one foot in front of the other. One thing I have learned though, toss your expectations to the frogs and be open to change. Each time I have fixated on something being a certain way (ie having a lumpectomy or finishing chemo on a certain date) something comes along and turns it on it's ear and that is when I really suffer.

    It seems that you are doing your homework and are asking questions. I agree with going back to your original doctor with this new information and discussing it with him or her. Remember an opinion is an opinion what you need are the facts, why there is a difference between the two measurements, how were they measured and what does this mean with regards to treatment for you.

    good luck and take care.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #7
    mariam_11_09 said:

    Originally the lump in my

    Originally the lump in my breast was measured at 1.5cm then after surgery I was told it was 4cm and I had a 1.2cm mass in a lymph node that no-one, not even 4 doctors could feel in my armpit. I went from lumpecty to mastecomy (with no rads) to now having to do rads in addition to chemo and herceptin. As one of the other members mentioned it is a roller coaster ride and we need to just keep plodding along, putting one foot in front of the other. One thing I have learned though, toss your expectations to the frogs and be open to change. Each time I have fixated on something being a certain way (ie having a lumpectomy or finishing chemo on a certain date) something comes along and turns it on it's ear and that is when I really suffer.

    It seems that you are doing your homework and are asking questions. I agree with going back to your original doctor with this new information and discussing it with him or her. Remember an opinion is an opinion what you need are the facts, why there is a difference between the two measurements, how were they measured and what does this mean with regards to treatment for you.

    good luck and take care.

    I agree with all above statements and experiences ..
    I went from having a core biospy to a lumpectomy in 1 hour . I was asleep in surgery -- no one asked me - if this okay .. size taken from my left breast .. the size of an Orange.

    I was notified 4 days later, that I had DCIS, Hi Grade - and Her2 neu, positive. I spent the next several days on the internet or at the library - gathering information .. I took every phase or statment from my path report, and broke it down ... Call me insane, but this helped me cope with what was coming my way ...

    My entire world and life has been turned upside down by the words ' Breast Cancer '.


    Have your doctor - explain every detail ... write it all down. This is your body, and your life.


    Vicki Sam
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #8
    heidijez said:

    wow!
    there's quite a disparity between the two measurements! how much time elapsed between first and second opinion? i am sorry that you have to deal with this, but i know if it was me, i would definitely seek a third opinion.

    good luck to you, michelle, i will keep you in my prayers.

    Hmmm
    That is quite a difference, but, could your tumor have grown that quickly? Could that be why? I don't know about the size of your tumor having anything to do with whether you have chemo or not, but, I am not an oncologist. I am sure someone with more knowledge than me can post on that. I just thought if your oncologist recommends chemo, you do it, as, you never want any "just what if"?.

    If you feel you need a 3rd opinion, get it. I would if I wasn't feeling right about what I had been told.

    I am so sorry that this has happened to you Michelle. I will be praying for you!


    Sue :)
  • greyhoundluvr
    greyhoundluvr Member Posts: 402
    #9
    Michelle -
    There's no doubt that the changes in findings and treatment plans is one of the hardest things to cope with in this disease. Many of us went through that and it is hard to deal with "surprises." One of the things you said that I find reassuring is thatyour second opinion doctor is taking it to the board. By doing this, he will gather opinions and treatment recommendations from other specialists in the field. My thought would be to wait and see what comes back from them and you can always opt for another opinion once you have all of that information. Best of luck -

    Chris
  • sohardbnme
    sohardbnme Member Posts: 129
    #10
    VickiSam said:

    I agree with all above statements and experiences ..
    I went from having a core biospy to a lumpectomy in 1 hour . I was asleep in surgery -- no one asked me - if this okay .. size taken from my left breast .. the size of an Orange.

    I was notified 4 days later, that I had DCIS, Hi Grade - and Her2 neu, positive. I spent the next several days on the internet or at the library - gathering information .. I took every phase or statment from my path report, and broke it down ... Call me insane, but this helped me cope with what was coming my way ...

    My entire world and life has been turned upside down by the words ' Breast Cancer '.


    Have your doctor - explain every detail ... write it all down. This is your body, and your life.


    Vicki Sam

    I gather info as well
    Vick...

    I did the same thing with my pathology report...You are not crazy...Just well informed...

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