happy and confused

pbrndm5
pbrndm5 Member Posts: 83
in Breast Cancer #1
Well here goes---had lumpectomy and radiation. Finished radiation, sent to medical oncologist to discuss chemo since HER2+. Told don't need chemo(YAY)because of such small tumor. I will be seen by oncologist every 3 mos. to monitor. I think this is great, but now I feel as if I need to do more. Dr. says herceptin won't be given because it works in conjunction with chemo.
Go for 2nd opinion-now this oncologist also says no chemo, but she feels there was some sort of mistake in my pathology. She says one report says ER and PR- and HER2+ and the 2nd report says the opposite. She suggests arimidex for the next 5 years. Possibility that my BC may have had both positive and negatives or maybe there was a mistake.

I am so confused--this cancer stuff always brings twists and turns that really stink!!!!@#$

HELP!!!!!
Denise

Comments

  • aysemari
    aysemari Member Posts: 1,596 Member
    #2
    This is unacceptable
    Denise,

    go for another opinion, that is incredible. You need to know your correct diagnosis
    since your treatment is built on this information. I am really at a loss that you got
    two contradictory pathology results like that.

    You have all reason to be confused.

    Hugs,
  • Kat11
    Kat11 Member Posts: 1,931 Member
    #3
    aysemari said:

    This is unacceptable
    Denise,

    go for another opinion, that is incredible. You need to know your correct diagnosis
    since your treatment is built on this information. I am really at a loss that you got
    two contradictory pathology results like that.

    You have all reason to be confused.

    Hugs,

    I agree with aysemari. This
    I agree with aysemari. This is unacceptable. You need to go for another opinion, this is crazy, this is terrible. You must be at a loss.
    Kathy
  • Sher43009
    Sher43009 Member Posts: 602 Member
    #4
    aysemari said:

    This is unacceptable
    Denise,

    go for another opinion, that is incredible. You need to know your correct diagnosis
    since your treatment is built on this information. I am really at a loss that you got
    two contradictory pathology results like that.

    You have all reason to be confused.

    Hugs,

    No wonder you're confused.
    Contact your surgeon, rad oncol. and any other doctor you've seen so far. Sometimes tissue is saved and can be retested. You need a clear report before yout treatment plan can be made. I'm surprised you went through rads before seeing a oncologist. I'm ER,PR and HER2+, stage 1C, grade 3; did lumpectomy, then chemo, then rads and herceptin, now on tamoxefin for 5 years.

    Hope you get clear answers soon.
    Sher
  • lizzie17
    lizzie17 Member Posts: 548
    #5
    options
    do you live near a cancer treatment, or research center? or can you drive to one that isn't too far away?
    sounds like more information is definitely required.
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #6
    Did anyone discuss an Oncotype DX test?
    Since it sounds like your tumor was small, and I'm also assuming no lymph nodes were involved since chemo was not really recommended.

    From what I've read on this board, the OncotypeDX, in addition to giving a more precise reading on the chance of recurrence for early stage cancer, can give a better reading on ER/PR status, and possibly HER2 status.

    I agree with others that recommend a 3rd opinion, and ask about more testing of your tumor sample since there seems to be conflicting information.

    The not knowing what is really going on is sooooo hard!

    Keep us posted,
    Cindy
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #7
    cindycflynn said:

    Did anyone discuss an Oncotype DX test?
    Since it sounds like your tumor was small, and I'm also assuming no lymph nodes were involved since chemo was not really recommended.

    From what I've read on this board, the OncotypeDX, in addition to giving a more precise reading on the chance of recurrence for early stage cancer, can give a better reading on ER/PR status, and possibly HER2 status.

    I agree with others that recommend a 3rd opinion, and ask about more testing of your tumor sample since there seems to be conflicting information.

    The not knowing what is really going on is sooooo hard!

    Keep us posted,
    Cindy

    Sorry, I don't have more to add .. except .. Please . . .
    please go for another opinion. Your body, your 'life'! Take all reports, path's and any medical records you have. If you insurance permits, and you have the option .. please see a 'Breast Cancer Specialist'.

    Oncotype ... BRCA ... any test out there ..

    Again, be your own best advocate!

    Strength, Courage and less confusion === I wish for you,

    Vicki Sam
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #8
    The pathology report on your
    The pathology report on your tumour should say one thing or another or at least mine did.
    They check the ER/PR and state whether it's pos or neg, the onc reads the report and determines tx from it. They shouldn't leave you confused like that and you don't want to do Arimidex if you don't need to and you really need to know if you are ER- or +. They are not being fair to you. Perhaps they could explain why they differ on the report. It would be good to get a copy of it for your records. You're right it all does "stink"!!
    hugs and good luck
    jan
  • gagee
    gagee Member Posts: 332
    #9
    still confused
    I am off Arimidex because of all the side-effects from it. My joints everywhere are swollen and hurt. Been off the drug for about 10 weeks. See onc. on the 22nd. hope she can help me. I just want to get passed this mess. My underarm (nodes area) is still swollen and some pain. Now my GP and Onoc. want me on Prozac. Say that will help with the mood swings. Where does it get easier?????? When??????

    Sorry to be a downer but I am so sad most days. Try to have a happier outlook but just can't get there.

    Will keep you in my Prayers. That is what keeps me going. I know God will not abandon me.

    Diana
  • New Flower
    New Flower Member Posts: 4,294
    #10
    gagee said:

    still confused
    I am off Arimidex because of all the side-effects from it. My joints everywhere are swollen and hurt. Been off the drug for about 10 weeks. See onc. on the 22nd. hope she can help me. I just want to get passed this mess. My underarm (nodes area) is still swollen and some pain. Now my GP and Onoc. want me on Prozac. Say that will help with the mood swings. Where does it get easier?????? When??????

    Sorry to be a downer but I am so sad most days. Try to have a happier outlook but just can't get there.

    Will keep you in my Prayers. That is what keeps me going. I know God will not abandon me.

    Diana

    Hi,
    Sorry for your situation.
    By the law your biopsy slides should be kept for several years. You can request reexamination of your slides by differen lab and seek a third opinion.
    Good luck
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #11
    Kat11 said:

    I agree with aysemari. This
    I agree with aysemari. This is unacceptable. You need to go for another opinion, this is crazy, this is terrible. You must be at a loss.
    Kathy

    I would suggest going for
    I would suggest going for another opinion also. You need to know exactly what is going on and what treatments are needed. I am so sorry.


    Hugs, Debby
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #12
    Just want to say I agree
    Just want to say I agree with everyone else. You need a clear pathology report. I would think it's unethical for an onc to advise treatment with conflicting reports.

    Let us know how you're doing, and what happens.

    Hugs,

    linda
  • pbrndm5
    pbrndm5 Member Posts: 83
    #13
    thanks everyone
    Thanks for all of your suggestions. You are right, my nodes are clear. Spoke to the 1st oncologist, just yesterday and they are sending everything for retesting-also onco test. Oncologist said that he was not sent both reports from surgeon and that was unacceptable. Onco test was sent yesterday and we should have results withing the next 10-14 days.

    This board is really a great place to vent and get info.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #14
    Gabe N Abby Mom said:

    Just want to say I agree
    Just want to say I agree with everyone else. You need a clear pathology report. I would think it's unethical for an onc to advise treatment with conflicting reports.

    Let us know how you're doing, and what happens.

    Hugs,

    linda

    Please see your oncologist
    Please see your oncologist and get this straightened out or get another opinion.


    Take care,

    Jan
  • sbmly53
    sbmly53 Member Posts: 1,522
    #15
    pbrndm5 said:

    thanks everyone
    Thanks for all of your suggestions. You are right, my nodes are clear. Spoke to the 1st oncologist, just yesterday and they are sending everything for retesting-also onco test. Oncologist said that he was not sent both reports from surgeon and that was unacceptable. Onco test was sent yesterday and we should have results withing the next 10-14 days.

    This board is really a great place to vent and get info.

    It really is a great place to be
    Everyone here helped in so many ways. I'm so happy you found this board.

    I am wishing and hoping that everything will be straightened out and you Onco test will make your direction clear.

    Sue
  • cahjah75
    cahjah75 Member Posts: 2,631
    #16
    Denise
    It would be nice if someone read your pathology report again to determine exactly what your positives and negatives were! I'm surprised oncs didn't question it. I was ER/PR+ and HER2-. Because of the size of my tumor and my family history I had both chemo & rads. Hope you get enough answers to feel comfortable with the recommendations of drs.
    {{hugs}} Char
  • Kylez
    Kylez Member Posts: 3,761 Member
    #17
    pbrndm5 said:

    thanks everyone
    Thanks for all of your suggestions. You are right, my nodes are clear. Spoke to the 1st oncologist, just yesterday and they are sending everything for retesting-also onco test. Oncologist said that he was not sent both reports from surgeon and that was unacceptable. Onco test was sent yesterday and we should have results withing the next 10-14 days.

    This board is really a great place to vent and get info.

    Congrats on clear nodes!

    Congrats on clear nodes!
  • susie09
    susie09 Member Posts: 2,930
    #18
    cahjah75 said:

    Denise
    It would be nice if someone read your pathology report again to determine exactly what your positives and negatives were! I'm surprised oncs didn't question it. I was ER/PR+ and HER2-. Because of the size of my tumor and my family history I had both chemo & rads. Hope you get enough answers to feel comfortable with the recommendations of drs.
    {{hugs}} Char

    I have to agree with the
    I have to agree with the other pink sisters to please get another opinion. Hoping you get answers and will understand better what you are dealing with.


    Good luck!!!

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