Getting a 2nd opinion....more baffled now than ever!!

traceyt
traceyt Member Posts: 77
edited March 2014 in Breast Cancer #1
How did I go from the best case senerio to a double mastectomy?!
So I met with my surgeon today to discuss my final pathology and the not so good margins that were obtained. I had all the confidence in the world in my surgeon until today, she had taken my case to a team of Dr to discuss-- my dx DCIS non invasive estrogen/progesterone +, I had the MRI which showed non invasive as well as the lumpectomy also non invasive. The sight of the DCIS was more than they thought or that even showed up on any of my tests, I am so confused as to why it didnt show up on any tests when I asked how that could be her reply was she just didnt know. I asked since the extend of the cells affected didnt show up on any test how could I be sure my left breast was ok to which the reply we really dont know and if that was me in your chair I would have both taken off. I am to terms with having to have the mastectomy what I am not to terms with is they have no way of detecting cancer cells in my body. Needless to say we will be getting a second opinion on Tuesday
Oh and by the way one of the Dr on the panel she took my case to was the one that did my wire loc before surgery he came in and asked if I understood my dx, I said yes then he said so you know DCIS is not "real" cancer and after my lumpectomy I would be cured! I know right!
This is just another example of how not two cases are the same
((hugs)) to all and thank you for letting me vent

Comments

  • Kylez
    Kylez Member Posts: 3,761 Member
    2nd opinion for sure!
    You do need to get a second opinion. Everything you wrote is very confusing. You had mammograms, MRI's, PET scan? You have had the surgery? No treatment can be set until after surgery and until after the patholgist delivers his report, which can vary from what you are told pre-surgery.

    Sometimes, test don't show up all of the cancer. That is why when you go in for surgery sometimes, they have to take out more tissue than they might have originally told you. They have to get clean margins. For an oncologist to say, I dont' know, is not acceptable.

    Run to another oncologist. This is your life and your body.

    Please update us!
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    Kylez said:

    2nd opinion for sure!
    You do need to get a second opinion. Everything you wrote is very confusing. You had mammograms, MRI's, PET scan? You have had the surgery? No treatment can be set until after surgery and until after the patholgist delivers his report, which can vary from what you are told pre-surgery.

    Sometimes, test don't show up all of the cancer. That is why when you go in for surgery sometimes, they have to take out more tissue than they might have originally told you. They have to get clean margins. For an oncologist to say, I dont' know, is not acceptable.

    Run to another oncologist. This is your life and your body.

    Please update us!

    I would get a 2nd opinion
    I would get a 2nd opinion too Tracey. Your oncologist now sounds too unknowledgeable.

    But, in their fairness, what you are told before surgery can change dramatically after surgery. There is no way they can know how much cancer there is until they actually operate on you. That is why patients should be told, to wait until the pathology report to actually know what you are dealing with. That is when the treatment plan is laid out.

    Good luck on Tuesday!
  • traceyt
    traceyt Member Posts: 77
    DianeBC said:

    I would get a 2nd opinion
    I would get a 2nd opinion too Tracey. Your oncologist now sounds too unknowledgeable.

    But, in their fairness, what you are told before surgery can change dramatically after surgery. There is no way they can know how much cancer there is until they actually operate on you. That is why patients should be told, to wait until the pathology report to actually know what you are dealing with. That is when the treatment plan is laid out.

    Good luck on Tuesday!

    I have had the lumpectomy
    I have my pathology report from the lumpectomy they were able to get all the cells but in 2 areas the margin was 1mm. The 2nd opinion I am getting if from an onocology surgeon. The surgeon that did the lumpectomy was a general surgeon.
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    traceyt said:

    I have had the lumpectomy
    I have my pathology report from the lumpectomy they were able to get all the cells but in 2 areas the margin was 1mm. The 2nd opinion I am getting if from an onocology surgeon. The surgeon that did the lumpectomy was a general surgeon.

    Oh ok Tracey. What do you
    Oh ok Tracey. What do you mean though about they got all of the cells except in 2 areas the margin was 1mm? And, did you have your nodes removed and tested too?
  • aurora2009
    aurora2009 Member Posts: 544 Member
    DianeBC said:

    Oh ok Tracey. What do you
    Oh ok Tracey. What do you mean though about they got all of the cells except in 2 areas the margin was 1mm? And, did you have your nodes removed and tested too?

    Tracey
    I didn't have the same type of BC, instead I had IDC with clean nodes, but I did have a lumpectomy with not so clean margins ( 1mm on surface side, almost the same as yours), and the recommendation from my surgeon was a re-incission, come to find oiut later it was really a partial mastsectomy. But all went well, my breast still looks almost the same, although after the first surgury, there was no difference, now only I can tell that about a quarter is missing. I would definately get a sedond opinion from a breast cancer surgeon, it might make all the difference in the world.

    Good luck to you and keep your chin up. I know waiting for that new appt. is tough.

    Aurora
  • taleena
    taleena Member Posts: 1,612 Member
    Tracy, I too went for a
    Tracy, I too went for a second opinion, only because I did not feel comfortable with the first oncologist... Though the wait for my final treatment plan has long been delayed, it was the best decision I ever made. I really believe that if you are concerned in any way, you should definately get that second opinion... please let us know how it goes. And please know that you can come here and vent anytime... we're here for you!

    ♥ & hugs,

    ~T
  • lanie940
    lanie940 Member Posts: 490
    Kylez said:

    2nd opinion for sure!
    You do need to get a second opinion. Everything you wrote is very confusing. You had mammograms, MRI's, PET scan? You have had the surgery? No treatment can be set until after surgery and until after the patholgist delivers his report, which can vary from what you are told pre-surgery.

    Sometimes, test don't show up all of the cancer. That is why when you go in for surgery sometimes, they have to take out more tissue than they might have originally told you. They have to get clean margins. For an oncologist to say, I dont' know, is not acceptable.

    Run to another oncologist. This is your life and your body.

    Please update us!

    I agree. One of my best
    I agree. One of my best friends had DCIS and she has a mastectomy with immediate reconstruction (took fat from abdomen) Although she did have some drainage from her nipple. So, she opted to have the mastectomy. That was 10 yrs ago. She is doing well, except she told me this morning that they want to check her overies and do some vaginal ultrasound. the new GYN she went with felt something in her reconstructed breast, but it could possibly be necrosis which they say is normal form her type of surgery/situation. So, I'm keeping my fingers crossed for her.
  • traceyt
    traceyt Member Posts: 77
    DianeBC said:

    Oh ok Tracey. What do you
    Oh ok Tracey. What do you mean though about they got all of the cells except in 2 areas the margin was 1mm? And, did you have your nodes removed and tested too?

    No nodes removed
    Diane
    from all the tests I had (MRI,Ultrasound for wire loc, post biopsy mammo)the DCIS was in the small area where the biopsy was done and the biopsy path report showed it to be non invasive because of all that they did not feel the need to test the nodes. Yes my surgeon said they got all the DCIS but close to the surface it was only 1mm of margin and she didnt feel as though she could take anymore tissue without taking the nipple to get the better margin, on a re excision the other area that was 1mm wasnt a problem plenty of tissue to get better margin, I guess that is why I am so baffled as to why she would recommend something so radical
  • Kylez
    Kylez Member Posts: 3,761 Member
    traceyt said:

    No nodes removed
    Diane
    from all the tests I had (MRI,Ultrasound for wire loc, post biopsy mammo)the DCIS was in the small area where the biopsy was done and the biopsy path report showed it to be non invasive because of all that they did not feel the need to test the nodes. Yes my surgeon said they got all the DCIS but close to the surface it was only 1mm of margin and she didnt feel as though she could take anymore tissue without taking the nipple to get the better margin, on a re excision the other area that was 1mm wasnt a problem plenty of tissue to get better margin, I guess that is why I am so baffled as to why she would recommend something so radical

    After reading more of your
    After reading more of your story Tracey, yes, I think you really should get a second opinion. I can't see why they would recommend a mastectomy. Let us know what you decide.


    ♥Kylez♥
  • tommaseena
    tommaseena Member Posts: 1,769
    taleena said:

    Tracy, I too went for a
    Tracy, I too went for a second opinion, only because I did not feel comfortable with the first oncologist... Though the wait for my final treatment plan has long been delayed, it was the best decision I ever made. I really believe that if you are concerned in any way, you should definately get that second opinion... please let us know how it goes. And please know that you can come here and vent anytime... we're here for you!

    ♥ & hugs,

    ~T

    2nd opinion
    I went for a second opinion because the general surgeon that I had for my steriotacic biopsy told me that only a lumpectomy was needed but I had DCIS with invasion and did not feel comfortable with what he said.

    The person I saw for my second opinion was a breast surgeon and she and the team highly suggested a mastectomy because they could not tell where the invasion was. I opted for a double mastectomy and they agreed.

    This was my decision based on the information that I received fro my second opinion staff.

    If the first doctor had done the special tests and staining on the tissue he obtained then I would not have needed a second opinion but I still would have seen a surgeon that only specialized in breast surgery.

    Best wishes for you.

    Hugs,
    Margo
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    I agree with the rest, 2nd
    I agree with the rest, 2nd opinion. Please let us know what you find out Tracey!
  • susie09
    susie09 Member Posts: 2,930
    traceyt said:

    No nodes removed
    Diane
    from all the tests I had (MRI,Ultrasound for wire loc, post biopsy mammo)the DCIS was in the small area where the biopsy was done and the biopsy path report showed it to be non invasive because of all that they did not feel the need to test the nodes. Yes my surgeon said they got all the DCIS but close to the surface it was only 1mm of margin and she didnt feel as though she could take anymore tissue without taking the nipple to get the better margin, on a re excision the other area that was 1mm wasnt a problem plenty of tissue to get better margin, I guess that is why I am so baffled as to why she would recommend something so radical

    I don't understand why she
    I don't understand why she would recommend something that radical either Tracey. For sure get a 2nd opinion. It just doesn't make sense to me. Let us know!

    ♣Susie♠
  • Noel
    Noel Member Posts: 3,095 Member

    I agree with the rest, 2nd
    I agree with the rest, 2nd opinion. Please let us know what you find out Tracey!

    When it comes to your life
    When it comes to your life and treatment, I always recommend a 2nd opinion. It certainly can't hurt. Update us when you can.

    ☺♥ Noel ♥☺