The Rollercoaster Ride Continues

Hubby
Hubby Member Posts: 325
edited March 2014 in Breast Cancer #1
We had the first appointment with the oncologist last Thursday, expecting that he would have the revised pathology from the retested core biopsy. The original pathology from the biopsy said ER+; then the pathology from the tumor said ER-; making my wife triple -. So we get to the appoinment, and it's pretty apparent that the guy just looked at our case 10 minutes before we got there and there is no revised pathology. So he goes through the treatment plan if it is triple negative, which would be AC/T 4 cycles/ 4 cycles. And the rollercoaster spirals downward. He should have cancelled the appointment.

...problem staining slides... pathologist out of office... hand staining slides... pathologist at a full day conference...

Finally, yesterday we are back to ER+. Now they are sending out the tumor for an Oncotype test. But even if chemo is appropriate, it will be CMF not AC/T, and maybe no chemo at all. At least the rollercoaster seems to have bottomed out for now.

I used to like rollercoasters.

Comments

  • pattimc
    pattimc Member Posts: 431
    #2
    So sorry
    You and your wife have to be going through this...it sure would be nice to get some straight answers. I was very fortunate with my doc's. All (onco, radiologist and surgeon) were in the same building and frequently communicated with each about my case. I live in a fairly small town with a premier cancer center so like I said, I was very fortunate.

    Good luck...let's hope no chemo!
  • waffle8
    waffle8 Member Posts: 234
    #3
    Sorry to hear what you all
    Sorry to hear what you all are going thru...Is it possible you can get a second opinion?I think it is important to be able to trust your doc.....Not a fan of rollercoasters myself..
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #4
    Hubby, I agree with Waffle,
    Hubby, I agree with Waffle, I'd get a 2nd opinion. You want to be certain that the treatments are appropriate for the diagnosis. Good luck and I, too, am hoping that your wife does not have to have chemo. But, if she does, it is all do-able. There are plenty of women and men on this site that can attest to that. Good luck and let us know the outcome.
  • greyhoundluvr
    greyhoundluvr Member Posts: 402
    #5
    Hubby
    Sorry you guys are going through it but it sounds like good news that it is back to ER+. It's got to be frustrating that you now have to wait again for the oncotype testing but hopefully it will also be "better" news....
  • ms_independent
    ms_independent Member Posts: 214
    #6
    2nd opinion
    I would definitely go for a 2nd opinion. Even if it is to just send tissue samples to a cancer center pathology department. I don't know if i could totally trust anything you're hearing from that oncologist and pathologist.
    I used to love roller coasters too----not anymore.

    Hugs, El
  • dyaneb123
    dyaneb123 Member Posts: 950
    #7
    Sorry for your frustratin
    Sorry for your frustratin Hubby
    I don't know if it's a possibility for you, but those of us who went to Breast Cancer Centers, where that is all they do, and most testing is done inhouse, seem to be a lot happier with our care...my blood work results were always immediately available...I mean
    within minutes...mammo, biopsy, scans....everything was immediately available ...so no waiting and wondering... It might be worth seeing what other treatment centers are within driving range....
  • dyaneb123
    dyaneb123 Member Posts: 950
    #8
    Sorry for your frustratin
    Sorry for your frustratin Hubby
    I don't know if it's a possibility for you, but those of us who went to Breast Cancer Centers, where that is all they do, and most testing is done inhouse, seem to be a lot happier with our care...my blood work results were always immediately available...I mean
    within minutes...mammo, biopsy, scans....everything was immediately available ...so no waiting and wondering... It might be worth seeing what other treatment centers are within driving range....
  • dyaneb123
    dyaneb123 Member Posts: 950
    #9
    Sorry for your frustratin
    Sorry for your frustratin Hubby
    I don't know if it's a possibility for you, but those of us who went to Breast Cancer Centers, where that is all they do, and most testing is done inhouse, seem to be a lot happier with our care...my blood work results were always immediately available...I mean
    within minutes...mammo, biopsy, scans....everything was immediately available ...so no waiting and wondering... It might be worth seeing what other treatment centers are within driving range....
  • Hubby
    Hubby Member Posts: 325
    #10
    dyaneb123 said:

    Sorry for your frustratin
    Sorry for your frustratin Hubby
    I don't know if it's a possibility for you, but those of us who went to Breast Cancer Centers, where that is all they do, and most testing is done inhouse, seem to be a lot happier with our care...my blood work results were always immediately available...I mean
    within minutes...mammo, biopsy, scans....everything was immediately available ...so no waiting and wondering... It might be worth seeing what other treatment centers are within driving range....

    Less frustrated, but still
    What makes this more frustrating is that we are going to Sloan!! You would think that they would have it together. We are getting a second opinion, although we had to postpone that too; because we don't have all the info yet. Fortunately (or unfortunately) we live on Long Island which is a hot spot for breast cancer.

    Anyone know how long the Oncotype test results really take? They are saying at least two weeks.
  • carkris
    carkris Member Posts: 4,553 Member
    #11
    Hubby said:

    Less frustrated, but still
    What makes this more frustrating is that we are going to Sloan!! You would think that they would have it together. We are getting a second opinion, although we had to postpone that too; because we don't have all the info yet. Fortunately (or unfortunately) we live on Long Island which is a hot spot for breast cancer.

    Anyone know how long the Oncotype test results really take? They are saying at least two weeks.

    FYI CMF is easier than AC I
    FYI CMF is easier than AC I have had both.
  • Hubby
    Hubby Member Posts: 325
    #12
    carkris said:

    FYI CMF is easier than AC I
    FYI CMF is easier than AC I have had both.

    That's what we've heard. My
    That's what we've heard. My wife was really in a crisis over the prospect of AC. Sorry you had to go through both.
  • mjjones453
    mjjones453 Member Posts: 155
    #13
    Hubby said:

    Less frustrated, but still
    What makes this more frustrating is that we are going to Sloan!! You would think that they would have it together. We are getting a second opinion, although we had to postpone that too; because we don't have all the info yet. Fortunately (or unfortunately) we live on Long Island which is a hot spot for breast cancer.

    Anyone know how long the Oncotype test results really take? They are saying at least two weeks.

    Oncotpe test
    I believe that mine took about that long. Business days.
  • MerleBee
    MerleBee Member Posts: 49
    #14
    The Rollercoaster
    I totally understand the constantly evolving up and down ride you are both on! The good news is that it sounds like you are doing it together and that is HUGE! As far as the Oncotype Test mine was back in about 10 calender days. There is only one lab that performs this test (Geonomic). After much anticipation my test came back in the relatively small intermediate category so no clear direction for a treatment plan. I had a choice between chemo or a clinical trial that enters the participant into a database that "randomly" selects 50% for chemo and 50% without. If you are put in the no chemo bucket (the literature they gave me actually said "flip of a coin"), then they watch you for the next twenty years to see if you get cancer again. The ultimate win on this trial will be that someday they may be able to do away with the intermediate category and others will not have the uncertainty...I decided to go with chemo. If this intermediate category was not explained to you I suggest that you do a little research so that you and your wife understand all the possiblities. I will pray that you get "low risk"!

    MerleBee
  • 24242
    24242 Member Posts: 1,398 Member
    #15
    MerleBee said:

    The Rollercoaster
    I totally understand the constantly evolving up and down ride you are both on! The good news is that it sounds like you are doing it together and that is HUGE! As far as the Oncotype Test mine was back in about 10 calender days. There is only one lab that performs this test (Geonomic). After much anticipation my test came back in the relatively small intermediate category so no clear direction for a treatment plan. I had a choice between chemo or a clinical trial that enters the participant into a database that "randomly" selects 50% for chemo and 50% without. If you are put in the no chemo bucket (the literature they gave me actually said "flip of a coin"), then they watch you for the next twenty years to see if you get cancer again. The ultimate win on this trial will be that someday they may be able to do away with the intermediate category and others will not have the uncertainty...I decided to go with chemo. If this intermediate category was not explained to you I suggest that you do a little research so that you and your wife understand all the possiblities. I will pray that you get "low risk"!

    MerleBee

    Time Line
    It seemed to me that it could take more than a couple of weeks. All the info was known by the time oncologist appointment and that was 1 month after my surgery but now they do things before surgery so who knows.
    Hang in there and remember everyone is different so there for no cancer is the same. If you think about it we are all experiments in this cancer business because of all the factors they must consider. I am sure their ability to stage cancer changes all the time with the more they know and it is way different than when I had cancer 14 years ago.
    I just had pathology done on my tumor from 14 years ago because a part of a study and that is when they told me I was HER triple negative and that took more than a couple of weeks alone.
    Hang in there and know that there is so much more that can be done today...
    Tara
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
    #16
    When you have rollercoaster
    When you have rollercoaster drs. it is hard to trust them. In your mind you are asking do they know what their doing.Then you get a second opinion and it is different, so now you're back at square one. I know been there.
  • roseann4
    roseann4 Member Posts: 992 Member
    #17
    ms.sunshine said:

    When you have rollercoaster
    When you have rollercoaster drs. it is hard to trust them. In your mind you are asking do they know what their doing.Then you get a second opinion and it is different, so now you're back at square one. I know been there.

    I would definately be concerned with the lack of preparation.
    I'm shocked that Sloan was so sloppy with this biopsy. One of my friends has Stage IV breast cancer. When they originally did the biopsy on her cancer 7 years ago (no oncotypedx because it was node positive), they said it was HER2-. They were wrong and she did not receive hercepton which could have changed her prognosis. We can't be 100% trusting of biopsy results. I was more confident with mine because I was node negative and could have the oncotypedx test. Everyting matched up with the original biopsy results in my case.

    Roseann
  • Hubby
    Hubby Member Posts: 325
    #18
    roseann4 said:

    I would definately be concerned with the lack of preparation.
    I'm shocked that Sloan was so sloppy with this biopsy. One of my friends has Stage IV breast cancer. When they originally did the biopsy on her cancer 7 years ago (no oncotypedx because it was node positive), they said it was HER2-. They were wrong and she did not receive hercepton which could have changed her prognosis. We can't be 100% trusting of biopsy results. I was more confident with mine because I was node negative and could have the oncotypedx test. Everyting matched up with the original biopsy results in my case.

    Roseann

    My Wife Has Lost Confidence
    My wife has lost confidence in Sloan, which is not good, since they are supposed to be the best around. The thing was that WE had to point out that the pathology results conflicted. If we were not self-educated enough about this, my wife would probably have started AC/T chemo and not been offered Tamoxafin afterwards. Now she is getting the Oncotype done, will have a lesser chemo if required, and then get Tamoxafin; radiation either way due to having a lumpectamy.

    We just want them to pay attention!!!
  • Cindy Ann
    Cindy Ann Member Posts: 101
    #19
    Hubby said:

    My Wife Has Lost Confidence
    My wife has lost confidence in Sloan, which is not good, since they are supposed to be the best around. The thing was that WE had to point out that the pathology results conflicted. If we were not self-educated enough about this, my wife would probably have started AC/T chemo and not been offered Tamoxafin afterwards. Now she is getting the Oncotype done, will have a lesser chemo if required, and then get Tamoxafin; radiation either way due to having a lumpectamy.

    We just want them to pay attention!!!

    Wow!!
    When a person has to give up control over her treatment and trust to her hospital, pathology dept, and doctors it is hard to hear that they made such a awful medical error. I can see why your both (especially your wife )are losing trust and faith. I do not blame her. I have learned the best and biggest isn't always the right hospital or doctor. I too have questioned my doctor and still have questions.I told her I will drive her nuts with questions until I feel 100% secure in her and my treatment plans.I told her if it's a problem tell me now and I will find another doctor. Already have one in the wings.You both don't need someone's ego or lack of follow up with labs, path etc. getting in the way of a 100% accurate diagnosis and treatment plan. You should as I do expect my doctor to be prepared when she or he sees me with knowing my name, my diagnosis , my latest paths etc.. I want to feel like her only patient peroid. You need 100% faith in the team taking care of your needs so you can survive. I wonder if your wife will ever trust them again? She has a lot to deal with. Without trust in your doctor's, hospital, diagnosis, and treatment plan it is enough to drive a person insane.. I hope you get the right answers this time. If not look elsewhere..There are many elsewhere's. I would start looking just in case now..Never hurts to have a doc in the wings..

Discussion Boards