meeting with onocologist

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faithhopelove1
faithhopelove1 Member Posts: 7
edited March 2014 in Breast Cancer #1
I had my visit with my onocologist the other day and had many questions, one of which
was if I was ER/PR neg or positive. She said she didn't know as the pathology report did
indicate. I was the one that brought it up and not her. She told me after my radiation
that I would be seeing her and she would recommend Tamoxifen. I asked if there was a test to determine if I could take Tamoxifen and she said no. I am DCIS non-invasive and will begin rads in few days. Anybody else had this kind of conversation?

I know they go by standard of care, in and out, but I feel she should have this info. before recommending any kind of treatment. What if I was negative, highly unlikely but anyone's thoughts on this?

Also, I usually take a testorterone shot every three months to help with libido. (poor guy)
Does anyone know if this is allowed. I plan to contact OBGYN tomorrow but wanted to hear
from some of you people.

THanks,

Comments

  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    #2
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    Strange
    Hello, faithhopelove1, it is odd that your oncologist did not know the hormone results. These are always on the path report. Also, Tamoxifen is given for cancers that tested hormone-positive. Possibly your onc. is assuming the cancer you had was hormone-positive, as 85% are.

    I would definitely pursue these questions with your oncologist; and, if you are not satisfied and she does not appear prepared, I would get a second opinion. Sorry I can't answer your other question about testosterone. My best to you.
  • dmc_emmy
    dmc_emmy Member Posts: 549
    #3
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    Moopy23 said:

    Strange
    Hello, faithhopelove1, it is odd that your oncologist did not know the hormone results. These are always on the path report. Also, Tamoxifen is given for cancers that tested hormone-positive. Possibly your onc. is assuming the cancer you had was hormone-positive, as 85% are.

    I would definitely pursue these questions with your oncologist; and, if you are not satisfied and she does not appear prepared, I would get a second opinion. Sorry I can't answer your other question about testosterone. My best to you.

    I agree with Moopy
    I have not heard of an onc not being able to answer these very standard questions. I think I would look for a second opinion while trying to get a more satisfactory answer from your current onc.

    Personnally, I don't think it is wise to pursue a course of treatment until your dx is complete (or least, with a more satisfactory answer other than, "Don't know").
    dmc
  • Alexis F
    Alexis F Member Posts: 3,598
    #4
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    I' d get a new oncologist
    Your oncologist sounds very unknowledgeable and not helpful at all. I think I would ask her one more time your questions, and, if I didn't get the answers, I would certainly get a 2nd opinion. I wouldn't want an oncologist that couldn't even read a pathology report. Heck, I read my own, thru help on the internet. There is a test to see if you metabolize Tamoxifen. It is called cyp2D6 and it checks your dna to see if you metabolize it. From what I understand, if you don't, there is no sense in taking it. And, I wouldn't take any further treatment until I got answers to my questions. And, most certainly, let everyone know you are on testerone. You may have to stop that. Good luck
  • Jadie
    Jadie Member Posts: 723
    #5
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    Alexis F said:

    I' d get a new oncologist
    Your oncologist sounds very unknowledgeable and not helpful at all. I think I would ask her one more time your questions, and, if I didn't get the answers, I would certainly get a 2nd opinion. I wouldn't want an oncologist that couldn't even read a pathology report. Heck, I read my own, thru help on the internet. There is a test to see if you metabolize Tamoxifen. It is called cyp2D6 and it checks your dna to see if you metabolize it. From what I understand, if you don't, there is no sense in taking it. And, I wouldn't take any further treatment until I got answers to my questions. And, most certainly, let everyone know you are on testerone. You may have to stop that. Good luck

    I agree with everyone - get
    I agree with everyone - get you a new onc. "I don't know" is not an answer for any kind of professional. What kind of dr would do treatment without all of your information. That information is what your treatmtment is based on.

    Good luck with everything
    Jadie<3
  • cabbott
    cabbott Member Posts: 1,039 Member
    #6
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    Dear faithhopelove1,

    You have a right to all your path reports. If they found a patch of DCIS that was large enough, they should have checked it for ER and PR status. If there was some reason they didn't check it, they should have indicated why. However, some small hospitals don't test until the final surgery. My first stop for surgery was like that. I was not terribly impressed and ended up going to a large teaching university hospital that had a speciality in breast cancer after seeing what my hometown didn't offer. If you don't know your status, it makes choosing the right treatment a shot in the dark. I have no idea if they can go back and test it now. If you have no idea, tamoxifen is a pretty safe preventative, but you have to weight the side effects with the outcome. Several of the newbies here have mentioned the test to see if you are tamoxifen resistant or not. I think you would have to contact a teaching university hospital for a consult on that test. Hormones can fuel the growth of many types of breast cancer, so good luck with the sex drive shots. Watch out for herbal remedies too. If it works like a hormone, it probably fuels cancer growth too.

    C. Abbott
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #7
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    cabbott said:

    Dear faithhopelove1,

    You have a right to all your path reports. If they found a patch of DCIS that was large enough, they should have checked it for ER and PR status. If there was some reason they didn't check it, they should have indicated why. However, some small hospitals don't test until the final surgery. My first stop for surgery was like that. I was not terribly impressed and ended up going to a large teaching university hospital that had a speciality in breast cancer after seeing what my hometown didn't offer. If you don't know your status, it makes choosing the right treatment a shot in the dark. I have no idea if they can go back and test it now. If you have no idea, tamoxifen is a pretty safe preventative, but you have to weight the side effects with the outcome. Several of the newbies here have mentioned the test to see if you are tamoxifen resistant or not. I think you would have to contact a teaching university hospital for a consult on that test. Hormones can fuel the growth of many types of breast cancer, so good luck with the sex drive shots. Watch out for herbal remedies too. If it works like a hormone, it probably fuels cancer growth too.

    C. Abbott

    No doctor should say what
    No doctor should say what yours said. You are better off to fire that one and get a new one. This is your life and you want someone that is fighting for you! And, every pathology report should have that information in it. So, get a copy of it for yourself.
  • Akiss4me
    Akiss4me Member Posts: 2,188
    #8
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    Faith....
    ....making assumptions and going by "national averages" so to speak is definitly mistreatment by your current Doctor. If she did not have the results on that pathology report, she should have called for a final path report prior to mapping out your treatment. (I personally would run from someone like this!!!) Sometimes this test is done as part two and is an addition to the initial report. It may be listed seperately. If it was not done, then insist on it. All laboratories keep a sample on a slide of your speciman for future testing (or to send to other labs for genetic testing. etc). If you have no choice but to stay with this Oncologist, then I certainly would stand up and start making demands. Take someone with you if you have to. This is your life and it is not eligable for any guessing games!!! Good luck and please let us know what you find out!! :) Pammy
  • susie09
    susie09 Member Posts: 2,930
    #9
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    Akiss4me said:

    Faith....
    ....making assumptions and going by "national averages" so to speak is definitly mistreatment by your current Doctor. If she did not have the results on that pathology report, she should have called for a final path report prior to mapping out your treatment. (I personally would run from someone like this!!!) Sometimes this test is done as part two and is an addition to the initial report. It may be listed seperately. If it was not done, then insist on it. All laboratories keep a sample on a slide of your speciman for future testing (or to send to other labs for genetic testing. etc). If you have no choice but to stay with this Oncologist, then I certainly would stand up and start making demands. Take someone with you if you have to. This is your life and it is not eligable for any guessing games!!! Good luck and please let us know what you find out!! :) Pammy

    Unbelieveable that a doctor
    Unbelieveable that a doctor would say that. I agree with Pammy, if you have to stay with that doctor, insist on better treatment and communication. And, if you don't have to, find a new one that has a brain and a heart. Good luck!
  • dmc_emmy
    dmc_emmy Member Posts: 549
    #10
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    susie09 said:

    Unbelieveable that a doctor
    Unbelieveable that a doctor would say that. I agree with Pammy, if you have to stay with that doctor, insist on better treatment and communication. And, if you don't have to, find a new one that has a brain and a heart. Good luck!

    Who are the members of your team?
    For cancer there is typically more than one dr working with you, including your GP. You could involve them, too, to help you get the answers you deserve. The suggestion of another facilty is a good one. If there's a teaching hospital, or one that specializes in cancer nearby, I agree, this is the direction I would go.

    Hope you get some answers soon.
    dmc
  • Kylez
    Kylez Member Posts: 3,761 Member
    #11
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    Jadie said:

    I agree with everyone - get
    I agree with everyone - get you a new onc. "I don't know" is not an answer for any kind of professional. What kind of dr would do treatment without all of your information. That information is what your treatmtment is based on.

    Good luck with everything
    Jadie<3</p>

    Yes, I have to agree too
    Yes, I have to agree too with the others. Get a new oncologist. Good luck!
  • Noel
    Noel Member Posts: 3,095 Member
    #12
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    dmc_emmy said:

    I agree with Moopy
    I have not heard of an onc not being able to answer these very standard questions. I think I would look for a second opinion while trying to get a more satisfactory answer from your current onc.

    Personnally, I don't think it is wise to pursue a course of treatment until your dx is complete (or least, with a more satisfactory answer other than, "Don't know").
    dmc

    I also agree with everyone.
    I also agree with everyone. Your oncologist is the one that is suppose to know this and to tell you. I think I would go for a second opinion also. I wouldn't trust the one you have now. It just isn't right. Good luck!
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    #13
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    dmc_emmy said:

    Who are the members of your team?
    For cancer there is typically more than one dr working with you, including your GP. You could involve them, too, to help you get the answers you deserve. The suggestion of another facilty is a good one. If there's a teaching hospital, or one that specializes in cancer nearby, I agree, this is the direction I would go.

    Hope you get some answers soon.
    dmc

    I think you should insist
    I think you should insist and be firm about getting better treatment from your current doctor. And, if that doesn't work, find a new one. Keep us updated!

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