Any DCIS people whose doc's say no need for Oncotype and Her testing?

Cindy Ann
Cindy Ann Member Posts: 101
edited March 2014 in Breast Cancer #1
My surgeon is saying they do not test for Her and oncotype testing for non-invasive cancers like DCIS. Also no need for lymph node testing. Since I am stage 0 grade 2. I am feeling concerned about this. Especailly when my Mom had her cancer in 1 year between mammograms grow to a size of a lemon. It was different then mine. She had half estrogen+ tumor other half neg-. She survived it all. But had all her lymph nodes removed and a mastectomy. Also she was in a different place and age then me.She was 70 and I am 52. She took high dose hormones for 20+ years. I have never taken hormones and am perimenapausal.I just wondered if any of you have been through this experience. I am worried if she takes too much during lumpectomy I will not be a candidate for sentil node mapping. That happened to my Mom. Different surgeon. When asked this stuff she said that I am so early in my cancer that none of the above is necessary. and maybe even radiation will not be necessary once she gets the path report..Before at the 1st meeting she recommended radiation.That also was before the estrogen receptor pathology came back. Help DCIS people.. I am seeing my GYN who is 100% up front and knows this doc on Weds. He likes her a lot he does not work at the SAME hosp.Used to and has a lot of experience with her( in surgery and out) and she is the top at my hosp. So no conflict of interest.He will speak his mind without fear. Also my GYN is a national authority on Breast cancer and Braca genetics. He speaks all over the country at major university's etc.. I trust him. My surgery is boarded for 6/11/10. I just asked for a copy of my estrogen receptor report and already have the other biopsy path report. I just do not want this done wrong.It would help to hear form others like me.I feel blessed that so far it is stage 0 Grade 2. But also know that the lumpectomy could show something different.

Blessings and Hugs to all,
Cindy Ann

Comments

  • ms_independent
    ms_independent Member Posts: 214
    #2
    DCIS too
    I was DCIS also and did not have oncotype testing done. I had to have a mastectomy on the involved breast (long story) and elected to have mastectomy on the other side due to family history and not ever wanting to "go through that again". I did however have sentinal node testing on both sides. 3 nodes from the DCIS side and 1 node from the other side. To be perfectly honest with you, I don't know why oncotype testing wasn't done. I go for my 6 month follow up in June and will ask then. I was so glad to hear I didn't need chemo or radiation (or tamoxofen) that I didn't ask much else.
    It will be interesting for both of us to "get the scoop" on this. I have a fear of reoccurance and would rather have other treatment if it would improve my odds.
    Hugs, El
  • Youcandothis
    Youcandothis Member Posts: 79
    #3
    ms_independent said:

    DCIS too
    I was DCIS also and did not have oncotype testing done. I had to have a mastectomy on the involved breast (long story) and elected to have mastectomy on the other side due to family history and not ever wanting to "go through that again". I did however have sentinal node testing on both sides. 3 nodes from the DCIS side and 1 node from the other side. To be perfectly honest with you, I don't know why oncotype testing wasn't done. I go for my 6 month follow up in June and will ask then. I was so glad to hear I didn't need chemo or radiation (or tamoxofen) that I didn't ask much else.
    It will be interesting for both of us to "get the scoop" on this. I have a fear of reoccurance and would rather have other treatment if it would improve my odds.
    Hugs, El

    I am est+,others-, stage 2A
    My surgeon did not do oncotyping because she said it is not valid for my type tumor, maybe it's the same for you. I'm curious that they don't want to look at the sentinal lymph nodes. My surgeon was sure there was no node involvement, but took the sentinals as a precaution. Both came back positive, so she took 14 more, all negative (praise God). Sounds like you're in a very early stage, hope your treatment is fast and easy!
  • Third_Generation
    Third_Generation Member Posts: 121
    #4
    Youcandothis said:

    I am est+,others-, stage 2A
    My surgeon did not do oncotyping because she said it is not valid for my type tumor, maybe it's the same for you. I'm curious that they don't want to look at the sentinal lymph nodes. My surgeon was sure there was no node involvement, but took the sentinals as a precaution. Both came back positive, so she took 14 more, all negative (praise God). Sounds like you're in a very early stage, hope your treatment is fast and easy!

    The ability to look at the
    The ability to look at the sentinal node is the greatest medical "whoo-hoo" ever (whoo hoo is, I am sure, a medical term)! My sentinal node came back negative and that was so reassuring. I wish that existed when my mother had her surgeries in the 70's and 80's.
    Good Luck with everything,
    Brenda
  • Cindy Ann
    Cindy Ann Member Posts: 101
    #5
    Third_Generation said:

    The ability to look at the
    The ability to look at the sentinal node is the greatest medical "whoo-hoo" ever (whoo hoo is, I am sure, a medical term)! My sentinal node came back negative and that was so reassuring. I wish that existed when my mother had her surgeries in the 70's and 80's.
    Good Luck with everything,
    Brenda

    Sentinal node
    Ok Guys, I am requesting sentinal node biopsy or at least mapping..I love the term "Whoo Hoo." I will never feel safe wwithout it.. Thanks for all the advice.. I will keep you posted..

    Blessings and Hugs,
    Cindy Ann
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #6
    Cindy Ann said:

    Sentinal node
    Ok Guys, I am requesting sentinal node biopsy or at least mapping..I love the term "Whoo Hoo." I will never feel safe wwithout it.. Thanks for all the advice.. I will keep you posted..

    Blessings and Hugs,
    Cindy Ann

    datapoint
    DCIS is January 2009. No nodes were taken, no oncotype testing. No chemo but 33 rads after lumpectomy. I took tamoxifen for 6 months until I had a pulmonary embolism shower and stopped taking it. I had BRAC testing=negative.

    Every surgeon is different, every patient is different, this is just my experience and I'm OK with it. Good luck to you!

    Maureen
  • CarolynMA
    CarolynMA Member Posts: 4
    #7
    I was diagnosed with DCIS
    I was diagnosed with DCIS grade 2 as well (April 09) followed with 2 surgeries, rdx and now tamoxifen. My surgeon did not discuss any of hte testing you mentioned and no lymph nodes were taken. I did and still do have random pain under my arm so sometimes wish they did. Let me know how you make out... I was not aware sentinel node mapping would not be able if a future masectomy were done.
    good luck in June!
  • crselby
    crselby Member Posts: 441 Member
    #8
    DCIS grade 3
    I'm sorry for this awful thing that has taken over your life. Just know that you will get through this and, at some point say, "That was a bump in the road."

    I was 57 last June when I was DXed with DCIS, no family history at all. lumpectomy in July and brachytherapy radiation in September (5 days!). At first the path report did not include even hormone receptivity ("sot standard for DCIS") but both surgeons I consulted wanted it. (Positive by the way) They both hesitated and thought about the sentinal node testing and both decided not to do it, but they both wanted an MRI done to determine if there was any more DCIS or other tumors hiding anywhere (resulted in needeing 2 MRI biopsies which were negative). Even after making a pest of myself asking for Her2 and Oncotype testing with surgeon ("That's up to your oncologist"), radiation oncologist ("not necessary"), and oncologist ("it's never done for DCIS; it's inappropriate") no one took me up on it.

    I don't worry much but my biggest worry is that cancer made it to the lymph nodes. However, DCIS, by definition, hasn't escaped out of the ducts....
    ~~Connie~
  • kate33
    kate33 Member Posts: 24
    #9
    Node Testing
    Not every surgeon is trained in sentinel node biopsy so maybe that is why they didn't suggest it. If yours is make sure they are very experienced in this procedure. Any mistakes can put you at a higher risk for lymphedema. Everyone please realize that if you have had SNB you need to take precautions to prevent lymphedema. My BS said it wasn't necessary but after researching I find that isn't true. Some reports say the rate of LE can be as high as 14% with SNB. Do your research! Once you have had SNB you should not have blood pressure taken or blood drawn on that side. If you have had SNB on both sides they should use your leg for both. Better safe than sorry as there is no cure for LE.
  • SamuraiMom
    SamuraiMom Member Posts: 295
    #10
    Lymph Node testing-DCIS
    My surgeon said it's becoming standard operating procedure these days to go ahead and test the sentinel lymph node. I say why not? They're in there anyway. Better safe than sorry. I had the same DCIS diagnosis as you. Cover your bases. My lymph nodes were clear and I could put my mind at rest. I did not however do the other tests you mentioned. I opted for double mastectomy as well.
    xxoo,
    SamuraiMom
  • Skeezie
    Skeezie Member Posts: 586 Member
    #11
    SamuraiMom said:

    Lymph Node testing-DCIS
    My surgeon said it's becoming standard operating procedure these days to go ahead and test the sentinel lymph node. I say why not? They're in there anyway. Better safe than sorry. I had the same DCIS diagnosis as you. Cover your bases. My lymph nodes were clear and I could put my mind at rest. I did not however do the other tests you mentioned. I opted for double mastectomy as well.
    xxoo,
    SamuraiMom

    If my lumpectomy would have had clean margins
    I would never have had a Sentinel Node Biopsy. But one of the margins was not as clear as my surgeon wanted and so we did a wide reexisonal biopsy and then did the Sentinel Node at that time. He took out a huge amount of tissue the second time and still didn't get a clear enough margin on one side so I chose mastecomy. A lumpectomy is not going to make Sentinel Node testing impossible...but if you get clear margins why do the nodes? You know once they take some nodes, even the Sentinel Node and usually the couple of small ones next to it, you can't have blood drawn or blood pressure taken in that arm again...this is to give us some protection against lymphodema. No ono (can't think of the full name, senior moment) test for me because I am triple neg and they determined that with the first lumpectomy.

    Truthfully, a surgical biopsy is not a huge deal (mentally it's huge tho) so it's not like they are cutting you up in little pieces, but it's a darn good way to get a true picture of size and stage and type of the tumor.

    Hugs, Judy :-)

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