DCIS w/singal mass of micro invasion

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AnewBeginning
AnewBeginning Member Posts: 536

I was dx w/DCIS stage 0 and chose to do a lumpectomy.  After the lumpectomy the pathology report came back saying the DCIS had broken through the duct and there was a  a single mass of micro invasion.  My doctor did not biopsy the Sentinel nodes and thinks all is good because he got wide enough margins but from reading different situations on the boards Im wondering if I should see and Oncologist, which my doctor thought I had no need to.   Any suggestions would help.

AJ

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited March 2011

    Hi and welcome to our fearless club! Your cancer was caught early and that is great news! 

    While surgeons certainly see a lot of cancer, it's the oncologists who are the cancer experts. I would make an appt. ASAP to see an oncologist (or two) and get his/her opinion on your pathology report. Bring any biopsy results with you too. 

    Do *everything* in your power NOW to determine if you need further treatment. An oncologist is most definitely part of this process.

    Good luck and keep us posted!

  • shannonW
    shannonW Member Posts: 186
    edited March 2011

    I totally agree with the above. See an oncologist. I had my appt with the oncologist scheduled even before I had my BMX on 2/25/11 and my patho after the surgery showed no invasion. Call ahead and get your pathology report so you can study it before you see the onco. There are plenty books to show u how t understand the lingo. Knowledge is power!! All the best to you!

     DCIS w/Paget's Disease, 3cm, stage 0, grade 2-3, 0/2, ER+/PR-

  • petjunkie
    petjunkie Member Posts: 317
    edited March 2011

    I definitely think it's worth talking to an oncologist and getting an opinion. Depending on the pathology, you might be able to take tamoxifen or herceptin or some other treatment that would reduce your chance of recurrence.

  • mouse51
    mouse51 Member Posts: 29
    edited March 2011

    I agree with everyone on seeing an oncologist - they are the experts in determining the course of treatment.  Since it appears to be an early stage, the oncologist will probably recommend sending a sample for oncotyping - your oncotype score gives the oncologist a better idea of what treatment to recommend.  Good Luck!

  • CarylC
    CarylC Member Posts: 230
    edited March 2011

    I don't want to scare you but my original diagnosis was DCIS with 2 microinvasions.  Before my bilateral mx, my BS was calling this "pre-cancer" even with the microinvasions and telling me and my family not to worry about it at all.  She was doing sentinel node biopsies on both sides though, thank goodness, as it turns out I had nodal involvement after all and a rather large tumor, not just microinvasions.  My final dx turned out to be IDC, Stage IIb.  I would definitely go see an oncologist just to be sure.

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    Rennasus thanks for your feedback.  I am now looking for an oncologist but having a hard time because I hate just picking one off the internet or the phone book.  I want to post on this forum for a NYC onco as I rather go to one that has been recommended from good experience. Only thing is I dont know which forum to put it on......any suggestions?

    hugs

    AJ

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    My doctor made me believe from the beginning that I had no need to see an Onco.....boy have I learned alot here and on the internet.  Thanks and hope all is well with u!

  • proudtospin
    proudtospin Member Posts: 5,972
    edited March 2011

    I live in NJ and my onco is at hackensack, I can not say enough good things about their cancer doctors

    I would tell you to call Donna Mcnamara (my onco and my diagnosis is very close to yours)...problem is she is on maternity leave

    Dr Weintraub is one of the docs covering for her, I actually have an appt with him this wed.  Have only heard good things concerning him so would recommend calling their cancer center

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2011

    AJ, I had DCIS with a microinvasion as well and both surgeons I talked to told me that I had no choice but to have an SNB.  One of the surgeons explained that even with an invasion as small as a microinvasion (a true microinvasion is only 1mm in size or smaller), there's about a 10% chance of nodal involvement.  I've read a few studies on this and what I've read seems to confirm this. 

    If no nodal involvement is found - I didn't have any - then usually the treatment for DCIS-Mi is the same as the treatment for pure DCIS, and the prognosis is virtually the same.  The only difference in prognosis is a very very small risk of mets, due to the presence of that tiny amount of invasive cancer.  The risk is low enough that usually treatments such as chemo and Herceptin (which are both systemic treatments that are not given to those who have pure DCIS) aren't recommended, assuming that you have only one or two true microinvasions (1mm).  Every treatment comes with side effects and with such a small amount of invasive cancer, the risks from the treatments can sometimes be greater than the risks from the cancer.  

    That's what I know based on my situation and what I've read about DCIS-Mi since my diagnosis. As the others have suggested, the best thing for you to do is to talk to an oncologist so that you understand how this tiny amount of invasive cancer affects you.  The oncologist can also advise you on whether or not an SNB would be a good idea for you.  Based on your risk level, he/she might also discuss Tamoxifen, if your cancer is ER+.  Tamoxifen is given to women with DCIS and/or invasive cancer.  It reduces the risk of a local (in breast) recurrence, a distant recurrence (i.e. mets) and provides some risk reduction against a new breast cancer in the future, in either breast.  

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    I am now waiting for my pathology report to be faxed to me........is that about all the onco would need at my first appt?

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    thanks for your reply..........I cannot take Tamox because I am not ER/PR+

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    My doctor never told me anything about onco scores.........I feel like not enough was explained to me.

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    Beesie

    Thank you for your informative post to me.  I am learning alot on the internet and from all you wonderful gals.  I wish I knew then what I know now.  I am really concerned and feel my surgeon has not told me enough other than..........before he knew there was a "single mass of micro invasion" there was a 1% chance of recurrance and after the path report I now have a 3% chance of recurrance.  He never mentioned that I am now in a different stage other than DCIS stage 0.  When I had my lumpectomy I had Radio Frequency Ablation in which a study has been ongoing for the past 6 years.  I was told that would be in place of Radiation and I was happy not to have to go through rad.  I cannot take Tamox because I am not ER/PR + so he just told me I would have to be watched closely, ie: mammo's every 6 months.  I was happy when I was told protocol did not involve Sentinel nodes for DCIS but now I am really upset and its destroying me.  I am so afraid of lymphedema and it seems to happen to so many woman.  Again I thank you for your input.  Now I have to pray I can get a quick appointment with Onco and not have to wait weeks.

    BTW its really nice to me you but of course I wish it was under better circumstances.

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    Proudtospin, love the name!

     NJ is quite a trip for me but thanks for the referral.  I was hoping to get referrals rather than go to an Onco on the blind.  Need to start writing questions to ask so I am prepared.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    My sister had DCIS, lumpectomy and rads and did not see a oncologist !  I thought  she HAD to just to get her own questions answered.  She calls me with questions, but there can be different variables..... an oncologist would be your best source.  If you are not happy, get a second opinion.

    Can you ask around friends, co-workers?   one in 8 women had BC.  Are you far from SLOAN-K ?  I know an oncology nurse there

    Just don't worry - your cancer is extremely early stage - probably 0.  AND don't drive yourself crazy reading a lot on the Internet 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    Don't you take Tamox for ER/PR positive?  It shuts down the estrogen

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    one more thing.  Lymphodema is not a common side affect when just the Sentinel Nodes are removed.  You just need to take precautions like not getting your blood pressure on that arm.

    Oh, i see you have made arrangements with an oncologist with a good recommendation  - GREAT

    (edited)

    Keeo us posted 

  • AnewBeginning
    AnewBeginning Member Posts: 536
    edited March 2011

    Rubyeye

     I am from the NYC area near Sloan but they dont take my insurance.  I did not make an onco appt as of yet but plan to on Monday.  I am ER/PR neg so I cant take Tamox. Thx for the feedback.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    OK - I thought one of your posts said you were +.

    Good Luck - stay positive

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    i did look at the article from LHJ.  The information came from Dr. Susan Love.  Doesn't really matter the source where you found the article

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