DCIS - ER Neg, PR Neg and HER2 Postitive

Options
Mayk
Mayk Member Posts: 42
edited April 2016 in DCIS (Ductal Carcinoma In Situ)

I know that HER2 testing is not always done on DCIS. I wanted to start a post because they did do HER2 testing on my DCIS. I elected to have a DMX and today at my first and hopefully lasts Oncologist appointment she congratulated me on making a wise choice. She told me that the combination of ER/PR- with HER2+ was a very aggressive form of non herditary form of Cancer. I would not need further treatment including radiation or drugs.

I've seen on several threads about HER2 testing not being done on DCIS. I'm grateful they did the testing on my DCIS, more grateful for my decision, which you all know is a very difficult decision in an area that is quite blurred by opinions on treatment. I hope by sharing this I will help one person. I'm scheduled for my exchange on 12/28 and I'm very much looking forward to moving past this and supporting Breast Cancer as survivor.

Edit - I wanted to add one more note I don't think I've read anywhere. I had three lymph nodes removed. The Oncoligist today told me I should watch for signs of Lymphodema for the next couple of years and if I need to have blood taken or an IV started ask the to use the other arm. Only use that side if the veins on the good side are not working. This was all news to me. I thought with three lymph nodes my chances were very low.


· Share on FacebookShare on Twitter

Comments

  • savgigi
    savgigi Member Posts: 376
    edited November 2015

    They did Her2 testing on my DCIS as well.

    · Share on FacebookShare on Twitter
  • Mayk
    Mayk Member Posts: 42
    edited November 2015

    They did. I did not request it. I had been told they didn't do it on DCIS when I asked. In fact my surgeon on my follow up visit only confirmed the ER/PR neg status and clear lymph nodes.

    · Share on FacebookShare on Twitter
  • april485
    april485 Member Posts: 3,257
    edited November 2015

    Some folks are given the Her2 testing I have heard Mayk although I was not tested. As for lymphedema, your chances are smaller with sentinel node biopsy but not completely non-existent. Always use caution moving forward after having surgery on your nodes, so you minimize any chance, despite the lower odds. It is just the smart and prudent thing to do.

    · Share on FacebookShare on Twitter
  • have2laugh
    have2laugh Member Posts: 132
    edited December 2015

    I just wanted to add something on the lymph edema. Even with just a few lymph nodes removed you can develop lymph edema in arm but you also need to be aware of truncal lymph edema. Our entire body is a pathway for lymph drainage and with more women doing breast conservation which may include radiation you should be aware the lymph drainage in the chest can be disrupted. Fibrotic changes from radiation can also interfere with drainage. There are things you can learn to do enhance drainage-massage taught or performed by physical therapy, dietary changes to reduce inflammation and other simple changes like type and fit of bras or your sleep position that can help. I thought I was pretty prepared for surgery but I did not realize this could be an issue. Knowledge is power and lots out there to minimize impact on daily life so seek help if you have any concerns.


    · Share on FacebookShare on Twitter
  • shready
    shready Member Posts: 4
    edited April 2016

    My DCIS is high grade & HER2+ ER & PR negative. I am having a DMX on May 17. The waiting is the hardest part.

    · Share on FacebookShare on Twitter
  • april485
    april485 Member Posts: 3,257
    edited April 2016

    shready, this is a really old thread so you might want to start your own.

    · Share on FacebookShare on Twitter
  • robinlori
    robinlori Member Posts: 6
    edited April 2016

    I too am having DMX on May 9. This is the second time I've had DCIS. The tested for HER2 and I was positive, ER/PR neg. Scared and sometimes doubting my decision. I'm mostly scared of the post-surgery recovery process. Any thoughts/information on post-surgery process, i.e., tightness around chest, scar tissue, swelling, hematomas, fatigue, lymphedema? Thanks!!!

    · Share on FacebookShare on Twitter
  • shready
    shready Member Posts: 4
    edited April 2016

    I don't have any answers for you since my surgery is after yours. Are you having reconstruction?

    · Share on FacebookShare on Twitter
  • robinlori
    robinlori Member Posts: 6
    edited April 2016

    No, I am not having reconstruction.

    · Share on FacebookShare on Twitter
  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited April 2016

    Hi robiniori:

    I see you joined "May 2016 Surgeries", which is good.

    Sentinel node biopsy carries some risk for lymphedema, so it is important to educate yourself about the condition, self-care, and precautions for people at risk. This is a good website about it:

    Step-up Main Page: http://www.stepup-speakout.org

    Step-up Risk Reduction Page: http://www.stepup-speakout.org/riskreduction_for_l...

    (Note: Those who are at risk (not diagnosed with lymphedema) do not necessarily have to wear compression garments, although some do so by choice and/or on medical advice (e.g., for certain activities). You can seek case-specific advice after surgery. If compression garments are used for risk reduction purposes, it should be following consultation with and under the care of a lymphedema therapist, with a professional fitting and related education.)

    See also here, from page 3 on, the section about precautions for people at-risk for developing lymphedema:

    http://www.lymphnet.org/pdfDocs/nlnriskreduction.p...

    Prior to surgery, I had baseline measurements of my arms taken using a device called a "perometer". It is completely non-invasive and takes about two minutes. Please ask whether you can have such baseline measurements taken before surgery.

    You may also wish to request a referral to a qualified lymphedema therapist for a baseline evaluation, measurements, and educational information before surgery if possible, or if not, soon after surgery. The step-up website also provides information about finding a therapist with appropriate qualifications.

    Step-up Finding a Qualified Therapist page: http://www.stepup-speakout.org/Finding_a_Qualified...

    Hopefully, your surgery will go very smoothly!

    BarredOwl

    Bilateral mastectomy with SNB, no reconstruction (Sept. 2013)


    · Share on FacebookShare on Twitter
  • robinlori
    robinlori Member Posts: 6
    edited April 2016

    Thanks for the great information about lymphedema. Does anyone know if insurance pays for dog-ear revision surgery. My surgeon said it shouldn't happen to me but I am still somewhat concerned about it.

    · Share on FacebookShare on Twitter

Categories