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DCIS Double negative ER/PR... Anyone?

Mayk
Mayk Member Posts: 8

Is there anyone who can share their journey? My surgeon said this is not seen often and could mean if it came back as IDC it might come back as a triple negative. She's recommening DMX. Im meeting with the PS and the OCO next week with a long let of questions.


So much confusion... Would love real life examples.

Comments

  • netrajkr
    netrajkr Member Posts: 10
    edited September 2015

    Hi Mayk ,I had double negative DCIS ...I had a masectomy on my right side on June 24th...The size of the lump was big so lumpectomy was not an option or me..I don't know why your surgeon is recommending BMX ? do you have any other factors that makes you high risk? My surgeon and I don't want to touch the heathy breast ..

    Wish you luck and strength in this journey..


    Hugs and love



  • Mayk
    Mayk Member Posts: 8
    edited September 2015

    Thank you for your reply. This double negative diagnosis has really thrown me into a tail spin. Did you do sentinel biopsy too? She's wants me to do the mastectomy on the left. She just said if I was concerned with being lopsided I might consider both. I also have implants that have to be removed. Which I plan to do.

  • netrajkr
    netrajkr Member Posts: 10
    edited September 2015

    Yes ,I did the SNB too ..3 nodes were removed & fortunately they all were negative and I was done with only surgery ..No chemo or radiation thanks to God always .Now ,it's 4th month ..I didn't want to do reconstruction..& till now I'm very happy with the decision..


    I would suggest get a second opinion from another surgeon too..I did that too and in my case both said exactly the same thing..Don't sweat too much on double negative. In a way it's good because I don't have to take Tamoxifen as it cannot benefit me in any way ..

    You will get through it just try to be positive...

  • Mayk
    Mayk Member Posts: 8
    edited September 2015

    thank you ❤️ Been one of those tearful days with lots of reading...

  • gtgirl
    gtgirl Member Posts: 19
    edited September 2015

    Mayk, I am sorry to hear of your dx. I am also ER/PR negative intermediate/high grade. I had a single mastectomy (left). I have never been told what you have been told.

  • Mayk
    Mayk Member Posts: 8
    edited September 2015

    thank you gtgirl. I've been all over the board on my thoughts about this. I think the weekend is the worst. I do lots of reading but still have more appointments. Lumpectomy Radiation, SMX or DMX. All tough choices.

  • blinthedesert
    blinthedesert Member Posts: 37
    edited September 2015

    Actually ER/PR negative (double negative) could be a non-obligate precursor for invasive disease (meaning it doesn't have to progress) of either triple negative or HER2+ subtypes - per the "subtype designation": http://ww5.komen.org/BreastCancer/SubtypesofBreastCancer.html Both are sort of bad, compared to ER+ disease.

    ER/PR negative is "typically" high grade, so it has a double whammy in terms of recurrence rate: high grade lesion and doesn't benefit from hormonal therapy (which halves recurrence rate). It is also on the rarer side, so it isn't as well characterized by long term follow-up studies.

    I chose lumpectomy and radiation - and still feel good about my cancer free status in the long term, but in many cases the extent of the disease is greater in ER/PR negative cases, which would possibly make mtx a better option.

    Good luck to you in your treatment decisions.

  • Mayk
    Mayk Member Posts: 8
    edited September 2015

    BLinthedesert


    THANK YOU!!! That's one of the best article's I've read and I've tried to read everything I can get my hands on. I actually made my decision about 30 minutes before you posted this and this just reassured me I'd make the right and best decision. I will be going through with the DMX.


    Warm regards,

    M

  • juliahen
    juliahen Member Posts: 4
    edited September 2017

    I had a lumpectomy 10 days ago, dcis grade 3 ER-, PR-, breast surgeon said no need to test for her2 or to test lymph nodes, wondering why, is this common procedure. No family history completely blind sided by this and want to make sure I am covering everything.

  • Sitti
    Sitti Member Posts: 89
    edited September 2017

    juliahen,

    I'm sure someone will come along and give you the medical reasonings but just wanted to say I was also grade 3, ER-, PR-, no testing done for her2. That is pretty standard. No lymph nodes tested with lumpectomy. I ended up having BMX and so 1 or 2 sentinel lymph nodes were tested (on DCIS side) since once breast tissue is removed they can no longer locate sentinel node/nodes. I'm assuming you will have radiation? Otherwise, sounds like you are doing the standard procedures. Wishing you the very best.

  • juliahen
    juliahen Member Posts: 4
    edited September 2017

    Thank you for your reply. I am still learning some of the acronyms - what is BMX? I meet with the radiation oncologist this week and am assuming radiation is the next step. Physically I am doing fine but mentally am finding this way tougher than I thought I would. I know prognosis is good but now worry there is more cancer somewhere else. I am also nervous about radiation. How are you doing?

  • MTwoman
    MTwoman Member Posts: 228
    edited September 2017

    Hi Julia, welcome to BCO! I don't think it is standard to test for HER2 in pure dcis yet, as the research has not been consistent on what it actually means in dcis. There have been conflicting studies, so until providers know how to use that information, it isn't routinely collected. Not all surgeon's perform SNB either, although some do. If the surgeon thinks there is a chance of there being any invasive component, or their protocols call for it, they do. Per the NCI, while having a family history of bc increases the risk for a woman, the percentage of women who have bc with a known genetic mutation is only about 10%. So that is an important piece of information, but not the only piece by all means.

    I do know the feeling of being worried about "cancer somewhere else". At some point, you'll to come to the point where you trust in your team and the decisions you've made together. It may take some time. Give yourself a break about that. Your diagnosis is still new and you haven't even finished treatment yet. Over time, you'll begin to get a sense of your "new normal".

    There are a lot of us here who've been through it, so definitely reach out!

    (BMX is bilateral mx.)

  • Sitti
    Sitti Member Posts: 89
    edited September 2017

    Juliahen, I'm doing well. As MTwoman said BMX is bilateral mastectomy. After my lumpectomy they needed to get better margins in one area (margin was 1mm and they wanted at least 2mm). I have smaller breasts and after learning the area was almost twice the size they thought, I reconsidered and went with BMX, and with that I did not need to have rads. I still have my exchange surgery which is coming up in 2 weeks and then (hopefully) done. Keep us updated on how you are doing.

  • kkubsky
    kkubsky Member Posts: 47
    edited September 2017

    Juliahen- I was diagnosed January 2016 with DCIS, 18mm ER/PR- grade 3. Had lumpectomy and radiation. So far so good. Have had 6 month post treatment mammo, and 1 yr mammo and ultrasound....all good. Also see drs for clinical exams in between imaging.

    At first I wanted a mx but the team of drs that reviewed my case felt lumpectomy/rads was the way to go. I was a basket case at first but it does get easier after time. Still have my crazy moments every now and then. Try to stay off the internet....it may help for some but it just made me more nuts than I already was...

  • Suzi_4
    Suzi_4 Member Posts: 4
    edited October 2017

    hi juliahen i have dcis pure high grade and i had lumpectomy 3 weeks ago my doctor wont me to take tamoxifen for 5 years i don't if tamoxifen is working for me im er - pr - .thanks

  • Suzi_4
    Suzi_4 Member Posts: 4
    edited October 2017

    hi juliahen i have dcis pure high grade and i had lumpectomy 3 weeks ago my doctor wont me to take tamoxifen for 5 years i don't if tamoxifen is working for me im er - pr - .thanks

  • MTwoman
    MTwoman Member Posts: 228
    edited October 2017

    Suzi, my oncologist told me that there isn't good evidence supporting taking Tamox in hormone negative dcis. Unless you want to take Tamox, you might want to get a second opinion.

  • Sitti
    Sitti Member Posts: 89
    edited October 2017

    Suzi_4, I'm a little surprised that rads aren't on the table for you with grade 3 hormone negative DCIS since you had LX. (purely based on my limited layman's knowledge) Was the area very small perhaps or are you scheduled to have rads? My BS also said no hormone therapy since my DCIS was hormone negative. Maybe a second opinion would help you feel better about treatment plan.

  • juliahen
    juliahen Member Posts: 4
    edited October 2017

    I have been told no tamoxifen as double negative ER/PR. Had a lumpectomy on 8/22 and am 15 treatments in on my radiation, 19 to go. So far so good although skin breakdown is beginning. Worst side effect is the fatigue - I feel constantly tired even after a good night's sleep.

  • MTwoman
    MTwoman Member Posts: 228
    edited October 2017

    juliahen, do your best to just give yourself the time and rest you need! I know it is hard for many folks to take good care of themselves (much easier for us to take care of others, huh?), but it is important. ((hugs))

  • juliahen
    juliahen Member Posts: 4
    edited October 2017

    It sure is important to look after yourself. I found this description of fatigue that really rang true and I shared with my husband and 3 teenage boys. I am lucky to work from home most days so can sneak in a nap between calls.

    Fatigue is hard to describe. You feel like you don't have any energy and are tired all the time. But there's not a specific cause, such as doing errands all day, working out, or other exertion. When you're tired from exertion, if you get enough sleep that night, you usually feel better the next day. With fatigue, you feel generally tired all the time and lose interest in people and the things you normally like to do.

    Fatigue is the most common side effect of breast cancer treatment. Some doctors estimate that 9 out of 10 people experience some fatigue during treatment. Fatigue from treatment can appear suddenly and can be overwhelming. Rest doesn't ease fatigue and it can last for months after treatment ends.

    Symptoms of fatigue include:

    • lack of energy
    • sleeping more
    • not wanting to do normal activities or being unable to do them
    • paying less attention to personal appearance
    • feeling tired even after sleeping
    • trouble thinking or concentrating
    • trouble finding words or speaking
  • Suzi_4
    Suzi_4 Member Posts: 4
    edited November 2017

    hi Julia i Will start with radiotherapy next week with dcis high grade pr neg er neg my specialist sad not to have radiation just tamoxifen i told him I'm having radiation

  • Linwentz
    Linwentz Member Posts: 23
    edited November 2017

    Suzi--I was diagnosed with DCIS ER/PR -. I had a lumpectomy followed by two re-excision surgeries to obtain clear margins. I am now receiving rads to ensure any stray cancer cells are destroyed. I am not a candidate for Tamoxifen or any other hormone drug. I would make sure that you are diagnosed ER/PR negative or get a second opinion. Something sounds off.