DCIS Double negative ER/PR... Anyone?

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

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, 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.

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.

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.

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?

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.

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, 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.

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.

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--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.