Bilateral IDC, anyone?

Jlimo

Late July, dx on R. MRI, mammograms, USs, and biopsies netted me a Thursday afternoon (prior to everybody's Labor Day 4 day weekend) comparable dx on L, with equivocal HER2 status--FISH pending. Surgical re-consult on Tuesday. R lumpectomy had been planned for 9/13 with subsequent radiation.

Can anyone share their experiences with bilateral IDC treatment?

vlnrph

This was not my experience but, whenever I hear about somewhat unusual cases, I wonder whether genetic counseling has been suggested. Even with minimal family history, mutations can be present and ‘hide’ through a couple generations of male ancestors, for instance.

Being early stage with small tumors makes lumpectomy an obvious choice. However, should any hereditary defect be lurking, your treatment plan may change...

Ingerp

While many of us have had bilateral BC, there aren’t many who have it at the same time. In some ways it seems like you can get the surgery/treatment over with pretty efficiently. If your cancers are different types, your treatment will be based on the more aggressive one. I agree about genetic testing, although if it were me, I wouldn’t let it delay surgery. I was committed to lumpectomies and didn’t have genetic testing until after I was finished with treatment. The only reasons I did it were I would have gotten more frequent monitoring if there had been positive results, and it might have led to a hysterectomy. (Mine came out negative.)

Jlimo

I appreciate your feedback.

I did have blood drawn this week for genetic testing. Even before the second diagnosis, as I have virtually no medical history on my father's side and Eastern European Jewish ancestry on both sides. Oddly, the genetic counselor didn't feel either truly merited testing. She stated my chance of a genetic mutation was less than 1%, but I want to give as much data as I can to my daughters. They said there is a chance results will be in before my scheduled surgery.

I am hopeful my BS's recommendation will be for dual lumpectomies. I feel I can handle that right now. I've been with this doc for more than a decade and do trust in his expertise. I'm just so tired of all the scans and assessments--I'd like to get this show on the road.

Again, thank you.

Trishyla

I was diagnosed with bilateral IDC on August 29th 2016. Right side was triple negative, with just one largish tumor, but left side was ER/PR positive with five distinct foci. I also had dcis and lcis and ILC thrown in for good measure. A little of everything. Or as my BS put it: I win (or lose!) at cancer bingo.

My most pressing issue was the triple negative, so they treated that first with 5 months of neoadjuvant chemo (ACT), then bilateral mastectomy, then five more months of chemo, this time Xeloda.

I chose not to do radiation. I smoked for 40 years and have damaged my lungs and my heart enough. My MO understood.

It was a rough two plus years. I'm finally starting to feel a little more like myself again. With the exception of chemo brain. That's better, but not completely okay. I'm hoping it will continue to improve.

Best wishes for easy treatments and great response.

Trish

SummerAngel

I had bilateral IDC in 2015, my diagnosis looks similar to yours, Jlimo. HER2 was equivocal for both sides so they both had to be sent for FISH testing, resulting in HER2-. I had genetic testing resulting in a VUS. I also won cancer bingo and ended up with DCIS on the left, LCIS on the right, and multifocal tumors. Because of the many areas of concern in both breasts all doctors I saw, and the hospital tumor board, basically insisted I have a BMX instead of attempting lumpectomies. I had the BMX and implant reconstruction, no radiation (not indicated as nodes were basically clear), no chemo (not indicated because of low Oncotype of the larger tumor and grade of both). I took Tamoxifen for 4 months or so and quit due to horrible side effects. I've been fine ever since.

Bilateral invasive breast cancer is quite rare, around 3% of cases. If DCIS is included and the distance between diagnoses is stretched to a year the incidence goes up to about 10%.

exercise_guru

I think my story might be helpful. I had DBL Breast Cancer different kinds diagnosed. If you read my stats. Originally I was planning on a lumpectomy as my left breast had a tiny tumor Her+ . They told me to plan on Chemo. So then I told them to go back and look at the right Breast DCIS and they biopsied it. There was too much DCIS in my right breast to save it so at that point I chose a DBL Mastectomy ( not ideal and not my first choice . If I could have I would have chosen a dbl lumpectomy but since chem was a given I could at least avoid radiation.

Two week later my results came back for BRCA and they were negative but 2-3 weeks after my DBL mastectomy I came back Palb2 positive which atleast made me feel better about the treatment path I chose.

I still wish I had just been a candidate for Dbl lumpectomy and radiation - no chemo. Especially if the cancer was small, nodes were negative and no Gene.

Bioteach

Hi Jlmo,

I was diagnosed in May of 2017 with bilateral IDC. I had core biopsies of both tumors one week apart and got the diagnoses the week of my retirement (from teaching) reception! I had genetic testing and there were no links. I requested more information from relatives about 2 and 3 generations back to see if I could find a relative that had had it and nothing. They said the tumors were unrelated to each other even though their characteristics were quite similar. I had double lumpectomies on the same day and went home. Had very little pain. Recovery was quick. I did have to have a second surgery to get a better margin on the right side. That was done a month after the first surgery. It went smoothly. A month after that I started radiation for 20 days.

Mine were both staged 1a. ER/PR +, HER2-.

Prayers for you pink sister!

Jlimo

Many thanks for the feedback. Had my surgery yesterday, four incisions. Genetic testing was normal, as was my cardiac workup. I’m very sore and tired. Rough overnight with nausea, but better now. I have lots of accumulated sick time (Bioteach, I’m a school nurse) so can take all I need to feel better. Hopefully, the worst is behind me 🤗