Medullary Carcinoma?

tammil1964

Just wondering if anyone else on here has Medullary Carcinoma? Prior to my double mastectomy I was told I had triple negative IDC. After the mastectomy the pathology came back as medullary. 

Moderators

Hello tammil, we're sorry you're facing this news! Until other members post with their experiences, there is more information in the section on Medullary Carcinoma of the Breast in the main Breastcancer.org site.

Best wishes,

• The Mods

MsBliss

Did the pathology say True Medullary, or medullary features?  TM is very rare, but favorable at early stages.  It doesn't tend to metasticize.  Although I was not technically medullary, I had medullary features which were somewhat favorable.  I clung to the hope that it would work in my favor because I was not doing chemo or rads although it was recommended by every onc I saw, all eight of them.  I am now almost 3.5 years out from lumpectomy surgery.

tammil1964

It showed "atypical medullary" I think. The breast surgeon seems much more positive about the outlook than the onc. I had already done 4 rounds of AC and 8 of Taxol. Stopped it early due to neuropathy and then had the double mastectomy. Start rads today. 

The original pathology (from the biopsy) just showed triple negative IDC. And the lump was very large (it was a cyst with the tumor on the outer wall). I believe that's why we did chemo first...to try to shrink it. It was shrinking but then started to get larger again. 

Moonflower83

Here!

I had a medullary carcinoma, but it was not true medullary, it just had medullary features. So I had to do chemo (6X TEC) and radiation. Now I´m on Tamoxifen and Trenantone, because my cancer was lightly hormone positive.

rava

I was diagnosed with true medullary carcinoma. I had 4 x FEC 100 and 4 x taxotere. Herceptin and 25 rads. Mine was her2 ++ witch is very rare. It was very aggressive with a ki67 - 84... I have read a lot about MC. It responds better to chemo and rads than IDC.

KittyWinnie

Hi Tammil1964 - I also had some medullary features noted on my path report. Surgeon was positive about them and said those were good features to have. My first onc wasn't interested in them, said it didn't affect treatment plan. I just switched to a new onc and she acknowledged that those features can lead to more favorable outcomes. But, again, they won't affect treatment. That's fine, it was just good to have them acknowledged as possibly being favorable. My tumor was also part of a cyst. The cyst was 4 cm with a 2.5 cm tumor inside. According to the surgeon, the tumor was very soft, almost fell apart when the pathologist touched it. He said this was unusual, most tumors are firm. I've had chemo - 4 AC and 4 Taxol. Doing rads now. Best of luck with your rads. 

Shirlann

Oh yes, Tri-Neg and Medullary.  That was 15 years ago and they knew nothing about Tri-Neg, so I didn't have chemo.  My tumor was very small.  Still kicking!

Gentle hugs, Shirlann

silvergirl2013

Yes! I had a 3cm "True Medullary" in 2008, lumpectomy/taxotere/cytoxan and radiation. Lymph nodes were neg. My tumor was High grade/triple neg. I am neg for the BRCA1 & 2, even had the BART testing to confirm true neg. I do have the P16 gene(melanoma/pancreatic gene) and had melanoma in 2002. 

I was diagnosed with "recurrent medullary" in my lymph nodes(same side) this June(2013). immediately started AC/C and will follow with bilateral mastectomy/recon and removal of lymph nodes.

My Oncology team is stumped by this recurrence as it is "never" seen apparently! Would love to have more info or studies to try and understand why I have a recurrence when I'm told my "true medullary" is not behaving like medullary!