Medullary features

Hi Penguin - I have just signed up for this site today. I was also diagnosed with bc with Medullary features. I see that this type of cancer has a greater chance of being linked to the BRCA1 & 2 genes. I have been to see genetic services and hope to be tested for these genes in the near future - my mother was also diagnosed with bc at a similar age to me and passed away five years later. However she wasn't treated with the same treatments back then that I am being given. There is no one else in the family with a history of breast cancer. The docs call my breast cancer a Triple Negative Breast Cancer but I did test weakly positive for a Progesterone receptor.

I didn't realise that having a "medullary" type of cancer was rarer - but my specialist also did tell me that even though it first appears aggressive as a Grade 3 - it really becomes a lower grade cancer - something to do with the bodies own antibodies being in amongst it trying to fight it.

I am currently undergoing chemotherapy - have my fourth and final AC treatment this coming Friday - and then onto 12 weeks of Paclitaxel after that, followed by radiotherapy. It is going to be a long year!

Karen

I was tested for BRCA1 & 2 and I'm negative also.



Lorrie

Hi again ladies -great to see your posts on here since I first logged on. I haven't checked since then as still getting over chemo but starting to feel better. Interesting Penguin that you came back negative for the BRCA genes. I guess like you I am expecting that I would be positive - so I guess I must not worry or cross that bridge until it happens. I was told that there are three outcomes from the testing - 1) a positive result for BRCA 1 or 2; 2) A negative result and; 3) an abnormality found but no info on what that may mean.



I wonder if you have decided on mastectomy or radiation yet. I often wonder if I should have gone for mastectomy but went with what breast specialist/surgeon suggested. I was having annual mammograms and yet I found the lump myself as it grew in between times. Does make me wonder how super fast and aggressive the type of cancer really is.



It is great to see you are doing so well Shirlann 15 years later. Thanks for posting that. It is SO good to hear stories like yours. Did you have any lymph node involvement? What check ups do you still get. And finally did you change any lifestyle factors at all? Sorry for all the questions

I had medullary features which the tumor board at the hospital said were absolutely not a qualifier towards being a "true medullary" case.  Now, four years later, those guidelines are somewhat different.  I did not do chemo or rads--still kicking with no evidence of disease.  I also tested BRCA negative.  I lost my sweet mom to bc five years after she was diagnosed, but we do not know what subtype she may have had.

I was diagnosed with TNBC with medullary features on September 19, 2012.  I received weekly chemo (clinical drug...I Spy 2 trial with paclitaxel) for 8weeks (4 weeks shy of 12 due to tumor growth).  It was then followed with 4 bi-weekly A/C (red devil) chemo treatments....HORRIBLE but I got through it!  Tumor shrank to the point of it not being detected. I received a lumpectomy, 16 lymphnodes removed, and received 34 (last 6 of those were booster rads to center of chest--target internal mammary nodes) radiation treatments later on.  It had spread to my lymphnodes and internal mammary nodes prior to treatment as well.  I completed treatment June 26, 2013.  I have been in remission since.  I hope all is going well for you.  Please visit the TNBC website as well...tons of support and information.

Just adding my two cents worth: I was diagnosed with a medullary carcinoma triple negative stage 1 <2 cm tumour following a lumpectomy in July 2015. I have turned down an offer of chemo (I garden spray free, eat organically, and don't take prescription medicines--why would I deliberately choose to poison the ecosystem that my body? Especially given a cancer type that seems to be responsive to the body's immune system, see http://breast-cancer.ca/med-carc/ ). I am (somewhat reluctantly) starting a 4-week course of radiation later in September--my surgeon, the oncologist, and my husband were all pretty adamant about that, less pushy about the chemo. Will keep you posted on progress and thoughts. I think this is an interesting type of cancer that doesn't fit the usual breast cancer profile and I wonder if the one-size-fits-all approach to breast cancer treatment (cut/poison/burn) makes as much sense here as with other cancers, particularly at Stage 1. Some information I've found suggests that although medullary cancers look like grade 3 cancers and are identified as such, they don't tend to act like them. I'd welcome others' thoughts on this.

Me, I have the same thing. My tumor was 5.5 mm

hello ladies any updates ? We need a more medullary survivor , just diagnosed and started chemo lil scared ..

hi Kruise i hope you are doing well , im doing okay after first cycle , i hope that specialy our type is very rare , thank you for your kind reply xo

Hello I wanted to know how everyone was doing. I was just diagnosed on Aug. 11, 2016 with breast cancer stage 2 they called invasive carcinoma with medullary features. I had a lumpectomy back in July and after my pet results came back it shows a little in one of my lipnodes so i have to have another surgery along with 4 weeks of chemo and 12 weeks of radiation.

any medullary warrior

helo Desi , our type is very rare its 3 % only , it's actually have a better prognosis than the invasive breast cancers , we will go through this

its Medullary feature , stage 1 , i did lumpectomy and chemo 4 AC , 4 docetaxl and I'm doing radiation those days , almost the same as yours , im 31 yrs with no family history and i did brca test and its negative, what about you