treatment for MIDCIS HER2+++

Lmont79

• Needing some direction... from Lmont79 9 hours ago
  I am a new member and I am having a difficult time figuring out what topic/group to join. I am 33yrs old was diagnosed with large DCIS stage 0 in my right breast in April 2012. Based on mamo, MRI and ultrasound my tumor seemed Iintact and I had no lymph node swelling. My core biopsy came back with the following diagnisis: nucleur grade 3, ER + 14 perc., PR-. Because of the size on the DCIS and my age I opted for a skin sparing bilateral mastectomy with SND. My left breast and 1 left side lymph node came back completely negative, no sign of cancer. On my right side I hade 5 lymph nodes removed, all negative. The DCIS was 7 cm with very small margin .5mm on both the posterior and anterior side, my O'S took the top layer of pectoral muscle to help with the small posterior margin. All margins were clear with the exception of 1 microscopic DCIS evident in one of the path slides. My pec muscle and nipple and ariola skin were all negative. I have a centrally located (within DCIS) 2 invasive components: 1.6mm plus focal micro invasion .8mm. My invasive component is Er+70%+2, PR+10%+2, HER2+(3+), Bcl-2-, Ki-67 30%, p53+ (3+). My FISH results: HER2/CEP-17: 5.83, HER2 signal count:19.53, CEP-17 signal count:3.35. I have been told by 3 radiologist to do 50 g of radiation over 5 weeks. 4 MO's have said no chemo with 5 years tamoxifen. 1 MO has said no chemo, no hormone therapy. 2 MO's have said based on the aggressive component of HER2+ the size is of invasive cancer is not as significant as the biology of the invasive cancer (triple positive) and they would recommend TCH chemo with a year of herceptin. Getting 3 more MO options in the coming week. The OMs that reccomended chemo feel very strongly that there is a good chance, even with neg nodes, that the HER+ has gotten into my blood stream and a reoccurance in the next year or 2 would be fatal. Taking TCH and herceptin puts me at a 1-1500 risk of development leukemia 10-15 years post chemo. However all of the non chemo MO's feel really strongly that it is taking on extra, unnecessary toxicity risk. On a side note I am super healthy, mom of two small boys and breast fed both. Having a really hard time sorting out the right decision regarding chemo! By nature I am more of a natralpath and don't do mainstream meds unless totally neccesary....cancer is really challenging me

FeelingtheMagic

Hi Lmont, 

I've just come across this, as my diagnosis started as DCIS, found mucinous carcinoma -rare in itself, but even rarer that results showed her2+ (because they normally don't go together)  Mucinous carcinoma is usually not very aggressive, and it didn't look like chemo was going to happen until the Her2+ result.  Although they are doing more testing, I did start chemo last week because we were getting to the deadline of the optimum start time for chemo after a surgery.

Somewhere on the mucinous cancer topic I know I saw a post with research saying that DCIS with her2+ was very different from others, and didn't seem to make it more aggressive. HOWEVER, I currently can't find that on that spot for you. PLus the research was based only on a small study.

I hope you are doing well and have been able to make a choice comfortable for you.  Remember: once a choice is made, it is the right one. ~smile~

Big hugs your way