Contralateral BC

jlyneham

I had my first journey with BC less than 2 years ago then I only needed surgery, RT and letrozole. Last month at a check a new primary tumor was discovered and is grade 3 HER positive. I started chemo with taxel and herceptin last week (next round tomorrow). 6 months after my first diagnosis my 41yo daughter was also diagnosed. She had a similar regime by was not put on tamoxifen.  We are not BRCA but the geneticist said it was genetic. Are there any ladies out there who have had a new primary in the other breast?

primek

It is not uncommon in gene positive. And in reality I supose whatever caused the mutation could happen again. It might be worth revisiting a genetic counselor as they now have identified new genes that can cause breast cancer. I am sorry for you having to go through this. Hope treatment goes well. Kath x

jlyneham

Hi Kath
i keep up to date with the literature on genetics in BC can you tell me more about the genes you refer to. This would be good news. I have another daughter (at the moment BC free) and 3 granddaughters. Thanks. Joy. 

Melhay

Hi jlyneham - very sorry to hear you & your daughter have both experienced Breast Cancer.
I too was recently diagnosed & had surgery for a new tumour in my other breast.

My first diagnosis was 13mths ago & treatment was lumpectomy, sentinel node biopsy (clear) & radiation.

The new primary tumour was found at my 12mth follow up & was very similar in pathology to the original. It was successfully removed & sentinel node clear again, however they also found a large area of high grade DCIS so have just had a re-excision & am awaiting results. 

I have a 16yr daughter so am trying to encourage her to be proactive about self examination. 

I think I'm still in shock that I've now had breast cancer in both breasts - & only 13mths apart. First time around I found the lump & that breast had a a long history of lumps & cysts so felt a bit more prepared for the possibility it may be something sinister. Second time around I was completely unprepared. 

How about you? 

Mel xx

jlyneham

Mel. I hear you re your daughter my 37 yo still has not been checked. I also had grade 3 DCIS near the new primary. What was your HER 2 results. I too was not prepared and even though I am sitting here waiting for my chemo nurse to cannulate me I still have a sense of unrealness.   Being under 2 year since original is a worry and I do not know why my HER2 status changed as apparently that is not genetic it is somatic. The experience is so different to the first especially if BC1 has good path you think you are free and clear. Well we were both sucker punched with that one. I find myself worrying about other cancers popping up it is probably a silly thing to worry about. Let me know how you are going. Joy. xx

primek

@jlyneham  This article refers to them. Hope this helps.
https://www.geneticliteracyproject.org/2016/09/06/beyond-brca-new-rare-genes-linked-breast-cancer/

jlyneham

Tx

jlyneham

Kath. 
I will follow this up further. The genetic people kept my profile so I can ask the question. I still cannot find the associated research but it may be still waiting for publication. 
Joy

Tripple QLD

Hi jlyneham, 
i was diagnosed with TNBC in nov2016 and left breast and had mastectomy, 6monyhs chemo and 1month radiation and am 6months past the end of my treatment for that and now I have a lump that feels similar to my original cancer but in the opposite breast. They wouldn't remove the other breast as they said being brca negative there was no need to remove it. I won't know for another week or so if it's contralateral TNBC but I may be in the same boat as you in a way. How are you and did you go? Your not alone.