Increased risk or not? Mother with breastcancer

Swedish_Girl

My mother was diagnosed with stage 3 breast cancer about 3-4 years ago. Her cancer was ER+, a larger tumour and positive nodes. She was around 60 years old at the time. I was diagnosed with triple negative breast cancer this year, 33 years old. 2.1 cm, negative nodes. We received basically the same course of treatment and she is doing well so far. I'm doing radiation after chemo and a lumpectomy.

I did a BRCA test which came back negative and was reassured by that result. But the last week my mom had a doctors appointment, and her oncologist told her that my cancer was most certainly something hereditary, although my own oncologist says its unlikely.

What should I believe? I was happy with the negative BRCA test result, since a positive one most certainly would have made me go for a bilateral mastectomy and possibly also to remove the ovaries. My doctor also made sure we did the testing before the radiation just to make sure, since a mastectomy would mean that I could skip radiation. I do trust my own oncologist a lot, and I have never met my mother's, and that doctor does not know much about my cancer. But still...

I have a husband and two children, if my risk to get cancer again is high, I would take precautions without a doubt. But my oncologist doesn't seem to think its necessary. I don't know what to believe. For now I had a lumpectomy with clear margins, negative SNB, chemo with EC*3 and Docetaxel*3 and now rads, 16 whole breast and 8 boost at the tumour site.

My mothers cancer was ER+ and mine was all negative, is it usually that way when its hereditary?

Lula73

did they only test for BRCA or did they do a whole panel? BRCA is just the one that's highest risk and we hear a lot about especially since Angelina..

Hopeful82014

There are definitely other high-to-moderate risk genes that could be involved. Particularly if you have children (or plan to) you may want to ask about testing for additional genetic involvement. If you choose not to your mother might wish to. If she is negative then you're in the clear (again). Please speak with a good genetic counselor.

Swedish_Girl

I think the testing only was for BRCA1 and 2. My oncologist asked about the family tree and there are no known cancers on my mothers side, but a few on my fathers side (no breast cancers).

MTwoman

I agree with Lula and Hopeful. There are a number of genetic mutations that have been identified that confer increased risk for bc (check2, palb2, bard1, atm, tp53 etc). In fact, there is a member of bco that was identified with 2 of them, neither one brca1 or 2. Typically, a genetic counselor is in order with a diagnosis of bc in a 33 year old.

Swedish_Girl

Oh, and I have two children, boys, 6 and 9 years old. So I'm not very worried about them getting breast cancer. I'm convinced cancer will be cured when they have children of their own. I do however want to grow old and meet my grandchildren.

MTwoman

there are a number of men here who have/have had breast cancer, so a genetic mutation could actually increase your sons' risk for bc. It isn't just women who have breasts. Men CAN get breast cancer.

Hopeful82014

In addition, some of those mutations increase risk for prostate cancer, so information would definitely benefit your sons as well.

Lula73

Speaking of sons...my genetic counselor said if the boys have the mutation they are at risk and they can pass it to their children. The mutation I have (BRIP1) is not all that common and comes a with strong risk of ovarian cancer and some risk of breast cancer. Makes me worry for my little granddaughter

ChiSandy

I was tested for all mutations known at the time (2015) and despite being 100% Ashkenazi Jewish came up negative; but there have been more discovered, and by 2025 the number of known mutations will be double what it is today. Nobody in my family had cancer, except for a sun-worshipping half-aunt who got melanoma and an aunt who died of esophageal—but she drank and smoked heavily. Still, I will pony up the $300 and get 23andme.

NotVeryBrave

I'm not sure about the incidence being higher or not for triple negative and genetic mutations. They are generally more concerned with younger women that have BC and possible genetic links. Overall - BC caused by mutations is only 5-10% though.

Testing your mother would not help you necessarily. Even if she tested negative - you still inherit from your father's side. I would recommend a genetic counselor and a larger panel test. I had the OvaNext panel which covers something like 28 known mutations. I was negative but wanted to know for treatment decisions as well as the future for my 3 kids.

Swedish_Girl

I will ask my oncologist about this again the next time I see her. I'm not sure what testing is available for me, since I live in Sweden the healthcare isn't funded by insurance which is normally a very good thing, but it also limits the options. We get very good healthcare for almost free (there is a fee for approximately 150 dollars per year), but if the cost/benefit isn't there, you can't get it.

But like I said before, I'm not worried about my sons. They are so young and research will make progress.

farmerlucy

https://www.color.com/?kw=color%20genomics&pos=%7B...

Swedish girl - I did my extended panel testing through this company. It is $249 self pay. Not sure they send the kits overseas, but it is worth checking. The results are sent by email. The genetic counseling alone, provided after you get your results, is worth the $249. Best of luck to you.

Swedish_Girl

I had a meeting with my oncologist today, and she offered me to join a study that searches for more defective genes than just the brca ones. So I'll participate in that one, and have to wait 3-4 months for the result. I don't think there is much more I can do at this time. She said that one of the mutations they will test for have a very high increased risk like the brca ones.

MTwoman

Swedish_girl, that should give you some good information, and doesn't affect your current treatment. Sounds like a great opportunity! Good luck

Traveltext

SwedishGirl, As others have pointed out you could still have a genetic propensity that hasn't yet been discovered. If so, your boys can inherit this and get bc in the same way that my mum and then I got bc. I have a daughter (44) and a son (40) and I am making sure they both get thorough screening plans.

And when you are looking in the past for familial cancers, see if any of the men had prostate cancer, since this is a red flag in the the way that bc and ovarian cancer is for genetic predictions.

Daisyd

I was diagnosed with breast cancer in October 2016, at age 49. My sister was diagnosed with breast cancer at 49 and my mom had uterine cancer at 47. Enough red flags to to genetic testing, they tested for the whole panel of genetic mutations. I have BRIP1 and PMS2 gen mutation. My sister and mom talked to a genetics specialist last week and tests are underway (they live in my home country Belgium and tests take about 8 weeks there to complete).

I decided to have lumpectomy, clear edges and no nodes involved. I opted for no chemo with an onco type score of 30. I underwent radiation June/July 2017. Just finished complete hysterectomy/oophorectomy 10 days ago.

My daughter who is 21 at this time is currently being tested as well, results expected end of this month. It is true that you are found to have genetic mutations with high cancer risk, each of your children has a 50% chance of having inherited the genetic mutation. My sons are currently 14 and 18, when they turn 21 it is recommended that they get tested as well.