What are you telling your daughters?

Nkb

I have that sneaky ILC cancer that was bilateral and very far along with many nodes before discovery and didn't show up on any mammograms or ultrasounds. The surgeon thought all was ok. The radiologist was sure it wasn't cancer. A biopsy finally was done-->cancer. Even the MRI with contrast didn't show it all.

My sister and mother and paternal aunt and paternal first cousin all had breast cancer. (5 out of 6 women in my family) The many genetic studies I have done are all negative so far.

I'm tempted to tell her to pop out a baby soon and then remove the breasts. and get implants if desired. I don't mean to be horrifying-but, it scares me to death to think that this is her fate. Her new primary doctor told her to get genetic counseling-the geneticist told her to do breast exams. I feel very uneasy. she's 26. How are others dealing with this?

exbrnxgrl

I have two adult daughters (27 and 33) . All my genetic tests have been negative too. Besides myself, my paternal grandmother had bc and my daughters' paternal grandmother has bc. They are aware of the family history, but I don't want them to live in fear or undergo a very major surgery based on what we currently know. They are probably more vigilant than many women their age, but that's all for now. Both have children already. I do not have ILC, but I understand why you would be concerned. Arm your daughter with all the currently known facts, have her speak to her doctor and then let her handle it as she sees best. All the best.

ShetlandPony

I really understand being scared for our kids. I get worried and frustrated even when they don't eat right or exercise enough.

I'm no expert, but I think that at 26 your daughter probably does not need to do much. The usual rule of thumb for a daughter is to start mammograms at the age ten years younger than when mom was diagnosed. When she gets to that age, she can probably make a good argument for adding breast MRI based on family history, especially if she has dense breasts. Since there is the family history, make sure your genetics counselor and hers is of high caliber, and that your testing included a high-quality, comprehensive panel such as Ambry. And ask about re-doing it once in a while, because the tests get updated. If there are cases of bc at a young age, that is a consideration, too. And is there prostate cancer in the family history? (I read a medical journal article that indicated ILC and paternal pc might be related.) What does your genetic counselor say about your daughter's risk, compared to what hers said? People sometimes overestimate their risk based on family history, so the getting their estimate with a percentage of increased risk number may help you both.

Hugs from one mom to another.

Nkb

Shetland-thanks for the hugs! I feel so sad and torn. I know that I had breast cancer for years before it was diagnosed (lymph nodes that were thought to be reactive) and tons of screening to no avail, breast exams by experts and no lumps- I know that the usual screening did not work for my ILC. No PC, Ovarian or Pancreatic cancer in my family that I know of. My sister did also have melanoma and my mom had esophageal cancer also. My genetic counselor says that she thinks there is something genetic-they just can't find it in me yet. I think that I have had all the tests that are on the Ambry site, although it has been a few years. Maybe I should contact the genetic counselor to see if she has new tests she recommends. They have the usual screening advice for me re my daughter, but, I do think MRI's are going to be her only chance with todays technology. Of course, I want to spare her this experience, and statistical risk doesn't soothe me.

She is young enough still - and I am glad she is thinking of planning a pregnancy in the next few years. I feel responsible to tell the truth (but, don't want to cause distress) and also would love to spare her from this (unrequested visit to hell as Lita called it.) I don't think the usual advice from doctors will do that.

I thought I had time and would have some better evidence based advice over the next 5 years-her new primary care doctor has worried her.

That is why I wonder how other Mom's are dealing with this.

JFL

Shetland is spot on with the stats on when it is a good idea to begin thinking about all this.

However, I have a slanted view in that I was initially diagnosed at 30 . . . and my issues began way before then but doctors didn't take me seriously, with many of their staff being rude to me about it . . . I first went to the doctor in college due to suspicious areas I discovered in my breast. It took several more times of trying to convince the doctors there was an issue and them having a huge miss when I was 28 and hospitalized for complications from my yet to be diagnosed breast cancer. I had 6 tumors in 1 breast when I was finally diagnosed, including 1 in that area I first complained about in college. There are so many others in the same boat, as I learned from my time spent active in the Young Survival Coalition. I kept pushing because something seemed "off", but in all honesty, I never expected I would have breast cancer at the end of the day. I had no family history and it came out of left field. No need to pressure her but give her the information to start mulling over and she can do something if and when she is ready. It is sad in that no 20-something should have to think about this but it is better she is armed with the appropriate info. I know various young women who have had preventative mastectomies due to family histories with their mothers and all seem to be very happy about their choice.

Micmel

NKB~ I don't have the lobular either, but I chose to have my DD come with me to my appointments at any given time so she could talk to the doctor directly. You're no way at fault here. I worry also about my DD, there was never any cancer history in my family. None. Nada. She has already been told to pay close attention and to constantly self exam. But I told her always listen to your body, I was told it was a cyst and I was young. It wasn't a cyst. Just openly discuss things with her. Like everyone's said youre arming her with knowledge she needs to always be self aware. Also, never blame yourself, for things you cannot control! Sending strength and good thoughts ~M~

DancingElizabeth

I hear ya... I don't carry the so-called "cancer genes" but I am confident genetics must be partly to blame - as there is rampant BC on my dad's side of the family.

I too am scared for my DD - she is 11. But, now wearing the bras for tweens. My hope for her - is that she has preventative mastectomies before she turns 25. Yes - I know that's drastic. But, that's how scared I am for her.

I hate that I even had boobs and if I had know that there was so much BC on my dad's side - I would have had them removed at an early age - too.

Nkb

JFL-I think the usual advice to young women like you is that breast cancer just doesn't happen-there is a bias to begin with. This is dangerous. Also when someone says it is a cyst-we want to hear that and let go for awhile of our inner voice that knows different.

I feel responsible to tell the truth to my daughter- I do agree that preventative mastectomy is the right thing for her unless someone can find another way to assess risk and find ILC early. We don't have the technology currently.

Scared67-I hear you. The sight of boobs makes me queasy now. Saw a t shirt that said "my boobs tried to kill me".

DancingElizabeth

Ntb - LOL on the t shirt!!! It's funny because my mom and I got into an argument about this subject. She doesn't think my DD (her grandchild) has anything to worry about. As long as she has regular mammos. Ha!!! Really!?!?!?!?!?! Why not just get RID of them??? Its not like they are there for much of a reason. Besides breast-feeding - but - is it really worth the risk of losing your life to have them when it runs rampant in your family???

ShetlandPony

If no known genetic mutation shows up but there is a very strong family history -- suggesting they just haven't found the right genes -- would the genetics specialist recommend treating as if one of the standard bc mutations had been found? In other words, intensive screening or prophylactic mastectomies at a certain age?