Only 23 and VERY High risk

I agree with Beesie above. It is best, if possible, to have someone who has had breast and/or ovarian cancer test first. If a mutation is found, your results will be a lot more informative should you test negative...but if your mother does not carry that mutation you cannot have inherited it either so if someone else (like one of her siblings) were positive, it would be best if she tested first. If there is a mutation, but your mother is negative for it, than you cannot have inherited the mutation from that side of the family and there is no need for you to test. As Beesie said, it cannot skip a generation.

Have you talked to a genetic counselor yet? They are the best to talk to determine if YOU are high risk. For example, if there is a mutation in your family but you do NOT have it, then you would not be considered high risk. You would be considered to be average risk, unless there were other things at play (like having had mantle radiation, etc). If you do have a family with a lot of breast cancer (and/or ovarian cancer)...especially pre-menopausaul...but none of them have a mutation and nor do you, you may still be high risk. So, it is very important to realize that YOU may not personally be high risk even if there is a mutation in your family, or that you may be at higher risk even if there is no mutation. When there isn't a mutation, it can also depends a lot on the degree of closeness with relatives (i.e. first degree, second degree, third degree). You share more genetic material with relatives closer to you, so generally they are going to look more at that than relatives who are further away from you genetically.

I am an "uninformed negative". There is no known mutation in my family, despite the cancer history. I still have a high risk of breast cancer based on my family and my own personal history (my risk assessment is 40%...20-25% is considered "high risk" by most guidelines). My genetic counselors and other medical providers believe there is something genetic going on (whether polygenic or an unknown mutation)...but not something that can be determined yet. My maternal family is small, with very few female members, but every woman in the last three generations has had breast cancer (and pre-menopausal), my mother included (I do not know what those before those generations died of, but I do know they died fairly young). Most died of it. Some had very hard to detect cancers despite screening (ILC) so catching it early is not something I am comfortable counting on, and there is a history of recurrence there too (as in mets). So, even without a BRCA gene my high risk status does mean I do get high risk surveillance and I am currently looking at undergoing a prophylactic mastectomy though it has been a long process to get there as it is choice with a lot of emotional and physical ramifications. Tamoxifen is also an option that was discussed with me, but I have opted out of it for my own reasons.

Again, your options are best discussed with a genetic counselor once you have a better idea of YOUR risk, including whether you are BRCA+ or BRCA-, whether there is a BRCA-mutation in the family, and so on. Generally, even if there is a mutation unless there is a history of very, very early onset cancer you do have some time to make decisions given your current age. Many BRCA+ people for example do not have an oopherectomy until after they are done childbearing (35-40) unless there is very early onset ovarian cancer in their family, etc. Some choose to keep their breasts and stick to surveillance, others choose an earlier PBMX. Some decide to remove breasts, but keep ovaries. It is important to remember even with BRCA+ results, mutations can differ a lot in the risk, age of onset, and so on.

You may also want to look at the FORCE (Facing Our Risk Empowered) website/boards for more information. It is mostly BRCA+ women there, but there are a few "uninformed" high risk people there like myself as well.

Hello Hillary.

My mother was diagnosed at 37, two months after she had a normal mammogram. She had a very aggressive form of bc that eventually took her life. Although her mom and her sisters never had bc, my paternal GM and aunt also had bc. They consider me high risk, so I was tested and thankfully tested negative for both 1&2, but still have a 37% chance of developing BC at some point due to my family tree. My doc said I could still choose to have a mastectomy rather than go in for mammograms and ultrasounds every 6 month if I chose to do so. After my most recent mammogram (a week ago) the doc ordered an MRI for further testing of something small they weren't sure about, I have been doing tons of research on my options. I am starting to lean towards a bilateral mastectomy just to never have to deal with what my mom went through. I will wait to hear what the results from my MRI and (most likely) biopsy say. I would love to hear others replies to your questions as well.

Hillary,

Seeing a GC is definitely the first step so I am so glad to hear that...look for one who is familiar with cancer/BRCA genetics, too. They will be the right person to do pre and post test counseling with, to understand what it means whether you test positive or negative. I do not like when tests are done through medical providers who are not experienced in this area! One reason being your OB/GYN, as great a doc as she may be, clearly should not be telling you that you would still be high risk if you tested negative for a KNOWN mutation in your family.

If you are negative for the BRCA mutation your aunt has (or your mother is negative) you really are usually considered at average risk just like most women in the general population...as you are then what is known as a "true negative". No, not 0 risk (70-80% of breast cancers are sporadic after all) but not considered high risk and other factors will be more at play to affect risk (lifestyle, physical activity, weight). This is why true negatives are a wonderful result! No one can guarantee you against cancer, but a true negative would really mean you had NOT inherited your family's known risk due to BRCA.

Nor should your OB/GYN tell you to test to calm your nerves....what if you were positive, do they expect your nerves to be calmed still? There is so much more to testing than that...not just emotional, physical, and financial, but to consider with insurance, and so forth

Also, if there is a known mutation in the family you really probably should test for that mutation first, via single site testing, rather than do full BRCA panel. Not only is this much, much cheaper to do, BRCA mutations are really not that common in the general population and unless your fathers side shows BRCA associated cancers, it would be very rare to be at risk of another mutation than the one already in your family (though it is seen more often in those of Ashkenazi ancestry).

It is very possible your mother is also negative...if she is, you cannot have inherited the mutation your aunt has either. It does not skip generations. Is she open to testing?

(P.S. Just so you know we ALL have the "breast cancer gene"(s)...being BRCA 1 & 2, what you want to know is whether you carry a mutation on a gene!)

sdekans, I am absolutely appalled that any doctor could be so ignorant of basic genetics that he would think your father's side didn't matter! Gah! I guess breasts must be the only part in our body that only inherits one half of a set of genes!?! Jeez!

Hi Hillary,

I feel for you...I am in very similar situation as you, except I'm 47 so a bit older than you. I had a sister who was diagnosed with BC at age 29. Prior to her, no one in my family had BC.

I found a lump and it turned out benign when I was only 27 and have had yearly mammograms since.

Unfortunately, she passed away at age 36. Our cousin on my mom's side was also diagnosed the same year as my sister but she's still healthy and is very careful with what she eats. My mom was diagnosed w/BC Dec. 2011 and passed away Dec 2012. Every sister on my mom's side had BC...so to say that my family has a strong history is an understatement.

Recently my sister and I were both diagnosed with BC. The ironic thing is all of us had different types of breast cancer. Both of my sisters and mother had aggressive types, I have the more common ER & PR positive, Stage 1. My sister got her BRCA test back and it was negative. I'm still waiting for my results. My team of doctors have told me that even if I'm negative for BRCA, there could be other factors causing such strong family history. This includes the possibility of medical community not having even found other genes that could cause mutation of normal cells into cancer cells and multiply rapidly. Make an appointment with a genetic counselor and he/she will be able to guide you better.

The two groups of people who have the highest rate of BRCA positive are: Ashkenazi Jewish decent and Hispanics according to my doctors.

Truly the best thing you could do is get yourself tested so that your doctors can best strategize a plan for you. If you are BRCA positive, you'll be at high risk for ovarian cancer as well. I know it's a lot to think about. I am also a firm believer that diet and lifestyle has lots to do with it as well. We all have cancer cells in our bodies, however, when our bodies are not properly nourished and we're under constant stress that's when our immune system breaks down and cancer cells gain strength. I don't like to rely on big pharma for my treatment because let's face it...Cancer is big business and money makers for big pharma. These companies only make money by keeping us sick.

Truth is chemo only cures approximately 2.7% of patients. The definition of "cure rate" is surviving past 5 years. Both my sister and her husband died shortly after 5 years, so sadly the cure rate is really much much lower than 2.7%.

I didn't really want to know even with my very strong family history. However, all of my doctors have urged me to get the test done so I'm just waiting for results. To be perfectly honest, I'm not really sure what I'd do even if I am BRCA positive. A friend of my husband's girlfriend was BRCA positive, she opted for double mastectomy and still ended up with breast cancer because there's always some tissue that may be left behind. Unfortunately her cancer has spread everywhere in her body now. This is one reason I don't believe in radical treatments without looking into other alternative treatments first.

I know this may be a very confusing time and no one has the "perfect" solution. It will be what you feel most comfortable with. I wish you well and good luck if you do decide to get the genetic test.

I am so glad to hear that Hillary! I had a great genetic counselor too, and have gone back to her for further clarifications on things and such.

I will be hoping that your mother tests negative (I am glad to hear she is testing) for the gene your aunt carries, which means you don't have to test...but if your mother is positive, I will hope that your own test comes back negative. It would be wonderful to get some true negative results. But if not, then you are correct that there are many resources out there for you.

Hillary, I'm glad that you've found a good genetic counsellor. And glad too that your mother will be tested first. Hopefully she is not BRCA positive and that will take a big weight of your mind, and no doubt her's as well!

Let us know how it goes!

Hillary, that's not good news of course, but now your mother knows that she is high risk and she can decide what she wants to do about that.

What it means for you is that there is a 50% chance that you too have this genetic mutation - if you inherited this particular gene from your mother - and a 50% chance that you don't have - if you inherited this gene from your father's side of the family. When you have genetic testing, you will get a very clear answer, either that you are high risk, or that you are average risk.

So now you can hope for a "true negative" result on your testing. And that's actually a lot better and provides a lot more clarity than an "uninformed negative"

Stress does not cause cancer, else most of us would have it.

i found this article. not saying stress itself but how we cope with stress and what stress does to us. some ppl have high tolerance and some don't. when i was in that dark period, i could not sleep for 3+ months, every night i was awake in bed. i wasn't saying traffic jam kind of stress, but the stress that made me unhappy, angry, upset all the time.

http://www.medicalnewstoday.com/articles/265254.php

the nurse told me after my surgery, she'll ask me if i want to participate into their survey about young women having breast cancer at my age with no cancer history in our families. she said there's more and more women in my age early 40s got breast cancer. so this fact can say it's not genetics neither...no body knows why but i think stress has to do with it.

of course my friend is no expert...but her family is deeply affected by it. and she's been doing a lot of reading about it.

It is disheartening for any of us to have BC but even more so with so many young women victims of this disease. My sister and I both have BC. My mother had it at 68 and died at 83 but not from BC. I have IDC and my sister has ILC. The doctors wanted my sister to have the test. She doesn't want to. Doesn't have any children so she doesn't see the point. My ONC told me 70% of the BC cases were ones w/o a family history. I don't know if those stats are holding up but I frankly think they just don't know why some of us got the unlucky draw. I have 5 children; my oldest is my daughter and she has 3 daughters and a son. She has already been told she needs to have regular mammograms. I guess so with her mother, aunt, grandmother and my sister in law all having BC. Good luck to you. diane

divecat,

i was trying to make OP feel better, even with the BRAC positive doesn't mean she will have BC for sure. i did not say OP don't have to take care of her health. it's not fair for you to say i implied anyone of us did something wrong. i did think mine was due to stress which i didn't imply anyone else on here. i used myself not OP nor you as example. why using myself can offend you?

it's just my opinion, none of you have to take it. not sure why it stirred up such a wave. i am sorry OP if i upset you. the rest can ignore me.