[salukigirl]

I went to my OBGYN today and while she was going over my history it came up that 4 women in my family have had breast cancer. 2 aunts on my mom's side, 1 aunt on my dad's side and my grandmother on my dad's side. 1 aunt was diagnosed before age 40.

So she mentioned something about genetic testing? She said there is some kinda test that looks for genetic mutations which make you more susceptible to breast cancer?

I already have to start mammograms at age 30 instead of 40. Has anyone ever heard of this or had it done? Does it seem worth it when I'm already doing early testing?

[lynn P.]

Yes I've heard of this. It's up to you if you want to have it done. You can also make lifestyle changes - I know you smoke and drink occasionally but it would be best if you stop. Also follow a lower fat diet and take vitamin D - at least 1000mg daily. Sorry you have such a strong family history (((salukigirl))). I hate mammograms - they're very painful for me and I'm not a wimp but I have dense brest tissue.

[salukigirl]

Thanks Lynn. I have taken some steps towards that. I lost 35 lbs a little over 2 years ago and have kept it off. Since then every single one of my ovarian cysts and polyps have gone away. I have also cut down from 2 packs a day (insane I know) to less than 1/2 a pack a day.

My bf and I have been talking about quitting. I know that it would be easier if we quit at the same time so we aren't feeling bad about smoking when the other isn't etc...

I have heard that mammograms are painful. I have 38C and have heard the larger they are the more it hurts. I will be 24 this year so the time for those to start is approaching faster than I expected. I'll talk to my mom about insurance and how much it will cover of the test.

[bebop]

I have heard of the testing but not done it but I hear it is very expensive and insurance won't cover it but that is only hearsey on my part hon. check with your provider

[Perna]

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

Remember, mammograms are only once a year and the next day after the test a fast growing cancer could show up and you'd be sol (happened to a good friend of mine). I guess if there were "extra" precautions I could take, I would.

I don't bother with mammograms anymore (no cancer of any sort, really (grandfather has prostate cancer, don't think I'll inherit that and he was 82 when he died) anywhere in my genealogy for the last couple hundred years that I can see. I play a bit looser with my health screenings now that I'm 60 and not going to die "young".

I hate the way statistics are used to make it look like one should take X med or have Y procedure or there's a 47% greater chance you'll die of it before your 92 or something. If you look at the literal "chance" of you getting something or other because of a particular condition you may have, it can get ridiculous. I've lost almost all respect for medical reporting/knowledge that uses statistics in that way. We focus on the statistics and what we think they mean instead of on the person and what that person needs.

My blood pressure was recording ridiculously high at my doctors for a couple years (I mean they even realized it, pointed out that with readings like I had I was theoretically in cardiac arrest and should be in an ambulance on the way to the ER but was sitting calmly in their office :-) and I was resisting bp meds and they started with the percentages of risk for heart, stroke, the usual. Turns out the pain of the blood pressure cuff is excruciating and causing the high readings; if you use a calibrated wrist cuff my bp is "normal". I looked up the literal percentage after they were leaning on me with their statistics and for others in my age, with my alleged readings, were they "true", etc. the chances of a heart attack/stroke in the next 10 years (I'm going to die of something! I'll be 70 in 10 years) was 1 in 10 instead of 1 in 3700 or something if I had "normal" blood pressure. I'll take 1 in 10 odds any day, never mind at my age when the odds of dying are literally getting greater each year anyway?

[salukigirl]

My family has a massive history of diseases of all kinds. Just on my dad's side there is low blood pressure, heart disease, diabetes, breast cancer and alcoholism. My mom's side also has alcoholism and breast cancer and, in addition, my mom has rheumatoid arthritis and lupus. Then there are all the things my dad has due to alcoholism and both sides having depression and anxiety. Plus my sister had ovarian cysts which I also have had a history of so at 18 I already had reproductive issues.

I looked it up and some sites said the test could cost as much as 2500. There are some that only test for the 3 most common mutations that are much less. I would ask my aunt if she has been tested but her and my mom are not on speaking terms and I don't want to open any doors right now. I'm trying to stay out of their way as much as possible.

We'll see. My mom just switched the Blue Cross Blue Shield and they seem to cover more than our old United Healthcare did. So she is going to call and see, considering the family history, if they would cover any of it. If not then who knows.

[Fresia]

I'm not going to sway you one way or another. There are benefits to testing and in some cases makes no differences whatsoever for several reasons. It depends on your reasons for wanting to know. If your ultimate goal it to know whether or not you will develop the cancer, the testing cannot tell you that; no one can.

** The link Perna posted is really valuable in your decision, no matter whether the insurance will cover it or not. **

Even if you get tested, and say you tested positive for the BRCA marker mutation, that still does not mean a definite that you will get the cancer. It is just an indication you are at higher risk for it. It takes several other cell mutations and life style factors to affect cells for cancer to develop. There is no guarantee even if you test negative for this marker that you will be cancer free either.

It just gives you an idea of what you might have in store down the road and your risk but no guarantees one way or another. It's good you are making lifestyle changes in the process and should research other things you can do whether you have the testing or not, marker being present or not.

[salukigirl]

That's what I'm saying. I almost think knowing I have a mutation would make me worry and freak out over something that's not even definite. The fact that there are so many women in my family with it already has made me exercise more, lose about 35 lbs, cut down on smoking and do more of my own self breast exams. So I feel like, whether I know it or not, I'm still making the moves in the right direction. And seeing that I don't have a mutation doesn't mean I can stop exercising and eating right. So I almost don't see a point.

[Fresia]

I can understand this completely. Again good for you in working on your health and considering these things. Wishing you all the best!!!

[Paige008]

Your doctor wants you to have the BRCAnalysis test, right?

I had this test done 6 years ago and found out that I carried the BRCA2 mutation. This means that I have a 90% lifetime risk of developing breast cancer and about a 40% lifetime risk of developing ovarian cancer. MRIs and mammograms are part of a semi-annual routine, as are pelvic ultrasounds. I actually made the choice about a year ago to have a prophylactic bilateral mastectomy. It lowered my risk from 90% to less than 5%!

If you're interested or have any questions, feel free to PM or message me.

Also, here's a link to a site that was really helpful when I started going through all of this.

[Paige008]

I need to make two more posts until I can give you the link...sorry!

[Paige008]

Ok, let's try again.

Here is the link: www.FacingOurRisk.org

[salukigirl]

Haha thanks Paige

[sunrise]

Originally Posted by salukigirl

I already have to start mammograms at age 30 instead of 40. Has anyone ever heard of this or had it done? Does it seem worth it when I'm already doing early testing?

Sometimes when women find they have one of the mutations, they consider mastectomy. Or do more frequent mammograms. But as far as I know, these are the only changes in treatment that might be offered if it turns out you have a mutation. Genetic testing is a very personal issue and requires careful consideration. Some people decide to get tested, and some people don't. I think you have questions that are best answered by a doctor or genetic counselor. They can better tell you what treatments might be available if it turns out you test positive. In addition, the test will be more informative if your aunts who had breast cancer also get tested--are they still alive? Then the specific mutation they had can be tested for in your DNA. Without this information, the test is more of a shot in the dark but can still be informative if you have one of the most common mutations. If your aunts had a mutation that is not one of the most common ones, they won't routinely test for that. So if you really want the test, your aunts' participation would be helpful too.

Salukigirl, I was afraid for years and years to have a mammogram because my breasts are very sensitive and I heard the procedure was so painful. When I finally had a mammogram, it was not nearly as painful as I had feared. Yes, it hurts, but not as much as I imagined. And then you get the reassurance that your breasts are clear. Please don't let the fear of a painful procedure keep you from getting a mammogram if you need one.

[salukigirl]

I would never put off a mammogram because it's painful. I know how prevalent it is in my family and will probably start before 30. I will be able to stay on my mom's insurance until 26 (Thank you, Obama!!!) and I will most likely have one right before I am kicked off just in case I don't get insurance right away so I will have a good idea of where I stand. I turn 24 this year so I'm getting a lot of stuff done just because I will only have insurance guaranteed for the next couple years so I'm getting some dentistry work done etc... and I will definitely make that one of the things I get done before my insurance runs out.

As for the genetic testing....I think I have decided not to. I just got diagnosed with temporal lobe epilepsy a few months ago, my dad just had chemo for malignant melanoma plus the stress of grad school and research.....I know my limits. And finding out that I have a mutation would just be too much right now. If it's gonna happen, it's gonna happen. Knowing mutations can't stop it. And I honestly could not think of having a mastectomy at 23. Not to mention I have recently stopped having ovarian cysts and uterine polyps and am already worried about being able to have children.

So yeah....I think we're going to hold off on the BRCA, possibly indefinitely. It's gonna take a lot of thinking about whether I really want to know or not.

[Perna]

Glad you came up with a scenario/plan that works for you at the moment. I hope it has freed you a bit from "extra" worry/concern and you can use that energy on your other interests/worries.