mom with ovarian, sister with breast cancer, am i doomed?
I'm 42 years old, and my mother is an ovarian cancer survivor, was diagnosed about 2 years ago. my sister, who is 44 and has had many biopsies over the years, was diagnosed with breast cancer a few weeks ago in one breast, and then the MRI to follow up found a what turned out to be a malignant tumor that the mamo missed, on the other side (and the MRI missed the first lump, what are the chances?). When a cousin on our dad's side got breast cancer 5 years ago, my sister, being a bit of an alarmist, got both the BRCA1 and 2, they both came up negative. And when my mother was diagnosed with ovarian, she also got genetic testing, also came back negative. Now they are telling me that I have either about a 30% or 80% lifetime risk, and the only way to know is to get a genetic test. I have no intention in cutting my breasts off based on a test (that obviously is not that accurate, both tested negative, both got cancer). I have had 5 mamograms and never have had any concern, a biopsy, or even a lump (worked in a remote location and started getting them bi-annually at 35 for that job). I am a healthy, organic eating, exercising person who takes good care of myself, and i refuse to cut off any body part that could potentially give me problems someday. i do not trust the genetic testing process. does anyone have any advise for me? i wish i'd never quit smoking 12 years ago, i loved smoking! (that's sort of a joke). not joking, i am completely freaking out and wonder if the rest of my life will be filled with dr. appts and poking and proding and experiments when i am perfectly heatlhy. i don;'t know what i'm really asking for, i can't talk to my family because they want me to get the test and get my ovaries and breasts removed. i think that's insane, especially since i have no problem! i'm willing to get MRIs and mammos as long as the radiation levels are truly safe. beyond that, and eating right, what can i do? thanks for any words of advise.
Comments
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hmmmm..
Have you been tested for the gene? It can happen that one memeber of an immediate family to be "negative" while the other is "positive". they are also realizing that there maybe other genes involved......they just don't know what they are yet.
It's good that you are being preventive to avoid BC or Ovarian cancer, the thing is lots and lots of woman who were the picture of health got BC too. It's a crapshoot as we all here say.
I can understand your anxiety, the best thing to do is get screened and tell you doctor about your family history. Some woman go for prophylatic mastectomies or an oopherectomy (ovary removal) to lower their chances.
Very tough decision,but worth talking over with a professional.
~~* Good luck *~~
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Hm, I'm with Lexis, I'd talk it over with perhaps 2 or 3 professionals. Take your best guess at what with all the info you get, to do with it, then do or don't do what is right for YOU>
I have been thru so many lumpectomies, scares, rads, finally another bc, that I had a mtxmy, am having prophylactic hysterectomy and oopharectomy on Wednesday. I will be having a prophylactic mastectomy on the other girl too.
In the end, it's what you are willing to put up with, in terms of anxiety. It's not your sister, or your mom, this is you. Only you can make your own decision.
If it were me, I'd get tested, but it is not a definitive answer....there are so many many factors to bc or cancer in general, I am the only one of four sisters many aunt, no one has ever had bc. They just don;t know.
Tough decision yes, but your decision. Just let it be an informed one and one you are comfortable making.
Good luck to you.
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thanks for your replies, i hope your surgeries all go well and sorry to have bothered you with my issue. you obviously have real issues to deal with, I won;t' use this forum to bug folks again.
wishing you all well.
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mardiss you are not bothering us at all...
We are just explaining to you reality. And yes we do have real issues.....but lots of us have dealt with them and are here to offer support
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Mardiss,
I have BC, and my mom had OC, and I have four sisters. None of my aunts (I have four) had either one, and so far, none of my sisters do. I tested negative for BRCA. My suggestion would be to get your mammos religiously (they're not always 100%), get an annual physical, and just stay on top of your health. I agree with you not to run and start getting surgeries based on the info you have. Best of luck to you.
Bobbie
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Hello mardissis,
I think your decision is pretty much made up. Follow what you believe in!
I'm 38, no cancer but BRCA1 positive. A lot of cancer in my family. I chose to have my ovaries, tubes and breasts removed at 37. That was my decision and feel great about it.
You need to find your way to peaceful thinking. The worst thing is stress. A naturopath that I have seen and that was against my decison told me that stress is the best cancer trigger. So in my case, keeping my breasts was so stressful and source of anxiety that I was better off them. What a relief I felt when I woke up. And I did the right thing because in my right breast there were 4 lesions, one was precancerous.
Good luck in your reflexion!
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Doomed? Mardissis, no, it shouldn't be 30 to 80%. Talk to a certified Genetic Counselor. Two things are possible.
Either the two cancers in your family have a true genetic connection, but the mutation was of a rare type which could not be detected by the test they took (what exactly was the test? Not all of the test varieties are equally sensitive ). Then you have a 50% chance of inheriting the same unidentified mutation. It should translate to no more than 40% risk level. (And if your sis can follow up with a more thorough test, then you may still have a chance of sorting it out).
Or maybe there isn't a high-risk gene involved at all ... either just a random chance, or maybe a low-risk gene involved. If that is the case, then you have even fewer reasons to worry.
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Hi Mardissis --
So i don't think there's a good reason for you to be tested -- both people with relevant cancers were negative. The odds are pretty good that you're negative as well! (Unless there's a lot more people in your close family with bc?)
Before i got bc, the genetic counselor told me there wasn't much sense my getting tested - the right person to test was my sister, since she had had bc. Also, even tho I had a sister and an aunt with bc, my risk wasn't high enough fr the insurance to pay for testing.
Doesn't mean you're "safe" -- I think 90% of women who get bc don't have the BRCA mutations. and your risk is up, with a 1st degree relative with the disease. (Of course, the majority of women who get breast cancer don't have any family history .... nothing is certain.)
You can calculate your risk using the Gail model -- go to http://www.cancer.gov/bcrisktool/ But remember that this is only calculating the odds -- and some of us are unlucky. Keep up the mammos, etc, and try not to let this mess up your life!
hugs!
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My genetic counselor explain that overall cancer is 10% genetic, 50% family historic, 40% environmental (lifestyle, food, smoking, chemical exposure,etc...).
My risks were 90% BC and 65% OC because I have BRCA1, because of the family history and because I smoked for 20 years and was sedentary. I was pretty much doomed. The decision was easy.
Like others, I suggest you talk to a genetic counselor...that will help you make the decision.
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mardisis ~ Another thing you might consider doing is setting up an appointment for an evaluation at a large comprehensive breast center. Depending where you live, I'm thinking of places like Memorial Sloan Kettering, Johns Hopkins, UCLA -- the larger, teaching hospitals with dedicated breast cancer departments. I'm not sure if all of them, but many or most them have high risk programs that will evaluate you and, if necessary, screen you more often and more carefully than women who are not at higher risk, so can get by with annual mammograms. It wasn't until I was dx'd and ended up at UCLA that I even found out about these programs. Like you, there is some bc and other cancer in my family, but those who have been tested had no known genetic variation. However, given what I know now, I think I might have been considered high risk based on my family history, so might have been monitored a bit more closely due to dense breasts, and probably would have been encouraged to get off the HRT I was on. Not that anything will totally prevent us from developing bc, but closer monitoring might have found it sooner, or given me peace of mind that I was doing enough to monitor my situation. Deanna
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my suggestion is to continue being tested. But don't do the surgery unless it is necessary. My family is high risk for cancer. I am one of 9 children. I have lost 1 sister, 1 father, 2 brothers (twins) to bone cancer, colon cancer, breast cancer and met of brain. My twin sister has been tested for the genetic mutant gene and we do carry it. Currently my twin sister was diagnosed with bc stage 3 in her right breast. she has just finished chemo and is being scheduled for surgery. I was diagnosed a week after her for bc stage 3 in my left breast. I have had a double mastectomy. and I have begun chemo treatments. We both will be going through radiation. So do the test people. Its important to be well informed and proactive.
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There are many many mutations that raise the risk of getting breast or ovarian cancer. They have only discovered a small number of them and declared them to be deleterious. So, when you come up 'negative', it could be an uninformed negative result. As Dr. Narod recently published, family history can trump a negative BRCA test.
Two suggestions: 1) Find a certified genetic counselor 2) go to the FORCE website where you can learn anything you need to know about hereditary cancer. www.facingourrisk.org
Best of luck,
Caryn
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With 2 first degree relatives with bc, you should qualify for "high risk" screening just fine. What that means is that getting regular MRIs in addition to the Mammograms should not only be possible, but should be covered by insurance. As you've discovered, each test picks up different things, so it is truly advantageous to do both. In my experience, the type of bc I had showed on the mammogram VERY clearly, and it also appeared on the MRI (though I'm not positive they would have spotted it on the MRI without knowing in advance that it was there). But most types of bc show up better on MRI than mammogram. (And on digital mammogram much better than on standard film mammogram.) I've met lots of women whose bc showed up on one and not the other. As someone recently dx with bc, I have both annual bilateral digital mammograms and annual bilateral MRI (but do one or the other every 6 months). I have also had annual pelvic ultrasounds for some years now. That would likely find ovarian changes before there were any other symptoms. And as you probably already know, the problem with ovarian cancer is that women don't typically know they have it until it's grown/spread enough to cause symptoms. At which point it's pretty hard to stop. My cousin (the daughter of the aunt with ovarian cancer) opted to have her ovaries out at 40 and urged me to do the same. But I was 30 at the time, and the idea seemed CRAZY to me!! Now, at 48, with my own breast cancer dx and having seen my aunt dx for OC years ago at 53, I am planning to have my ovaries removed this year. It turns out, removal before age 50/before menopause is considerably more protective than removing them later. I'm in perimenopause now (erratic periods, etc), so don't want to wait any longer.
Since both your mom and sister tested negative for BRCA1 & 2, I agree with you about their being no point in you also doing genetic testing at this point. There are a lot of other genes that are involved in breast and ovarian cancer, but have not yet been identified and so we cannot yet be tested for them. My family has ovarian, breast and colon cancer - those three are known to be related genetically - yet I tested negative for BRCA1 & 2. It doesn't mean there isn't something genetic going on - it seems pretty obvious that there IS! The negative test just means the gene(s) my family is dealing with isn't BRCA 1 or 2. After I got the negative results, the genetic counselor suggested I give him a call every year or so to see if there have been any new genes identified that might fit our family profile.
In terms of good diet and exercise protecting you, they certainly help - no doubt! And both (especially if "good diet" means low saturated fat), clearly reduce the risk of recurrance for breast cancer survivors. But eating well and exercising doesn't guarantee anything - the risk reduction shown in studies is somewhere between 25 and 40% - no where near 100%. Or even 90%! But our lifestyle choices ARE the area where we have some control and can make real decisions. We don't have much we can do about genetics and the larger environmental factors.
Good luck to you, whatever you decide to do.
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