BRCA

[Jambalaya]

I know that at least two of us here are waiting for this testing, so I wanted to start a thread about it.

Phanie, good for you for fighting to get the test. Are you scared of the result? I am, but if it's positive I keep telling myself that it's a means of getting good care that I couldn't get before the test, even though I would still have the same risk as if I hadn't taken it. Part of me wants to bury my head in the sand and just trust to dumb luck and that feeling "it won't happen to me" which I could easily give in to, but rationally I know the sensible thing is to have the test. If it's positive, I think the knowledge will be hard to live with. However, being rational again, not testing doesn't make it go away if it's there, right?

Background: I have a huge family history of breast cancer going back many generations, plus other cancers in the side-relatives such as ovarian, and the whole picture strongly suggests BRCA. I just found out recently when I did my family history and sent away for my ancestors' death certificates.

I think, for me, the hardest part of all this would be other people's reactions. When AJ told the world about her situation, I was utterly appalled to see that people still criticized her for trying to save herself even though she had this incredibly powerful gene mutation that had killed her aunt, mother, and grandmother at young ages, giving her an 87% chance of getting it. How can anybody judge her in this way, given the facts of the situation? Brad Pitt's supposed friend, Melissa Etheridge, publicly condemned AJ's choice as "fearful" and then said it was all about what you eat. I think Melissa has currently survived breast cancer, but a) it can come back after many years, see Olivia Newton John and b) AJ's gene predisposes her to a very aggressive form of breast cancer which most people without the gene don't get. How could Melissa be so uninformed and so publicly cruel as to criticize a woman going through what AJ did, with AJ's genetic/family profile? People actually criticized her for attempting to avoid the experience of aggressive cancer, which was something of a family tradition for her.

I've already had a very negative reaction from a family-member-by-marriage which has resulted in the termination of our relationship. When she heard about the history of many generations, she said to "let go" and "move on" from my mother's death and she said, just after I'd told her about the family history - quote - "Please do not let this become an obsession."

Yeah, she actually condemned the process of trying to save my own life as a potential "obsession". I could have killed her.

And then she went on to blame the water in that area! These days we know all about genetics, and I had just told her my findings, and she said that those people all grew up in the same area and what else was going on there in the air/water, etc? Well, the latest victim - my mother - never lived in the same village as my ancestors and had moved hundred of miles away from that area fifty years before her death.

Despite clear presentation of the facts and despite the fact that we both speak English, she was completely unable to accept that the five generations of women directly before me dying of breast cancer meant a clear and present genetic problem. I felt she was totally minimizing the problem, and therefore didn't really care, and I was extremely hurt.

In prior years, when I "only" knew about my mother's and grandmother's cancers, all doctors that my family and I had seen said there was no problem. Friends weren't concerned, either. No one was, despite the two family members in the same line. Now, the first family member I told about the huge family history refused to believe it, like people refused to believe that AJ's life could be in any serious danger. It makes me wonder what it would take for some people to believe it. But probably there are some people who think you can beat powerful gene mutations with diet.

This is a taste of things to come. Seeing reactions to AJ and my relative's horribly cruel reaction makes me realize that the fewer people I tell about my situation, if the test is positive, the better. This means you have less support, of course. But people don't really understand about breast cancer, about what a relentless killer the genetic kinds can be - at least, it is in my family. I also read about a woman who mentioned her BRCA-positive status at work and the next thing she knew, people were coming up to her asking how she was, and she was passed over for a promotion that she was expecting to get. Lesson: Don't mention a thing to anyone at work!

I'm feeling pretty raw and I've felt disappointed at a friend who thinks I should just do screening if the test if positive. She knows that I have extremely dense breasts and that no machine can really see through them.

If someone I really cared about had an incredible family history plus a gene mutation, I'd really want them to have surgery so that they'd be safe. I can't imagine encouraging someone who's important to me, with that profile, to take a wait-and-see approach. To me, that sounds dangerously close to implying that they don't think you should avoid getting cancer, which means.....what? That the only acceptable reason to get rid of your breasts/ovaries is if they are already cancerous? You can probably imagine how hurtful this is. What is it about people's refusal to believe that someone's life could be in danger from a gene that's killed everyone before you? Is it good old-fashioned sexism?

As you can tell, I'm having an extremely hard time wrapping my head around some people's stupid reactions.

Phanie, when are your tests?

 

[ksinger]

The following nutshell analysis works for a lot of health related issues.

The people who are slagging you for your concern, are at some level, fighting seeing a very important truth: many health issues are truly random and have zero to do with what you DO, or how good or moral you are. They have a deep need to think that what you DO is all that is necessary. Why? Who knows. Identity and control issues? But what they usually go for the in the category of "doing something", is what we ingest. It's the easiest thing to control, and granted, in some instances dietary changes can effect some pretty amazing changes, or keep certain tendencies from expressing. But most of the time? Diet as a preventative or cure all, is a pipe-dream. But it's a lot more pleasant to believe that our sacrificial dietary choices and goodness, will protect us from bad things happening. By considering a very different approach to a potential health issue, you are upsetting them. They sense a glimmer of how they just might be wrong and if that's the case, maybe something bad could happen to them too!

IMO, their criticisms about you and to you, are about them and how your choices are making them uncomfortable.

 

[monarch64]

Some people cannot deal with reality. Good for you for tackling it head on. No, you may not find the support younwish to receive from those you need it, but there are support groups and other outlets like PS that can offer support.

Two girls I went to elementary school with had cancer by the time we were 30. One is a breast cancer survivor, the other ovarian cancer survivor. A third had a hysterectomy last year because her mother died from ovarian cancer and she didn’t want to take the chance.

People are very weird about cancer and death and illness in general. You have your grief whores who want to be extra involved and it strikes their ego to feel they are “helping.” You have people who won’t want anything to do with you because it makes them so uncomfortable to think about your “weakness.” You have people who will joke about it because it’s the only way they know how to cope. Watching my dad go through endless treatments, remissions, recurrences, more treatments, surgeries, etc I’ve seen it all. 14 years now.

Do what is right for you, don’t expect anything from others, be your own advocate, and don’t listen to the jerks out there. Find a support group. You’re not alone in this, but I know it sure as hell seems like it. Good luck with everything as you move forward with testing.

 

[Jambalaya]

Very true, ksinger. Very true - and wise.

Rationally I know that you're on the money. Emotionally, I can't get my head around the dismissive attitude of that relative - which is why our relationship has terminated.

I don't know why people can't just say, "Wow, that sounds hard. I'm so sorry. Hugs!" or similar.

 

[Jambalaya]

Thanks, Monarch. Again, all very true and wise.

AJ must have felt so betrayed by that public criticism by someone who was meant to be a friend of the couple. But perhaps Melissa felt that it was unfair that AJ had warning and could do something about it, whereas she had already had breast cancer. Maybe that was at the root of Melissa's public condemnation of AJ's choice when AJ was dealing with all that.

I'm sorry about your dad's lengthy treatment. He must be very tired of it all.

 

[monarch64]

I didnt pay that much attention to the AJ/Melissa Ethridge thing, so didn't realize there was public condemnation. That's very sad. No one should be criticized for choices they make about their own body!

My dad turned 77 this fall and I know he's grateful to have made it through so much. Science and technology are wonderful things. A few of his doctors have retired throughout his journey, and while that always makes him anxious because he has to get to know new ones, I consider those retirements small victories--those docs weren't around long enough to see him die; he was around long enough to see them retire. I don't think he looks at it that way...he's kind of a pessimist, but I do and it comforts me. The people around you can make a lot of difference in how things go with your health. You need support and I hope you find it.

 

[Jambalaya]

Cancer is so unfair, isn't it, Monarch? I know your dad has reached 77 but it sounds as if he's had to go through way too much.

Agree about support, but for this, you have to look in specialist places. I know many other women are dealing with this. At least seeing AJ's experience, and reading commentary about it, plus my own relative's reaction have provided an early bellwether not to expect support from people who don't really know about the topic and who are quick to judge anyway.

 

[tyty333]

I'm so sorry Jambalaya that you are having to deal with unkind relatives. I think its like others have suggested that it just makes some people
uncomfortable to hear about it and would rather you stick your head in the sand. I dont know of this
AG/MG issue. I dont see how anyone could judge anyone else who has never been in their shoes (knowing they have the BRCA gene) and even then we all have to decide what's right for ourselves.

You are in my thoughts.

 

[yennyfire]

Very true, ksinger. Very true - and wise.

Rationally I know that you're on the money. Emotionally, I can't get my head around the dismissive attitude of that relative - which is why our relationship has terminated.

I don't know why people can't just say, "Wow, that sounds hard. I'm so sorry. Hugs!" or similar.

Amen! This applies to most anything anyone is suffering from..."I'm sorry" and an "I'm here to listen" and a hug goes a long way...

 

[Jambalaya]

Thanks, tyty33.

I googled to ME thing and this link came up with a story that ME reiterated what she said a year later. I see that ME also has the BRCA gene. I think I'm understanding what happened - ME did not get the chance to escape cancer but AJ did, so ME is trying to comfort herself by saying out loud that she wouldn't have taken advantage of the preventive measures anyway, had she had the opportunity. It is very unfair indeed that one person gets a warning and the other doesn't. However, ME actually said, "I wouldn't call it the brave choice," which sounds kinda bitchy when aimed at someone undergoing major surgery in order to save herself from the experience of cancer, chemo, etc.

 

[Bonfire]

@Jambalaya people say hurtful things out of their own ignorance. Sometimes it’s intentional sometimes not. Do what your instincts tell you and don’t worry about what others think or say. I’m so grateful to live in a time where medical advances give us these opportunities to be proactive in our health. I say this as I was diagnosed 14 years ago with very early breast cancer. I possibly wouldn’t have had as good of an outcome if discovered later rather then sooner. Take advantage of BRCA gene testing and take it from there. If positive you can be followed very carefully and that’s a GOOD thing! Hugs to you.

 

[minousbijoux]

I think, as ksinger so wisely wrote, its important not to take it personally. Having been through a lot of hardship and lived through it, I can say that everyone does what they can - if you as an individual are not getting what you need from them (that is, they are not able to give you what you expect or hope for), then move on to the next person. As one of the multiple tough things I've gone through in my life, I was diagnosed with advanced (metastatic) aggressive breast cancer before the age of 40 when my kids were toddlers. Prognosis was not good. Some friends rallied and stepped up, surrounding us with love and support, while others faded away. Some had pat responses to hearing the severity of the illness and where I was in treatment. Hearing things like "well, you just need to stay positive." or "don't dwell on it, just go live your life to the fullest!" Great advice from those who've clearly never been there. I work on assuming good intentions for all around me, so I realized it was their inability to fully understand and not some desire to hurt. Some friends faded away until I was out of treatment and recovering. Some of them are still important friends to me, but I recognize their limitations and won't expect them to be there for anything bad like that in the future. Everybody has limitations and does their best. In a time of need, just walk away (save your emotions!) from those who fail to give you what you need.

As for me, my mother had breast cancer, and my aunt and cousin both had aggressive, premenopausal breast cancers (like me - much more likely there is a genetic disposition). We have a fair amount of ovarian/uterine cancers in generations further back. Interestingly, I tested negative for the gene (in my case the horse was out of the barn).

 

[Queenie60]

Jambalaya - it's good that you're armed with this information and are able to be proactive with your health. I would not waste time with unthoughtful comments from others. Ignorance can get in the way sometimes and some don't realize the hurtfulness of their remarks. I too was diagnosed with a very aggressive , triple negative breast cancer 17 years ago and my proactive stance saved my life. Fortunately my BRCA was negative. I had the test done because I don't know my family history and I have a daughter and felt that I owed it to her to know. Take care and I wish you well.

 

[Calliecake]

Jambalaya, You are not alone in recieving the reactions you have received.
I had a very similar reaction from my mother and a good friend. I too opted to get tested for BRCA 1 and 2. Before my doctor did the test we had a long discussion on what we both felt would be my best options. My doctor thought that the gene was in my family because my Grandfather and uncle died of breast cancer. A cousin was diagnosed with breast cancer too. Another cousin has ovarian cancer. If I had tested positive I would have had the surgeries. My mom and a close friend both told me that I was crazy. Thankfully I tested negative. There was no way I would have felt comfortable doing nothing had I had the gene. IMO 87% chance is not a small chance. A year later Angelina Jolie had her breasts removed and my mom called to tell me what a great decision Angelina made. WTH. I didn't take there comments personally. They basically said they would not make the same choice I would have made. My mom now feels differently about it. The Angelina effect!

My cousin (who has two small children) was advised by her doctors to have both breasts and her ovaries removed when she was diagnosed with the same type of breast cancer her dad had died from. She refused the BRAC tests. Her decision was to just have a lumpectomy. Her mother was against the other surgeries and very vocal about it. Like you, I just don't understand how some people think.

You need to make your decision on what makes you feel most comfortable. Insurance paid for the BRCA test due to my family history. Push back if the doctor tells you it's not covered and call your insurance company.
I hope you and Phanie both test negative.

 

[Bonfire]

@Calliecake I’m glad you were tested and the results negative. I also hope your doctor has an aggressive plan for following you, as you have a strong family history. I have no family history and still got it. Hugs to you!

 

[Jambalaya]

Thanks, Minousbijoux and Queenie. I'm so sorry to hear that you both had to battle this dreadful disease.

Minou, are you still in treatment for the mets?

You're both right, of curse, about comments coming from ignorance and fear. I do have trouble dealing, though, because there was a time that I was also totally ignorant and fearful about sickness, and I wouldn't have said those things. I just need to tell as few people as possible in order to protect myself from getting more hurt.

It's a pity that some people have to be so judgemental.

 

[Jambalaya]

Bonfire, I'm so sorry that you had to experience breast cancer, but also happy that it was caught so early. Hugs xxx

 

[Jambalaya]

Calliecake, thanks, that's very helpful.

How did you pluck up the courage to have the test? And how did you handle the moment when the results come? I'm not even sure I'll be able to face the testing.

 

[Jambalaya]

Her mother was against the other surgeries and very vocal about it.

Callie, I wonder how her mother would have felt about the surgeries if she had ended up attending her daughter's funeral?

As you said, we just don't understand how some people think. It's as if they make a conscious choice not to connect the BRCA genes with death. They simply refuse to believe it. I have found that many women, whether symptomatic or at high risk of breast cancer, are simply not believed. No one believed my mother's side pain could be liver mets despite a large initial tumor. It took a while for her to get diagnosed. No doctor was remotely concerned about me until I did this family tree, despite the two relatives and me having 90% dense breasts. It's really, really weird. And now, even with the family tree, this person completely minimized and denied what I might be going through. I wonder what it would take to be believed by some of these people? Attending my funeral? Of course, then it would be all, "Well, the gene wouldn't have run wild if she'd only got up at dawn/did sun salutations/eaten hay and fennel salad tossed with fairydust."

I guess you will simply never win with some people, and that's the lesson here.

 

[Calliecake]

Bonfire, I'm sorry you had to go thru this and am glad you are doing well. I see a gynecological oncologist every year at a great hospital in Chicago. I know I'm doing all the right things but still panic while I wait for test results. The joys of being a woman!

 

[Bonfire]

Bonfire, I'm sorry you had to go thru this and am glad you are doing well. I see a gynecological oncologist every year at a great hospital in Chicago. I know I'm doing all the right things but still panic while I wait for test results. The joys of being a woman!

Thanks Callie, I hear ya sista! Sounds like you’ve got it covered. I go to Prentice Women’s Hospital in Chi.
Sending loving hugs and dust @minousbijoux @Queenie60 @Calliecake @Jambalaya

 

[Calliecake]

@Jambalaya When I explained my family history my doctor said I needed to be tested. I thought about it for a few months before I had the test and knew I would worry endlessly if I tested positive. I had my mind made up to have the surgeries if I tested positive. I think it would have been harder to get the test if I was undecided about what I would do. My husband was very supportive. Thankfully I tested negative. I'm still a nervous wreck every year when I get my mammogram and see the specialist for my ovary. Knowing I don't have the gene did very little to put my fears at rest. I have close friends who have had breast cancer and they didn't have the gene.

A SIL gave me a hard time about being tested and made lots of comments that she would never let them remove her breasts. She has had a sister die of breast cancer and another sister diagnosed with an aggressive form of breast cancer when she was in her 20's. My SIL refuses to even get a mammogram.

Jambalaya, I have to say from my experience any one I talked to about this had strong opinions. I found that kind of weird considering it was my body. You would have thought I was telling them to have the surgery.

 

[minousbijoux]

Yeah, I kicked it by "staying strong," "looking on the bright side," "refusing to give in," and "just living my life to the fullest!"

Its been almost 18 years. Multiple surgeries, rigorous chemotherapy, radiation treatment and aromatase inhibitors and hormone therapy have made it a distant memory. I can only hope it doesn't come back some day.

There is a blood test (they might have refined it since I had it) called CA-125 that can pick up breast cancer cells in the blood. At the time I was going through treatment, I was in a support group of young women (under 40) all of whom had advanced and aggressive breast cancer. We talked a lot about the CA-125, and most said once they completed treatment, they would absolutely have the annual test to see if the cancer was recurring. Their logic was that they wanted to know that they needed to start putting their affairs in order. At the time, I agreed and had the test. It was at negligible levels and I did a happy dance. Six months later, I had it again, and my test showed elevated (not good) levels - in other words, looked like it was back. The problem, is that like the BRCA test, it shows something but it doesn't tell you where or when even. So what did I do? Instead of appreciating the knowledge to now help me put my affairs in order and devote my time to loving my babies, I went into a funk. I did those things, but the quality of my life had completely shifted - how can you be happy when you are waiting to die fairly imminently? I had a repeat of the test a few months later. I have an unrelated and fairly trivial thyroid problem and the chemo had thrown my thyroid levels off a bit; while they assured me that there was no interaction and that the thyroid problems could not be throwing off the CA-125 blood test, when the thyroid was normalized and I repeated the test a few months later, I was back in the normal range for the blood test. And you know what? I decided that I would rather live my life not knowing than dreading every blood test and have it ruin my life if it came back with signs of cancer. Its been years now and I don't even think about it much.

So I guess the only thing I can say is that you know yourself and know what will work for you. If the test comes back positive, will you make a preemptive strike like AJ, or will you do nothing but be fearful? Only you can decide what is right for you - and what you decide is the right thing!

Hugs to all of you - cancer sucks.

 

[Jambalaya]

Callie, OMG your SIL has two sisters who developed breast cancer, one in her 20s, and the SIL won't even get a mammogram? That's insane.

Yeah, I don't have a plan for if my test is positive. I think that the surgery is the most effective prevention, but I'm just not sure I could do it.I'm not even 100% sure about getting the test, but since the center books six months out, I had to make the appt.

Re. everyone's opinions in the world at large...everything I hear and see just tells me that the fewer people I confide in, the better.

There really is such a lack of understanding. Do we really fetishise boobs so much that people have such difficulty believing that they can kill people, or difficulty accepting that sometimes they should be sacrificed to save lives? Apparently so. My mother and grandmother both had it, and I have those really dense breasts. Pre-family tree, I saw this breast specialist who was not remotely concerned about me and never even gave me the results of my MRI. You have thought that those risk factors would be enough.

I've heard of other people receiving very unhelpful reactions, too. I think
people just can't accept that these sexy, pretty, comically bouncy things are complicated organs with the power to cause deadly cancer. I also think that the pinkwashing lobby has presented breast cancer as an "Ooops!" - something you have a brush with before skipping merrily into the future. Not only do people not understand about hereditary cancers, I'd be surprised if many people think about the trauma that people who survive breast cancer have been through.

 

[Jambalaya]

Minou, I am so glad that you're OK now xxxxx

 

[Bonfire]

Minou, I am so glad that you're OK now xxxxx

Wish there was a button for Love this!

 

[Calliecake]

So glad you are both doing well @minousbijoux and @Queenie60

 

[ksinger]

Wow. So many cancers. And so many so early. My SIL is slightly over 2 years out - and doing really well - from one of the more terrifying cancer diagnoses you can get, and she got it at 38: stage IV colon. She and I bonded over that in a way that we'd not, prior. Facing down cancer at the very same time will do that. Mine was kinda meh on both the cancer scale and my personal freak-out meter - I've had so many other things in such a short time, it was kinda like, Oh, look, another "thing" to be dealt with.

Aside from the fun of doing rads at the very same time (right before Christmas - we were both totally wiped that year, when we discovered the joy of ordering CATERED FOOD! It's a new holiday tradition!), we did talk a lot about attitudes of other people, and even ourselves, (tying back in to the discussion of diet and doing something). I know she and I both had unbidden thoughts right after diagnosis, of "What did I do wrong". I am pretty sure this is a very very common reaction, to more diagnoses than just cancer. Our societal insistence that we can control almost all aspects of our lives, and if we don't, well, then we might just deserve what happens to us, is pretty pervasive. You have to fight the tide on that one. The real issue of course, is the deep fear of death, and the irrational but oh-so-seductive idea that we can stave it off as long as possible if we just DO the correct something.

 

[CJ2008]

That the only acceptable reason to get rid of your breasts/ovaries is if they are already cancerous? You can probably imagine how hurtful this is. What is it about people's refusal to believe that someone's life could be in danger from a gene that's killed everyone before you? Is it good old-fashioned sexism?

I think it's worse when that "hesitation" about a woman having the surgery comes from men...

As if if a woman doesn't have breasts...what good would she be then.

I don't think it's what they mean - but it's how it FEELS to me when I hear men question the decision.

BTW - history of cancer in my family too. 4 women, all on the maternal side, that I know of. Not sure on my dad's side since I don't keep in touch with them.

 

[t-c]

I know that at least two of us here are waiting for this testing, so I wanted to start a thread about it.

Phanie, good for you for fighting to get the test. Are you scared of the result? I am, but if it's positive I keep telling myself that it's a means of getting good care that I couldn't get before the test, even though I would still have the same risk as if I hadn't taken it. Part of me wants to bury my head in the sand and just trust to dumb luck and that feeling "it won't happen to me" which I could easily give in to, but rationally I know the sensible thing is to have the test. If it's positive, I think the knowledge will be hard to live with. However, being rational again, not testing doesn't make it go away if it's there, right?

Background: I have a huge family history of breast cancer going back many generations, plus other cancers in the side-relatives such as ovarian, and the whole picture strongly suggests BRCA. I just found out recently when I did my family history and sent away for my ancestors' death certificates.

I think, for me, the hardest part of all this would be other people's reactions. When AJ told the world about her situation, I was utterly appalled to see that people still criticized her for trying to save herself even though she had this incredibly powerful gene mutation that had killed her aunt, mother, and grandmother at young ages, giving her an 87% chance of getting it. How can anybody judge her in this way, given the facts of the situation? Brad Pitt's supposed friend, Melissa Etheridge, publicly condemned AJ's choice as "fearful" and then said it was all about what you eat. I think Melissa has currently survived breast cancer, but a) it can come back after many years, see Olivia Newton John and b) AJ's gene predisposes her to a very aggressive form of breast cancer which most people without the gene don't get. How could Melissa be so uninformed and so publicly cruel as to criticize a woman going through what AJ did, with AJ's genetic/family profile? People actually criticized her for attempting to avoid the experience of aggressive cancer, which was something of a family tradition for her.

I've already had a very negative reaction from a family-member-by-marriage which has resulted in the termination of our relationship. When she heard about the history of many generations, she said to "let go" and "move on" from my mother's death and she said, just after I'd told her about the family history - quote - "Please do not let this become an obsession."

Yeah, she actually condemned the process of trying to save my own life as a potential "obsession". I could have killed her.

And then she went on to blame the water in that area! These days we know all about genetics, and I had just told her my findings, and she said that those people all grew up in the same area and what else was going on there in the air/water, etc? Well, the latest victim - my mother - never lived in the same village as my ancestors and had moved hundred of miles away from that area fifty years before her death.

Despite clear presentation of the facts and despite the fact that we both speak English, she was completely unable to accept that the five generations of women directly before me dying of breast cancer meant a clear and present genetic problem. I felt she was totally minimizing the problem, and therefore didn't really care, and I was extremely hurt.

In prior years, when I "only" knew about my mother's and grandmother's cancers, all doctors that my family and I had seen said there was no problem. Friends weren't concerned, either. No one was, despite the two family members in the same line. Now, the first family member I told about the huge family history refused to believe it, like people refused to believe that AJ's life could be in any serious danger. It makes me wonder what it would take for some people to believe it. But probably there are some people who think you can beat powerful gene mutations with diet.

This is a taste of things to come. Seeing reactions to AJ and my relative's horribly cruel reaction makes me realize that the fewer people I tell about my situation, if the test is positive, the better. This means you have less support, of course. But people don't really understand about breast cancer, about what a relentless killer the genetic kinds can be - at least, it is in my family. I also read about a woman who mentioned her BRCA-positive status at work and the next thing she knew, people were coming up to her asking how she was, and she was passed over for a promotion that she was expecting to get. Lesson: Don't mention a thing to anyone at work!

I'm feeling pretty raw and I've felt disappointed at a friend who thinks I should just do screening if the test if positive. She knows that I have extremely dense breasts and that no machine can really see through them.

If someone I really cared about had an incredible family history plus a gene mutation, I'd really want them to have surgery so that they'd be safe. I can't imagine encouraging someone who's important to me, with that profile, to take a wait-and-see approach. To me, that sounds dangerously close to implying that they don't think you should avoid getting cancer, which means.....what? That the only acceptable reason to get rid of your breasts/ovaries is if they are already cancerous? You can probably imagine how hurtful this is. What is it about people's refusal to believe that someone's life could be in danger from a gene that's killed everyone before you? Is it good old-fashioned sexism?

As you can tell, I'm having an extremely hard time wrapping my head around some people's stupid reactions.

Phanie, when are your tests?

I want to clarify some things: bilateral mastectomy does NOT guarantee that you will avoid breast cancer; it greatly reduces your chance of developing it, but not to zero.

In fact, the recommendations when a BRCA carrier is primarily to have bilateral salpingo-oopherectomy (BSO, removal of both ovaries and Fallopian tubes), then secondarily consider mastectomy or simply surveillance with mammogram plus MRI, which are calculated to be equally effective. Note that the recommendation is based on prospective studies showing that BSO is associated with decrease of ovarian cancer, breast cancer, and all-cause mortality. The double-mastectomy is a secondary recommendation because effective screening for breast cancer is available, unlike with ovarian cancer.

As ever, talk to your doctor AND consult with a genetic counselor who will explain and help interpret your risk as a BRCA carrier.