Have you been tested for the cancer gene?

[itself]

A dear friend of mine just got tested for the breast cancer gene, and the news was not good. She has an 85% chance of getting breast cancer, and thus is looking at a double mastectomy. Although the medicine in Arizona is not what I consider the best, we do have Dr. Victor Zannis here, who has an amazing reputation as a leading breast surgeon.

Have any of you had this gene test? And if you tested positive, what did you do?

[shootingstar]

Maybe I'm the last to know, but I have never heard of this gene test.

Obviously I've never been tested for this. But then I'm clear after my last breast examination over 6 months ago.

Does your friend have any confirmed malignant tumours? (Aside from this gene test.)

[KnottedYet]

I haven't.

While the type of breast cancer that runs in my family is likely genetic, there isn't a test for that one yet. (it's the one that is linked with malignant melanoma)

As soon as there is a test for that one, I'm getting it. And if it is positive, I'm getting a double mastectomy. I've already had the malignant melanoma, and I have watched the suffering from the breast cancer in the maternal side of my family.

I love my boobies, but not that much.

If your friend is very active, I'd suggest she not do tram-flap reconstruction. When those cause trouble, they are a real pain to rehab.

Edit to Add: oops! There is a test for my family's brand of breast cancer, it's the BRCA2 test. (I knew about the BRCA1 linked to ovarian cancer.) Ahh, ignorance is not bliss. Time to make an appt with my doc... http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA And if my insurance company balks, I can try this: https://www.23andme.com/health/all/

[roadie gal]

My sister, who died last fall from breast cancer, was BRCA-2 positive. I have made the decision NOT to get tested because I don't want the insurance companies to refuse to pay because it was a pre-existing illness if I have the gene and someday end up with breast cancer. I know it's illegal for them to do that, but I don't trust them as far as I can spit.

I've discussed this with my gyn doc. Each year we test me as though I do have the gene: mammogram and pelvic ultrasound. I think it's the best way to go for me.

[shootingstar]

I have made the decision NOT to get tested because I don't want the insurance companies to refuse to pay because it was a pre-existing illness if I have the gene and someday end up with breast cancer. I know it's illegal for them to do that, but I don't trust them as far as I can spit.

It continues to amaze me about the pre-qualification 'problems' and private health care insurance companies in the U.S.

But another whole topic in itself which doesn't address itself's friend's dilemma.

[OakLeaf]

I know my thoughts on the subject are unpopular.

But I've had the chance to get friendly with my mortality, and I've come to a place of believing that that is a good thing.

I think we should all make these decisions from a place of strength and not a place of fear. That is, as my sig line a few weeks ago said, "ask the next question." Decide what you will choose at each step BEFORE you decide to have any tests. If this is positive, then what? If I choose this treatment, then what? After the treatment is "complete," then what? This doesn't only go for cancer testing of course, but because that is such a huge fear-driven business in the USA, it's one of the kinds of testing that we think about most often, and when a test comes up positive or equivocal, it's so easy to let abject terror and the directions of outsiders drive our decision-making.

Understand at each step what quality of life you would be giving up (including the emotional quality of life). Study the statistics and understand what your real chances are of a greater quantity of life. When you're healthy and before you have any tests of any kind, make a decision as to what quality of life is acceptable to you and what you're willing to give up for the chance of a longer lifetime. Enshrine these decisions in your Living Will, and in specific, preferably videotaped discussions with your doctor and your family.

[KnottedYet]

When you're healthy and before you have any tests of any kind, make a decision as to what quality of life is acceptable to you and what you're willing to give up for the chance of a longer lifetime.

And decide if your goal is less suffering, or a longer life. Sometimes the two are not the same, and it's important to be clear in your directives.

[Trek420]

Paternal side: Dad & Grandfather died of cancer, Grandmother survived breast cancer and lived to be a very active 100 , an aunt survived skin cancer.

Maternal side lost an aunt to lung cancer.

Both aunts were possibly enviornmental causes but who knows.

No smokers by the way.

I've had my own scare with skin cancer. A check up and biopsy revealed some moles to be pre-cancerous.

I don't have information on my family further back than grandparents. But the pattern seems to be there and maybe close family is all I need to sense there may be a pattern.

I second concerns about insurance companies and even employers establishing a track record of a pre existing condition. I think it's crazy that we can't take every effort to be informed and take control of our health without concern.

I get my breasts smooshed every year, this reminds me I need to get a pap smear and most important find a new skin doc. The one I go to has to be prodded and nagged to really look at all the skin.

Dude, you're a dermatologist, this is why you went into the specialty!

After my first check up I took to riding my bike to appointments so I'd be wearing shorts, he'd have to check the legs. I need to get to Seattle and Knotts doc who checks everywhere.

[Grog]

I am sorry to hear about your friend, itself.

A few years ago, there was quite a bit of discussion on prophylactic mastectomy, i.e. prevention measures against breast cancer. At that time, what I gathered (but I wasn't paying extreme attention) was that the benefits of such preemptive measures were not all that obvious, and that it was still possible to get breast cancer despite having had one's breasts removed.

Now, the treatment might have evolved in the meantime, I don't know.

In any case, I would never get genetic testing myself, for any disease that I can think of.

But, seeing it from a distance, I also see the gene testing like an industry, a fear-driven industry, so I am naturally suspicious...

[shootingstar]

Whenever I am asked about my family medical history...I have to say, I tend to answer in a vague way with..only reference to my parents. Not much further back. I only know how 2 aunts died out of ..um 10 aunts and uncles paternal and maternal. I have no clue how my 3 grandparents each died. 1 of them died just after a dental surgical procedure. Latter all died in China.

While I don't discount genetics as a factor for certain health predispositions in a family line, I think for me to indicate what my grandparents, aunts, uncles were like medically isn't totally helpful to determine my health disposition, for these reasons:

1) My lifestyle, or my generation's is very different from previous generations. On top of that my diet is quite different (but not as radically different compared to someone eating alot of dairy-based, fatty and meat based diet) from relatives in mainland China over the past 50 years. Diet particularily different between a developing country and a developed country over a span of 50 years.

2) Medical system between China and North America is different..so that could affect treatment/lack of treatment.

As well as access to preventive care information is a factor across generations depending on geography, linguistic comprehension and literacy.

however latter, even if one is more literate and have access to a ton of preventive health care information, it doesn't guarantee better health/self-care. For certain North America, is just screaming example of many people knowing the right info., but not acting much on it.

'Course there are good stories too...like folks here who try take preventive health care measures/lifestyles.

[Aggie_Ama]

I am not sure I would have it. I just don't know if I would chose surgery on a chance, I have never had surgery for any reason. My attitude might be different if I had a history of family breast cancer.

My Dad had colon cancer at 53 and mom pre-cancerous polyps so I will be lining up for my colonoscopy at 40 instead of 50. And knowing that my fair skin puts me at risk for skin cancer I need to get a dermatologist.

[Trek420]

My Dad had colon cancer at 53 and mom pre-cancerous polyps so I will be lining up for my colonoscopy at 40 instead of 50.

Ah, there's also a way to collect a sample and mail it in rather than do the colonoscopy. That's been sitting in an envelope waiting for me to do that. This may be TMI but you can mail in a sample to a lab rather than the colonoscopy. I don't know which is more effective but for sure something is better than nothing. This thread is a good reminder.

As for preventative care, lifestyle and diet changes I'd have to say my Dad is an example of "eat well, diet and exercise .... die anyway"

With a lifetime of hard work, my parents grew their own organic food even long after they stopped farming their land for a living. What they did not grow was mostly local and organic. We even had our own well water.

At nearly 88 my Mom still gardens avidly and walks to the farm market.

They are my inspiration that a healthy active lifestyle is not about living forever but enjoying life while you are above ground. I feel that it's quality of life vs quantity. Nobody lives forever but while I am alive I'd like to be able to be fit enough to open the peanut butter jar, do the things I like to do etc.

[KnottedYet]

I'm reading more about BRCA1 and BRCA2 this morning than I've read in ages.

Seems like having one of the cancers influenced by these two genes before age 30 is a big warning sign.

My cancer (one influenced by BRCA2) was in my mid 20's. Been getting my mammos since my mid 30's, so that's pretty well covered. Scandinavians have higher rates of BRCA2 mutation (oopsy). I'm not Ashkenazi Jew and there's no history of ovarian cancer in my family, so I'm not likely to have BRCA1 mutations.

Really, a lot of the personal statistics can be worked out before taking the test, and the test would be a piece of data to add to your personal statistics.

Only something like 10% of breast cancers are linked to BRCA mutations, that means 90% of breast cancers are wild cards. (feel your boobies! http://ww5.komen.org/content.aspx?id=5310 )

However, something like 60% of women with known BRCA mutations develop breast cancer. And if a woman with a BRCA mutation has already had that mutation express itself with a cancer, that percentage goes up.

[badger]

my friend, who just turned 60, does have the gene. She had a hysterectomy about 5 years ago, and I believe she goes for a mammogram quite frequently.

As for preventative measures, I unfortunately have a pretty pessimistic attitude.

I truly doubt that many of my generation will be seeing the century mark. Despite our best efforts to live a healthy lifestyle, we can't help that we're surrounded in chemical pollution. It's in our water, our soil, and the air we breathe. Plastics are doing so much damage, I don't think we've seen the full impact of it on ourselves and the environment. Did you know that the receipts we get from stores are loaded with unhealthy amounts of BPA? And just because we buy "organic", doesn't mean that they haven't been sprayed or treated.

The waters are loaded with the synthetic hormones that we pee out from birth control pills - that's affecting the fish. Male fish are turning female, some are born with eggs!? I'll stop myself before I go really off on a tangent.

Sorry for the doom and gloom, I'm PMSing

[KnottedYet]

While the life expectancy in the US is lower than in the rest of the developed nations, I don't think that's due to pollution. More like general lifestyle and access to healthcare.

It's always shocking to me to go to Europe (or New Zealand, or even Canada) and see how much healthier and leaner people look. And it's horrifying to visit the mid-west and see how corpulent people are. Watch some of the original Sesame Street episodes or other US TV shows from 40 years ago, and see how skinny everyone looked.

Pollution is a problem, but I think lifestyle and healthcare access are larger ones right now.