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 :D, 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. :mad: 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.:o

[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. :rolleyes:

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.

[Possegal]

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.


Just to clarify, the colonoscopy is most definitely more effective. They can biopsy anything suspicious while they are in there. It's one reason it is the far better method than the fecal occult blood test - which will only detect blood in your stool. If you are looking to find something early, in a pre-cancerous state, waiting for blood in your sample is not the most effective way as most polyps don't bleed. Being able to sample anything suspicious is also what makes a regular colonoscopy better than the "virtual" colonoscopy, where you swallow the camera. There are researchers developing a sample style of detection that would look for DNA of colon cancer, but that isn't available yet. Until then, colonoscopy is most definitely the most effective way to screen for, and catch colon cancer early and when it is very curable.

Though agreed, something is better than nothing.

[rocknrollgirl]

I am currently waiting for the phone call with my results. I had the blood test 8 days ago.

Mom died of ovarian, her sister has breast, cousin on that side with breast before the age of 30.

If the test is positive, I will have my ovaries removed. I had a partial hysto 6 years ago.

After watching what my Mom went through, the decision for me is easy.

[arielmoon]

My mother has encouraged me and my sister to get this test but I am on the fence. My mother and her mother are/ were breast cancer survivors and now my father's sister is as well. Because I am high risk, I get a mamo every year, but that is it for now.

[rocknrollgirl]

My test came back negative.

[GLC1968]

My mom is a BC survivor, my grandmother was not. I will not be tested. Knowing that I carry the gene would not change my plan of attack, so I see no point to doing the test.


My test came back negative.

Good to hear!

[OakLeaf]

Yay R&R! :)

[Crankin]

Good news, R and R.
I think I would have it, but not sure. While I'm in the "genetic" group for the BRCA 1, no one on either side of my family has had bc. In fact, no one has had cancer, unless you count my dad, who has been living with prostate cancer for 20 years or more. He was about to have surgery when my mom got sick (not cancer) and he canceled it. After she died, he got treated with hormone injections and he's been fine since.

[shootingstar]

Yay, R &R!

As for taking preventive health care steps: If there are unknown environmental pollution/factors that contribute to my health, that's something I couldn't have known/often beyond my personal power.

But at least, I would like to be at peace with myself, that I have done what I could personally do to help myself improve my own health.

If anyone should claim genetic testing for protstate cancer for guys, it's misleading/rip-off (for now): At this time, over 80% of all men will get prostate cancer. It's just that for some men, it grows real slow and they end up dying of other natural causes in old age before cancer gets them. this has been confirmed by 2 physicians for my father since he does have prostate cancer. (But no other medical problems at all @81 yrs...which makes it more surreal. )

This is what I do indicate to people in person if they feel like giving up/or what's the point of taking preventive health care steps since 'we will die anyway" syndrome: The more multiple medical problems a person has, as they age, the more difficult one's health care will become. And most likely, more suffering there will be/taking more multiple drugs for different medical conditions simultaenously.

[itself]

Rocknrollgirl, congrats! Go celebrate in some fashion!

My friend was told that she has an 85% chance of getting breast cancer. Having tested positive for BRCA1 and having a complete hysterectomy, I know she is not driven by fear, but by the mere fact that her sister already had cancer. She wants to get it done and over with.

As my job includes speaking to specialists, I spoke to a woman surgeon today. It is amazing that a woman can recover in just two weeks from the breast procedure. She said if your surgeon is not using the skin spearing method, walk away. This is standard. The breast expansion takes a while but one can work while it is being done.

I spoke to a nurse who said the insurance, believe it or not, are covering the entire procedure. In fact, she has a dear friend that had a unitlateral done, and the insurance company paid to equalize the other breast despite not cancer issues with it. It seems, for once, the medicine is finally taking care of woman, not just men and their prostates.

Millions of dollars are spent on trying to "cure" cancer. I honestly do not think they are trying to cure it. The pharmaceutical companies would lose far too much money if it were cured. Pathetic really.

Good health to you all...

[Owlie]

Yay, R&R!

I'm not sure they'll ever find a "cure for cancer." There are just too many different types and too many things that may or may not cause or contribute to the process that finding that magic bullet is practically impossible.

While this may be a bit away for me (I hope), I'm not sure I ever get tested for it. It's just one more thing to worry about, and from what I know about my family's medical history, I'm at greater risk for heart disease or stroke than cancer--things that are shown to be impacted by stress.

If, however, I were to get tested and it came back positive..I'm not sure what I'd do with the information. Extra vigilance, I guess.

[Possegal]

as someone in the field, there is nothing more insulting to me than hearing that we're not trying to cure cancer. It took my father and is taking my sister. But yeah, as long as I have enough money, it's all good. Pathetic indeed.

Walking away from this thread, as I've tried to explain things about cancer and cancer research etc on this board before and was insulted beyond belief. I'm done with that.

I'm always curious of the grand conspiracy folks, you really think we don't want to cure something that is killing our loved ones? Killing us? We buried a much loved co-worker in February - lymphoma.
Or was there some sort of get-out-of-cancer-free card that I was supposed to get? I wonder where mine is? My sister could really use it right now.

Thank God for the Ignore thread feature.

[itself]

Having been a pharmaceutical rep myself, these companies are completely taking advantage of consumers. I was paid over $100k a year to have doctors sign for samples of drugs, and sent on fancy trips to the Breakers in Florida, and even a trip to Rome. My car and gas were paid for and my computer. I am ashamed that I was in that profession. So glad not to be in it anymore.

These monies could be better spent. I hope that the government dissolves these positions. In Europe, pharma reps are non existant, as they should be.

[Owlie]

Yes, I disagree with the way pharma does business, but to say those on the R&D side aren't doing X or Y (or are doing Z) out of greed?

-She whose parents worked in R&D for a pharmaceutical company and still work with pharmaceutical companies for a living; and will likely end up in the employ (R&D) of a pharmaceutical company, given the field she plans on going to grad school for.

[roadie gal]

I wish there's was more of a push toward PREVENTION rather than cure. If we could be serious about getting the poisons out of the air, water and food, and the hormones and antibiotics out of the food chain I believe that the incidence of cancer would drop dramatically.

[Selkie]

Having been a pharmaceutical rep myself, these companies are completely taking advantage of consumers. I was paid over $100k a year to have doctors sign for samples of drugs, and sent on fancy trips to the Breakers in Florida, and even a trip to Rome. My car and gas were paid for and my computer. I am ashamed that I was in that profession. So glad not to be in it anymore.

These monies could be better spent. I hope that the government dissolves these positions. In Europe, pharma reps are non existant, as they should be.

I'm not sure how you can compare company incentives/perks w/pharmaceutical companies taking advantage of consumers. If you don't like the business practices, exercise your power as a consumer and buy your medicine in Canada or Mexico. No offense intended. However, this sort of thing is not limited to one industry/field.

The company is in business to make money. It's not a public welfare agency or a charity. Do you think that the government should take over the industry? That way your taxes can pay for the R&D, manufacturing/packaging, etc. There also won't be any "competition" which could have an adverse impact on advances.

I'm not trying to be a *&^%$, but this is a complex issue. Everyone is entitled to an opinion but please, let's be respectful to others.

I cannot believe that the industry is intentionally NOT trying to find a cure for cancer(s). Let face it: whatever company comes up w/a cure will make lots of $$$$$$. And think of the positive PR.

[lisathew8lifter]

i think your friend is wise to have the test. my best friend's mom died of breast cancer and all of her aunts on her mom's side have cancer except one. she had the test and tested negative for it thankfully. she was fully prepared to have a double mastectomy though. i never thought of the insurance company fiasco that could happen as a result of being tested. ugh. i hate insurance companies just as much as i hate cancer!