I say yes, you say no, OR People are Strange
Comments
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Linda - thank-you for the link about autism. That makes so much sense to me. I get so frustrated with the attitude that because they can do something ergo they should do something - and give no thought to the possible ramifications of those actions.
I don't know if I sound silly because I'm a fan of mammograms and really against most of what passes for pre-natal care. But we've been having babies for millions of years without taking pictures of them whilst still in the womb. I had my babies a long time ago (the oldest is almost 40...
) but even then I was very cautious about they wanted me to do or take. Due to frustration over my son's birth (my first), for my second I went to a mid-wife. She was ADAMANT that I take nothing, nada, zero, zilch while pregnant. Even vitamins she was extra cautious about. I loved the woman!!!I guess I look at the end result of breast cancer and the end result of pregnancy as pretty diametrically opposite things. I'm sure that some babies have received treatment at a critical juncture due to pre-natal ultra-sound, but I would think that those are extremely rare. I dunno - even to myself I sound a little odd....
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Libby - so sad about your sister.
Alexandria - the flight time to where my daughter is similar to the flight time to NZ and the cost also. Maybe one day you will get to see NZ - it's absolutely gorgeous and no snakes!!
I was so lucky my bc was found so small but they missed the one in the other breast which was found by a much more thorough screening centre a year later. I now have MRI's every year as well as mammo and ultrasound, so they are unlikely to miss anything. MRI's are not covered by health insurance here unless you are BRCA+ve, so I pay $900 but it's worth every cent.
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Tooth feeling better already after only one dose of antibiotic, so back to work today - at least I have Friday and Monday off for our trip.
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Here's my take on DCIS. I'm under the impression that maybe 50 percent of DCIS progresses to invasive, but conversely most invasive begins with DCIS. DCIS doesn't spread; invasive cancer does. So, a clear way to prevent mets - treat all DCIS until and unless we get to a point when we can distinguish which cases will progress and which will not. We may never know how many DCIS cases would have progressed to invasive cancer and then spread, by doing this, but if we save even a few women, that's good by me.
Here's another q. - why should we have to choose between putting more money into research on prevention and treatment for mets as opposed to early stage detection and treatment. Here's an idea - lets choose to do both instead of funding another unnecessary war. Latest estimate is the Iraq and Afganistan wars cost between 4 trillion and 6 trillion.
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Alexandria, way, way, waaaay too logical!
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Don't think I have much to add on the DCIS issue. I do know that my PCP was good about ordering mammo's which for several years resulted in having to have an US right after. Apparently they were watching something....but never discussed it with me.
Lo and behold, right before time the next year to get my mammo/US, we lost the health Ins. we had. I called my PCP's office to inform them and heard the nurse give a sharp intake of breath. I could be wrong but feel they were watching the later found, slow growing Papillary ( indolent and lazy ) cancer.
I was able to go to the V.A. and they ordered up all the right tests which then got me in to have a biopsy. Most of the Papillary ended up in the needle. Went for a lumpectomy and the Dr. removed a bruise that was very close to the operative site.....keep messing around and lo and behold....found a second much faster growing IDC. I'm certain she saved my life. I had the vision ever after that many surgeons might have been content with just taking the damaged, dead bruised tissue out and sew me back together.
Doesn't have a lot to do with DCIS, other than some was found. I just started to wonder......just how long the Radiologists were going to watch what was going on.....at what point would it have been enough for THEM to order up a biopsy. Got to thinking......hmmm, might have been the best thing that ever happened to me....losing that Ins. The V.A. did not play games and look at things and ho-hum anything. I was tested from one end to the other.
Blue I had been reading about that memo you referenced. It is just my opinion, but I think there has been a great turn in how people view politics. Personally, I think the Bush/Gore fiasco, plus many of the horrid miss-steps Bush took in his last four years put many people on notice. Then of course, the election this last time with the voting issues and notwithstanding, a Republican candidate that didn't know what he stood for. I guess I think people have just about had it with the shenanigans, name calling and dis-respect. Lastly, when you know what your constituents want and go the other way, best not be expecting a pat on the back.
Glad the day is over and I can relax.
Jackie
( thinking about every one that isn't posting right now and sending lots of healing thoughts ).
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Thank you for all of your BC stories and Libby, so sorry about your sister. Belinda - your cancer subtype looks similar to mine - may i dare say you are luminal B with her2+? I was faithful about mammos, after my mother and 2 maternal aunts and 2 of my mother's cousins all got BC at age 52. Seriously, all at 52. I got to 56 and skipped a year, thinking I had escaped the scourge (which turned out to be brca2). Too busy for my mammo that year. Finally got one at age 57 and pow - 1.1 cm (as viewed on image) grade 3 cancer. I often wonder what it would have looked like the year before, had I not skipped my mammo - the first year I had skipped since age 40. Or what if it didnt show up until 2011 and that was the year I had skipped. The mammo definitely caught my cancer, and not one MO or GYN could feel it (before or after dx).
Insurance won't pay for brca testing, unless you already have cancer (if you are the first in family to be tested for), so what about these young women with strong family histories....are they suppose to just wait for cancer, without getting mammos at their younger ages because some women are getting biopsies that are benign and this is "overtreatment?" Kaiser is doing the same with colonoscopies and new guidelines are being discussed to limit pelvic exams - one way ovarian cancer is discovered folks!!
My thoughts are with Athena and frankly for all of our Stage IV women here. I don't know how you do it. Everytime I read a story at BCO about another women finding out she has a recurrence, I just feel sick inside. It's one thing to fear cancer coming back, but the ramifications of it actually coming back seem more than I think I could handle. Athena must be dealing with this news the way she needs to, but it can't be easy. I really hope her brain scans are clean. They need to be. I miss our lioness.
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Kam, I always thought I was stage 2a (my main tumor was less than 1 centimeter). And I feel stupid, but I'm not really familiar with the "luminal" term (just googled it, though). Will ask my oncologist this week about it when I see him.
Regarding your comment about pelvic exams, I actually read an article today in the New York Times about them. I'll find the link and post it.
Regarding Athena, here's my theory. I believe she had mentioned that she was having trouble with the wifi connection, so I'm betting that that is the case (and why she can't post) and/or I'm thinking the brain mri came back all clear, but they whisked her into surgery for her neck/spine and she is recovering from that. Pure speculation, of course, and hoping all of our good vibes and wishes are helping her, even is she can't read and post right now.
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Kam, here is the article:
http://well.blogs.nytimes.com/2013/04/29/an-exam-with-poor-results/
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Belinda - brca2+ puts one at risk for melanoma. brca1+ does not. Have you been tested? The risk isn't like it is for ovarian or breast, but it might be 4-8 times higher than the average joe, which ofcourse, is pretty low. It also puts one at risk for pancreatic cancer and in some mutations, gastric cancers. And little did I know, my particular mutation, combined with one of 22 other mutations, including another brca2+ (i.e. from the non brca parent) puts one at risk for fanconi anemia.
My coworker's father and brother both got melanoma within 2 years of each other. His brother was only 50. Stanford deemed it some unknown family mutation.
Luminal B's can be her2neu+ or not. They are always ER+ with high Ki67 (>12%). I think, but am not sure, PR is weak or negative. Mine is weak but positive. Prognosis not as good as for Luminal A's.
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Kam, I was never tested. I did bring it up a few times, but my oncologist didn't think it was necessary. In hindsight, I probably should have gotten tested right away. Thank you for your information, I will bring it up at my appointment.
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Belinda - the most important part about being tested would be a risk for ovarian cancer. I couldn't get those things out fast enough! My ER+ was strong on IHC, but mediocre, yet positive on Oncotype. PR was on the edge of being negative. I noticed you are on Femera - I was just reading this is the best AI for Lum B's, though I have no idea why. I was going through my paperwork recently, though, and noticed a comment on my original biopsy path - "ER+ and weakly PR has only a 30-40% chance of hormonals working." Shock! Has your MO ever said anything about that to you? I have read hormonals often don't work on Lum B's, as well as chemo, but had never read it on my own med reports. Crap.
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Kam, no my MO never mentioned that (the % of hormonals working).
And I agree with what you said, crap! And I agree with what soooo many say.....it's a crapshoot!
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When I was dx for the second time (and thankfully came down on the DCIS side of the 50/50 DCIS-IDC crapshoot), I only briefly (like for about 3 seconds), considered keeping my "good" breast. The surgeon said that a prophy mx wasn't "medically necessary," but looked relieved when I said I wanted one. She actually smiled with relief when I said I wanted an ooph, too, and said with GREAT relief that the combo would reduce my chances of recurrence to less than 1%. (Note: even though I "get" the stats and risk assessments, I use "granny math" for my personal assessment - I will either get it again or I won't - 50% crapshoot either way).
Because my mom had DCIS, her sister had IDC and we believe their mother had Paget's (had a nipple "amputated for exczema"), my onc at the time suggested BRCA testing the first time I was dx - I was negative. When I was dx the second time, they suggested testing for a "large rearrangement," another BRCA-type test, becase my sister had been dx by then. I was negative for that, too. I just got it anyway.
Not one of my doctors tried to discourage me from getting an ooph or a prophy mx. My gyn, actually, said, "Your breasts tried to kill you and your ovaries were in on it!" "Medically necessary" and "prudent" might be conflicting goals for the medical establishment trying to save $$, but nobody, not even the gyn surgeon, tried to talk me out of it even tangentially. Hell, DH was so insistent that the ovaries come out (he was terrified) that if the insurance had turned down the surgery he was prepared to go roaring up the food chain.
The insurance uttered not a peep. Prudent won with them, too. -
So much to consider and so many factors, and like pip said, so many shades of grey....there is no black and white. Good to hear everyone's "stories." I've got an early work meeting tomorrow, so I'm going to fix a nice cuppa and head to bed.
Wishing everyone a peaceful night.
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L - I've been considering getting an ooph - I was ER positive. Did the BRCA test - (ashkenzie Jew with DC) was told I was negative. I've been weighing the possible risks of the ooph, including osteoporsis against the odds of getting ovarian cancer or the estrogen promoting those a recurrence in whatever few breast cells I have left- and keep getting stuck on making the decision. I've got too much on my mind right now. Maybe after everything calms down in my life, I'll go ahead and get it done.
Hope that Athena is indeed recovering from the neck surgery and her brain scan was clear.
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Psycholibby, my experience with doctor reactions has been similar. My first question to my surgeon was whether he would do a prophy on the left while we were at it. He said it was not medically necessary and that he could not, in good faith, recommend it, but that he would be willing to do it. When I told him I definitely wanted it done, he was very happy, ditto for the ooph.
Surgery is a radical and rather brutal approach and there are days I sorely miss my poor ovaries. It is a bit weird to become a eunuch before turning 50. However, I am still convinced that it was the best approach, for me that is.
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It's interesting how differently we look at our bodies and their various parts. I didn't have any hesitation about demanding that they take my ovaries. I wanted them the hell out the first time -- the second time I would have done anything it took to make sure they went. I also wanted a BMX the first time, but I was talked out of it by my BS -- and actually, what I did was indeed more in keeping with how I usually approach things. Try the minimum first and then escalate as necessary. But I don't miss them at all, I don't feel incomplete or like a eunuch or anything. I just have a couple of scars on my stomach to go with the 24" long one across my "bikini" (insert hysterical laughter here) line. I am still waiting to miss my real breasts -- I have breast-like objects (had a DIEP) which look but don't feel like breasts. I was actually not going to get recon at all (fully supported by DH), but BS asked me to see the PS (who is awesome in the truest and original sense of the word). DH actually didn't want me to undergo the brutal surgery for the DIEP, and remains ambivalent about it. He is happy if I'm happy, but the 20-hour surgery, the narcotics reactions, the multiple follow-up surgeries and the belly incision opening have colored his reaction. Maybe I stay in a permanent state of denial or maybe I'm just ruthlessly practical enough to be cold about it, but I'm glad the bunch of organs that were conspiring to kill me are gone. I don't miss them at all -- them or their hormones. But other people are more attached to their parts.
L -
I know, it's really personal how we react to this stuff. I really, really wanted to have breast-conserving surgery, but wasn't a candidate. Finding that out was the single most devastating part of my dx. And even though I'm glad I was able to avoid rads (especially since I had a full node dissection), I do miss my breast. I never considered a prophy on the other side, or an ooph. I want to keep as many of my parts as I can.
I also have a love-hate relationship with mammography, which colors my reaction to the emphasis (or overemphasis) on annual mammograms (especially for younger women with dense breast tissue). My first reaction after dx at age 46 was that mammography had saved my life, and I offered myself up as an example to my friends as to why they should make sure they were current in their screenings. But in fact my cancer never showed up on the mammograms I'd been getting faithfully since I was 40. It was only diagnosed because of some incidental findings, and the 4.5 cm section of DCIS never showed up on either mammograms or ultrasounds, only MRI (along with a lot of false positive stuff that led to multiple painful biopsies). So honestly, I don't know if I'm a screening success or a screening failure. It's complicated stuff.
Linda
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On another note:
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Alexandria - YIKES, I missed this - Hope that Athena is indeed recovering from the neck surgery and her brain scan was clear. DID SHE HAVE NECK SURGERY?????? So much to deal with at one time, wish there was something we could do to help her....
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Hugs to Athena if she's checking in.
Found this at TruthOut -- Big Pharma Ripping off Americans:
Each year, millions of Americans are dealt the devastating news that they have cancer, and each year, millions of Americans, many of whom are uninsured, have to figure out how to pay for the life-saving treatments that they need.
And unfortunately, that decision can be a very hard one.
Thanks to America’s for-profit health insurance industry, prescription drugs are a big business.
In fact, in 2012, the top 11 global drug companies made nearly $85 billion in net profits.
They made these profits by slapping extraordinary price tags on the prescription drugs and health treatments that Americans are forced to rely on in order to survive devastating diseases like cancer.
But while drug companies have been largely able to get away with robbing Americans left and right for the past several decades, more and more people are speaking up about the outrageous costs of lifesaving treatments.
A group of more than 100 leading oncologists from across the globe have penned a journal article, announcing their plans to start a campaign to force drug companies to slash their profit margins.
In the article, the groups of oncologists ask, “What determines a morally justifiable price for a cancer drug? A reasonable drug price should maintain healthy pharmaceutical industry profits without being viewed as 'profiteering'.”
But cancer drugs aren’t the only drugs on the market that are gouging the wallets of Americans.
Last year, 11 of the 12 new-to-market drugs approved by the Food and Drug Administration were priced above $100,000 per-patient per-year.
And, Americans pay nearly 50% more for comparable prescriptions in the United States than they would in the UK, France, Germany, Spain and a host of other developed nations.
For instance, look at Nexium, a drug commonly prescribed to treat acid reflux.
In Spain, a prescription for Nexium costs, on average, $18. In France and the United Kingdom, Nexium costs, on average, $30 and $32 respectively.
But here in the United States, a prescription for Nexium costs, on average, a whopping $187, six times as much as it costs in France and the UK.
Lipitor is another commonly prescribed medication in the United States, used to treat high cholesterol. In New Zealand, a prescription for Lipitor costs, on average, just six dollars. And in South Africa and Spain, it costs $11 and $13 respectively. But here in the United States, a prescription of Lipitor costs, on average, $100.
These are just two of the commonly used drugs that are bankrupting Americans.
Other commonly used medications, like Nasonex, Cymbalta, Vytorin and Celebrex also cost far more in the United States than in other countries in the developed world.
Prescription drug pricing in the United States is unregulated, which means that Big Pharma can charge whatever it wants for prescription drugs.
If you ask executives at America’s top pharmaceutical drugs about the high costs of prescription drugs, they’ll tell you that high and increasing drug prices are needed to sustain research and development efforts. But numerous studies have debunked those claims.
One study, by the group Families USA, found that America’s major drug companies are spending more than twice as much on marketing, advertising and administration than they do on research and development.
The report also found, not surprisingly, that the total profits of America’s top pharmaceutical companies far exceed their research and development costs.
Make no mistake about it. Lifesaving medications and commonly prescribed drugs in America today are absurdly expensive here – and only in this country – because Big Pharma is ripping off Americans.
So what can we do about this? How do we drive down the costs of prescription medications?
Right now in Canada, drugs cost a fraction of what they do here.
That’s largely because in Canada, there is a single-payer insurance program that negotiates prescription prices.
As the group Physicians for a National Health Program (a group of doctors campaigning for a single-payer healthcare system) points out, when all patients are under one healthcare system, the payer, or the American citizen, has a lot more clout and influence over the pharmaceutical industry.
For example, the Veterans Administration gets a roughly 40% discount on prescription drugs because of its large buying power. Imagine if that buying power were spread to all Americans. Instead, Republicans put into Medicare Part D that it is illegal for Medicare to negotiate with the drug companies for discounts – they have to pay full retail.
Competition and negotiation – what some would call “the free market” - are the great fears of Big Pharma, and why Big Pharma is so opposed to a single-payer system.
But isn’t it about time that we put the lives of Americans ahead of the padded wallets of Big Pharma’s executives and stockholders?
It’s time to save lives.
We already have a single-payer non-for-profit healthcare system in America – it's called Medicare. All we need to do is reduce the eligibility age to birth, and give it the ability to negotiate prices with the drug companies.
I call it Medicare Part E – E for Everybody. It could be done with a two-page piece of legislation, and has been proposed repeatedly in Congress only to be blocked by Republicans.
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I would not welcome losing body parts, but would do it rather easily if need be. My reaction on being told I had a tumor in the left breast was probably somewhat typical....don't fool around, just take it. Dr. Ryan being used to reactions like that talked me 'down' from there to something a lot more reasonable for me. As at the time it seemed I had a very tiny Papillary tumor, I did opt for breast sparing lumpectomy. Since I have left-sided weakness from a stroke, and my tumor was left-side....it just seemed less surgery was a better answer.
Didn't know there was a second aggressive tumor there as well. Much bigger, but Dr. Ryan successfully removed it all with clean margins and took the three Sentinel nodes that were clean as well. That being the case, The mammo's never revealed the larger IDC. I keep having the mammograms but I do go where I can get the digital kind which are better. My tumor ( the IDC one ) was never felt by anyone. So, my feeling as well is that it is a crap-shoot so to speak.
I'm not much on philosophy but you get what comes and do what you can with what you have. For me there is not a lot else. I had the good fortune to come from a loving and stoic family who were pragmatic about all of life and as time goes on, I find I use the approach I grew up with daily and always appreciate it more all the time.
Jackie
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Having external body parts chopped off is traumatic, at least for me. I "just" had a lumpectomy, but felt compelled to go through reconstructive surgery to look and feel more normal. However, I could care less if some of my innards are taken, as long as I function the same, or better.
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CforC....I know the article is correct. I also know that part of the reason these new drugs come on the market is for profit only. When I had to start going to the V.A. for my medical care....they switched all the 'newer' drugs I was on to older drugs that did the same thing.
Turns out most of the older drugs did the same or better job in some cases. The V.A. looks for the drugs that will do the work that is needed for the best price. That results in my paying much, much less for the ones I need -- like the thyroid meds for instance.
It is outrageous to hold sick people hostage for the drugs they need. The food industry is busy adding all sorts of weird chemicals and ingredients into our food to make it last for a yr. or more on the store shelf or in your pantry, while the drug companies reap the benefits of how ill you may become from what you eat. I have a big ax to grind on both the drug and food industry. This could go even farther with the kinds of chemicals that go into the ground causing different kinds of contamination , but I'm only saying that the article is true. We have know for a long time what the root of all evil is and the drug companies are a great example.
Jackie
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I have no ovaries, uterus, breasts...but they were involved in a mutiny. The ship is sailing much better now that the remaining parts are standing guard against further attacks.
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Smiling with pip
add a large part of my colon, and my gallbladder to the list - and you speak for me too
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