Does Anyone Know Why We Are No Longer to Do Self Exams? - Page 2

Carolyns · 11-25-2009, 09:40 AM

Hi Laurel,

Are you saying that it says somewhere in the current language that the US will stop treating patients with Stage IV cancer or terminal illness? I hadn't heard that although I have been plenty concerned limiting the access / insurance payment for chemo's used off label. I have also found that entrance to trials is much tougher once you have had multiple lines of treatment and expanded access isn't really expanded as far as I can tell.

Carolyn

Laurel · 11-25-2009, 11:09 AM

No, Carolyn, but it is a good question and I am glad you asked. I am merely extrapolating given the silly stance taken regarding SBEs and Mammos that the next trial balloon to be floated could be no aggressive treatment for Stage IV cancer. It only takes a few studies to declare the treatment of Stage IV cancer as "statistically" not beneficial in light of its enormous expense vs response. They will exert that it takes X amount of dollars (and we all know our care is hugely expensive) to achieve a "statistically insignificant" response to treatment....that for every dollar spent only .000000X % of those treated receive any lasting OS....and that money could be better spent on prevention.....

OH WAIT! STRIKE THAT LAST BIT! No! No! We cannot afford to spend on prevention, mammos are tooooooooo expensive and self breast exams tooooooo stressful....All righty then! So! Will all you nice ladies just stop fussing about dying and more on already? For the better good and all that...okay, Ladies?

Are ya gettin' my drift here? A good analogy is that of the lobster happily swimming along in the pot of water as the cook (the Feds) slowly turn up the heat a bit at time. He never knows he is boiling alive, or that he is going to die.

I am strongly suggesting this is an incremental path by design, a cruel means to an end. Yours and mine.....

StephN · 11-25-2009, 11:27 AM

This post relates to cost and not the fact that I did do exams and did find my lump.

OK. I have to admit that MY stage IV cancer treatment has cost well over one million dollars. In fact, I hit my one million "lifetime" coverage with my health insurance mid-summer of 2007. Having to take a drug like Herceptin indefinitely (for as long as I live, was the prescription) costs a lot of money.

Treatment for my brain tumors and the aftereffects having two brain surgeries also cost a couple hundred thou.

I am no longer getting my vitamin H, in opposition to the "standard of care" for people like me who stay alive.

Herceptin does not cost $7,000 per treatment and more in other countries. I did not set the price, but am bound to run up the charges as long as it worked for me.

I toted up the costs during my first year of adjuvent treatment and it was a little over $100,000 in those days (no Herceptin). Anyone else keeping track of their bills and payments issued?

Laurel · 11-25-2009, 11:37 AM

Steff,

I have stated previously I am well over 250K and I am stage I. Your post was an eye opener, and frankly speaks to my point; I am afraid.

StephN · 11-25-2009, 11:55 AM

Laurel -
I did not mention that many of my drugs (besides Herceptin) were not charged to my insurance because I was in clinical trials. My neupogen was also not charged because Amgen was a partner on one of the trials.

Otherwise my adjuvent amount would have been higher as would the amounts for later treatment.

WE are the weak link in this debate. All the Big Boys are too big to fight, so all the waste and corruption goes on and it is our quality of care that suffers, now and in the future.

margiermc · 11-25-2009, 01:17 PM

I give cards of self breast exams to my daughter, 18, my son's girlfriend and all other young girls in our family.

I tell them feel a baseline what is normal, next time see if it's the same, anything different tell your doctor.

I'm not sure of any guidelines are sticking with any doctors'
and my doctor will continue giving me herceptin, until he is told something different.

I remain healthy, I stick to the know your own body plan, any pain changes, etc, go to the doctor. emergency room, whatever works if you want to stay here and chat in this beautiful room with others fighting the same disease.

margie

Carolyns · 11-25-2009, 01:41 PM

I asked a question about cost of treatment and drugs to an aids advocate. I asked how the HIV aids community addressed the cost of meds. He said that in that community everyone is "outside of the life raft" and that there was a huge push from the entire population to get the drugs covered with or without insurance. He said that in the case of Breast Cancer there is only a small part of the population "outside of the life raft (with mets)" and that the larger community did not have the sense of urgency. I was attending a breast cancer conference at the time.

Carolyn