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Thanks for your voice of common sense about breast health education. What I would like to see is more emphasis on breast changes instead of breast lumps. Inflammatory breast cancer (IBC) has an average age of onset about 10 years younger than other forms, and usually doesn't have a lump. Yet even IBC almost never affects teenagers.
My sister had breast cancer(in remission) I have prostae cancer(in remission/haven't been reased from dotor follow up's), my wife has anal cancer(confined to hospital bed at home) still undergoing chemo. I read posts from different moderators on this site.Their comments and those of cancer patients and survivors are very educational.I feel that,the focus on cancer has been slow as far as insurance coverage. Many insurance companies cringe when, someone applys for insurance and cancer as a preexisting condition is seen on ther application. If,a applicant has no preexisting conditions,Insurance companies will fall all over themselves to cover applicants. I would like to see cancer patients,suvivors and sites like this one to work together in order to change how,people with cancer are treated by insurance companies. oh, by the way,my wife has medicare but no medigap insurance.I think laws should be changed as far as provisions pertaining to coverage for cancer patients and suvivors.Thank You. John
Thank you PJH for your reply. There are alot of members of congress and the senate in Washington,Who have never read nor do,They realize or even understand,everything thats in the coverage bill. There are things in the the universal health bill that,I absolutely refuse to accept or agree with. Another thing is, each party thinks that,their bill is the only one that should be passed. If somethings were removed or modified and if,Everyone worked together,people in this country might support them in getting a decent health insurance bill passed. However,I haven't heard anyone in washington comment on cancer coverage. If,members of congress and senate haven't read the bill,how can,They present any facts from it to the american public? I think,the american public has every right to be angry. Its like haveing a closed brown paper bag being shoved into the face of each and every american and being told by a government official,This is what is good for you. We need resonsible members in government in washington not later but today. The american public has been misled(hood winked) on too many subjects by washinton and didn't realize it until,It was too late.John
PJ -
If you were in the 5%, perhaps you might think differently. For that 5% of us, breast cancer appears to be more deadly. While the survival statistics have improved for the 95%, for us in the 5% there has been no improvement in the last 20 years. This bill is more about public education and awareness because all too often young women are not taken seriously when they present classic breast cancer symptoms. Young women have to be taught how to see the symptoms and how to demand treatment. One of the reasons there has been no change in survival statistics, is because it is hard to get research funding when you only represent 5% of the population. We may be a small group, but we have been ingonored for far too long. If this is what it takes so no other young woman gets breast cancer, has the chance to have a child taken from her due to treatment, goes through her most productive years with body image issues or debilitating persistent side ffects, or leaves behind young babies, then bring it on. No piece of legislation will ever be perfect and please everyone. There are outstanding parts to the EARLY Act that overshadow the minow flaws you point out. It is never fair to forsake the 1 for the 99. Especially when you are the 1.
I know what you mean, Jeannette - I'm "the 1" in "how many women actually have their lives saved by a mammogram." But how do we strike a balance between scaring the 99% into demanding mammograms and biopsies at the age of 19, going through emotional hell at the age of 16... while still saving the 1%? THAT is the question that's so hard to answer. Thanks for commenting here - nice to see your name again! PJH
I don't htink they will be demanding biopsies at at 19, but at least demanding to be heard. I don't think we can condemn and awareness system when we don't know how it will be implemented. I can't imagine we would get that far with our message if we aren't baing it on fear.
And thanks for still spreading the word. Good to see you too!
It''s grossly unfair to say that EARLY is "skewed too young." The bill covers adult women 45 and younger. I agree about getting teens overly concerned. But the fact is that 5% of breast cancer occurs in women 40 and younger in the US. These women have special needs and deserve special attention and education. See http://earlyactawareness.org to register your support for EARLY.
This legislation would provide US government funding ($45 million over five years) -- which really is just a drop in the bucket relative to the overall budget --to better educate young women *and their doctors* about breast health and breast cancer issues.
In recent years, new means have been developed to reduce the likelihood of breast cancer in this age group, to identify women who are at higher risk of getting breast cancer (genetic testing, the HALO Breast Tap Test, etc.), and to treat breast cancer very early on when it is most curable.
You can get the actual text of the bill at www.Thomas.gov (search for “early act”). There is a also site through which US residents can get more information and urge their senators to support the bill, at http://earlyactawareness.org.
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Thanks for this info., and the links. I have mixed feelings about this - if the education focused more on the women more likely to experience cancer symptoms (30s rather than teens, say), then it would be very helpful. I'm just very worried about getting these frantic teenage girls even more worked up than they seem to be. As I mentioned, it's unbelievable to me how many 13-, 14-, 15-year-olds I hear from scared to death that they have breast cancer. As you say, though, let's not throw the baby out with the bath water; if the funding is used to its best effect, I'm all for it. Thanks for connecting here - PJH
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A friend--a doctor--has a 19 year old daughter who was diagnosed with aggressive breast cancer. Another friend--whose daughter went for her first mammogram at age 40 (as recommended), was found to have aggressive breast cancer her first time in the press. Her father--who thought this disease had skipped generations (his mother died of it at age 42--but his sister did not get it) was diagnosed last winter HIMSELF! As I read the stats, there is almost an epidemic of bc among women under 40.
Is there a way to support the Early idea with an emphasis on taking charge of our bodies at a young age--maintaining a life of being informed and knowing all the dangers as well as the options? It is my feeling and experience that fear grows in a vacuum. More information at an early age can only have a good effect if presented in a way that is positive and empowering rather than frightening.
As you well know--this diagnosis no longer has to be a death knell. So much news is encouraging and healing. You and your website are testimony to this. You look great, by the way! My daughter has curly hair growing back and looks better than ever (one year after diagnosis). Life is good and hopeful. Thanks for all your help along the way.
Oh, Barbara, I'm so glad to hear that Brooke is doing well! And growing her hair back, too. Thanks for staying in touch.
I agree, there's a need for education - it's just that this bill is skewed way too young, in my opinion. Yes, there is that very, very rare teenager who gets breast cancer, but trying to catch it early, in a teen, I'd think would be virtually impossible - given that the majority of teens have lumpy breasts at one time or another. I can't see regular mammograms starting under age 20. Or even age 30. I think 40 is a good age to start, given the statistics. And yes, I understand more younger women are being diagnosed. But I'm not sure if it's an epidemic of BC in younger women, or simply so much more awareness, and so much more testing, that women who perhaps had breast cancer, and it went away - as supposedly 40% of breast cancers do, spontaneously - are now being diagnosed and having it treated.
It's a tough issue, for sure. And people have debated it forever, and continue to do so - how much effort, time, money, and harm to others do you put into saving one life? I'm on the fence - and I was a "one life" that was saved! I have no good answer; I just continue to mull it over.
Thanks for writing. Be well- PJ
To add confusion, I don't think there are good studies yet available on the negative effect of mammograms! So starting early is really dubious in that case. But statistics are so hard. If you're the one out of 100, it's 100% for you. I appreciate your sharing the many sides of some of these issues...
You're also good at keeping us all straight, as I know you correspond with many. Thanks, P.j.--for being a friend along the way.
And you, Barbara-