Cancer Survivors Network

yes i was going to post about this. how many young people do we see diagnosed.? My first time I was 34. So many young women posting here and I see in treatment. Also My daughters will have to start 10 years before my age a t diagnosis. i worry about this so much.

http://news.yahoo.com/s/ap/20091116/ap_on_he_me/us_med_mammogram_advice

I'm 44 and a mammo caught my lump in September. It was stage 1, I can't imagine what would have happened if I'd waited until I was 50 to get my first mammo. I got my first at 35 because of family history. It also says that self breast exams are usless and women should be told not to do them. How many men were on the panel? And how many women who have had breast cancer were consultated? I bet the answer for women is 0!!!
Stupid government, run by males of course.

I have very vigilant followup and found my cancers myself. SBE so important. Along with mammo, and Mri

I found mine in a SBE, and almost everybody I've met in person during this found their tumor themselves. If women aren't supposed to get mammos or do SBE, is there supposed to ba a bc stork to deliver the news? Good grief

My cancer was found with by my regular mamogram and I am 43. I am just so glad that I went regularly.

crazy eh??? I am 38!!! they don't know anything.....

I heard the news today. Tonight Dr. Love was on the Nightly NBC News and she agreed with the finding. I've had mammograms for almost 20 years since I was high risk and was beginning to think they were worthless. Almost everyone I've known over the years found their tumor, lump, abnormality, etc. themselves. But after coming on this board I see so many younger women with bc, there has to be value to early mammograms. Now they won't be paid for under the new guidelines if I understand all this correct. Was just wondering how many of you found something yourself before having a mammogram?

I found a lump myself...and I am not high risk so never had a mammogram. I think that women should have the right to have one. I dont believe the govt should dictate our choice. Now less and less will have them because insurance wont pay.

I just shot an e-mail off to Pres Obama telling him to NOT let these new guidelines pass. I think it is ludicris to let it go through. I was told my my local represenatives office I needed to contact Katherine Sebelius and Pres Obama, they are two who can stop it from taking place. Maybe if he gets enough e-mails from furious woman he won't let it happen!

we should all e mail any try to stop this

I am dumbfounded that this study came out. I lost all of my breast to DCIS found only by a mammogram age 50/51. If I had to wait 2 years, I can't even imagine what would happen. It was bad enough the lumpectomy didn't have clear margins. I hope anyone believing in this study is affected, or knows somebody affected by no access to mammograms to help them see women as individuals, not actuarial data to be allowed to have cancer to cut costs. Fowvay.

Who can we write to? Can we lobby somewhere and tell them what a bunch of flaming arseholes they are? My best friend found hers at age 25! Her Dr. farted around with her breast concerns for 4 months, she went to another Dr. He did a biopsy on oozing from her nipple, there were cancerous cells, she had a mastectomy at 25. she is doing well today at 57, she just had a prophalactic other breast removal and she will get her reconstructed one "fixed" so both her breasts match.
I don't like the idea at all, we ladies need to do something! Screw ins companies!

It was the US Preventive Services Task Force that released this. It's part of the Dept. of Health and Human Services. Here's their site: http://www.ahrq.gov/CLINIC/uspstfix.htm

Call your Senator. Call all the Democratic Senators and tell them to vote no against this Health Care Bill. It hasn't even been passed yet and already they want to ration health care and who do they target first - WOMEN. If I didn't get screened before the age of 50 my stage 1 might have been a stage 2. I went to Tea Party Patriots and joined a group near me so that I could make my voice heard (THEY ARE A BIPARTISAN GROUP). So that maybe we can get the government to listen to all of us. It is a mistake to ask women over the age of 50 to only get screened every 2 years all they care about is the money they will be saving. They are trying to manipulate the cost so that they can turn around and tell everyone that the healthcare bill is paying for itself. At what expense - at the expense of womens' lives. All of you who are reading this, your mothers and daughters and sisters and friends and anyone you know has or is battling breast cancer need to rise up START MAKING A STINK to YOUR GOVERNMENT - THEY WORK FOR YOU - PICK UP THE PHONE LET THEM KNOW WHAT YOU THINK - WE NEED TO MAKE SO MANY PHONE CALLS AND SEND SO MANY E-MAILS THAT THEIR SYSTEMS SHOULD CRASH.

one of my daughters is in college and i am afraid she will believe this crap. i have the SBE card in their bathroom shower. I will have a talk with her

I am outraged out it. I am 45 and found mine through SBE. I am the 4th in the family. Maybe it should be pussed to do MRI's instead.

Totally unbelievable!!! They are nuts! I think the age should be cut way down to like 30 or so - not raised! Wow! I agree with you too S3 about MRI's! Those should also be mandatory!!!

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This was also discussed this morning on Good Morning America. Dr. Love was in agreement with mammograms being done at age 50 every two years. The other lady in the debate (didnt catch her name) was in disagreement. Said insurance companies wont have to pay for mammograms on younger women. I was diagnosed this Aug, I was 39, with breast cancer with liver mets.
Deb

My jaw dropped as I was eating supper last night and saw the news......

what a bunch of baffoons.......

I want a better world for my daughter and any future grandkids; I guess this is the new 'health care' system in the US - let's just treat anyone who doesn't have any 'conditions'. if we do have 'conditions', just let us die; it's cheaper......

I need to move to an island

Jill

we all send our stories or copies of this thread to those in control????? The fear caused by a false positive is minimal compared to the loss of lives this change could cause. As for a mam every other year - mine last year was clear and this year bc showed its ugly face. I'll be out of cyber touch for a week due to more tests and surgery, etc. but when I check back in I hope someone will have a plan to inundate some office with testimonies and pictures of those of us whose lives were saved by mammograms and SBE. Count me in!

We need to get the American Cancer Society to become more vocal about this issue. We should bombard them with our concerns, also the AMA. When I go to my onc Thursday, I'm going to discuss this with her. I'm sure our drs will be outraged over this as they know the value of mammograms and SBE. Perhaps they can make their voices heard too. I was surprised that Dr. Love agreed with the age 50 guidelines. She's been such a bc advocate. We need to do something for all those coming after us. I really think a lot of it is the insurance companies trying to get costs down; so what does it matter to them if our life is at risk. The new health insurance reform is going to take more than it gives. I dread what it will be like if it passes as its written right now.

The formation of the task force was funded by some source. I have been trying to find out all morning who funded the study. This report will be cited by every insurance company as the reason for denial of a mammography no matter what your doctor may request. We need the full support and political clout of the ACS to counter this study or women will once again be dying because of late detection. HELP!!

I was 34 the first time I had breast cancer. So, if I had waited until 50, I would be dead.

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I am not happy that these guidelines are changing. And to suggest that woman not do self exams. Now I would think that self exams would be even more important if you aren't going to be having mammos until the age of 50. Not everyone goes for a yearly exam and not all doctors do breast exams at these visits. So there suggestion is don't check your breasts, don't get mammos. You will, of course, notice the lump when it is the size of a 3rd boob. Screw that. I am going to tell my daughter to continue to check her breasts monthly. Then when she is 40, she should go to her doctor and fake feeling a lump in both breasts. My understanding is that if a woman feels a lump, they must do a mammogram. They can't just say they don't feel it and let it go. Most doctors would not wish to take that chance anyway. They wouldn't want to risk a lawsuit if they refused and she turned out to have cancer. I hate game playing but if that's what it takes, let the games begin. What I found most disturbing with these new guidelines, is that they are so strongly supported by female doctors. And it gives many young woman a very false sense of security. The "I don't have to worry about breast cancer I am too young" feeling. So a whole generation of young woman will not be checking their boobs or having mammos and how large will the lump end up before they feel it or see it and how far along will the cancer be. I couldn't feel my lump and yes it was small. But my sister's was large and widespread into her lymphnodes and she couldn't feel hers and neither could her doctor. And she went every year for her mammos. How big would it have been and how widespread if she had to wait two years. This is pissing me off big time.
Stef

I don't like to play games either, but I had to fake a more extensive family history to get a mammogram for a PALPABLE lump. Turns out, it was stage 2, grade 3 cancer. And it showed up on the mammogram, clear as day, despite my dense breasts. So a mammogram really did save my life. I think these guidelines tell women that they can't get breast cancer before age 50. And given that women don't like getting mammograms in the first place and now a government task force tells them not to... well, lives will be lost and that's a tragedy.

Mimi

Mimi
And that is what makes me so mad, that woman wouldn't check themselves or get mammos or even consider that the lump they do feel might be a cancer. Some will use the misguided logic that if the guidelines say 50, then it cannot be cancer. You were smart to play games. Sometimes it is the only way to get the job done. When I had urinary bleeding after having uterine cancer, my nurse practitioner wanted a IVP done. The doctor was hesitate to order one because I had frequent bladder infections and he thought that was the cause. She pushed and said that the bleeding had been going on longer than it had. The IVP showed a mass. It was bladder cancer. Bless her for her game playing. She is also the one who recommended my gene testing. She is so on top of stuff. And she will do anything to get the right tests done. It will be a sad thing when they do studies in 20 more years and see an increase in advanced breast cancers. Ones that could have been caught years early with better outcomes. I hope I am wrong but I don't think so.
Stef

Ok, I spoke with my surgeon who did my hernia, he also does breast cancer surgeries, he called me for results of an X-Ray of my abdomen he wanted and I had it today, things are ok with that, but I askd him about this new study, he said it's not gonna happen. apparently it's an OLD study that they drug up out of the basement! this is what a good friend of mine told me who is up on political stuff. Nancy Synderman was on MSNBC and she herself is a breast cancer survivor and let it out of the bag it's an old study with the old mammogram type equiptment, it seems it may have been a ploy to get us woman all beside ourselves, well, you guys know how government does things! My friend told me this study was done in 2002!

The new advice is so dumb and so dangerous. I hope no woman follows their advice. This is a life and death matter.

It is nuts! Just trying to save money at the cost of women's lives.

KYLEZ ♥

Or read the book by Suzanne Sommers, "Knockout". There is quite a bit of Controversy about this book and Sommer's in general... heres a link to a interview promoting her book.
It takes a while to load up...It would be interesting to get some comments on Sommer's and her book.
http://www.naturalnews.com/podcasts/Suzanne-Somers-Knockout.mp3

The skill of the Radiologist reading the digital mammogram is the key. The radiologist who read my mammogram I had in July said it was suspicious. He wanted another. I went to a different place for my second mammo, that radiologist KNEW it looked like cancer, told me so even before the biopsy. The biopsy was to determine what KIND.

Lanie I hope Snyderman and your friend are correct. Why would this 2002 study be brought up now? Because the rich insurance companies want to cut their costs, particularly if this new health plan passes. I also dont want the doctors who work for insurance companies to determine what I can or cannot have in the way of treatment. Young people, middle aged, and seniors will be equally affected by this. Let's hope and pray this information is not used in 2009 or the coming years. Our voices need to be heard. This is playing with our lives.

I think we should all march to our senators and congressmen/women houses or call them or all meet in Washington at the WHITE HOUSE. This is a topic that they need to hear. I am scared that if someone didn't get their screening mammo at age 35-40 then at age 50 when a mammo was done we would fing a lot more cases that were beyond stage 2.

I was 44 when mine was discovered and mine was HER2+ so does that mean they would have found mine after it had metastasized since HER2 as well as some others are very aggressive breast cancers and I would have been at stage 4 and never watch Jake grow up.

This scares the HELL out of me and others who are under the age of 50 or who have family members that need a mammo before the age of 50 due to family history.

Lots of Hugs,
Margo

I know that lots of ladies here have recommended Dr. Loves Breast book. Since shes for uping the age to 50, maybe we should boycott her book. I know I wont buy it. If I would have waited until I was 50 Id be dead. Im stage 4 at 39 and no family history.
Deb

Jacklyn Smith (Charlie's Angels) is a Breast cancer survivor, like me she had a normal mammo the previous year, and then had an abnormal one the next, so she is totally against the new study. I think these people really are nuts with this study, they need a real wake-up call.

Tonight on the "Nightly News", Ann Curry interviewed The Sec. of Health and Human Services, Kathleen Sebelius. She basically said don't do anything different. The govt. guidelines are still the same as they were. She also said talk with your dr. and do what you need to do. She said US policy is unchanged. To read more of her interview, go to msnbc.com and scroll to headline, US Policy Unchanged.
I also emailed the ACS and told them to keep the pressure on to keep the old guidelines. They are already protesting the new guidelines. Maybe a few more of you would like to email ACS too.

That this does not change the policy of the government! I found another link that should put most of our minds at rest regarding Secretary Sebelius' view on this topic:

http://news.yahoo.com/s/nm/20091118/hl_nm/us_cancer_breast_screening_7

I was as alarmed as the rest of you when I first heard about this very official sounding position putting so many more women at risk. I'm very relieved to hear that the government is taking a more cautious view of things.

That doesn't mean we still shouldn't advocate to the ACS and our elected officials what we believe to be the best policy for the government which is supposed to be of the people, by the people, and for the people!

Take care,
Cindy

discussion on NPR and I was shocked.
As of today there are only two inexpensive methods self examination and Mammogram.
Everybody on this board either found a lump or did routine Mammogram.
Ridiculous recommendations and definitely insurance will use this argument.
I found a lump myself at 46, had Mammogram 18 moths prior, have my child at 25, breast feeding, slim, no family history.
I still believe that one saved life counts more than 99 false positive Mammogram. After all even 7 days of worry who has to have biopsy is nothing compare to the early detection of cancer.
We should advocate and educate.

I think this is just another way the govt. is going to try and ram health care reform down our throats. First, mammograms are not important as a first line of defense, at least to the politicos in charge. Next, we'll have to fight to get our tests covered by insurance, and maybe limits as to how many we can have. Right now we can get second opinions if we want. Wonder how long they'll pay for that. Hope its not the beginning of the end of health care as we know it. Medicare is probably in danger too and that's the age group I'm in. I also pay $150 every month for supplemental insurance and for now its working fine for me. I'm waiting to get an answer back from ACS on an email I sent. Because there is so much backlash going on, we may have won this battle for the time being. Wonder what the next thing will be?

If this health care "reform" passes and we have big brother making the decisions for us and our doctors we can kiss mammorgrams goodbye, Neulasta goodbye (does anyone remember the girl from Canada that posted a few days ago wondering why only American's talk about Nuelasta? I am assuming the Canada health care doesn't cover it.) My onc is outragaed. My opinion is Mammorgrams should be offered by age 18. I am astounded after reading these boards at the number of women in their 20's and 30's with bc. And no self breast exams? I found my lump myself.

We must bombard our government about this. My onc told me that in Canada they only do a one view Mammorgram not a two view. I live on the St. Clair river in Michigan and can see Canada across the river (it's really cool and we love going to Canada, it's a wonderful country) but you wouldn't believe the number of women who come across the border to get Mammogams here because they are not eligible for them in their own country.

We do not want government run health care, I'm just glad I am going thru treatment now where all of these life saving drugs are available to me. And all the comfort drugs for each chemo treament. I am really scared about this.

Hugs, Judy :-(

I'm more concerned about lobbyists controling the politicians. And corrupt politicians. Healthcare needs to be taken away from insurance companies control. I wouldn't even have any if it weren't for my state has a high risk pool. Private companies won't touch me. It's expensive tho and I have a high deductable. Who is putting out all the scary info? Probably those who have the most to lose if government is controling how much health care costs. I know people from Canada and they love their health system. My only concern is the lobbyists and drug companies putting their own spin on reform.

People I know who have insurance thru their companies is being affected now by companies shifting more costs to the employees. This is happening now.

Less cervical cancer screening? I sure hope they are going to use some of the money they are saving on women's lives to fund studies on how to get men pregnant.

Now that gets my vote. Can you imagine a man having morning sickness? Probably wouldn't get out of bed for the whole 9 months. But he would only have 1 baby and that would be the end of civilization after a few years. Nah, won't happen. For the time being men are the majority when it comes to making decisions that affect women's health but I truly believe that we can make our voice heard loud and clear ever time some idiot comes up with anew study or try to take funding away. BC Research needs to continue and increase more as more women get this terrible disease. Its our lives gals, and its worth fighting for.

will be be reduced. Unfortunately, both Privet Insurance companies and Government will use these new recommendations to deny coverage. I hear on NPR that American Cancer Society agreed with recommendations for cervical cancer.
I do not have information if they agree about breast cancer as well.
These government recommendations also said that monthly self-examination is not required either.
I still believe we need to speak up