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Old 11-17-2009, 02:01 PM   #1
StephN
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New mammo guides - more pushback

I was hoping that this "news" would not be swallowed hook, line and sinker by ALL the breast cancer treatment and advocacy groups. Thankfully some others are coming out today with their views that there are major flaws and could border on political plotting, costing many young lives.


Komen is one.

Seattle Cancer Care Alliance is another joining MD Anderson in balking against the latest guides published yesterday. They are holding with a major national cancer organization's current recommendations, which vary slightly from the NCI's.


I hope these major disagreements will help keep insurance coverage for the screenings that younger women need. Next, I hope that the government panel that committed this idiocy will back peddle and perform another study without the eye on the dollar and refocused on real patients and their needs, and will include cancer professionals on the panel, AND a peer review before release.


Keep up the outcry!!

Seattle Cancer Care Alliance Radiology Director Responds To New Mammography Screening Recommendations

Article Date: 17 Nov 2009 - 9:00 PST

www.SeattleCCA.org

Following is a statement by Constance Lehman, M.D., PhD, medical director of radiology and director of breast imaging, Seattle Cancer Care Alliance; and professor and vice chair of radiology, University of Washington School of Medicine. The statement is in response to new breast cancer mammography screening guideline recommendations announced today by the U.S. Preventive Services Task Force. Among others, the task force said that screening mammography should not be done routinely for women age 40 to 49 years, that mammography should be performed every two years rather than every year for women ages 50-74 and that women should not be routinely screened after age 75.

"Women need a clear message: early detection offers a woman the best chance for a cure, and mammography is essential for early detection of breast cancer.

The Seattle Cancer Care Alliance continues to support annual screening mammograms for women beginning at age 40 as does the American Cancer Society. In fact, according to the ACS, 17 percent of breast cancer deaths in 2006 were among women who were diagnosed between ages 40 and 49.

"We know that digital mammography significantly improves the detection of cancer in young women and in women with dense breast tissue. These well-documented facts are not included in the analyses that led to the change in recommendations. It is important that women receive their mammograms at centers with the ability to provide high quality exams and that all women understand the importance of mammography for the early detection of breast cancer.

"Failing to identify those women in their 40s with cancer and having them wait until they are screened at age 50 is a disservice. By then breast cancer can be advanced and more difficult to treat."

Following are the American Cancer Society's breast cancer screening guidelines:

- Yearly mammograms are recommended starting at age 40 and continuing for as long as a woman is in good health.

- Clinical breast exam (CBE) should be part of a periodic health exam, about every three years for women in their 20s and 30s and every year for women 40 and over.

- Women should know how their breasts normally feel and report any breast change promptly to their health care providers. Breast self-exam (BSE) is an option for women starting in their 20s.

- Women at high risk (greater than 20 percent lifetime risk) should get an MRI and a mammogram every year. Women at moderately increased risk (15 percent to 20 percent lifetime risk) should talk with their doctors about the benefits and limitations of adding MRI screening to their yearly mammogram. Yearly MRI screening is not recommended for women whose lifetime risk of breast cancer is less than 15 percent.

Source
Seattle Cancer Care Alliance
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.

Last edited by StephN; 11-17-2009 at 02:17 PM..
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Old 11-17-2009, 04:19 PM   #2
suzan w
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Re: New mammo guides - more pushback

Glad to hear that SOMEONE is making noise about the idiocy of this report. Talk about a giant step backwards...there must be something we can all do/sign/protest/scream loud to voice our feelings about this most critical matter.
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 11-17-2009, 10:44 PM   #3
Joan M
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Re: New mammo guides - more pushback

Unfortunately, the new guidelines for reducing the number of mammograms performed for women ages 40-49 have found an ear in the age of medical/Medicare reform and cost cutting.

Here's a news story about the new guidelines.

16 Nov 2009

New U.S. guidelines: routine mammograms start at 5o

By Julie Steenhuysen

CHICAGO (Reuters) - Sweeping new U.S. breast cancer guidelines released on Monday recommend against routine mammograms for women in their 40s, but several groups immediately rebelled against the recommendations.
The new guidelines by the U.S. Preventive Services Task Force, an influential panel of independent experts, would sharply curtail the number of breast mammograms done in the United States, sparing women the worry of false alarms and the cost and trouble of extra tests.

U.S. cancer experts argued the altered schedule may mean more women will die from breast cancer.

The guidelines, published in the Annals of Internal Medicine, are based largely on computer projections from six independent research groups in the United States and Europe.

They predicted that screening women 50 to 69 every other year will catch nearly as many breast cancers -- 81 percent -- while producing half as many false positive results.

"Although the USPSTF recognizes that the benefit of screening seems equivalent for women aged 40 to 49 years and 50 to 59 years, the incidence of breast cancer and the consequences differ," the task force, sponsored by the U.S. Agency for Healthcare Research and Quality, wrote.

The group's last recommendations in 2002 called for routine mammograms every one to two years for all women older than 40.

Now, they recommend no routine screening for women in their 40s, and instead suggest these women decide for themselves when to start after weighing the risks and benefits.

"This is not a recommendation against mammography for women in their 40s," said Dr. Diana Petitti, professor of biomedical informatics at Arizona State University in Phoenix, who spoke on behalf of the task force.

LETTING CANCER LIE
The panel said there is not enough evidence to say women over 74 benefit from mammograms because at that age, screening may be detecting cancers that will not ever kill a woman.

The guidelines also say there is not enough evidence to prove that women benefit from breast self-examinations, or even if they help if doctors do them.

Dr. Daniel Kopans, professor of radiology at Harvard Medical School in Massachusetts, said the new guidelines "are scientifically unjustified and will condemn women ages 40 to 49 to unnecessary deaths from breast cancer."

"If you look at their guidelines, they are saying, 'Don't examine yourself, don't let anyone else examine you, and don't get a mammogram.' Where does that leave you? It leaves you waiting to have a big cancer that you can't ignore any more," Kopans said in a telephone interview.

The American Cancer Society and the American College of Obstetricians and Gynecologists said they will not be changing their guidelines.

"The American Cancer Society will continue to recommend that women of average risk of breast cancer start screening at age 40 and get screened every year," Dr. Len Lichtenfeld, the group's deputy chief medical officer, said in a telephone interview.

Dr. Carol Lee, chair of the American College of Radiology Breast Imaging Commission, said the recommendations "ignore the valid scientific data and place a great many women at risk of dying unnecessarily."

Lee and Lichtenfeld said they fear insurers -- both private and public -- will use them to pare back health costs.

"These new recommendations seem to reflect a conscious decision to ration care," Lee said, although Petitti said cost was not a factor in their decision-making.

The National Cancer Institute, which funded the modeling study, said women of average risk need to discuss the risks and benefits of mammograms with their doctors.

"NCI has had screening mammography recommendations for many years, and we need to evaluate them in light of the Task Force's recommendations -- for all women, not only for those of average risk. It's too early for us to make any decisions right now," the federal agency said in a statement.

Breast cancer is the top cancer killer of women globally, killing 500,000 annually.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 11-17-2009, 11:08 PM   #4
Catherine
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Re: New mammo guides - more pushback

I am pretty appalled by the news that has come out. I am happy to see there is some push back. Below is what I copied and pasted from Dr. Susan Love's site. Most people on her blog totally disagree with Dr. Love's agreement with the new study. Below is one of those who disagree with Dr. Love and the Study.

My wife was 25 when she felt a lump during a self-examination. Her doctor told her she was too young and not to worry about it. So my wife, trusting her doctor, let her tumor grow for over a year until a different doctor insisted on testing it.
She’s now 30 and Stage IV. Thanks to people like you, Susan, more young women are going to find themselves in this situation.
And for those of you who say anecdotal family stories aren’t relevant – go jump in a lake. My wife is not irrelevant and neither are any of the other younger breast cancer survivors whether you want to believe they exist or not.
I wonder how much the Insurance Industry is paying Dr. Love for her endorsement.
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 11-18-2009, 11:14 AM   #5
Rich66
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Re: New mammo guides - more pushback

With ever-earlier puberty and aggressive cancers being more likely in younger patients, seems the issue ought to be getting a screening regimen better and less expensive than mammo. If this ration path is adopted, maybe boutique imaging centers will become more common. There's one in Milwaukee that aims to make CTs less expensive and more accessible.
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Old 11-18-2009, 12:16 PM   #6
StephN
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Re: New mammo guides - more pushback

Dr. Sanjay Gupta on CNN this morning.
Had an interview with a female member of that "panel".

She is said to be a head nurse someplace and was very inarticulate and slow to answer his tough, tough questions. She admitted that they were making the recs based on statistics. He bristled and I could see him wanted to shout that "people are more than statistics!"

He was ramming at her with the question of the tradeoff of a "small percentage" of lives the would not be saved versus the money saved going elsewhere in the medical or research fields. He got her to say that she was NOT saying those few lives are not worth being saved. But she could not answer with any ease on that, because she knew she was shooting down the reasoning she had just stated as to why to cut backon the screenings.

He also jabbed at her on the idea being put forth that fewer mammos will result in fewer false positives and less anxiety for the women being double checked. She did not have a good answer when he turned the statement around saying the peace of mind gained and the vigilance to a suspicious area might be worth more to the women involved. Such as their lives?

The representative of the panel did not come off well. HA! I was gleeful!
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 11-18-2009, 12:24 PM   #7
StephN
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Re: New mammo guides - more pushback

Rich -
Does insurance cover CTs at these private clinics? I can't see most families sending their young daughters for such a test if they must pay for it. In a case in my family, it would mean not paying for music lessons, going to camp, or money for college. Young girls/women don't have their health as a priority!

My mom had a "whole body" scan at one of these and paid $800. It was a solicitation by mail. I had to bite my tongue on that one, as she did not ask any questions beforehand and went rather blindly into this.

She still does get her mammogram at age 84.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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