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Old 11-22-2009, 07:57 PM   #1
Margerie
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Members of the Task Force

I looked it up here
Members of the Task Force***

Members of the U.S. Preventive Services Task Force are Alfred O. Berg, M.D., M.P.H., Chair, USPSTF (Professor and Chair, Department of Family Medicine, University of Washington, Seattle, WA); Janet D. Allan, Ph.D., R.N., C.S., Vice-chair, USPSTF (Dean and Professor, School of Nursing, University of Texas Health Science Center, San Antonio, TX); Paul S. Frame, M.D. (Tri-County Family Medicine, Cohocton, NY, and Clinical Professor of Family Medicine, University of Rochester, Rochester, NY); Charles J. Homer, M.D., M.P.H. (Executive Director, National Initiative for Children's Healthcare Quality, Boston, MA); Mark S. Johnson, M.D., M.P.H. (Associate Professor of Clinical Family Medicine and Chairman Department of Family Medicine, University of Medicine and Dentistry of New Jersey-New Jersey Medical School, Newark, NJ); Jonathan D. Klein, M.D., M.P.H. (Associate Professor of Pediatrics and of Community and Preventive Medicine, University of Rochester School of Medicine, Rochester, NY), Tracy A. Lieu, M.D., M.P.H. (Associate Professor, Department of Ambulatory Care and Prevention, Harvard Pilgrim Health Care and Harvard Medical School, Boston, MA); Cynthia D. Mulrow, M.D., M.Sc. (Professor of Medicine, University of Texas Health Science Center, Audie L. Murphy Memorial Veterans Hospital, San Antonio, TX); C. Tracy Orleans, Ph.D. (Senior Scientist, The Robert Wood Johnson Foundation, Princeton, NJ); Jeffrey F. Peipert, M.D., M.P.H (Director of Research, Women and Infants' Hospital, Providence, RI); Nola J. Pender, Ph.D., R.N. (Professor and Associate Dean for Research, School of Nursing, University of Michigan, Ann Arbor, MI); Albert L. Siu, M.D., M.S.P.H (Professor of Medicine, Chief of Division of General Internal Medicine, and Medical Director of the Primary Care and Medical Services Care Center, Mount Sinai School of Medicine and The Mount Sinai Medical Center, New York, NY); Steven M. Teutsch, M.D., M.P.H. (Senior Director, Outcomes Research and Management, Merck & Company, Inc., West Point, PA); Carolyn Westhoff, M.D., M.Sc. (Associate Professor of Obstetrics, Gynecology and Public Health, Department of Obstetrics and Gynecology, Columbia University College of Physicians and Surgeons, New York, NY); and Steven H. Woolf, M.D., M.P.H. (Professor of Family Medicine, Department of Family Practice, Virginia Commonwealth University, Richmond, VA).

If anyone is keeping score that is:

oncologist- 0
radiologists- 0
breast cancer surgeons- 0
breast cancer specialist of any kind- 0
anyone that has treated cancer (any cancer) -0

family medicine physicians- 4
pediatricians- 2
ob/gyns- 2
internal medicine physicians- 2
geriatrics- 1
epidemiologists- 1
primary care physicians- 1
nurse practicioner (psychiatry)- 1
nurse practioner (family medicine)- 1
PhD researcher (focus is tobacco use) - 1
************************************************** ********************************
Sorry folks this report card and task force listed above is for the 2002 panel. The current panel is in my correction post below and the rest of this post is a review of the CURRENT panel members, the list above was mistakenly copied from the 2002 panel. Don't worry yourselves, LOL, the current panel scorecard is almost exactly the same. 0 breast cancer, oncology, radiology, you get the idea and sorry for the interruption.......
************************************************** *********************************

I always say if something stinks, check your shoe. What stinkbomb I found is that numerous members of this 16-member panel are currently or have been directly involved with the HMO or health care industry.

This information came directly from USPSTF

Dr. George Isham, MD is the Chief Health Officer for a major health care provider, Health Partners. "Dr. Isham is responsible for quality, utilization management, health promotion and disease management, research, and health professionals' education at HealthPartners. He is active in strategic planning and policy issues. He is an experienced primary care clinician and was chair of the Institute of Medicine committee that produced the report, Priority Areas for National Action: Transforming Health Care Quality." (quote from the Health Partners website)

J. Sanford Schwartz, MD, is the past executive director of the Leonard Davis Institute of Health Economics at the University of Pennsylvania. He's also on the Blue Cross and Blue Shield Medical Advisory Panel. He was also formerly the Editor of the American Journal of Managed Care

Diana B. Petitti, MD (the Vice Chair of this panel who said that these recommendation would have no effect on health insurance coverage) was a Senior Scientific Advisor for Health Policy and Medicine at Kaiser Permanente of Southern CA.

Joy Melnikow, M.D is a contributing member of the California Health Benefits Program Task Force for the University of California's Office of the President and associate medical director of Healthwise, Inc.



Hmmmmm... I know I am not open-minded nor devoid of paranoia, but if you were to assemble a health care/action committee to review and possibly revise breast cancer screening guidelines for the good citizens of the U.S.A., would you not want SOMEONE on this panel that has treated a breast cancer patient? Would you consult any of these people if you had, or suspected you had breast cancer?? Is it not a conflict of interest, or at least VERY bad taste, to have the health care industry represented (by some means) by at least 25% of this panel and breast cancer specialists make up 0%? And we are supposed to believe there is no motivation here except to better the health of American women overall?


I think this smells like &$#@! (and I am not ranting, just presenting information to share, OK a minor rant at the end here, please forgive my hysteria)
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Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07

Last edited by Margerie; 11-23-2009 at 08:16 AM..
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Old 11-22-2009, 08:35 PM   #2
Laurel
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Re: Members of the Task Force

Very, very interesting, Margerie. Thanks for the detective work and you have presented us all with some information to chew on. Well done.
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 11-22-2009, 08:38 PM   #3
alicem
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Re: Members of the Task Force

Thanks for all your hard work in researching this. Very interesting indeed!!
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9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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Old 11-22-2009, 08:46 PM   #4
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Wink Re: Members of the Task Force

Thanks for doing all the research !!
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12 years and counting
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Lucky 13 !! I hope so !!!!!!
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Old 11-22-2009, 09:00 PM   #5
Margerie
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Re: Members of the Task Force

I can take no credit for research, it was all in plain sight on the USPSTF site. But getting all the links in and not have the page timeout was stressful, and the reason I had to edit.
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Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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Old 11-22-2009, 09:56 PM   #6
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Re: Members of the Task Force

FANTASTIC work Margerie! Well done. I need to take it all in, but it definitely reveals a deeper truth, no?
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 11-23-2009, 08:07 AM   #7
Margerie
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Re: Members of the Task Force

I must apologize for screwing up the top part of my original post (too much copy, pasting and linking) Believe it or not, but the government's website can be confusing. The LIST at the top was actually the 2002 task force. Everything below the scorecard IS the current panel member's bio information.

The Current 2009 Members of the Task Force

Bruce Nedrow (Ned) Calonge, M.D., M.P.H. (Chair)- Associate Professor of Family Medicine and of Preventive Medicine and Biometrics at the University of Colorado Health Sciences Center

Diana B. Petitti, M.D., M.P.H. (Vice Chair)- Professor of Biomedical Informatics at the Fulton School of Engineering, at Arizona State University

Susan Curry, Ph.D- dean of the College of Public Health and distinguished professor of health management and policy at the University of Iowa

Allen J. Dietrich, M.D.- board-certified family physician, is a professor of community and family medicine at Dartmouth Medical School

Thomas G. DeWitt, M.D.- Professor of Pediatrics

Kimberly D. Gregory, M.D., M.P.H.- Director of Maternal-Fetal Medicine and Director of Women's Health Services Research at Cedars-Sinai Medical Center, Los Angeles, CA

David Grossman, M.D., M.P.H.- board-certified pediatrician

George Isham, M.D., M.S.- Medical Director and Chief Health Officer for HealthPartners, a large health care organization in Minnesota

Michael L. LeFevre, M.D., M.S.P.H.- Professor in the Department of Family and Community Medicine at the University of Missouri School of Medicine

Rosanne Leipzig, M.D., Ph.D.- board-certified internist and geriatrician


Lucy N. Marion, Ph.D., R.N.- family medicine/psychiatric nurse practioner


Joy Melnikow, M.D., M.P.H.- professor in the Department of Family and Community Medicine and associate director of the Center for Healthcare Policy and Research at the University of California Davis. She is currently a deputy editor of Medical Care, standing member of the health services organization and delivery study section at the National Institutes of Health


Bernadette Melnyk, Ph.D., R.N., C.P.N.P/N.P.P.- pediatric and psychiatric nurse practioner


Wanda Nicholson, M.D., M.P.H., M.B.A.- board-certified obstetrician-gynecologist and a perinatal epidemiologist

J. Sanford (Sandy) Schwartz, M.D.- board-certified internal medicine specialist

Timothy Wilt, M.D., M.P.H.- board-certified internal medicine specialist

and folks this score card is not much different:

family medicine- 5
biomed informatics- 1
health management and policy (PhD)- 1
pediatrics- 2
ob/gyns- 2
internal medicine- 3
nurse pracitioners (family medicine/psychiatry/peds)- 2

but most importantly (IMHO) the score is STILL:

oncologists- 0
radiologists- 0
breast cancer surgeons/specialsists- 0

sorry for the inconvenience, I will make a note at my original post to hopefully prevent the whiplash

also the quote in my original bio of Dr. Isham was from the USPSTF site itself and not his health care organization's website
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Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07

Last edited by Margerie; 11-23-2009 at 08:50 AM..
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Old 11-23-2009, 09:58 AM   #8
Debbie L.
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Re: Members of the Task Force

Margerie and all,

It's not an accident that the task force does not include oncologists and radiation oncologists. The task force's job was to provide
an unbiased review of the evidence, which is best done by those who have expertise in epidemiology but not in the field being reviewed. They want people evaluting the evidence with open minds, not people who already think they know the answer. IOW, they didn't just sit down and say "well, what do YOU think?". They evaluated the evidence from many different perspectives (directly, and with various computer modeling strategies). First, they evaluate the quality of the studies that are available, and then they use the good quality studies to put together the guidelines. The evidence itself was amassed by breast cancer experts. Does that make sense?

And btw, I'm not sure it's been mentioned here - but the guidelines that they came up with are essentially the same guidelines that are used in Europe and Canada.

I don't know if anyone has access to "The Cancer Letter" but I heard that this question about the panel's composition is nicely addressed there.

Debbie Laxague

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Old 11-23-2009, 10:37 AM   #9
Laurel
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Re: Members of the Task Force

Why would we wish to be Canada and Europe, especially the U.K.?
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 11-23-2009, 12:21 PM   #10
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Thumbs up Re: Members of the Task Force

excellent point, laurel. -valerie
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8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 11-23-2009, 12:52 PM   #11
Margerie
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Re: Members of the Task Force

Well, call me naive, but if at least one-quarter of the panel have been directly involved in the business of healthcare (as in paying for screening tests), this is NOT an UNBIASED panel. If they had consulted an actual breast cancer radiologists they would have discovered:
  • The analysis was based on older mammography techniques, meaning the researchers mostly looked at results from film mammograms instead of digital mammograms.
  • The analysis was based on some inaccurate assumptions about optimal treatment after breast cancer is diagnosed. For example, it assumed that women diagnosed with hormone-receptor-positive, early-stage breast cancer would receive and benefit from hormonal therapy but not chemotherapy, even though we know that many of these women do receive and benefit from chemotherapy after surgery. Inaccurate assumptions like this may have caused the researchers to underestimate the number of lives that would be lost should the proposed changes in screening be adopted.
  • The analysis did not adequately consider the combined benefit of early detection (with current screening guidelines) and new treatments that have resulted in steadily improving survival rates in recent years. Screening cannot be looked at in isolation as a snapshot. Screening happens as we continue to improve both diagnosis and treatment. But we can’t treat what isn’t diagnosed.
  • The proposed guideline changes would mean that many breast cancers would be diagnosed at a later stage, making it harder to become cancer-free. Later-stage diagnoses result in more women with metastatic disease (that has spread to other parts of the body) and more women with large or multiple cancers requiring mastectomy (too late for breast-conserving treatments).
  • The proposed guideline changes would mean that younger women would be diagnosed later. Breast cancer in younger women tends to be more aggressive, so early diagnosis and treatment is more critical for them. It is the lives and futures of younger women that would be lost if the proposed changes are adopted.
Expressed as nameless, faceless numbers, the 3% decrease in breast cancer survival might seem like an acceptable trade-off when compared to the economic benefits of changing breast cancer screening policies. But breast cancer affects a very large number of women, so 3% of that number is not insignificant. The reality is that more women -- mothers, daughters, sisters, grandmothers, and aunts -- will die each year from breast cancer, which is neither reasonable nor acceptable.


The above information came from three renowned breast radiation oncologists. You know, the people who treat breast cancer.

I don't see how anyone can say this was an unbiased panel.
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Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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Old 11-23-2009, 01:39 PM   #12
StephN
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Re: Members of the Task Force

Here is the list of other health issues this panel is working on. I don't know if the members change or how often, but they are just numbers crunchers, and I wish I knew who feeds them the data that they use to crunch on. This so-called "expert" panel can't know what is involved in treating all these conditions!

You Are Here: AHRQ Home > Clinical Information > U.S. Preventive Services Task Force > Topics in Progress

U.S. Preventive Services Task Force

Topics in Progress

These topics are being reviewed by the U.S. Preventive Services Task Force:

- Aspirin Use to Prevent Preeclampsia
- Cervical Cancer Screening
- Depression in Adults
- Falls in Older Adults
- Hearing Impairment, Older Adults
- Oral Cancer Screening
- Osteoporosis Screening
- Osteoporosis Preventive Medicine
- Ovarian Cancer
- Skin Cancer Counseling
- Vitamin Supplements to Prevent Cancer and CHD

Current as of November 2009
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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 11-23-2009, 01:55 PM   #13
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Re: Members of the Task Force

Thank you for this list and the breakdown of participants in the panel.

Excluding members with actual experience in the trenches seems like the Ivory Tower mentality to me. I mean look behind the curtain of numbers and excel spreadsheets and there is always another story to be told. God help us if accounting practices are going to rule the world and we chose to ignore the folks with boots on the ground. Certainly both perspectives should be considered before making such a broad recommendation with such heavy consequences.

I wondered why they didn't consider looking at the African American population of breast cancer patients. I met some advocates who work in the African American population at a recent conference and I learned that a large number of African American Women are diagnosed at Stage III. According to the advocacy groups this population is largely lacking in access and information and as a result they are routinely diagnosed at Stage III. Also, due to a lack of coverage they are more likely to ignore a lump afraid of the financial implications of having breast cancer and being under insured or uninsured. They also die of the disease at a much higher rate. Why not consider the results of this group of women who are already not getting mamos or doing self exams.

How can it be that there isn't on patient or patient advocate on the panel? Breast Cancer is a quite unique disease where personalized medicine has come so far. Unfortunately this fact is known by few outside of the Breast Cancer specialty world. I have heard that in some Countries a person with advanced breast cancer is only allowed two lines of chemo because it is considered to be useless after that. I am on my 14th line on therapy and so far… still responding – working full time and taking care of my son.

I must hope and pray that all of these efforts are well intended but I am also mindful that unintended consequences can result in a lack of access for me because of a lack of knowledge from a panel of “experts”.

Last edited by Carolyns; 11-23-2009 at 02:04 PM..
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Old 11-23-2009, 06:18 PM   #14
Sandra in GA
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Re: Members of the Task Force

Margerie and Carolyn,
Thanks to both of you. You have posted some very important information and deductions. I feel we all have to keep our eyes, ears and minds open when faced with new information. I personally feel that there should have been oncologists, breast surgeons, and oncology radiologists on the panel. I learned from one of my professors when I was in graduate school to become wary of researchers, they are biased by design and can find evidence to prove what they set out to prove. I know that a report that included a more balanced panel whould have had more validity.
Sandra
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Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 11-23-2009, 08:40 PM   #15
hutchibk
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Re: Members of the Task Force

All I can say is WOW, Margerie. Thank you. Thanks all. This is amazing deductive detective work, and I appreciate it...
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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