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11-17-2009, 07:18 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Dr. Love on "NEW" Mammogram guidelines
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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11-17-2009, 12:19 PM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Dr. Love on "NEW" Mammogram guidelines
Thanks, Rhonda. Dr. Love was all over the news yesterday.
There are numerous responses to her blog from outraged women who are mostly under age 50. They are appalled and disappointed that she seems to be advocating for finding a cure and developing better screening techniques, but leaving women with no safety net in the meantime.
I can't understand what she is thinking when at least 25% of breast cancers are HER2positive and mostly fast moving. Waiting is not an option for those like us here!
__________________
"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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11-17-2009, 01:18 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 823
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Re: Dr. Love on "NEW" Mammogram guidelines
I have never been impressed with Dr. Susan Love. Wasn't either when I saw her on the new's last night. I agree with Steph, what the heck is she thinking???
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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11-17-2009, 01:21 PM
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#4
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Dr. Love on "NEW" Mammogram guidelines
I was walking on my treadmill this morning when I heard the news on the new mammogram guidelines....I was getting so ticked off that I was running on the treadmill by the end of the report. What are they thinking???? Obviously, they are NOT.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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11-17-2009, 04:26 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Dr. Love on "NEW" Mammogram guidelines
I am going to "unjoin" Susan Love's army or whatever it was I joined when my friend ws diagnosed with cancer back in 1997...my friend Joanna had not had her first mammogram yet when she discovered a huge mass under her arm. It was biopsied (do not know if it was Her2+ but I suspect it was). She had major surgery, chemo, radiation and within a year it had spread to her bones, then her ovaries, and finally her brain. She died in 1999. I always wondered if her outcome would have been different if she had a mammo...then in 2005 when I was first diagnosed Susan Love's website was the first place I went...
this is very frustrating
__________________
 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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11-17-2009, 05:15 PM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Dr. Love on "NEW" Mammogram guidelines
IMO, this is a forewarning of rationing ploys. Task Force recommendations will be sold as scientific and medically sound, people in the general public will buy into it, and before you know it, it will suddenly become a denied service...
__________________
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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11-17-2009, 06:36 PM
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#7
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Guest
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Re: Dr. Love on "NEW" Mammogram guidelines
A key reminder: this recommendation is for screening mammograms. Mammograms are still needed at almost any age if a lump is found. The recommendation also does not apply to all screening mammograms, only those for the average woman. Women at especially high risk may want to start mammograms at age 40 or even earlier.
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11-17-2009, 07:09 PM
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#8
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: Dr. Love on "NEW" Mammogram guidelines
How do you know if your high risk when the majority of women with bc don't have a family history? I didn't but I had bc at age 37.
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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11-17-2009, 07:15 PM
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#9
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Dr. Love on "NEW" Mammogram guidelines
Ladies,
You know how we always say men think with their penises? Well, governments think with their wallets. It is no more complicated than that.
I think Dr. Love is a qualified idiot. BTW, if this is the standard in Europe and it is to be hailed and lauded, why do we in the States have better survival rates?
__________________
Smile On!
Laurel
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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11-17-2009, 07:18 PM
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#10
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Senior Member
Join Date: Mar 2008
Posts: 141
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Re: Dr. Love on "NEW" Mammogram guidelines
Dear unregistered-
Many young women who are diagnosed with breast cancer don't fall into the high risk factors. Through the many breast cancer forums and in person I have me many young women with no risk factors and they still ended up with breast cancer. I too had no risk factors since I have absolutely no breast cancer in my family. There are many girls in my family and I am the youngest of 6 girls. I did everything right; not overweight, had my 1st child b/4 the age of 30 and nursed all 3 of my children, exercised daily, ate healthy, avoided chemicals, no drinking, no smoking etc. I had no lump but ended up with breast cancer at the age of 38. After I stopped nursing my 8 month old I felt a thickening that only I felt and initially my doctors dismissed due to there being no family history of breast cancer. Due to my persistence, I finally got a mammogram. The radiologist who read my mammogram told me that it was a digital mammogram that saved my life. With my breasts being so dense, the mirco calcifications probably would not been visible on a traditional mammogram.
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11-17-2009, 07:19 PM
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#11
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Senior Member
Join Date: Mar 2008
Posts: 141
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Re: Dr. Love on "NEW" Mammogram guidelines
Laurel-
I agree with you 100+%.
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11-17-2009, 07:46 PM
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#12
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: Dr. Love on "NEW" Mammogram guidelines
I wanted to throw something at the TV. And, then I see Susan Love advocating this change. If I had followed these guidelines I would not be here. Not high risk and no family history. Then I hear they are saying self exams are not beneficial. It made me so angry!
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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11-17-2009, 07:51 PM
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#13
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Senior Member
Join Date: Oct 2005
Posts: 476
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Re: Dr. Love on "NEW" Mammogram guidelines
If we drop the early mammogram and rely on palpability as a clue for getting a mammogram, many of us here would not be survivors. Small lesions are mostly not palpable, but they grow to become life-threatening. I am appaled by Susan Love's political submission to left wing activists who care not about us but to cater to the popular slogan of socialism.
__________________
Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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11-17-2009, 08:46 PM
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#14
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Dr. Love on "NEW" Mammogram guidelines
It seems Dr.Love is not one of our favorite people. I never considered her to be more knowledgeable than other breast cancer specialists. I know plenty of young women diagnosed with breast cancer. Some of them were even under 40 !!!!!!!!!!
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11-17-2009, 09:59 PM
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#15
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Senior Member
Join Date: Sep 2005
Posts: 161
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Re: Dr. Love on "NEW" Mammogram guidelines
I emailed today and asked that they remove me from their "Army".
__________________
Diag. Oct. 2004 age 54 left breast
Stage 1 grade 3; 6mm IDC; unknown amount of DCIS
with comedo necrosis; node neg.
Nottingham Grade 7/9
ER 91% PR 62%; Her2 3.6 by ICH; KI-67 35%
Nov 2004 Lumpectomy; SNB failed so had
full axillary clearance;
Dec 2004 2nd lumpy for clean DCIS margins.
Jan/Feb 2005 4 A/C dose dense;
33 rads finished 6/2005;
Began 5 years Arimidex in 6/2005
No Herceptin
9/2007 Quit Arimidex due to severe side effects.
NED
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11-17-2009, 10:15 PM
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#16
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Senior Member
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
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Re: Dr. Love on "NEW" Mammogram guidelines
In some of the materials I received from Mayo when I was first diagnosed, I learned that 85% of women diagnosed with breast cancer HAVE NO FAMILY HISTORY that would put them in the "high risk" group. I have NO history and lots of aunts and girl cousins and I am the first! This statistic is not well known. I have been trying to spread the word for ALL women to do self breast exams and yearly mammograms. If you don't have family history, since this is so highly stressed, it is very easy to feel that you are safe when the reality is the opposite.
__________________
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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11-17-2009, 10:35 PM
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#17
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Senior Member
Join Date: Jan 2006
Posts: 42
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Re: Dr. Love on "NEW" Mammogram guidelines
I would be a very sick woman had I not been able to have a mamogram at the age of 44.I don't have cancer in my family and the mamo found my 1.3 cm tumor and it was her2+
that was 6 yrs ago and I am still here so I thank god for mamograms every day. This has to be stopped we need screening and if this is the only test it's better than nothing.Or maybe they want us to die.
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11-17-2009, 11:26 PM
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#18
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Re: Dr. Love on "NEW" Mammogram guidelines
I am appalled at Dr. Love. I am going to "her" army site and unjoining right now. Now we know that her army was all about helping her to continue to be the Breast Guru. Besides fighting cancer we have to fight "experts" and popular gurus like Susan Love. Go to the blog and see how many people like us disagreed with the self-appointed breast expert.
This study and what it will do to younger women makes me angry.
Catherine
__________________
Catherine
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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