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Old 07-17-2008, 10:00 AM   #1
Jean
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Breast self exams????? food for thought...

I am linking this article here as I feel it opens up food for thought....and am interested in what my sister's think.

I have felt for a long time that breast self exams may not offer the protection that maybe women feel or may believe are worth the while. What is of great concern to me is the younger generation of women (40 and under)
who are not encouraged to have regular mammograms check ups. In that age group, they maybe under the belief that they are doing due diligence by self exam along with their dr. check ups. But let's face it many younger gals in their 20's are not having regular dr. visits let alone mammograms. It has bothered me that the younger group of women are in a libo type of medical enviroment for their breast health.

The older group (over 40 and up) are instructed to have yrly breast exams. I even question if insurance will pay for mammograms for the younger group of women?

I wonder just when will the medical community become
serious about those younger gals and do much more
to encourage that they receive the very best in
breast health protection.

It is my belief that women should begin at a earlier age to begin regular mammograms. But, yet as of today we hear nothing about this very important health issue!

Okay - love to hear your 2 cents worth.

http://www.medicalnewstoday.com/articles/115116.php
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006

Last edited by Jean; 07-17-2008 at 10:31 AM..
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Old 07-17-2008, 10:54 AM   #2
Jackie07
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I remember reading something about the scans for younger women are not accurate because of their dense tissues. And MRIs will be too expensive with too many falsy positives.

I agree there needs to be better education for younger women about their breast self-exams. I wonder if teachers do talk about breast cancer and breast exam in their sex education classes. Making babies too early might make their lives miserable. But getting cancer too early could make their lives impossible. Wonder what the government is thinking? Course, as the presidential campaign analysist always says, "it's the 'economy', stupid!"

Do you think we can start a campaign about the issue?
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

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Old 07-17-2008, 11:10 AM   #3
mts
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Prevention and early detection is the only 'cure'.

It did not take long for the medical community to emphasize/ recommend getting mammos at 40. And less women have died of bc because of those recommendations... I think, since technology has improved from the days of mammo only detection, it is wise to get the word out on earlier screenings... Mammos still have a high rate of return in the doc's office --they are the work horse of bc detection. I don't think insurance companies will ever budge on suggesting MRI for younger women.
I was told my daughter would need to begin her screening 10 years before the age of my own diagnosis. She will start at 30. The MRI "fund" will be there for her becasue I doubt the insurance company will.

Maria
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Old 07-17-2008, 12:17 PM   #4
RhondaH
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All I know is that "my cancer"...

wasn't even felt by my surgeon it was so deep so what good would a breast self exam done me?
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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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Old 07-17-2008, 12:19 PM   #5
Jean
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I would check into the Dilon test.
I had this performed in Nov. '07

It is as good/and/even out performes MRI.
Also:
1. It cost a little bit more than a digital mammogram.
I paid $500 in a major NY hospital for the test.

2. You have the results on the spot, I did not even
finish dressing and I had the results.

3. Painless and quiet - you sit in a chair and it is less
pressure than a mammogram.

Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 07-17-2008, 03:40 PM   #6
dhealey
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I on the other hand had a normal mammogram July 2006 and just 3 months later found the rather large lump in my breast. I am more a component for self breast exams. My daughter who is 35, was advised by my onc to start yearly mammograms now. Her GYN didn't feel this was necessary even with the strong family history we have . I had her come to North Carolina and the Doc. I work for ordered her mammogram. I will do this every year for her if necessary.
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Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
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Old 07-17-2008, 03:49 PM   #7
Mary Jo
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If it wasn't for my breast self exam I'm not sure where I'd be..........

I found my lump. Shrugged it off as scar tissue where I had a lumpectomy years prior. When it was time for my annual mammogram about 2 or 3 months later I wasn't going to mention the lump to the tech. because I thought if there was anything their they would let me know...why open a can of worms...ya know? Well thankfully common sense got the best of me (or God) and I thought I should mention it to the tech. so she could let the radiologist know. After 2 mammograms of that area they said "nope, nothing their." BUT because it was felt they said I should have an ultrasound to make sure. Well, there it was.............................

Five weeks later I had a 4 cm tumor removed that was NOT seen on a mammogram. YIKES! Imagine if I wouldn't have mentioned it....and waited.....Thank God that did not happen.

So I am a STRONG advocate for self breast exam and paying total attention to these bodies of ours.

Thanks for the interesting post.....

Mary Jo
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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

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Old 07-17-2008, 04:19 PM   #8
Jean
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Mary Jo,
How frightening!

I will say that who the tech is - is very critical and who reads the film. Yet, often times a tumor can be missed.

Unfortunatley by the time a lump is felt it is usually a fairly good size as it is difficult to palpitate a small tumor
in its earliest stage.

I had years ago a tumor high up on the top of the breast
between my arm pit and breast. I by chance felt a lump
while I was putting my bra on and adjusting the strap.
It was rather sizable and thank God benign. From that
point on I have only had digital mammograms.

Since my dx. with this nasty disease I have come to understand how important early detection.

I have come to think of it as cureable like prostate and colon cancer when caught early. Also, I was not aware
until my dx. just how many younger women were being
dx. It is very upsetting to hear that when a young gal
does feel a lump - very ofen a dr. will advise them that is it nothing and to wait a few months....yikes..

Regards,
jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 07-17-2008, 04:32 PM   #9
Jackie07
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And in my case, the radiologist was forever calling the recurrence 'scar tissue'. And why didn't the surgeon and the medical oncologist catch it? They just let it grow for 4 years until I got so sick... Just what can we do?
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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Old 07-17-2008, 06:05 PM   #10
Joan M
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I had so many false alarm cysts, that I completely ignored my lump for a few months. And as it turned out, when I had my mammo I had two lumps. The one I could feel was DCIS and the one I couldn't was infilitrating ductal carcinoma.

Jean, I never heard of Dilon test. I'm going to check into it.
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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 07-17-2008, 06:43 PM   #11
Jean
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Joan,
I have linked information for you on the Dilon

http://www.dilon.com/bsgi.php

I had it done at Beth Israel hospital, but it is now
available at NY Presbyterian/Cornell.

All good wishes to you.
Hugs,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
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Old 07-17-2008, 07:16 PM   #12
Faith in Him
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I was 37 at dx. I never had a mammo before. I had done SBE frequently but at my annual exam the doctor on a hunch felt that my right breast felt a little more lumpy. She scheduled a mammo which came out clear. She then pursued it further and scheduled a ultrasound and there it was; a 2.5 cm tumor. The worse of it was that it was already locally advanced with 18 involved nodes. Talk about a shock. I think that there really needs to be better screening for younger women.

Tonya
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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
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Old 07-18-2008, 12:06 AM   #13
harrie
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I remember my mother telling me that with her first occurrence of bc, she had a false negative with her mammogram.

I know mammograms are not as good a diagnostic tool for younger women due to the density of the breasts. But I suppose it is better then nothing.

For BRCA positive young women, I was told insurance will cover alternating MRIs with mammograms.
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 07-19-2008, 04:29 PM   #14
Louise O'Brien
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Every one's experience is going to be different. I did self-exams - and found nothing. My cancer was detected by a mammogram - a small cluster of calcifications that led the radiologist to call for more tests. There was no lump. The tests confirmed cancer but it was very early stage - between 1 & 1.5 centimetres.

Had I not had that mammogram, it would not have been spotted. So I've been a bit of a crusader - telling my friends to get their annual mammogram. Because I suspect there's a sense out there that: "hey, there's no lump, I can delay the mammogram".

It can make a huge difference - had I delayed that mammogram out of a false sense of security, especially with the HER2 marker, I would have been a lot worse off.
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Old 07-19-2008, 09:50 PM   #15
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I am upset with the original CNN report!!!

I guess it will all depend upon how each of us found our cancer, but I shudder to think when (or where) mine would have been found had I not have done a BSE that month. My tumor was 1.4 cm. after pathology, but we all know that is was actually smaller than that (with probably a cell or two out that far). It was 6.2 mm. on the initial biopsy.

I was 34 in March 2007 (when I was diagnosed), and with no red flag family history (PGM diagnosed with BC at age 70 in 1979), I wouldn't have had a mammogram for another 6 years. I was pretty much the only one that could feel the lump with initial contact, so my GYN might have missed it at my next exam.

I worry about the CNN article for women like me. I worry that my friends (with or without family history) will read it or hear about it, and not do a BSE. While I understand that all BCs can't be found with a BSE, I don't think the ones that are should be discredited.

I was also a little offended that the article made it seem like the trauma of biopsies that come back benign are too much for women to handle. Puh-leez. I would take 10 benign biopsies over the one I got.

Sorry--this is a soapbox issue for me, and I am stepping down now.

Much love,
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Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
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Married 17 years
13-year old son
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Old 07-19-2008, 09:52 PM   #16
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Oh, and...

I also meant to add that UNTIL younger women have options and the right to better breast imaging (at any age, with or w/o history), BSEs are all we have.

All done.
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 07-20-2008, 09:13 AM   #17
TriciaK
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This thread is a painful one for me. My little sister, my only sibling, died 23 years ago at age 53 because a doctor in Alaska refused to take seriously the lump she found in her breast. She went to him for 6 months in which he kept telling her the growing lump was just a cyst, with no further exam! She finally was concerned enough to call me in Arizona and ask me if I knew a doctor she could fly down and see. My doctor immediately did tests and found a large cancerous tumor. No one in our family had ever had breast cancer, but both my sister and I had been in southern Utah during the atomic tests at Frenchman's Flat in Nevada. They had always delayed testing until the wind was blowing away from Las Vegas, which of course means the wind was blowing toward southern Utah. Thousand of people, men, women, and children, have died over the years since then because of exposure to radiation due to those tests. I am alive because my sister insisted that I have early tests for BC, and then insisted I have a full bilateral mastectomy when I was diagnosed. She lived for 7 years after her diagnosis only because of aggressive treatment and chemo but if the idiot doctor in Alaska had listened to her in the first place, she might have lived longer. I was diagnosed in 1985, the same year my little sister died. My children were exposed to radiation too and are tested frequently. My sister has been gone 23 years and I am still fighting after 23 years only because I got help early enough. I think we need to spread the word to our friends, sisters and daughters. We need to be aggressive against this insidious disease. If your doctor won't listen to you, find one who will. It's your life! I will step off the soapbox now! Hugs, Tricia
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Old 07-20-2008, 08:44 PM   #18
Jean
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Dear Tricia,
I am so very sorry to hear about your sister.
Here we are 23 yrs. later and "STILL" many dr.
react the same way with younger women.

I would like to see some of approach through ads,
marketing addressing younger women and proper
breast health. Encouraging without using fear,
to follow up on suspcious lumps. While some women
do experience lumpy cysts during their monthly cycles
most know their bodies and what feels normal. If a lump is lasting more than one monthly cycle it should be
checked thoroughly.

Tricia, sadly there has been great amounts of exposure
of cancer causing toxins that we are now finding out
about. I was saddened and sorry to read your post and it was very kind of you to share it with us.

Kindest Regards,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 07-22-2008, 08:16 AM   #19
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Dr. Susan Love's take on this.


http://www.dslrf.org/endingbc/conten...1&L3=2&SID=279
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Old 07-22-2008, 08:34 AM   #20
Terri B
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Angry

Wow, what a powerful thread!

I found my own lump. But i wasn't doing a BSE. And i had just been to the gyno a couple of weeks prior, and she didn't find it.

I was just poking around. My mammo was scheduled 2 weeks after my find. That's my story.

But to even suggest that BSE's are not any good will cause more harm than good. It's a ridiculous article.
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Terri B.
46 yrs. young
Dx IDC 3/6/08
1.5 cm & .6 cm grade III, Stage IIA
es/pr- Her2+++, 9/9 richardson
Double Mast w/expanders 4-14-08
3/9 nodes positive.
additional excision rt breast 4-25-08
weekly T/H x 12 (6-2-08) Done!
FEC x4 (9-8-08) Last one 11-10-08!
Herceptin complete 8/10/09!!
33 RADS DONE 2/13/09!
rt. breast biopsy 3/20/09 .. B9!!
reconstruction complete!
DEEEEEEported on 5/19/10!!
almost 5 YEARS NED!!
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