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Old 10-19-2012, 03:00 AM   #1
Jackie07
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'HOW' survey by Army of Women

Army of Women is conducting a survey of breast cancer diagnosis/treatment (Health of Women Study):

https://www.healthofwomenstudy.org/Default.aspx

ps.

Letter from the Foundation after I'd signed up:

Thank you for signing up for the Health of Women (HOW) Study, the first ever online cohort study of breast cancer! Please make sure you keep your HOW password and login in a secure location. If you lose your login or password, please use this link to retrieve the information.

By signing up for the HOW Study, you will be asked to complete periodic questionnaires which will focus on different health and exposure topics. We will send you periodic "Call-to-Action" emails inviting you to take part in a new questionnaire. We will also ask that you let us know when you change e-mail addresses or move so we don't lose touch with you.

We plan to follow members of HOW over time, which will allow us to track lifestyles, environmental exposures and other potential causes of breast cancer. Because of the need to follow our members over time, it takes some time to generate any concrete results. However, we will share any interesting information we gather with our members as soon as we are able.

You are free to drop out of the study at any time. To withdraw from participation, you will need to log in to your account by going to http://www.healthofwomenstudy.org.

You can also encourage all of your friends and family members to take part in the HOW Study. Simply click this link to refer a friend.

We would love to hear from you and get feedback about your experience using the Health of Women Study website. This survey should take no longer than 10 minutes. To take part in the survey, please click here http://www.zoomerang.com/Survey/WEB22GMG2L5PRT.



Thank you again for signing up and helping us move breast cancer beyond a cure!

Sincerely,
Dr. Susan Love Research Foundation

Follow us on Facebook and join the conversation on Twitter.
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Jackie07
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
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3 Infertility tmts 99 > 3 u. fibroids > Pills
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IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
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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

Last edited by Jackie07; 10-19-2012 at 04:17 AM..
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Old 10-19-2012, 07:43 PM   #2
evergreen
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Re: 'HOW' survey by Army of Women

I have signed up for and done the first survey already. Then I emailed every woman I have contact with, encouraging them to do the same, as women over 18 who have not had cancer can join too. I think that one benefit will be for these women, that the questions will raise warning bells re factors known or hypothesized to have a link with breast cancer. Maybe then they will do more research, and focus on prevention, e.g., by avoiding alcohol, having more physical activity, nursing their babies, etc.

I have so much respect for Dr Susan Love... her book on breast health and cancer is my favourite of all my books, my bible, so to speak!
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Dx Nov 2010 at age 65 - 3.5 cm invasive ductal, 8 of 15 nodes. ER-,PR-, HER+++. Lumpectomy, chemo, 6 weeks rads, 52 weeks herceptin finished April 2012.
CAT,PET, bone scan, ultrasound and mammogram in Spring 2012 - NED.
Cherishing every day, but realistically "watching my back" (or should I say "front"?
Eating foods thought to fight cancer, exercising every other day,using my garden as my mecca of peace, and loving my supportive husband more than ever.
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Old 10-20-2012, 07:11 AM   #3
Jackie07
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Re: 'HOW' survey by Army of Women

Thanks for the outreach effort. I really hope more of our Her2 sisters on this Board will participate and help spread the word.
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Jackie07
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 02-17-2013, 12:10 PM   #4
jacqueline1102
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Re: 'HOW' survey by Army of Women

Thanks, Jackie.

I just completed the study.

Take care,

Jackie
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8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
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04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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Old 02-17-2013, 02:53 PM   #5
tricia keegan
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Re: 'HOW' survey by Army of Women

I just completed it too.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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