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Old 09-23-2010, 03:29 PM   #1
Becky
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Update on My Sister

Dear Friends

I figured I would update on my sister today. She had her lumpectomy and they also took 6 nodes (before even testing if it was only dcis as the biopsy said - they told her today they did this because the first one looked suspicious). But she only had dcis (6.7mm). She found out today that it is high grade, ER+ 99%, PR+ 70%. They do not run Her2 on dcis apparently, it isn't routine. She is having blood drawn for BRCA testing (my cousin and I were negative and I am thinking my sister will be as well but you never know). If positive, she will have a bilateral. If negative, she will have radiation. She is holding up very well, working etc. The lumpectomy and node dissection was September 2. I am worried though since high grade dcis is not a good thing but it is better than high grade invasive cancer.

It will be interesting to see her BRCA result. If she is positive, I am going to get Muriad to relook at that section of my dna. Mistakes are made which would be a shame as it would have "saved" my sister since when I got tested, she said if I was positive, she would test. And if she was positive, she was going to do all the prophylactic surgeries straight away.

Hope you are all having a lovely day.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 09-23-2010, 04:26 PM   #2
tricia keegan
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Re: Update on My Sister

Becky, thanks for the update and while I know it's not routine to test for her2 on dcis, if I had this I'd want to know the results.
Can she insist on getting this done???
Everything crossed for a negative result on the BRAC and hope she recovers soon
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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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Old 09-23-2010, 06:02 PM   #3
sassy
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Re: Update on My Sister

Hey Becky,

I'm glad your sister has your knowledge to draw on. Although HER2+ is supposedly not hereditary, all things considered, could she push for HER2+ testing? The more knowledge, the better.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 09-24-2010, 02:37 PM   #4
Becky
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Re: Update on My Sister

When I told my sister that she should push for it, she said the doctor said they don't because dcis is non-invasive cancer, most dcis is Her2+ but most changes to something else if it becomes invasive and there is nothing that is given regardless.

Oddly, there is a study for using Herceptin for dcis. My sister is going to look into it and get the info from her onc. Apparently they are trialing Herceptin in newly diagnosed dcis patients to see if it helps in recurrence prevention. Very interesting.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 09-24-2010, 03:07 PM   #5
tricia keegan
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Re: Update on My Sister

I had heard of this trial too Becky which is why I asked the question, so glad your sis is looking into it and that she has you to help advise her
__________________
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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Old 09-25-2010, 08:02 AM   #6
karen z
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Re: Update on My Sister

Becky,
Thanks for this update and I, too, am SO grateful that your sister has you to help her sort out everything and find the most up to date treatment plans. Please let us know what happens next.
Love,
Karen
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Old 09-26-2010, 03:56 PM   #7
lexigirl
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Re: Update on My Sister

Dear Becky,

Your sister is lucky to have you by her side throughout this. I am relieved it is DCIS, but it is still terrible no matter. I am hopeful that whatever decision is made for her tx that she will have peace in her mind and heart. It is no fun...

Hugs to you and your dear sis,
Lexi
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Old 09-26-2010, 04:00 PM   #8
krisvell
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Re: Update on My Sister

Becky,
Sending my support, prayers and love to your sister (an you too!).

Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 09-26-2010, 04:43 PM   #9
MJo
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Re: Update on My Sister

I know a woman who had DCIS 7 years ago and now has bone mets. She says her doctor told her she is the 1% of DCIS women who recur. I am glad she has you in her corner.
__________________
MJO

IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 09-26-2010, 06:56 PM   #10
caya
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Re: Update on My Sister

Good luck with your sister Becky!!

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 09-26-2010, 07:53 PM   #11
Jackie07
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Re: Update on My Sister

I just sent the following to my Sisters overseas:

Over the course of a lifetime, 1 in 8 women will be diagnosed with breast cancer.
Risk factors you cannot change include:
· Age and gender -- Your risk of developing breast cancer increases as you get older. The majority of advanced breast cancer cases are found in women over age 50. Women are 100 times more likely to get breast cancer than men.
· Family history of breast cancer -- You may also have a higher risk for breast cancer if you have a close relative who has had breast, uterine, ovarian, or colon cancer. About 20 - 30% of women with breast cancer have a family history of the disease.
· Genes -- Some people have genes that make them more prone to developing breast cancer. The most common gene defects are found in the BRCA1 and BRCA2 genes. These genes normally produce proteins that protect you from cancer. But if a parent passes you a defective gene, you have an increased risk for breast cancer. Women with one of these defects have up to an 80% chance of getting breast cancer sometime during their life.
· Menstrual cycle -- Women who get their periods early (before age 12) or went through menopause late (after age 55) have an increased risk for breast cancer.

Other risk factors include:
· Alcohol use -- Drinking more than 1 - 2 glasses of alcohol a day may increase your risk for breast cancer.
· Childbirth -- Women who have never had children or who had them only after age 30 have an increased risk for breast cancer. Being pregnant more than once or becoming pregnant at an early age reduces your risk of breast cancer.
· DES -- Women who took diethylstilbestrol (DES) to prevent miscarriage may have an increased risk of breast cancer after age 40. This drug was given to the women in the 1940s - 1960s.
· Hormone replacement therapy (HRT) -- You have a higher risk for breast cancer if you have received hormone replacement therapy for several years or more. Many women take HRT to reduce the symptoms of menopause.
· Obesity -- Obesity has been linked to breast cancer, although this link is controversial. The theory is that obese women produce more estrogen, which can fuel the development of breast cancer.
· Radiation -- If you received radiation therapy as a child or young adult to treat cancer of the chest area, you have a significantly higher risk for developing breast cancer. The younger you started such radiation and the higher the dose, the higher your risk -- especially if the radiation was given when a female was developing breasts.
Breast implants, using antiperspirants, and wearing underwire bras do not raise your risk for breast cancer. There is no evidence of a direct link between breast cancer and pesticides.
The National Cancer Institute provides an online tool to help you figure out your risk of breast cancer. See: www.cancer.gov/bcrisktoolwww.cancer.gov/bcrisktool
__________________
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

Last edited by Jackie07; 09-26-2010 at 09:17 PM..
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Old 10-15-2010, 05:59 PM   #12
Joan M
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Re: Update on My Sister

Becky,

Glad to hear that your sister is holding up and has you for support.

I would also push for HER2 testing. I had two tumors in the same breast, one was dcis and the other invasive. Both were tested for HER2, but perhaps because an invasive tumor was involved.

Joan
__________________
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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