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Old 02-10-2014, 10:46 PM   #1
cjjhero
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Sister of newly diagnosed HER2.

My sister was newly diagnosed in December with HER2 positive, estrogen & progesterone negative breast cancer. She is still undergoing staging but the initial reports are right breast tumor with one lymph node involvement.

She just had an MRI done today and in 10 days a bone scan and CT scan will be done. She was given a few weeks off to enjoy Christmas. The main oncologist believes that treatment will consist of 6 to 8 rounds of chemotherapy and a lumpectomy.

The breast surgeon's nurse is thinking that this is a stage 2 cancer. We won't know conclusively the stage until all the testing is done.

My sister is adamant that she wants a double mastectomy because she doesn't want the risk of recurrence. Her main oncologist and breast surgeon oncologist want her to have a lumpectomy only with the lymph node(s) removed also.

The doctors want to start with the chemo first to shrink the tumor, then perform the breast surgery without radiation.

We lost our mother to complications from cervical cancer 25 years this month. My mother's cancer was almost in remission when she developed renal failure. The radiation they used back then basically fried her kidneys. Chemotherapy wasn't given as an option for her. I'm not sure if chemo was used very much at that time. It wasn't cancer that killed her it was the treatments that were meant to save her life.

My sister is mentally handicapped and has been doing pretty well despite the diagnosis. I believe that this has hit me more emotionally than either her or my other sister.

This is sad because there is no cancer history except for my mother in our family's history. My mother's cancer was believed to have started from HPV.

The stress of helping my sister to her doctor appointments and with weekly errands is causing stress with my own family. I am married to a wonderful understanding man. However, since my sisters don't have a car I am there only source for transportation. Other friends and family live back home in PA. We currently live near Cleveland OH.
I'm trying to maintain a home and help out but there might be a time when I can't.

What advise can anyone give to a caregiver of an HER2 patient? I have been down this road before and am hoping for a much brighter outcome.

Thanks so much for any advise.
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Old 02-11-2014, 06:07 AM   #2
Becky
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Location: Stockton, NJ
Posts: 4,117
Re: Sister of newly diagnosed HER2.

You are a wonderful and caring sister. However, please reach out for help. The American Cancer Society can provide help in the form of volunteers who can take your sister to some of her treatment appointments. You should go to the appointments where decisions are made since a patient usually needs a second set of ears and your sister certainly does if she is mentally handicapped. Of course the first chemo session you will go but at some point, the drug Herceptin will continue to be given for a year and those as well as chemo treatments (after the first one) could be done by a volunteer. Perhaps her cancer center also has a service similar to that of the American Cancer Society. Also reach out to your close friends. If any of them could pitch in a time or two or a good neighbor of yours or your family. Even if you could get half of these things taken care of that would be less of a burden for you.

And we are here for you to ask questions and vent. Don't be shy.
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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 14 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 02-11-2014, 06:05 PM   #3
IrvineFriend
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Location: Irvine, CA (Southern CA)
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Re: Sister of newly diagnosed HER2.

I second what Becky said. I was not driving when I was diagnosed and the number of appointments was staggering. I used American Cancer Society for rides. Even if a volunteer isn't available, they will pay the cab driver with a voucher for a certain number of rides. I got to know a volunteer who sent me emails of encouragement throughout my treatment. There is help out there.
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Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 02-11-2014, 06:07 PM   #4
IrvineFriend
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Re: Sister of newly diagnosed HER2.

I don't know how to do links, but in the search window, cut and paste this search and you will get a long list of resources to cancer patients started by Paula O.

Fun Free Opportunities/resources for Breast Cancer patients
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Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 02-14-2014, 07:37 AM   #5
Jackie07
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Re: Sister of newly diagnosed HER2.

Here's one of the threads by Paula:

http://her2support.org/vbulletin/sho...resource+Paula

【Click on 'Search', then type in 'Paula and resource' and choose 'Show Threads',then click on 'GO'】
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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
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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

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