Go Back   HER2 Support Group Forums > Caregivers Corner
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Caregivers Corner Dedicated to those who support their loved ones.

Thread Tools Display Modes
Old 08-22-2014, 09:19 PM   #1
Join Date: Feb 2014
Posts: 15
Caregiver burnout!!

I have been to the point of sheer exhaustion dealing with my sister's oncologist and breast surgeon.

My sister is mentally disabled and has agoraphobia. She had a chest MRI and full CT scan prior to chemotherapy. However, during the bone scan she had a major panic attack and the test had to be stopped. Her oncologist is adamant about her having the bone scan. Her MRI/CT scan were clear. Her lymph nodes are clear according to the MRI/CT scan.

She has HER2+, estrogen/progesterone negative breast cancer and is in stage 2B. She recently finished chemotherapy and now only on herceptin every 3 weeks. The breast surgeon said to forget the bone scan and get the ball rolling for her surgery in about 6 weeks. The oncologist is stressing the scan and stressing her out and her caregivers. Her caregivers are myself and our younger sister.

The breast surgeon wants my sister to do a lumpectomy only. My sister wants a double mastectomy because she afraid of it recurring. That's another issue.

How or what can we say to the oncologist that my sister can not handle the bone scan? The oncologist prescribed valium but it had little or no effect on my sister. She took one last night and she went into a terrible fit.

The stress from the hospital staff (not the surgeon) is causing myself and my youngest sister extreme anxiety. How can we handle this stress? Thanks.
cjjhero is offline   Reply With Quote
Old 08-23-2014, 06:50 PM   #2
Senior Member
Join Date: Jun 2014
Posts: 113
Re: Caregiver burnout!!

So sorry you and your sister are going through this. Perhaps you could get a social worker or some other advocate on board to help navigate this and take some of the stress off. If your sister has cognitive impairment, she should qualify for some type of coordinated care, I would think.
linzer is offline   Reply With Quote
Old 08-24-2014, 06:39 AM   #3
Paula O
Senior Member
Paula O's Avatar
Join Date: Jul 2011
Posts: 954
Re: Caregiver burnout!!

((((Hugs))))) I'm sorry you guys are going through this. It sure doesn't seem worth the stress of attempting another bone scan at this time. I think Linzer is right: I imagine you can find some help with your hospital's social service/cancer navigators/patient advocacy department. Worth a try.

Hang in there--this too shall pass...

Paula O is offline   Reply With Quote
Old 09-02-2014, 07:42 AM   #4
Senior Member
Jackie07's Avatar
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,805
Re: Caregiver burnout!!

Are her doctors aware of her disability? When I requested for the bone scan (back in 2007, also stage IIb), my oncologist discouraged it because it does not have any value in treatment (doesn't affect the outcome).

I had 'forced' the doctor to order the scan a couple of times (due to my very injured brain which failed to remember that I'd had the scan once already) and ended up with the full medical bill of the scan ...


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
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.

Advocacy is a passion .. not a pastime - Joe
Jackie07 is offline   Reply With Quote
Old 09-02-2014, 08:13 AM   #5
Senior Member
Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
Re: Caregiver burnout!!

Probably the only way to get the bone scan done would be to sedate her, knock her out completly.
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
snolan is offline   Reply With Quote

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

All times are GMT -7. The time now is 05:59 AM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2020, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter