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Old 08-22-2014, 09:19 PM   #1
cjjhero
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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.
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Old 08-23-2014, 06:50 PM   #2
linzer
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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.
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Old 08-24-2014, 06:39 AM   #3
Paula O
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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
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Old 09-02-2014, 07:42 AM   #4
Jackie07
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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 ...



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Old 09-02-2014, 08:13 AM   #5
snolan
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Re: Caregiver burnout!!

Probably the only way to get the bone scan done would be to sedate her, knock her out completly.
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Double mast w reconstruction
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