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Old 09-27-2008, 09:38 AM   #1
Sandy in Silicon Valley
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Location: Silicon Valley, CA
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CURE article: When Patients Don't Want to Know

Hi,

I think that this article has some excellent points about the difficulties for caregivers, when patients can't talk about their own (sometimes dire) prognosis:

http://www.curetoday.com/currentissu...ers/index.html

or tinyurl format:
http://tinyurl.com/34pmlj

"For caregivers of cancer patients, life is a demanding balance of preparing for the worst, while hoping for the best. It can be even harder when the caregiver knows the story won't end happily ever after, but the patient is adamant about not wanting to know his or her prognosis."

My problem, as a Stage IV bc patient, was initially the opposite - my husband wouldn't talk about, or even consider, my wish to make death arrangements in advance. His responses were a deal- breaker: "Oh, I won't let you die!" "You're not dying anytime soon" (he happened to be correct, but neither of us knew that at the time...) Then, I nagged at him until he read Final Gifts, took the IDEA of my death seriously, and turned into a protective mother hen, which I didn't like either. We've since established a nice middle ground, where we can talk/ cry/ joke/ wonder about my death - or even his! (he's overweight, but otherwise healthy, so if he predeceased me it'd be a huge shock, but still not past imagining!)

I've prepaid my funeral and cemetery plot expenses, had my gravestone engraved (but for the DOD...), and otherwise took control, so, when the time comes, he'll be left with little to do but grieve - which suits me fine!

(((hugs)))
Sandy in Silicon Valley
__________________
1992 - age 44/ ER-/PR+ Stage II dx - mastectomy, CAF x 6 cycles; Tamoxifen
1997 - BRCA1 mutation dx'd
1998 - ovaries removed
1999 - off Tamoxifen, on Arimidex
2003 - dx'd Stage IV - lymph nodes & lungs. ER-/PR-/HER2neu+++.
Tx: Herceptin & Taxotere (6 cycles).
2005 - 2.9cm x 3.6cm brain tumor. Craniotomy, CyberKnife. 9 mo. staph aureus infection at incision site - 2nd craniotomy. Two small brain mets CyberKnife'd.
2006 - revisit Xeloda - dosage lowered to 2500mg/day, 5 cycles.
2007 - "spot" dx'd on qtrly brain MRI - same location as CyberKnife 7/05. > by 2-4mm per quarter - - radiation injury or re-growing cancer? Tykerb added to Herceptin - July, still "watching & waiting". Otherwise, fully functional...


"The majority of people are not only afraid of holding a wrong opinion, they are afraid of holding an opinion alone." Kierkegaard
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Old 09-27-2008, 02:22 PM   #2
Jackie07
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Location: "Love never fails."
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Thank you for your wonderful posting. It's amazing how you've handled everything 'seemingly' at ease.
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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

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