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Jackie07 · 06-24-2011, 08:47 PM

Joan,

Ever since my recurrence was found after four years' misdiagnoses, I've lost confidence in the scans and my doctors.

I've been paying more attention to my own 'feelings'. For example, my lips always reflects my health. When they are dry and peeling, I know something is wrong. The challenge is to figure out which part of my body is wrong.

Even my lab work fooled the doctors. My chronic iron deficiency anemia turned out to have been caused by excessive blood loss during menses - and that was caused by disrupted sleep - which was caused by the life-long brain tumor pressuring on my head.

I asked my oncologist to give me a urine sample test when I had my 6 month check last month. It was almost five days before the oncology nurse called me and told me to pick up the antibiotics they just ordered for me. Usually we'd get the result back within a couple of hours. I guess the cranberry pills I had been taking must have 'masked' the lab reading and they had to either 'culture' it or send the sample away for further testing.

Not sure how this might help you. I do know that I have to take deep breaths when I'm inside of the 'tube'. It has to be an age thing because I was never 'clausterphobic' when I was younger.

06-24-2011, 08:47 PM	#3
Jackie07 Senior Member Join Date: Jan 2008 Location: "Love never fails." Posts: 5,808	Re: Pet/CT scan Joan, Ever since my recurrence was found after four years' misdiagnoses, I've lost confidence in the scans and my doctors. I've been paying more attention to my own 'feelings'. For example, my lips always reflects my health. When they are dry and peeling, I know something is wrong. The challenge is to figure out which part of my body is wrong. Even my lab work fooled the doctors. My chronic iron deficiency anemia turned out to have been caused by excessive blood loss during menses - and that was caused by disrupted sleep - which was caused by the life-long brain tumor pressuring on my head. I asked my oncologist to give me a urine sample test when I had my 6 month check last month. It was almost five days before the oncology nurse called me and told me to pick up the antibiotics they just ordered for me. Usually we'd get the result back within a couple of hours. I guess the cranberry pills I had been taking must have 'masked' the lab reading and they had to either 'culture' it or send the sample away for further testing. Not sure how this might help you. I do know that I have to take deep breaths when I'm inside of the 'tube'. It has to be an age thing because I was never 'clausterphobic' when I was younger. __________________ 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; 07-06-2011 at 05:20 PM..