HER2 Support Group Forums - View Single Post - Had to switch doctors...adventures of a bald headed freak

Jackie07 · 09-09-2010, 07:50 PM

I always fall in love with my doctors - the good ones. Earlier in my brain tumor journey, I fired my family doctor/primary physician and demanded all kinds of referrals from the 2nd one. A year after my surgery and recovery, I switched to a third family doctor because the 2nd family doctor was avoiding me - he wasn't the one who had diagnosed my tumor, nor had he tried to refer me to any specialist - I had to damand them. And in the world of HMO, more referrals means less bonus for the primary physicians... He even had tried to persuade me to use the neurosurgeons 'in-network' when the neurologist had stated that this one particular 'out-of-network' neurosurgeon was the only one in town he would recommend.

I've been seeing my oncologist for the past 7 years. Neither he nor the breast cancer surgeon diagnosed my recurrence because the mammogram report continued to say it was 'scar tissue' (because everyone trusted the surgeon had done her job). I had to request for a mammogram ahead of the annual routine from the surgeon and get her attention - the people who read the films were just not up to their job. And I finally understood why the brochures always states that mammogram is only accurate 70% of the time.

It's an executive rank of job to manage our own cancer treatment. We have to know how to supervise our health care providers - how to motivate them, how to communicate with them... We have to counsel our loved ones - help them to get counseling, be sure they take their medication, including anti-depressant... We have to be our own marriage counselors - if we want to stay in the relationship... We have to pretty much do everything ourselves, because frankly, who gives a 'd-' if we are gone forever?

No, you are not crazy. You haven't seen the real 'crazy' yet...

09-09-2010, 07:50 PM	#7
Jackie07 Senior Member Join Date: Jan 2008 Location: "Love never fails." Posts: 5,808	Re: Had to switch doctors...adventures of a bald headed freak I always fall in love with my doctors - the good ones. Earlier in my brain tumor journey, I fired my family doctor/primary physician and demanded all kinds of referrals from the 2nd one. A year after my surgery and recovery, I switched to a third family doctor because the 2nd family doctor was avoiding me - he wasn't the one who had diagnosed my tumor, nor had he tried to refer me to any specialist - I had to damand them. And in the world of HMO, more referrals means less bonus for the primary physicians... He even had tried to persuade me to use the neurosurgeons 'in-network' when the neurologist had stated that this one particular 'out-of-network' neurosurgeon was the only one in town he would recommend. I've been seeing my oncologist for the past 7 years. Neither he nor the breast cancer surgeon diagnosed my recurrence because the mammogram report continued to say it was 'scar tissue' (because everyone trusted the surgeon had done her job). I had to request for a mammogram ahead of the annual routine from the surgeon and get her attention - the people who read the films were just not up to their job. And I finally understood why the brochures always states that mammogram is only accurate 70% of the time. It's an executive rank of job to manage our own cancer treatment. We have to know how to supervise our health care providers - how to motivate them, how to communicate with them... We have to counsel our loved ones - help them to get counseling, be sure they take their medication, including anti-depressant... We have to be our own marriage counselors - if we want to stay in the relationship... We have to pretty much do everything ourselves, because frankly, who gives a 'd-' if we are gone forever? No, you are not crazy. You haven't seen the real 'crazy' yet... __________________ 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; 09-11-2010 at 08:47 PM..