Mar 18, 2013 - 12:41 am
My baby sis (57) was diagnosed with stage 3 b or c Dec 2012 and in her rush for treatment, she hastily chose mastectomy without chemo prior to surgery.
She was concerned about the cancer but also about the insurance deductibles going up in January 2013. After mastectomy she had complications whereas she woke up with an eye that was droopy. After a mastectomy, why on earth? We insisted on Scans and a pituitary mass was discovered and eventually removed via craniotomy (this medical care is what you have to accept when residing in Las Cruces). Mass was benign.
After d/c Jan 11, it has been delay after delay waiting for PET, echo and other tests approval by insurance, waiting for results, consult with surgeon for port implant, and waiting for appointments with oncologist. It is now 2 1/2 months since mastectomy and no chemo or any adjuvant therapy! We are so frustrated and feel helpless. She was supposed to start chemo last week, was actually at the oncologist's office and poked by the nurse 6 times until finally they decided something was wrong with the port. The same surgeon that did the mastectomy did the port, does not seem to be many surgeons to choose from in Las Cruces, so you are limited in your treatment choices. She was sent to the hospital where an xray was done and the MD told my sis that the port was implanted too deep and the line faced away from the heart (whatever that means). He told her that he will replace it next week, without any consultation with the original surgeon! The latter apparently is out of town until Thursday.
This is a circus with clowns dressed like MDs! Starting in 2007 when she was admitted under a mental health diagnosis to the hospital where she complained of a mass in the breast. They only did an ultrasound and found nothing, telling her that she was a chronic worrier. 5yrs later she is stage 3! Her fragile mental condition has kept her isolated and pretty much homebound. Seen her breast change might have just brought memories of her hospitalization where she was labeled a worrier, she might have feared that complaining will lead her to another commitment. She is now so depressed, despaired and scared and all these errors and delays are stretching her hold on reality. The oncologist wanted to start her on low dose chemo every wk. I feel that given the chemo delay and with the advanced cancer stage that this approach is too conservative. We feel that we are at the mercy of the oncologist because there are only two to choose from and women are forced to agreed with whatever approach is offered. I feel that a more aggressive treatment should be done. Is the oncologist worried about how chemo will affect her mentally? She is also diabetic and hypertensive but PET was clean and no heart problems seen.
We feel that all these tests and the port implant should have been done before her d/c from the hospital, coordination of care is deplorable. Her PCP was useless. There should have been an oncology navigator to help her out. She, in her fragile mental status, has had to deal with all these delays, phone calls, appts, etc. It is too much for her! This latest blow with the port can send her over the edge. Why can't oncologists just start the chemo by other infusion means instead of insisting in the port? Is like all the demands are for the doctor's convenience!
I am petrified that my sister's chances of survival have been further compromised by the chemo delay and the low dose approach! It is bad enough that she is stage 3, does it need to be compounded this badly? My God! Maybe we should consult a lawyer? Is there some medical board where someone can complain about the medical care received as a whole, not just a specific MD? There are not many stats out there about the impact of delayed chemo but we don't have to be experts to know that it can't be good and the chances are bad. I keep tellling her to forget about the copays and deductibles and her husband's need for sleep and to come to NY to Sloan Kettering, I need to convince her.
With all these crappy doctors in her hometown, her chances are with a miracle! I wish there was a center like those for substance abuse rehab; beautiful surroundings, and whole body treatment approach from nutrition to fitness. Has anyone created such residential facility? Thank you in advance to any who contributes and listens to my vent.