Thank you all for your advice and support. We are to see the docs at CTCA after Christmas, and you can bet I'll be discussing all of this with them to see what can be done.
We have been lucky so far to find doctors at CTCA and with mom's treatment, and mom is very determined to keep living, therefore I will find a way to make things happen in the easiest possible way for my mother. I'll keep you updated as I can, and for now, I wish you all a VERY MERRY HOLIDAY SEASON!!!
the doctors in the Oncology office will not treat her because they are not comfortable with her choice of treatment for her cancer". If she would get sick again like she did last weekend, she was not guaranteed any contact with any doctor in the Oncology office.
Can doctors do this?!!
Forgive my late entry to this discussion. I haven't really been following the metastatic discussions lately. First, let me say that I agree that your mother's treatment by the local docs is unconscionable.... but, as a physician (pediatrician), I may have some clue what's going on here. Your local doc may be concerned about being sucked into liability for a treatment he doesn't know about.
I think her doctor at the Cancer Center needs to contact the locals and work out an arrangement for her care. If a local doc, not necessarily an oncologist, knows he has a readily available consultant to be responsible for her care, he may be willing to do the local leg work in providing the care.
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...
Pat, When Gene was in overnite for his heart problem 2 weeks ago some of the nurses would run to his room to see his stoma,,and his bag, never seen one before, here in Elyria Ohio....its more of a heart place...but really!!!!Ginger
Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet
Cynthia...i'll go ya one better...when i had my blockage not one hospital in Cincinnati would admit me because they didn't know what an Indiana Pouch was!!!! And my surgeon from Cleveland was in Hawaii!! That was an interesting night. I feel like an alien living in Cincinnati!! And the blockage would not have happened at all if i hadn't entrusted my local uro to take out my one remaining J-tube..in pulling it out he trapped part of the ileum under my ureter. Mark Twain was right about Cinti...if the end of the world came he'd go to Cincinnati because he'd still have 20 yrs left. Pat
I live in W. MA. where there is a small Ontological practice and four overworked general Urologists, not what you would call state of the art. I chose to take part in a clinical trial in Boston and later had my RC in Chicago because of the pelvic radiation I had in the clinical trial. I had twenty rounds of chemo. and had to travel two and a half hours to have my port flushed because I did not have a local Oncologist. I was stone walled even from even that small courtesy. What it boils down to is if they don’t do the work they don’t want the maintenance, a hard but true truth.
This is how I handle it and it might work for you. I talked to my Urologist in Chicago and have the 24/7 number that reaches his resident on duty. If I have a problem I call them and let them know I am going to the emergency room and they will be getting a call. When I get to the ER doctor I give him the number he calls them they consult and we are on track with the proper treatment. The ER doctors always seem happy to consult with them it solves the problem for them in a simple manor. I would talk to your mothers Oncologist and let him know what is going on locally and see what you can work out with him.
Now the interesting part of your question was about the ethics of the local Oncologist denying your mother emergency services based on the fact he did not offer her treatment. Interesting question I would ask someone who had a background in medical ethics. It could be more of a case for the state medical board rather than a lawyer.
Keep us updated and take care of yourself.
Chin up and straight forward
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Thank you to all for your responses...this has just been the most frustrating week! As my mom's "go-to" daughter, I am the "rock", so I have to handle all this, so writing it all out sure does help!
Pat-my mom's surgery began in Madison, Wisconsin, and this past January ended there when we saw an Oncologist who only wanted to push the trial drugs that he was working on for Bladder Cancer. My mom was not comfortable with that, so we did return home to Appleton (just south of Green Bay), and met with a local Oncologist. He would be the one who, in January, told my mom to go home and die basically. THEN, we sought a 3rd opinion at CTCA, and have gone there since February for treatment. It really is only a 2 1/2 hour drive, (2 hours and 20 minutes if I speed) but last week friday there was no way my mom was in any shape to travel. If this would happen again,however, she would not allow me to take her back to our local hospital, that's for sure! The only other time that mom was pretty bad was when she began radiation...we had been driving back and forth every day for the 10 minute treatment. That wore her out, and she spent 7 days out of the 7 weeks as an inpatient at CTCA. After that she bounced back like there was no tomorrow! My mom is 50 going on 20. When she is not feeling sick, she is still working 8 hours a day, and still taking care of her 2 kids who are still at home, they are 16 and 14, and her husband, (whom I will not comment on right now because there is way too much I could say about him, but just need to sleep sometime tonight!). You can't just tell my mom to go home and die. It just ain't gonna happen.
Currently mom was to undergo 2 rounds of chemo to keep the 2 new tumors just discovered from growing. The IMRT radiation she had over the summer shrunk the largest tumor by over 3 cm's already, probably more by now, which is awesome! They did find the 2 new tumors growing but still no spread to any organs or bones...all in lymph nodes centralized between her kidneys and pelvis.
As far as the doctors and their treatment, or non-treatment here...I did contact a lawyers office, however have not heard back from them yet. I am going to check out the patient advocacy website also as soon as I have a chance...just got out of work and I have to be back at 10am so I have to sleep fast, but I just wanted to get back to you and thank you so much for your responses so far...