The bc patient has NO rights! I'm tossed out!

Chelee · 03-03-2007, 11:19 PM

For the ones that have followed my nightmare with my cancer center...they are sending me an official notice to get out. Just because I *wanted* an oncologist to EXAM me is no reason to tell me to go else where. Everything was fine until I wanted to change onc that would actually answer my questions and exam me. Her own progress notes PROVES what I am saying is true! I have to deal with my stage III bc DX...and now worry about how I am going to get treated?

They have offered me to go else where as I have mentioned before but 98 miles round trip is too far. I was already disabled before bc. Plus once I am tossed out I LOSE ALL my doctors here. Which happens to be my onc, surgeon, GYN, pulmonary, Cardiologist, Neurologist, internist & primary doc of 22 yrs ALL because ONE onc doesn't like me now. So NOT only would I have to drive 98 miles round trip for my new onc...but for ALL new doctors out at this same place. I would be *living* on the road as I have so many appts its not funny. I am being punished for filing a grievance to switch onc. (they say they can't retaliate against you for a grievance...the heck they can't.) How can they get AWAY with NOT examing me & denying a 6 month mammo with my bc history?! What happened to the standard of care? Amazing! I'm so upset...all I do is cry. I can't do this anymore.

Its bad enough to live with this bc DX....but now my life is over because I am asking to much for my oncologist to exam me. I guess I can just go away and die...because there is no way I can drive 100 miles to 7 doctors. I don't know why this is happening to me? The power one doctor can have is amazing. I will repeat what I've said before...DON'T ever file a grievance or you WILL be sorry. There is no such thing as patients rights...nor anyone to help you when your treated like this. I wonder if this is HOW my onc would TREAT someone that had bc in HER family!

Chelee

Sheila · 03-04-2007, 05:32 AM

Chelee

It sounds to me like you might get better care and a caring onc. elsewhere....would you be able to make the trips if someone took you? I know the American Cancer Society can arrange for transportation for you if you need it. If that is impossible, contact your Attorney General in your state and file a claim...that might tune them up!

CLTann · 03-04-2007, 06:57 AM

There must be a law to protect patient like you. Again, I wonder whether this support group can intervene on your behalf. Where in California are you living? Sounds like you are in a remote area. I am angry, to say the least.

Ann

Brenda_D · 03-04-2007, 07:06 AM

Sounds to me like it's time to contact the press and your congressman.

Chelee · 03-04-2007, 04:13 PM

Shelia, At this point no matter what happens I would have to go else where because this place *hasn't* given me the standard of care since day one. They promised to do all kinds of things but they NEVER do! So now I imagine the simple mastectomy and ooph I had scheduled won't happen. This HAS to be illegal. I dread ALL the calls I am going to HAVE to make yet again. Plus I will call the ADA also as I feel since I am disabled...I am being discriminated against. There is no way with my history I can travel that far and they SHOULD know it. Its all in my medical records.

I haven't contacted the Attorney General yet. Thanks for that idea. That might get someones attention. I sure appreciate your help Shelia.

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CLTann, I am in a heavy populated area. In Orange County. I do have paper work and documentation now that I did not have before so hopefully I can get help this time? I need to find someone that can intervene on my behalf...because no one on this earth deserves to be treated this way. Obviously they get away with this all the time because people are to sick/ill to deal with this. Which that's how I feel...but there is NO WAY I can just forget this. I did get a big packet of information from the "Cancer Legal Resources Center" yesterday. What GREAT timing. It had a few numbers I have not contacted yet. So I will be very busy on the phone Monday.

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Brenda, Another good idea...I havent' contacted my congressmen yet either...but I really did NOT think they would go this far. Not after all they have done to me and I CAN prove it. I just dread this because all this just sucks the life out of me. The bc fight is enough...then add this to it...its all too much.

Thanks to all of you for caring and your much needed support. I feel so alone at times. I can't thank you guys enough.

Chelee

vickie h · 03-04-2007, 08:44 PM

Chelee, Sometimes things happen that turn our lives around. I have this feeling that your care is going to improve now and that you will feel valuable as a patient and a person to your new Onc. A huge part of healing is to feel good about the doctor you are seeing and feel that you are an equal. I think you should contact your local newspaper (and maybe even the LA Times if you are anywhere in that vicinity), also a call to a local TV station might produce results. It sounds to me like you have a case against not only the Onc but also your HMO for refusing to help you before all this happened. God sends miracles in the most unlikely ways, and this maybe the change you really needed. I am sorry for the mileage you'll have to cover and hopefully there are some organizations there that will be able to assist you with transportation. Just know that God is there with you and everything is going to be just as it should be. My love and prayers are with you. I live in Central California so please let me know what I can do to help you and if you are anywhere near me. Love, Vickie

Bev · 03-04-2007, 08:52 PM

Sorry things aren't working out. Try contacting your state insurance board. They should contact the insurance company. Usually at that point your insurance company will accomodate you to make the state go away.

You can do it! Bev

Chelee · 03-05-2007, 01:42 AM

Vickie, It would be nice to actually have an onc & surgeon that treated me with a little respect and compassion. (Like they really cared about me.) I haven't had that since I started here. When I read your words you wrote to me the tears ran down my face. This onc has made me feel like a piece of toilet paper on the bottom of her shoe. NOT once has she made me feel like she cared about me or my out come. She acts like she is afraid to touch me like she might catch something. Its just cruel how they have done me. Dealing with a bc DX as you all know is more then enough for any of us.

I just have to believe at this point that your right & this is the good Lords way of sending me a much needed intervention. I have learned through my life some of the worse things turn out for the best. I am so angry at this place I will not rest until they get put in their place for doing this to me. I want to make sure they NEVER do this to another cancer patient again that walks through their doors. Its beyond cruel. Thank you so much for the kind words of encouragment and support...because I really need them. I feel so down. You put a bright spot in my day...thank you so very much. (I will contact everyone & anyone that will listen...if this cancer center I go to thinks I will just go away quietly...its NOT going to happen...and I am sure thats what they count on.)

Thanks again Vickie, I so appreciate your post.

Chelee

Margerie · 03-05-2007, 09:24 AM

Chelee,

I just hate what insurance companies do to patients. I have been very lucky in that respect. I had horrible treatment after one of my surgeries at a local hospital and raised holy hell about it. But, bottom line is they (the hospital) don't want the bad feedback- but they want the $$$ more.

Anyway, back to you- do you have an insurance agent/hr person or have read your policy very well? Seems to me if you are unable to go to that cancer center and there is not another for 50 miles or whatever- that you should be able to go out-of-network for your care. I know they have ridiculous "enrollment periods", but there should be room for exceptions. Your insurance company got you into this mess in the first place and you were offered sub-standard care. THEY SHOULD go out of their way , for liability reasons, to accomodate you. But will they? I know you have not had much luck on the insurance end- but I would explore every little detail. THIS IS NOT RIGHT!

And I am so sorry that on top of cancer you have to deal with this crap- it is an emotional ordeal to say the least. I hope you get some answers soon.

Vi Schorpp · 03-05-2007, 09:53 AM

Do you have an ombudsman at the cancer center? That should be the first call, and make sure you document date, who you spoke to, etc. Sorry for your situation.

Vanessa · 03-05-2007, 10:08 AM

I am also sorry to hear of your situation. You deserve better care and I agree with the others that you should take action. I hope things work out for you and that you get the care that you deserve. I don't have anymore suggestions, but just know that I have you in my thoughts and prayers.

Brenda_D · 03-05-2007, 10:32 AM

http://www.patientadvocate.org/

Maybe they can help?

or

http://www.opa.ca.gov/

Lolly · 03-05-2007, 10:53 AM

Chelee, I've been following your posts on this ordeal you're going through and just want to let you know you're in my thoughts and prayers. Also it occurs to me to ask if you have someone who goes with you to your appointments to take notes and be a second pair of eyes and ears? If not, perhaps the local bc support group could put you in touch with a volunteer who could take on that role. It's can be an invaluable source of support and comfort to have an ally when you're in this kind of situation.
Big Hus to you,
<3 Lolly

MGordon · 03-05-2007, 02:20 PM

HEADLINE:

<CENTER>HMO Denies Cancer Patient Treatment That Doctors Say Would Have Saved Him, Says Law Firm</CENTER>

http://news.corporate.findlaw.com/pr...b20071130.html

For information, call Stephen Garcia at The Garcia Law Firm, (800) 281.8515 or visit http://www.lawgarcia.com.

The Garcia Law Firm

CLTann · 03-05-2007, 05:59 PM

In the message above, a Long Beach attorney represented the patient who was mistreated by the medical group. Perhaps you should contact the same attorney asking his help.

Best luck.

rinaina · 03-06-2007, 10:18 AM

I agree with everyone else who responded on here. This is just so unfair. Like you said, no one should go through this on top of what we have to deal with being diagnosed with bc. Please, make as many calls as you have to in order to get the help you need as well as to report this unethical medical group. I know it would be easy to throw in the towel on this and give up but just keep reminding yourself of how poorly you were treated. Try to stay motivated. I know this is so difficult and I feel horrible and saddened by your problems. Again, no one should have to go through what you are going through. I know it isn't much but my prayers and thoughts are with you and I sure hope this all gets resolved so you can get on with treating your cancer and getting well again.

Annemarie · 03-06-2007, 10:21 PM

First off I am very sorry for your troubles. My advise is a bit different than above. I have had bc since I was 31 and it has taken all my energy to fight this disease (7 yrs.) that I just try to focus on that. I can get very angry but stress takes it's toll on your health. In the end it sucks all the energy you need to fight this disease.

Why go to a doctor who you don't have a good relationship with? I look for Drs. who show compassion and care about their patients. I truthfully feel this is important. It is a package -knowledge, personality. I would not trade one for the other. I ,like yourself, let my feelings be known and there are consequences for speaking your mind. Not that I agree with that at all. I find it therapeutic to let people know what is on my mind. It is not unreasonable to ask to see the doctor rather than the NP but they feel differently so clearly you are not a fit.

I just have learned the path of least resistance when your fighting for your life is the one I have chosen to travel. Good luck and Good Riddens of the doctor. I hope you never see him again. There is better in store. My oncologist tells me how much I mean to him and how we are in this fight together. I encourage you to find that doctor because it helps.

jessica · 03-07-2007, 07:56 AM

I have to say, I absolutely agree with AnneMarie...however, that doesn't mean I disagree w/Chelee, or her frustrations or attempts to resolve her grievance.
We've all had great challenges w/our doctors, somewhere along the way on this bumpy journey. And the longer you've been fighting, and the more complex your disease, the more likely that there'll be more bumps down the road. I plan to travel this road for a long, long, LONG time and have to pick my battles, because I know I'm in it to win the War.
I left the first Onc that treated me b/c it became apparent that my case (StageIV @primary dx, 1 year chemo, 1 year NED, then recurrence) became too complex, too time consuming, too confusing, too demanding, too something???, with obvious oversights in my care (like not reading the 2nd page of a CT/PET, sending me for RFA of a liver met, when the PET report said that there was "no uptake" in the lesion detailed in the CT). I didn't immediately leave her care because I had once really, really liked, trusted and respected her. It was a frustrating and disheartening experience.
And even though I LOVE where I'm being treated now, there are still frustrations to deal with, and always will be, including major oversights (the NP made a mistake when writing the dosing for my Abraxane/Herceptin regimen that wasn't caught until the 3rd cycle...that Abraxane costs $10,000/dose!!!)And my disease has continued to become more complex & the road has continued to be bumpy-sometimes more so than others...
But I've learned "the system" & more importantly, how to "work the system". If I have a question about my care/treatment/scan report,etc, I'll call my docs w/solutions I've researched to my questions and ask for their opinion & input. After a scan, I'll call and leave a message and say "I just had my scan & I know you can get a preliminary "verbal" (they can call in & listen to the radiologists dicated, "verbal" report), but when shall I call back for the final report?"
I have a much different relationship with this Onc than I did my first, but I am also a different patient than I was before. I want and need my docs compassion, but mostly their EXPERTISE. I feel very fortunate that I have an abundance of both in the team that helps guide me through my continued treatment and care.
I have to remind myself that I am only 1 of their many patients, and so it's MY JOB to make ME a priority, & make use of my time w/my docs wisely.
W/NED at my side, I'm happy to keep my visits short & sweet, so that my docs may spend more time with their more complex cases & patients that might be going thru a rough patch. Somwhere down the road, I may need more of their focus and attention again.
And I always try remember that they too have live's outside of their work-in order to do their jobs at their best and highest abilities, they must create a boundary and leave work, at work.
Chelee-Don't abandon your grievance, but I encourage you to do what it takes & utilize your energy to find the right doctor for you.
Is there a facility that is truly INTERDISCIPLINARY-with all docs under one roof, access to the same information, like scan/lab/path reports, in the same computer system, access to one another, like in a weekly Tumor Board setting? My moving from a private practice environment to an Interdisciplinary Cancer Center has made a HUGE difference in the quality of my care & life!
An invaluable piece of advice I was given when I left the first Onc, was to ask the new Onc (& every doc I've met since) what to expect as her patient -How long will it take to get an appt, scan results, lab results, etc? How will you expect to receive those results-by phone?by email? face to face? How accessible is s/he-by phone, by email? Be clear about your expectations & needs & create a collaborative relationship.
You're going to be traveling this road for a little while, (& to quote Dr.Phil

) Would you rather be Right or Happy?
Choose Happy!

Best of luck & Keep the Faith~

Chelee · 03-08-2007, 01:16 AM

Lolly, Yes, I have had on my husband with me on *most* of my appts. So I have a witness to everything. I just can't get over the reasons for wanting me out of the cancer center...yet I can prove everything they said is a lie. Amazing. But I had to see my GP due to a bad sore throat. We talked a bit. I told him what their plans are & how I will NOT go away quietly. (Meaning I will contact anyone that will listen & an attorney.) I *think* the word got back to my group because NOW they are going to go through with my mastectomy & my ooph which they had been putting off. (Although I am not as comfortable having surgery with people that are angry with me.) They know its patient abandoment if they don't follow through. If your in ACTIVE trt they can't toss you. I'm still doing herceptin.

I am hoping my surgeon which I have always got along with until I filed this grievance against my onc will still put his feelings aside & be MORE concerned about HIS reputation and still do a good job on me. I've talked to the surgeons nurse which is super nice and she acts like their is no problem and for me not to worry at all. She was even telling me who I should contact about my onc NOT examing me. My surgeon did a great job on my right side...so I will have to have faith and trust he will do this other one just as well. He knows my complaint was NOT about him anyway...it was only my onc. I just want to get this mastectomy & ooph done so I will have some relief since I've been pulled off femara & left with nothing! Inbetween the surgeries I believe I will have 30 or 60 days to find a new onc and other doctors. The HMO said they HAVE to give me time and CAN'T just throw me out on the street or it is abandoment which they would be in big trouble for. So needless to say I am STILL stress out...all this is too much. Alot on my plate at once.

Now that I FINALLY got the approval for my two surgeries...I will make calls and keep things quiet until I get those done. I do KNOW for a fact the letter is coming any day. I have NOT seen the actually letter yet that will tell me why I am being asked to leave, but actually I can't wait to see it. I'm dying to see what they said. My main concern now is to find someone to arrange a new place for me CLOSER! There is NO WAY I am driving 98 miles with *all* the appts I have. I think a disablity lawyer can fix that for me? I will take one day at a time...I've been so stressed its hard to even think straight.

Thanks to ALL of you that gave me ideas, encouragement, support, directions to go on how to handle this. Its overwhelming to have such support. I don't have any here at home...so this means the world to me. This has been such a difficult time for me. I just didn't need all this on top of my DX. These people down there are cruel. How can they treat a bc patient like this when they know all I was upset about is my onc that admits to NOT examing me and WON'T answer questions. My onc doesn't even deny it. Techically I am not being treated and haven't been for a year IMHO. I would think they should be worried about that? (But maybe not?)

Chelee

RobinP · 03-08-2007, 06:28 AM

Wow, I would NOT want a doctor to care for me that didn't want to. Please do not get discouraged if you have to travel far to get care. I know that flight angels will pay for all air transportation and the American Cancer Society may also help. You may want to even contact a local bus service to see if they would help you out with transportation fees or even your local church. The bottom line is keep persistenting. Good luck and let us know how you do.