Who do I call, what do I do?!!!

[Chelee]

I can't explain everything...too much to it! But the case manager I've been dealing with since my onc ignores me is stalling and delaying all my pre-op test that Dr. Femino needs before my surgery next wk. She's intentionally making things very difficult to me! My onc canceled my appt for today and doesn't want to see me until Dec. 1st. She also told the case manger that Tykerb is NOT an option for me because it will affect the healing of my hip? (I was told it would be ok?) She refuses to let me have my TM'ers ran as promised today, & it looks like my herceptin has been canceled on the 16th!! As you all know this is a very critical time for me between my recurrence and needing my femur fixed. I don't have time for all this crap.

I've been thru this before and I called Attorneys, and all kinds of places for legal help. No one could help me. And believe me...I called so many places no one would believe it!

This case managers job obviously is to BLOCK me from doing anything. I see that NOW. She gave Dr. Femino a bad time too from what I heard. My onc should be calling me and setting up my herceptin infusion...plus talking to me about possible adding Tykerb, Faslodex, and AI since my recurrence but she won't give me the time of day. She always tells me stress will bring my cancer back...yet she is ALWAYS causing me stress on purpose because she wants it to kill me! The case manager keep telling me to deal only with her and I see its done nothing but cost me more problems.

So I'm at my wits end here...please help me. Does ANYONE know WHICH button I can push to make them do what their suppose too. There HAS to be LAWS...someone that can step in NOW...not in a few days or weeks. This is BEYOND cruel. They have delayed me for SO LONG now & their doing it again. This PRE-OP tests that Dr. Femino needs requires NO special authorization. And my primary doc is gone till Thrusday or he would help me. I need my surgery and God forbid if I don't do chemo soon I'm NOT going to be here. I know my body and cancer is on the move.

Who can I call that will REALLY help me...this HAS to be illegal but it seems these people are untouchable!! And unfortunetly I don't, & can't make changes right now...my NEW insurance takes affect January 1st! Then I can go any where I want...but that doesn't help me now. I literally have chest pains right now...I'm shaking and have been crying. They seriously want me dead and gone. I have made calls all morning to Dr. Femino's since he knows the problems I am having with my onc! I've called my HMO...they said I can file a grievence...that doesn't help me right now! I need this done now...surgery is suppose to be Nov. 18th. I also called my husbands Benefits office...waiting for a call back. He's looking for a lawyer right now. I am frantic if you can't tell. I've fought so hard and now they do this to me.
I can't change onc at this place...they refuse...so that's out of the question too. They have me boxed in so I get no treatment and can't do anything. Who do I call that can REALLY help. I'm beyond desperate.

Chelee

[Unregistered]

This sounds like a terrible situation! I am so sorry you have have to deal with this crap. Who is the case worker employed by? Is she employed by your HMO? Your oncologist? Who cancelled the Herceptin?

I hope your orthopedic surgeon calls back and can help get this straightened out.

Who is supposed to give you the pre-op tests? I would fax and PDF a letter to that person and his or her boss explaining that you have a surgery date of November 18, and you must have the following tests before then. State that these tests have been cancelled or delayed, and that if they are not promptly re-scheduled you will write to the head of the department, hospital, HMO, whichever is applicable. Explain that the surgery must go forward on November 18, and if the tests are not scheduled to allow that to happen, you will take legal action. A fax may work better than a phone call in this case.

Perhaps you could write and fax a similar letter to your oncologist, indicating that she canceled her appointment for today, and will not re-schedule until December 1. Tell her you must have the Herceptin on November 16. You should note that Dr. Slamon strongly recommended that you be given Herceptin and Tykerb prior to and during your surgery, and that you cannot understand why your Herceptin has been cancelled. Make threats as needed. Perhaps you can ask Dr. Slamon's assistant to prepare a letter from him memorializing his recommendations, and enclose that letter. You want to have a paper trail that she is not treating you in a medically appropriate manner.

Good luck! I wish I had a better idea of what to do. Hopefully others will chime in.

[chrisy]

Chelee,

You sound a little stressed:) I think you are forgetting to breathe, so do that now, 3 times. Now 3 more...

Whoever just posted before me as Unregistered had really good ideas.

Now, take it one step at a time. Here are my thoughts:

1. This week, your primary care doc will be back on Thursday, right? You said he would help; you can wait 2 days for the pre op tests. Call his office and arrange for him to speak with you Thursday. You do not need to have any action taken before then.
2. Who ordered the tests? Dr. Femino should be the one who orders preop test I would think... If they need no preauthorization, why can you just go to the lab or whatever and get the tests? Does Dr. Femino have an assistant who can walk you through this?
3. You say Oct 16th herceptin is canceled. I don't remember if you have been on an every 3 week cycle; but you know that Herceptin has a 21 day half-life which means you will still have it in your system. You have several days in which to resolve that issue and hopefully reschedule the herceptin.
4. TM'ers - I assume this is tumor marker tests? I know you feel these are really important but if you have made the decision to have the surgery first then do chemo, would having the TM'ers done or not change any treatment decisions right now? Would you do anything differently if they are up? If they are down? It seems this could wait. Of course, they may show good results which would be very beneficial and might make you feel more confident.
5. I think the Tykerb question is worth revisiting; I don't know why this would interfere with healing.

You do need to be in control of your response to all this crap. You can let them know you're not going away and be persistent but they will not be able to respond appropriately unless you can do that in a way they can hear. They probably do not see themselves as the enemy.

You've vented some very intense feelings here, where it is very safe to do so - we are after all family. I'm not suggesting you've said any of that to the people you are dealing with; only that they might not be likely to respond appropriately if you do. I've only once said to someone (a case manager at my insurance co) "so, is this the part where you refuse to pay and just decide to let me die" or something like that. I was fortunate that she was able to respond in the right way, and did resolve the problem but it was because she VERY GOOD at her job and able to handle my emotional state.

Can you bring someone with you (maybe a lawyer) to the office where your doctor is...someone who can calmly and clearly advocate for you and make them give you in writing the reasons they are denying (whatever). Get names and numbers of everyone who says "no I can't help you". That might help open some doors or even minds.

I know you were hoping for the phone number of the one person in the world who can make this all go away. I'm still trying to get that myself.

The doors you need will open.

Much love
chris

[Rich66]

Consider going outside your HMO system for the tests Dr. Femino needs. If you saw Dr. Slamon, there should be an office note showing his suggestions. If your clinic has an oncology nurse practitioner, they could get the tests going. might be someone else to talk to. Dunno..I may not be understanding all this. Now I see. Listen to Chrisy. She has a better head for this.

[Lani]

Dept. of Managed Health Care, California HMO Help Center
(We serve all California Consumers that are enrolled in a California HMO, Blue Cross of California PPO, and Blue Shield of California PPO)
980 Ninth Street, Suite 500
Sacramento, CA 95814-2725
Toll free: 1-888-HMO-2219 (HMO Health Center Consumer Complaint Line)
Toll free: 1-877-525-1295 (HMO Help Center Provider/Physician Line)
1-877-688-9891(Toll free)
Fax: 916-229-0465 (Complaints) or 916-229-4328 (Independent Medical Review)
E-mail: GenInfo@dmhc.ca.gov
www.hmohelp.ca.gov

[alicem]

I'm so sorry to hear all of this Chelee. My suggestion is that you put EVERYTHING in writing. Document EVERYTHING. It sounds like you need a paper trail to back up all of the problems you are running into.

Alice

[Joe]

Have you talked to the Cancer Legal Resource Center (http://www.disabilityrightslegalcenter.org/about/cancerlegalresource.cfm/) in LA?

I believe the Director's name is Johanna Morales.

Regards
Joe

[ElaineM]

Everybody gave you some good ideas.
I would get in touch with the organization Joe suggested. I would also talk to my primacy carephysician and HMO to see if they can help. I wonder if Dr. Slamon's office can refer you to whoever they think you should see first.
I know things are very stressful for you. Please remember that everyone here is cheering for your success and hopes that everything goes well. I have my fingers crossed for you. I will remember you in a prayer.
Take care and try to get some rest. Being well rested and well nourished will help.

[Jackie07]

Chelee,

I reread your posting just now - am I correct that your surgery is scheduled on the 18th? It's only a week away. Perhaps that's why they can't take those actions right now.

After Veteran's Day you are most likely going to have busy schedule for pre-operation appointments. Take a deep breath and trust that you will have a smooth one and recover well and fast enough to start treatment again soon.

Have you looked for 2nd opinion from any other doctors? Each hospital (as well as insurance company)usually has a 'Cancer Board' that review individual cases before approving any special request. You might be able to either speed up the surgery (even just 2, 3 days might ease your mind) or get someone to explain to you what the whole process going to be like. They need to give you a clear picture and timeline.

I don't understand the system either. PBS just showed how several other countries (Switzerland, Taiwan, Japan) provide cheaper and better health care that requires very, very short wait time. The administration cost averages only 6% as compared to our 20+ % here.

I hope and pray that everything will work out for you soon. Remember a positive attitude increases the release of endorphin which helps fight diseases including cancer. Be sure to do something (such as exercise) that helps you to relax.

[Sherryg683]

I am very upset for you right now. Your doctors have been ignoring your requests and concerns for so long now that I think the time to be patient is over. Take this post for what it's worth considering the source here. I am not the most patient person when it comes to this because to be truthful, all the patience in the world's not going to help you if your dead, you need action or at the very least some clerification of action . So that being said, here's some advise from someone who has found that sometimes raising a little hell does get results.

Down here in my area when we can't get something done, we call "2 On Your Side". It's a local news agency that takes stories that they feel are worthy and confronts the parties involved on camera. Usually gets things done right away. Do you have anything like that in your area. Don't know if it's practical or not but when it's dealing with our lives, I don't mind being impractical. Another thought, take out an ad in your local newspaper stating how you've been treated and name your doctor by name. I know this may sound insane but you know what I would probably do, I'd take out an add in the obituaries with my picture on it saying "this will be me shortly if .......(then tell your story in a calm, intelligent manner). I guarantee you they would read it or someone would point it out to them. You may even draw the attention of someone who could be in the position of helping you. Would be making a point, although in a twisted sort of way. And no, I haven't gone completely mad, I think a little bit of public embarassment felt on their part could go a long way, and woudn't be good for their business, which is their main concern afterall. You can tell I am typing while thinking here.

I do think the others have given you good advise though, about who to call and be sure to document things and to take some deep breaths. I'm sure you can find some lawers that will help you with this, you just have to call the right ones. Maybe injury lawyers or such.

My brother went to the same cancer center I did when he was very ill, although he had a different doctor. I remember him being given the run around by the center, this was a young man in his last stages of melanoma. The research assistant would tell him she was looking for something for him and would call him that day, he would wait by the phone and not hear from her. His doctor seemed to turn over everything to her. This went on and on for weeks and weeks. I finally went in and saw my doctor who is in the same practice and told him what was going on and that this was just plain cruel. That I was not going to just stand by and watch my brother die while they jerked him around. I asked him if he would step in and do something. That afternoon my brother got a call from the research assistant and the process went a little smoother, they at least returned his calls and got him into MD Anderson. I thanked my doctor when I saw him and he said "I knew I better do something before you went all bullistic down here". I once went into the cancer center where I go to and there was this little old lady who you could tell was very sick. She was raising all sorts of hell right there in the middle where everyone was waiting. She was complaining about how her calls were not being returned and how she was being jerked around. I think every patient in the clinic was rooting for her because we had all been given the same treatment at times and understood. Needless to say, her doctor saw her immediately and I would bet returned her phone calls thereafter, they didn't want her back in their lobby again. We should not have to act this way when we are fighting for our life. I don't believe these doctors want you or any of us to die. The sad truth is, that many doctors and staff have learned to desensitize themselves, so that they don't mentally burnout. I watched my poor sick brother sitting patiently while these jerks didn't seem to give a damn. I love my oncologist, he has never refused me anything I have asked and we have a great relationship. He also knows that I am one that would not stand by and be cast aside quietly. No, we shouldn't have to raise hell when we are already going through it, but sometimes we have to. I say get that attorney, call those numbers given to you and if it gets to be too much stress on you, ask that hubby of yours to step in and go to bat for you. If I were in your area, I'd be happy to get a sign with your doctors name on it in big letters and let everyone know what kind of treatment you were getting.

HERE'S AN IDEA FOR STARTERS., maybe you should give us your doctor and clinics email address, so that everyone on this board can drop him a little note saying how important to us you are and that we hope he is doing everything possible to take care of you..nothing mean...just let him know you do have people that care and is concerned about your treatment. That you have family here that is watching and keeping an eye on what they are doing for you. I'd be glad to send my email immediately. Maybe even back that up with some nice cards of concern mailed to them at the clinic...as I said..nothing mean or threatning in any way...just letting them know how important you are...remind them of this.

I know my ideas may be a little outside the box here, but sometimes you have to go outside that box to get noticed. luv you
sherry

[Chelee]

I feel like someone beat me...I am just exhausted. Thanks to all for the good suggestions and advice here. I made calls to the HMO, Benefits office, COH nurse, case manager, cancer center & my primarys office to leave him a note of what's going on! The case manager realized I was not going away nor was I buying her story about how I had to proceed in order to get these pre-op tests done! I had the everyone calling the case manager to find out what is going on! By the end of the day she finally calls me & says she talked to my onc and I can have my Herceptin on the 16th. (But onc refuses TM'ers that were promised.) I wanted to make sure my markers didn't JUMP up after all this time with no chemo...that would change things!

The case manager was blowing alot of smoke up my a$%. She was trying stall and delay things by having me run all over to see strange doctors to ok the pre-op tests...instead having my oncologist work with the COH Ortho and coordinate my care like she is SUPPOSE too! There is NO special authorizations needed for this. They know the Ortho doctor doesn't even walk me walking at all on my right leg. But yet send me on a while goose chase for something my onc can do in a few minutes! So it was around 4:30 PM when the case manager called back & said someone from the cancer center would set-up my pre-op appts today. So the girl calls me at the end of the day to set-up these appts. That's when MORE problems came up. The case manager did not give this girl the right information so we could get these appts set up. So now this girl said she'd have to call me tomorrow when she got this mess straightened out.

There goes ANOTHER day I could of been handling these appts. I should of had all these pre-ops done by now. I still have to get up to COH again for a pre-op appt and to sign papers. Let alone go back again for the actually surgery on the 18th. So I'm going to play heck getting all these appts done by next week. Even the gal the sets the appts said she didn't know how we could make this work. So it starts again tomorrow. I had actually chest pains today...they are going to kill me before the cancer does.

Lani I have called the Dept of managed care before. They can help but it is time consuming. I have to file a complaint...or they will take one over the phone...then it goes through a process. Which I will do when I have time...but at present it's impossible with what I have going on right now. But I appreciate your help.

Joe I've also called "CLRC" before. That too is time consuming...but they do try to help. But you only get to talk to an "intake" person...once they have all your information they say they will call you back in a few days. However I do remember they sent me out a big packet of information a couple yrs ago with organziations to call. I might look for that.
I will still try to put a call in to Dr. Slamon's office tomorrow and see what they say about this situation? I'm curious why I can't have Tykerb while doing surgery? (Chrisy...I WILL revisit that!) Thanks to all of you for the advice, and ideas! Not much got accomplished today so we will see what the morning brings. I'm still open to idea's...because this still isn't done yet.

Chelee

[tricia keegan]

Chelee, this may be a lame suggestion compared to other's but is there a patient advocacy person/office where you're attending?
We have one at our hospital and they can usually step in and sort things out very quickly.
I'm feel so sorry for you and hope they help you. xx

[DanaRT]

Chelee, Praying you get a resolution very soon. Time is of the essence I know, but have you considered sending a letter to your state representive (sp?)? Push beyond borders.


Big hugs,
Dana

[Sheila]

Chelee
I too found that putting things on paper and adding facts gets their attention. I used lots of articles on the synergy between Tykerb/Herceptin when appealing the insurance company...all I got from people here on the board.
I also kept reminding them that this is a quality of life issue, and they were not looking at my interests in sustaining my life.
As far as the cancer legal resource center, i am sure they are good, but they are just now calling me back from way over a month ago...they are not an option when you need help fast. So at least right now, it looks as though you will get the herceptin, I would push more to get the Tykerb added, and worry about the tumor markers later....you need the herceptin, you need the hip fixed, the Tykerb would be a great addition, the tumopr markers can wait till after the surgery....concentrate and focus on the positives (I know they are few and far between) and take one hurdle at a time, when they all pile up, they seem insurmountable, but one at a time you can and will get through it.
You have received so many good suggestions, try to accomplish all you can, and relax a little, all this stress does not help your healing or your problems, it doesnt hurt those you are fighting with, it hurts you!
Sending a big hug Chelee

[ElaineM]

Chelee,
I certainly don't want to add to your stress or work load. I said a prayer for you and I still have my fingers crossed that everything will work out for you.
My comments are general ones for anyone who might be having problems with medical professionals.
We can score medical professionals without giving our names or personal information by going to www.drscore.com (http://www.drscore.com) or www.healthgrades.com (http://www.healthgrades.com). In addition to sharing our negative comments about medical professionals we can share good comments about them too. We can also check to see what other patients think about medical professionals we are considering. I have used these services several times in addition to recommendations from other medical professionals and friends or family members. I also call my state's medical board to check on the backgrounds of medical professionals I am considering. I want to know about their education, professional backgrounds and if there have been any complaints about them in the past and if so what kind of complaints there have been.

[StephN]

Dear Chelee -
Man alive! Sounds like the Three Stooges at your HMO.

I sure hope you are getting those pre-op appts lined up today. The only other thing to do is go down there and sit on their desk until it gets done properly!

One thing that concerns me regards your tumor markers. If you will be starting Tykerb, you need to know what the numbers are before adding another drug. I would think the DOCTOR would want to know as part of the surveillance items for analyzing results.

When you get your Herceptin, tell them you are NOT LEAVING until your markers are drawn along with the other blood work.

I just hope when you are able to make the change in Jan. the new onc will be a hell of a lot more cooperative and compassionate. Sounds like the way things are now, robots could do better.

[Chelee]

Shelia, your experience with the "CLRC" (Cancer Legal Resource Center) was the same for me. They say it will be a few days & someone will contact you. But by the time they called me back over a months time or more I forgot why I called them. lol They are really slow & they never could help me with any of my problems?

Today they set-up my 3 appts for me all on Monday. Pulmonary doctor...then bone scan. Which I have to have an injection...go home and come back later for the scan. Then Herceptin later that day. Monday will be busy. Still working on EKG and chest x-rays...no labs mentioned yet either? I still want my tumor markers ran...I want to see if Herceptin is still working at all? Plus I feel like I have activity going on in sterum area now too. Also feels like a enlarged node in right side clavical area. (Now I'm really getting worried.) I called Dr. Slamon's office today but they were out...I'll try again tomorrow. I want to ask about having this surgery with Tykerb? I'm trying to remain calm but this is alot of down time for my cancer to spread.

Elaine I found every website I could to rate my doctor about a yr ago...it's the least I could do for her. lol The "drscore.com" was a new one to me...so thanks for adding that one.

Steph I agree about the TM'ers. Since I do get my herceptin Monday I am going to request they be done. If they absolutely refuse again...I will pay for them myself...then fight with my insurance company later. I need to know what they are now before adding anything...and also because of this NEW node I think I feel coming up in clavical area. I want to know if my cancer is on the move. I'm getting very concerned. Sterum area hurts and burns too...that's also new.

Chelee

[ElaineM]

I loved it when you wrote that scoring the doctor is the least you could do for yours.
The good thing is that we can rate doctors without giving our names or personal information.
I rate every doctor I visit.
Sometimes I give excellent ratings. Occassionally I give a not so good rating.
The rating system helps other patients looking for doctors. I think doctors get to decide which sites they are listed, so I hope it encourages doctors to improve the areas that need a little improvement when the reports are not so good.
Sometimes we don't think about it, but most doctors are independent business people even if they work in hospitals and clinics and in addition to promising to help humanity most doctors are concerned about all the things that all business people are concerned about, including keeping the customers (patients) coming, so they can make a decent income and taking care of their expenses. Good ratings and good recommendations insure that. Not so good ratings eventually affect their ability to meet those goals.

[MJo]

I did not have to fight an HMO during treatment, thank God. It is sinful that we have to fight cancer and the HMO at the same time. But I want to say how much I admire you. I know you didn't need this stress, but you didn't give up and you got what you needed. You got them to back down. I might have given up. Congratulations.

[hutchibk]

Chelee, regarding Tykerb and surgery, I had capsular contraction surgery in February and was told to continue taking my Tykerb, no problem. The only difference might be that your surgery will require working with the bone, but I don't know that Tykerb would affect that either. Your surgeon should be able to do the research about Tykerb to determine if that is a problem, but my less than scientific guess is that it is not a problem. Hope this helps.

[Chelee]

Hi Brenda, I am going out-of-network to COH for my femur surgery. I did ask him about surgery and Tykerb...he said I'd have to ask my onc. (He wouldn't go there.) But I sure don't see how it would hurt from what I've read so far?

I did put a call in to Dr. Slamon's office today, but didn't get a call back yet. But thanks for sharing your story with me...at least I see you had no problems with it. I'd sure feel better about this if I could add something to the Herceptin till my hip healed. My onc just likes to refuse everything...I can't believe a word she says. It's always about saving money and not me! I need my onc to authorize it or it can't happen. This is so frustrating.

Chelee

[Catherine]

Thank goodness for all these good ideas. Hoping that Monday goes well. We are all standing behind you.

Catherine