I am tired of waiting! I am nobody...

[Chelee]

I have TRIED everything under the sun to get my oncologist to see me. She keeps putting me off. I DON'T have time for this. Now that they KNOW they can't do radiation on me...I NEED to be on either femara, tamoxifen, SOMETHING! Its going on almost three months since my LAST chemo while they play games. Since I can't have rads its even more important I get on some ant-ihomonal meds asap. But CAN'T get into my onc asap.

I made this known to this head onc lady I deal with...she did agree with me and went and spoke to my oncologist for me. But she got fooled...my onco doc told her too that she just did NOT have time for me right now...she is busy and is taking time off to see family. (So just SCREW ME!) The head lady that talked to my onc for me said she did agree to see me EARLY Wednesday but she ONLY has a "few" minutes. (They took blood "fsh" from me Monday while at my herceptin infusion. They had the gull to tell me it will take WEEK for my onc to get that blood test back anyway. (NO WAY) So for me to WAIT till next wednesday is no big deal. (Another week IS a big deal to me!) Time just KEEPS going on while they drag their feet and ignore me. (They want my cancer to come back!)

I have QUESTIONS for her NOW that I CAN'T have radiation. I am SCARED. She HAS TO KNOW THAT. This head lady looked surprised that my onc told her she wouldn't have time to discuss much with me. (Its always that way!) Now this HEAD lady sees what I mean!

How is this even LEGAL when they constantly DELAY my care? Won't spend any time with me to discuss whats going on, or answer my questions. They always have excuses to put me off. Its always WAIT till next week...or I don't have time now.

Someone PLEASE help me. I won't stand a chance if I can't find a way to get them to deal with me. Please don't say go some where else...I can't. I would do anything to do that...I don't have the money too. I am STUCK in THIS GROUP. But there has to be LAWS...I do have rights don't I?

They really don't give a darn about me. I have tried everything at this point. Plus I just had an ECHO...I called about a couple things on the report that concerned me. The nurse asked my oncologist about it for me...and the onc told her to tell me that she ONLY cares about the EF number...and mine is fine and if I want any other information she can send me to a cardiogist. (Gee, thanks.) More doctor appts. I just wanted to KNOW IF she even looked at m ECHO before I did herceptin this last Monday...and I found out she HAD NOT! She just keeps letting me know she has NO TIME. Thats all I hear.

What can I do...please someone...help me.

Chelee

[Lani]

Do what you can for yourself in the meantime. Unless you have a history of ulcers or kidney or liver disease, it would seem it would be safe to take Aleve from the supermarket. Don't you have an internist who could OK that for you in view of your other medical problems (decreased lung capacity, etc)

It is an antiinflammatory which has both antiaromatase and antiangiogenic properties.

I remember you said you are on an HMO. Look into the California state program which allows you to see any doctor for breast cancer treatment (talked about before on this board--contact your local American Cancer Society or breast cancer advocacy group (Susan Komen?) to find out more about it or perhaps someone on the board can give you more information.

Good luck--remember to take one step forward every day (get information, make a contact, find out about another resource to help you) rather than focusing on what has/or has not been done in the past. It is much more likely to get you over this!

[koolbreeze]

Chelee, I know that all this is frustrating and difficult. It seems that you may need to take a step back and determine the things that are really important. I know you are SCARED and EVERYTHING seems like it is important. However, you are beginning to sound over anxious in your posts and that concerns me. I am not trying to be judgemental here or condone the doctors treatment of your emotional state, I am just trying to let you know what I am seeing.

Does your insurance cover any mental health care? Maybe talking with a professional couselor might help you to find some things that you can do for yourself to reduce your stress level.

I have seen lots of good suggestions to you in previous posts about contacting the ACS or Komen foundation. Have you tried any of those? I really think it is important for you to find someone to talk with; another survivor, a counselor, an advoacte, a friend, someone that will listen and let you vent and help you think through these things, without judgement. They may be able to help you focus on those things that you have control over and let go of the things that you cannot control or what has happened in the past.

Please take a step back, breathe, try to relax a little, and focus on what you have control over. I will be thinking of you. Hugs Kool

[janet/FL]

Chelee
The Y-Me Foundation as well as the American Cancer Society was very helpful when I called them about a friend who had an oncologist similar to yours. Believe it or not, there is more than one of those!
www.y-me.org/
They can help by talking to you and may have some ideas as to what to do next. Let us know who you talk to. At least you got through to one person at your HMO.
Hugs and prayers,
Janet

[Sandy H]

I had HMO once, you can call your HMO and voice how you are feeling at this time. I had an issue when I was first diagnosed and got put off was told I could not go to the E.R. and yet there was no doctor that would see me in the practice. I had seen a different physician the week before. I was very ill and before the day was out I was admitted to the hospital that was after I made several phone calls saying I was dying. I sent a letter to the hospital (as this group was within the hospital)one to the Supervisor of the doctors, one to HMO and one to my primary physician. I got a call from the HMO telling me she would be under review and I did get a survey to fill out a year later checking to see if I was happy with my care!! The first visit back to my primary she had my letter on top of my chart and we had a nice talk. She assured me it would never happen again and my calls never was heard by her. She was shocked that she never knew I had called. I have never had any further problems. I have since discovered rather then let things fister, step up let someone know how you feel and if you do it tackfuly someone will help. They tell me if we don't tell someone they can not help. These people for the most part are there to help us and some times they may need to change how they do it so we feel they do care for us. I had a nurse just tell me a couple weeks ago its our life, and not their ego, she also said we have to make our wishes known and if one does not listen go to the next one. Everyone has a boss and if that is what it takes then do it. In the mean time you may to think of getting some help which has been mentioned here. Someone to talk to helps. Wishing you the best. Keep us updated we care about you. Sending you a hug, Sandy

[Tom]

Dear Chelee,

Take a deep breath, have a Hershey's dark chocolate bar, and gather your wits for a moment.

Even if I had an annoying WART, rather than BREAST CANCER, and you were receiving the quality of care that your onc has shown, I would be sitting in an attorney's office. I am not one to recommend litigation to someone, but this is ridiculous.

Find another oncologist that comes with favorable mention by other patients, or go to a cancer treatment center. You need to have, at the very least, the name of another oncologist to whom you can direct your medical records be sent.

Go to the hospital records department with proof of who you are, and kindly, and politely request copies of ALL of your treatment regarding your breast cancer. If they give you a hrad time, and demand to know who they are going to, give them the name of your NEW oncologist. But, tell them that YOU are the patient and have the right to receive copies of your records, even if they insist on charging you for the copying expense.

Find an attorney friend if you can, and ask or pay for him/her to send a simple written request to your oncologist's office for any and all of his/her records regarding your treatment.

Do not discuss ANY of this with anyone personally connected with your current onc. Let him'her get wind of it through the usual channels, or from the letter he/she receives from the attorney's office.

Get another Hershey's bar and sit back in your recliner with the phone next to you so you don't have to get up to answer the frantic calls you will be receiving from your current onc's office. Also have your clothes ready so that you can go for the IMMEDIATE oncology appointment that will be requested when they call you. Make sure you let the dog out and water the plants, as they may suddenly find time for an EXTENDED office visit when you go.

If you DO NOT GET the immediate attention of your current oncologist, then take your records and go to the NEW oncologist. Calmly tell them of your apparent abandonment by your previous onc, and tell them that you are SURE that you will be treated with greater respect this time.
Let us know how you make out.

[tricia keegan]

Dear Chelee I am so sorry you are having all this hassle with your onc,extra stress is one thing you do not need right now.I had an oopherorectomy a couple of weeks ago so that I could take Arimidex.I could'nt make it over to the hospital and am not due to see my onc until September and really did not want to wait until then so I went to my family Dr (GP)don't know what name you call them in the States but he gave me my script for Arimidex which I'll begin next week.Could your family Dr do something similar for you? I think mine just goes along with whatever the hospital wishes for me.I have no other advice other rhan what everyone else has already said but you are right to be so pro active with your medical care and I hope you get some satisfaction soon.

Tricia

[tousled1]

I know that everything seems overwhelming to you right now. But I agree with the others - sit back and take a deep breath. Remember you are on Herceptin which is the most important part of your treatment. I would not be as concerned about not getting the rads -- lots of women don't get them. As for starting the hormones perhaps when you see your oncologist the next time she will start you on something. Referring to the MUGA/electrocardiogram -- the most important thing as regards to brest cancer treatment (Herceptin) the LVEF is probably the only thing an oncologist is interested in. In order for you to have received your Herceptin you onc had to see your report and sign off on it, otherwise you would not have received the Herceptin. I know that when I went for my Herceptin the nurse would not administer it until she had the LVEF in hand (the doc had seen and signed it - it just didn't make it into myfile yet). Also remember, you are HER2+ but also ER/PR- and that is definitely to your advantage.

[Bev]

I think Tricia had great advice. Go see a GP or OB/GYN and get the hormonals started. Tom had great advice about getting the onc motivated. I should be thankful that I haven't had so many problems. I think you should keep a diary. If this continues much longer, go to out of network care and ask the HMO to pay. Start writing your state insurance board now. I don't know if your case is overly complicated or if they're dropping the ball. Good Luck.

[Chelee]

Sandy, Your a real sweetheart. Sounds like you get what I am going through with this HMO/GROUP of doctors. I am so sorry to hear what you had to go through as I can relate. Thats just awful. Its bad enough to be fighting bc...but a person doesn't need all this garbage. I was put OFF like you once when I first started this nightmare. I told them I could Not BREATH for four days! I was so scared. They didn't want me in the hospital, and the doctor didn't want to see me...so he just called me at home and said to take a xanax and lay down. Long story short...my O2 WAS 82 at rest...gasping for air...rushed to hospital by ambulance and was stuck there for 10 days. I was a very sick women they said. Ended up with oxygen, heart moniter, & wide spectrum of antibiotics. Had the doctor BELIEVED me...that would NOT of happened. He let me suffer for FOUR days with me calling him.

You did mention for me to let people know how I feel. That I have done...and several times I THOUGHT all was well. (Then surprise...back to square one.) I haven't went through my HMO yet...I might as well try it. It can't hurt. If nothing else...I don't want any women going through bc to every have to be put through the ringer like I have been.

I have found what I thought was some really helpful people down here that all promised to help me. Some have to an extent...but they run up against my oncologist which seems to think she can do whatever she wants no matter who talks to her? It has to change! I have pretty much went through most the normal channels in this cancer center. Time to climb a little higher I suppose. Like you said...everyone has a boss.

Thanks for all your supportive replies Sandy. Your really a wondeful person.

God bless you.

Chelee

[Chelee]

Tom, I must say, you do have quite the sense of humor even when it comes to such a serious matter. I had to LAUGH at some of the things you said. Making me laugh lately isn't easy...but you sure did it.

I LOVE your second paragraph. I was trying to fix this on-going problem without getting a lawyer but at this point I am beginning to think thats the only way they will do anything for me. After calling my HMO...if I get no where that way I will have no other option other then to find a lawyer. I can't sit around and wait any longer while they play games with me. Its just been darn right cruel the way they have treated me. But this is a NEW building with NEW doctors...and I am starting to think they are MORE concerned about paying for their new building then they are their patients. I have heard many complaints there...not just me.

In fact I find it odd when you call there. The FIRST thing their phone message machine says is "If you are calling about a medical complaint...push 1 now". Then it goes on to if its an emergency, or if you want to make an appt.

Why would *that* be their FIRST options? It makes one think they get an awful lot of complaints...doesn't it.

I like the way you think Tom. One thing Bev said is for me to keep a diary. I have that one covered and then some! I have been writing in a daily journal for YEARS. Long before breast cancer. I have everything written down and dated. Dates, days, time, doctors I spoke to, what was said. I have journals going back at least 15 years. So its not like I just started this. So if I have to get a lawyer to get their attention...I will. I will certainly have all the information a lawyer might need with my journals alone. I have some of my medical records. I requested them a while ago..but I since found out there are lots of things missing? I didn't get them all. So I will try again!

Thanks for your advice Tom. And for the humor you added to it. Have my clothes ready, let my dog out, water the plants. lol After they got a letter from a lawyer...I could see it happening just about exactly that way.

Thanks a million Tom. I appreciate your help & support.

God bless you & your Mom. Continued good thoughts and prayers coming your way.

Chelee

[sarah]

Chelee,
Eat a lot of chocolate. You absolutely MUST find a support group - you are driving yourself crazy and you shouldn't be in this anxious state. The suggestion to get in touch with the Y-me.org is good and as I've already said, call UCLA and ask for their support group or social worker. Can you afford to just go and pay to see another oncologist to get an opinion? I know appointments take time but why not start that. Did you contact the Susan Komen people? or anything of the local hospitals have breast cancer clinics, do contact them. you need an advocate willing to fight for you and get things clear but you have to find that person.
Where in southern california are you???
Even your HMO should have a social worker but I'd go outside of there since you've been so put off. also how are you ever going to be able to trust this oncologist even if they are good???? and you really need to be able to trust your oncologist as well as believe they are good.
You can't keep driving yourself crazy this way. Find help. You are upsetting yourself so much and I feel strongly most of your problems could be solved by a good support group locally who can suggest where you should go and what you should do. I think you need to talk to someone. Does Kaiser or whatever HMO you are with have psychological counseling? that can help get you through this?
Please contact some support group - it will do wonders for you. So many people have had exactly the same problems as you're having and they can tell you what to do.
take some deep yoga breaths and try to relax. As you saw in the other post, there are quite a few women without support systems and I really think that adds such a heavy burden to an already difficulat situation. However that said, you have it within yourself to feel good and to feel positive and to feel better but you must learn to relax. Don't become paranoid, your HMO is not out to harm you but unfortunately they are busy and are not as kind as they should be. You have to take the steps to find help outside that system. Definitely call UCLA and Cedars and St John's (santa monica). There are people out there who are able to help you but you have to search them out. Hopefully venting on this site helps you mentally but it won't help solve your problem which is to find a locally based support group or person. I hope I don't sound harsh, I don't mean to but you really MUST find help. I say it all with great concern for you and for all women who have no good support system.
all the best, sorry I'm not nearer to help you
sarah
PS I hope the next post I read from you will be that you have contacted at least 3 suport groups and maybe even attended a meeting.

[Lauriemn]

Hi Chelee, what I wanted to suggest is that you start tape recording your appointments with your onc. Many women do that so they don't miss any info and that way, if her behavior is as outrageous as you say, you could always report her to your HMO, the AMA, and you have evidence to play for them of how she treats you.
I also wanted to tell you that I waited 2 weeks for my fsh results, so obviously having to wait one week is not out of line.

I would research all that you can about the hormonals, so when you have an appointment with your onc on Wed., you can say I would like a prescription today for....., that way, if she rushes through and doesn't answer all of your questions, you can still get your prescription.

I would also write all of your questions out, and if she says she doesn't have time to answer all of your questions about your other concerns, I would inform her that you will check with the scheduler or receptionist (or whoever schedules the appointments) and make another appointment at the first opening that she has.

I do agree with your onc about seeing a cardiologist. That is not her specialty, and do you really want someone who seems to care less about you advising you about something as important as your heart?

I agree with the other posters that you should find a support group.

Good Luck

Laurie

[Chelee]

Koolbreeze, I know you mean well and so do others...but I am *not* becoming over anxious as you said. I WISH all I needed was some mental health help. You said your not trying to be judgemental, but it seems like it. I am glad you have an onc and cancer center you can trust, thats HOW it SHOULD be. Getting timely treatment IS important....not constant DELAYS or being totally ignored.

Sorry if my posts have upset anyone or bothered them. Not my intent. I see some people think I am blowing this out of proportion & I just need to seek counseling. I wish that was it.

So I won't bring it up anymore. I am sincerely very sorry. I came here for help, and thats what I have always gotten. But this time a few of you just think its all in my head. I am just trying to get the "standard of care" which I am due like everyone else. I was looking for help and ideas, and some gave me some good ones. I will shut up now. Thanks to everyone that has been very understanding and given me ideas to help me out.

God bless you...

Chelee

[tousled1]

Please don't feel that you have to "shut up." Everyone on this board is dealing with cancer and the fears that go along with this disease. If I remember correctly you started the thread about what support systems people had. I think that was a great post and it amazes me everytime I read how much support women feel they derive from this board. Keep in mind that we all get frustrated at times which is perfectly natural. I sincerely hope that you can get your oncologist to listen to you. I think the idea of taping your visits is worth a try. I know that when I go to my oncologist I always have my questions written out and absolutely will not leave until I have answers. My oncologist sometimes seems to be in a big hurry and that's when I pull my paper with my questions out. I know it's a big expense to go out of network but maybe the time has come for you to try someone else. I'm keeping you in my thoughts and prayers. Hope that you will soon get the answers that you need.

[sarah]

Dear Chelee,
I think you are confusing support groups with mental health help. Both of course have their place and usefulness. Support groups are patient savvy information groups and also they can help keep your morale up and you'll find you can help someone else as well. Through a support group you can learn who's the best oncologist perhaps even at your HMO or who to approach as a second opinion, what the interaction of drugs have added or not, for instance none of my oncs ever told me not to take vitamins during various treatments - or they mentioned aspirin and ibuprofen and gingko balboa I think before surgery but during chemo it wasn't discussed until I mentioned it. That may be a small thing but that's support groups.
also this support group explained what the chest pain I had was and that lead me to look it up on the Mayo Clinic and some ibuprofen helped me get rid of it whereas the cardiologist just said let's look at it in a month!!! well it hurt!!!
and don't stop ranting, that's your right as a sick person. we all handle stuff different but none of us would ever accuse anyone with cancer of being a cry baby because we're all crybabies!!! we all hurt and are scared and confused but I don't think you can do it all on your own and this site is not a local support group. maybe there are some members near you that can advise you but otherwise as I've said before, seek out some local support groups - these are the professional patients who've been through it all plus people like yourself who are trying to muddle their way through.
Right now I'm personally going through a stressful time - not medically but because I might move, I have a totally neurotic puppy and some other stuff and right now I'm taking a small dose of a xanax type pill on days I feel overwhelmed which is something you might want to consider also.
but you need people based where you live who can advise you how to deal with things there and who to see there. This site can't help you with that and believe me I love this site but it's not local to you and right now you need local suggestions. A local support group may even be able to tell you what state office or senator (boxer or feinstein) or congress person to call to get help. Maybe it's just someone saying "hey i wrote a letter to the head of the hospital and cc'd it to.... and boy did I get action" you just never know until you talk to others what works.
don't despair, things do become clearer and usually work out whether or not the pros seem to be listening or not.
take care, take a deep breath and do contact some local groups you'll find them an amazing source of important information.
sarah

[Esther]

Chelee, are you experiencing anything in particular that makes you believe you need to be on a hormonal immediately?

I finished up chemo in March 2005 and by choice went over 18 months on Herceptin alone, and did great. I just recently, in the last month added Faslodex to my treatment plan.

Being on Herceptin alone is still a valid treatment option.

[sarah]

Chelee,
since you're HER2+ and ER/PR+, I would think you would want to be on both Herceptin and a hormonal however if you do radiation I think you have to wait until you've finished radiation before beginning a hormonal but you can stay on herceptin. I get Herceptin every 3 weeks and Femara, an AI (aromotase inhibitor) pill every day. but maybe it depends on how positive you are.
Since you've had lymph nodes under your arm removed, don't forget to disinfect promptly any scratches or cuts on that arm and to wear gloves if you garden.
sarah

[chrisy]

My dear friend Chelee,

I am truly sorry that you are continuing to have such trouble with your medical team and are feeling trapped in a situation which has been less than supportive to you.

You've received several great practical suggestions for getting a response from your HMO - a well written, detailed letter with cc to the HMO management and, since you are in California, the Insurance Commissioner, could definitely help get some action. Lawyer letterhead is always an added inducement! Chocolate is also helpful, but I disagree with Tom - I think your situation calls for nothing less than SCHARFFENBERGER!

You've also received some great suggestions for managing the stress associated with this mess. Some of the responses which you may be viewing as less than supportive might also be seen as "tough love". Nobody thinks these issues are "all in your head"; you have every reason to feel stressed and angry. I would too! Please do not take these responses as a signal to "shut up" or that another support safety net is being yanked from under you. We care about you very much and speaking for myself, your cheerful and encouraging responses to others posts always lift my spirits.

The concern you are hearing from us is that being in a prolonged state of stress does not serve your health. Managing stress is unfortunately ONE MORE THING we have to do to successfully fight this disease.

I've heard some fascinating speakers on the topic of stress reduction. I guess you could say I was a "stress junkie"! The readers digest version is that when faced with danger, the body releases stress hormones which give a quick boost to our "fight or flight" survival mechanisms - diverting blood flow to our muscles and away from our higher consciousness (ability to reason). This response harkens back to our early evolution. Unfortunately, human beings do not run very fast, don't have very sharp claws (especially those with taxotere/herceptin nails!) and don't fly very well at all. Our survival advantage is our ability to think and reason. Being in a constant state of arousal (stress response) is detrimental to our immune and cardiovascular systems and makes it more difficult to think clearly just when we need it most.

So, I would agree that finding some ways to decrease your anxiety and relax would serve you. As would getting some local support. I'm not saying it is easy, but it is worth some effort. Anything to give you more power! I've found that meditation helps me get relaxed and focused (although that's not saying I do it well!)

Finally, remember you are being treated with the "miracle drug" Herceptin, which as Esther said, is a VERY valid treatment option.

Take care Chelee, we are with you all the way.
Hugs,
Chris