What CAN I do?

Chelee · 08-10-2006, 03:50 PM

Is there any laws about your health care team dragging their feet and leaving a person hanging out to dry so to speak? The way I have been handled since day one just doesn't seem right.

Since my case was SUPPOSE to of been presented to a tumor board from day one...why didn't they have this problem with my radiation resolved, and figured out back then instead of DELAYING everything now?

They KNEW back then my anatomy was different...that I am missing ribs and they wouldn't be able to radiate my chest wall because I DON'T have a chest wall. (Pretty simple.) I thought the whole idea of presenting ones case to a tumor board is to figure out what the best course of treatment is for that person. From start to finish. I heard back then my surgeon, oncologist, Rad onc would ALL be involved in this meeting. So WHY did they NOT forseen this problem of radiating my chest when they KNEW I had no ribs!

I will be at week eleven NEXT week while they are just now discussing all this. I am so far past due to start rads. I feel they have taken my case lightly and could careless. Heck...the rad onc doc would of already radiated me had I not expressed my serious concerns about how bad my lungs are. I have 37% use of my lungs right now. Won't get any better either! Radiation will do permanet damage of at least 12% says the rad onc doc. My pulmonary doc is very concerned about me losing any more lung to rads.

They are having a meeting about me again today. (Thursday) I sit and WAIT and wonder when they are going to either tell me yes we can go ahead...or no its totally scratched. I have gotten the go ahead a couple times...then they STOP it again. Its back and forth! I am fed-up with this.

I am NOT on femara or tamoifen as mentioned. Only herceptin. All this DELAY over my rads has put me way past getting on femara or tamox as I mentioned. I need to stay on TOP of this bc...not just sit here and do nothing while THEY (Medical) team just keeps putting me off. They keep going back and forth with me and seems to be taking their SWEET time like I am NOBODY & NOT important.

First I have the ok do to rads...then they send me for another test or scan and tell me to wait. Then they call and say its ok...then I go in and they say NO...they need to talk to so and so. This has went on FAR TOO LONG. I have been more then patient. Yet they tell me NOT to get stressed out and maybe I ought to talk to someone. Meaning a therapist so I don't dwell on this. I wouldn't be dwelling on anything if they were doing THEIR job. Eleven wks past my rads...I think I have been more then patient. I have went to all their scans and tests. Here it is 3:30 PM and I have NOT heard from them today. They had their meeting about me this *morning* I was told. So WHY hasn't even one person called me! I always have to call them and they tell me they will get back to me. ARGH!

There has to be some RULES, or standard of care. Does anyone know if they are breaking any laws, or over stepping the rules surrounding the standard of care? They SHOULD of had this all discussed and figured out when they FIRST presented my case back in Feb. 2006. There is no excuse for this in my opinion. I have been patient and nice. (Would they do this to THEIR daughter, Mother, Brother, Sister, child, etc!) I think NOT.

Does anyone know if I have ANY rights to get them to get things moving one way or another? I didn't go through all the chemo for nothing just to sit here forever while they play games and take their time. I have family that would LIKE me around as long as possible even if they don't care.

If anyone is uncomfortable posting here about this...PLEASE PM me and tell me what I can do about this? Time is marching on and my TEAM doesn't seem to care about me.

Any help would be appreciated.

Chelee

AlaskaAngel · 08-10-2006, 04:58 PM

Chelee,

Try CancerCare, 1-800-813-4673, where they have social workers to answer calls and likely they would be able to help you. Let us know what you learn.

Concerned,

A.A.

Barbara H. · 08-10-2006, 05:05 PM

Chelee,
Unfortunately, you have a very difficult case concerning radiation. Physicians do not have all the answers; sometimes medicine is referred to as an art. Our oncologists have to use their intuition as much as their experience and knowledge. It will not help to completely knock out your cancer with rads if you lose more lung capacity. It is the same problem that women here face when their muga scores drop below 50 and they are denied Herceptin.

I believe your doctors are trying to come up with the best treatment, but just can't make a decision because of the complexity of your situation. I also believe that it shows that they are concerned and want the best for you.

Of course, I don't know the doctors on your team, and not every doctor is skilled in his/her bedside manner.

In any case, I can understand your frustration and fear, and hope that the best decision will be made for your treatment.

Best wishes and keep us informed!!

Barbara H.

Chelee · 08-10-2006, 09:38 PM

Alaska Angel, Thanks SO VERY MUCH for the number. I didn't know where to begin. I will be calling the number you gave me first thing tomorrow. I hope they can give me some answers? I just want to resolve this and get going on my tx one way or another. I have been patience with these people...tried to work with them in every way...but I HAVE to take care of me since no one else seems to be.

God Bless you Alaska Angel. You REALLY are an ANGEL.

You have been very helpful to me with other problems I have had since this started. (You SO GET IT.)

Thanks a million!

Chelee

Chelee · 08-10-2006, 10:21 PM

Barbara, The problems I have had with this would take me far to long to explain. Thats half the problem. I realize my posts are TOO LONG.

Since they are so long, I am sure some skip over parts of it & don't understand whats all went on. (I don't blame them.) lol But, that being said, your right, it WON'T help if the rad onc damages anymore of my lungs. Thats the problem here.....If I had NOT questioned him...and STOPPED him...I would of already HAD radiation. He was just going to do it WITHOUT LISTENING to me about how BAD my lungs are. Thats when I had my pulmonary doctor step in.

So in all fairness...none of this is because my rad onc doc was concerned. He could of caredles. My case is very complex as you stated, but the rad onc doc didn't take it seriously & I could tell, that scared me! But my OTHER doctors involved sure did. When they got WIND of this THANKS to me seeing my pulmonary doc...thats when they all started looking into this and STOPPING HIM until they all put their heads together.

This Rad oco doc is younger & seems to think he is pretty smart & doesn't need to listen to anyone. I KNOW my body better then anyone...and one thing I know is how HARD it is for me to breath as is. When he said he would hit another 12% or more of lung...that would do me in...my pulmonary doc agrees. One last thing...what scared me the most is I had a MRM (modified radical mastectomy) and if he had HIS way...he "was" going to radiate over my incision across my entire chest! That would of certainly killed me. Now the only dicussion they are having is IF they can do the axilla area and up by the collar bone....and its not looking very good I am assuming since I have not heard back from them yet?

I would LOVE to give credit where credit is due...but in my case I can't do that.

They KNEW how complex my problem was when this was FIRST presented to the tumor board...but yet they wait till now to even discuss it and its only because I my pulmonary doc is very concerned about me. They just run everyone through this place like its a mill. This is NOT a production line...they need to treat us all on an indiviual basis.

But thanks so much for your support Barbara, and wishing me well.

Its much appreciated. I know my story is hard to follow...there is so much to it unfortunely. But I appreciate everyones help and support. Everyone here is so great.

Chelee

Chelee · 08-11-2006, 04:05 PM

My so called medical team really cares about me. They had their meeting about me YESTERDAY as to whether they can do rads or not on me? They promised to call and as always they DIDN'T. (I am nothing to them!)

I put in several calls to the doc's and others involved in my case. They are all GONE today...how convenient. (Friday, now I can WAIT till Monday again...more time going by!)

I finally found the rad tech girl and she said yes they did have their meeting and said "Didn't anyone call you'? I said "No". She said she would of called me but was told I was in Texas. I told her I have NEVER been out of this state in my entire life let alone now. I never go anywhere...so just more excuses and stories.

She told me they all discussed the risks and benefits of my rads and due to the fact I only have 37% use of my lungs now...they DON'T think it would be wise to do radiation. That Rad onc doc said they would hit at least 13% just doing up by the axilla & collar bone...and that 13% would make me LOSE another 5% usage of my lungs leaving me at 32%. And if they under-estimated...it would be less then that leaving me in wheelchair and on oxygen.

She said I can go to another cancer center and get a 2nd opinion. I said "Does it help to get rads this LATE? Eleven weeks as of Monday. And if I get a 2nd opinion...that will take a GOOD two weeks I bet!

I give up...I can't finish typing because I can't see through the tears. No one would believe how I have been treated here. I do mean "No one". No one at this place gives a crap about me.

Chelee

08-11-2006, 04:16 PM

DEAR CHELEE, AS HARD AS IT IS GET ANOTHER OPINION FROM SOMEONE WHO CARES. KNOW WHAT I'VE FOUND IN 10 YEARS? THEY GO BY THE BOOK, YOU'RE A NUMBER, AND THE BOTTOM LINE IS THAT YOU NEED TO BE AGGRESSIVE IN WHAT YOU WANT AND YOU NEED TO BE YOUR OWN ADVOCATE. i HAVE SEEN DR'S DRAG THEIR FEETAND BE RUDE TO ME---BUT THEN THERE HAVE BEEN MIRACLES---DR'S THAT TAKE ME IN AND SAY,
I WILL HELP YOU.'
FIND THAT MIRACLE--PRAY FOR IT. SUSIE

Barbara H. · 08-11-2006, 04:53 PM

Hi Chelee,
You do have a very difficult case and I'm sorry for the frustration and anxiety you are experiencing. You are right, it was very inconsiderate that someone from the team did not get back to you. It sounds as if your pulmonary doctor is the most on top of things. Perhaps you could make an appointment with him, vent your fear and frustration, and get some advice. If that doesn't work, you will probably want to get a second opinion.
Good luck,
Barbara H.

Sandy H · 08-11-2006, 07:29 PM

Cherlee I can feel your frustration having been through some this week myself. First of all don't panic over not getting radiation. I did not have radiation because I had skin mets taking off like wild fire. I am still here and its going on 6 years with IBC (inflammatory). Perhaps, you can send your oncologist an e-mail and explain your frustration. Tell him you don't feel its right not to be called on results, decisions. You are not being treated with respect. Lay the cards on the table and be right up front. You can do it in a tackful way. I did that this week with my frustration and I got a reply back the very next morning. My oncologist is a very caring person. I am very fortunate to have a team of caring nurses and doctors. However, if I have a problem that concerns me or frustrates me I tell someone. It has always been resolved to my satisfaction. It doesn't have to be to my satisfaction as long as I am treated with respect and compassion. I hope you will think about doing this. If not by e-mail ask for an advocate and sat down with that person and tell him/her how you really feel. We have a nurse in our oncology that will take a patient in her office with door closed and talk-been there and done it. They can not help if you don't tell them!! Let us know how you make out and what you decide to do. If you have lost all confident in them perhaps, you need to think about changing to another facility and you can mention that as well. These people for the most part are very caring and want to help. You don't need this stress in battling this disease so try to get it resovled now. hugs, Sandy

Lani · 08-11-2006, 09:55 PM

Why don't you go to Stanford for a second opinion. They are always faced with the most difficult cases that other people don't know what to do with.
Their radiation therapy department pioneered the field of radiation therapy and their radiation therapists are specialized ie, one does almost exclusively lymphoma, another almost exclusively head and neck cancer, etc.

They are only a 50 minute plane ride away.

If you don't get radiation therapy, it only increases your chance of local recurrence and only by a few percentage ie it may decrease its chance of coming back from say 3% to 5%--which when they present it is that it decreases its chance of coming back by 40%!!!! Radiation therapy has NOT been shown to affect survival and hardly, IF AT ALL, influences its chance of distal metastasis.

Your real decision with respect to your survival is your choice of antihormonals. Drs. Spector and Bacus published a paper in which they present findings implying that herceptin resistance can develop because of increased signalling through the ER pathway.

Theoretically fulvestrant may be best for this, but it is only used in the metastatic setting. It seems the other AIs should all work about the same (theoretically) but trials comparing them are still not done/finished.

In the meantime, what you might consider is that NSAIDS like naprosyn, clinoril, etc have been shown to have antiaromatase (and antiangiogenic) effects and some do not even require a prescription. A discussion of this
information with your oncologist could not hurt.

I know it is hard, but if you try spend your "worry energy" in pursuing information, you may end up feeling a bit more in control in a siuation which often feels out of control. I have seen it help others.

Hope this helps!

Jean · 08-11-2006, 10:22 PM

Dear Chelee,
Tagging on to what Lani mentions - I also felt frustrated months back but I will share with you "Do Not Stop" getting information and knowledge. That is so important for us. Use your energy for the good of fighting back on the disease.
I think many on the site had huge mountains to climb - get a 2nd or 3rd opinion
Don't let this set back put you in a frozen state. Go where ever the best information and dr. is! It saved my life.....now you must move forward!

Thinking of you....
Fondly,
Jean

Lani · 08-12-2006, 02:23 PM

Perhaps you would be a candidate for accelerated partial breast irradation as they only irradiate the tumor cavity. It can be done with brachytherapy (where catheters temporarily implant seeds twice a day over five days) or at the time surgery (too late for you) or twice a day for five days by external beam. Stanford has a trial. USC does as well but you might get randomized to the standard whole breast irradiation arm, which it sounds like you shouldn't have. Stanford's trial is of the last two options and they might make an exception ("compassionate use" ) due to your unfortunate anatomic circumstances.

Also (and this is just hypothesizing) Stanford has an active cyberknife program particularly for brain tumors and mets but also for brain aneurysms and any tumors that need pin-point precision targeting. Maybe they would use cyberknife to direct the radiation only where they want it and avoid other areas.

Hope this brainstorming helped!

Chelee · 08-12-2006, 03:02 PM

Susie, Your so right...that is exactly how I feel. I am just a number to them...I mean nothing to anyone of my so called medical team. All they give me is lip service. It seems the more I ask them questions or want answers...the more problems I encounter with them?! It seems like everyone just does what their told and never asks them a thing. Since I do and want to know everything....I get treated the worse it seems. I have been very pro-active in my tx & its gotten me no where. Its like they want to PROVE to me they are in total control and I have no say over anything. If I had treated these people bad or been hostile...I could understand this. But I feel about as important as a piece of gum on the bottom of their shoe that they can't get off of it. I ask questions and I am never asking in a way like I don't trust them...so I don't know where this comes from?

Even the last meeting I requested with my Rad Onc doc we were done talking. We both stood up at the same time and I said "Thank you so much for your time". He acted mad that I even wanted any of his time and bolted out the office door in front of me and didn't say a word to me. I thought he would at least say "Your welcome". (And believe me...he heard me.) These people love to make me feel bad all the time. I can't take much more of this. I havent' cried this much since I was first DX. I can't stop. I don't know what else to do. I have tried everything. I CAN'T find one person at this place that is in my corner and really cares about me.

I sure hope some how I CAN find that one doctor that will say "I can and will help you". So far Susie...its not looking good. I am SO STUCK in this stupid HMO GROUP...you can't get out of it. If you can..I don't know how.

Thanks Susie for believing me and understanding that this problem exists. I get fed up with people I speak to that defend these doctors I am talking about. I LIVE it...I ought to know how I am being treated and ignored in hopes I will just go away. I have NEVER been treated like this in my life. Nothing even close..and of all the times when I have cancer. How can they be so cruel to someone that is just fighting for their life?

Chelee

Chelee · 08-12-2006, 03:35 PM

Barbara, Your right, only my pulmonary doctor seems to really be concerned about me. Its interesting how he is the ONLY one involved in my care that is NOT in this cancer center I go too. He is seperate from them and in fact I HAD to get a special authorization to see him through my HMO. I requested to see him since he FOLLOWED my care when I landed in the hospital from chemo. (Low ANC) He saw me about twice a day at that time for the entire 10 days. So my HMO let me go out of network to see him since he knew my case/problems.

My entire cancer team are all on the same page...meaning, who cares if I die. But he is NOT involved or tied to them and YET HE DOES CARE. He did NOT have to go to the tumor board meeting about me. I asked that he be invited. He actually went and this is one very busy doctor. I wish my other doctors at this center cared even a little bit of what he does! He runs his practice and does hospital rounds every day. Yet he made time to go to the meeting about me and my lungs. He is a OLD SCHOOL doctor. The kind I can't seem to find at this place anymore.

I do have an appt with him but its not until the end of the month. Maybe I can get in sooner since he is the ONLY one that seems to care. Thank you Barbara for your reply and support. I am just feeling so down I can't stand it. I hope their happy now.

Chelee

Chelee · 08-12-2006, 04:07 PM

Lani, You are one smart cookie. I wish I knew even a 1/4 of what you did! I CAN'T get any answers from my doctors if its TOO LATE to even do Rads if I could find someone that could do it without damage? No one seems to know when its too late to do Rads? Yet they MUST have some idea since they STRESS between 3 & 5 wks. (Where did they get that time frame...there must be a reason for it?) I'm at 11 weeks already...is there any sense to it this late in the game thanks to THEM dragging this out!

If I got a 2nd opinion...it WILL take time. HMO's take forever! Even two more weeks is a LONG time in my case it seems? I would love to go to Standford...I didn't know know they were top knotch in the radiation field. It sounds like the place to go! I don't think my insurance company would pay for this? I could check Monday? If nothing else I wonder if I could get anyone in the Rads dept at Stanford to talk to me over the phone about this? I can try. Thanks for all the info. They still might tell me I am TOO LATE for rads thanks to my screwed up medical team.

What gets me is they tell me NOT to worry about NOT getting Rads...but before they made this decision...I just HAD to get rads with my stage III cancer. I would be sorry if I didn't'. They STRESSED that to me. Now they tell me not to worry about it. (What am I suppose to believe!) Why was it SO IMPORTANT when they THOUGHT they could do it...and now its not!

The rads onc told me if my recurrance rate was 40%...he could knock it down to 10 %. Now its no big deal. He said I could NOT afford to NOT get radiation at that time.

Like you said Lani, the girl that was told to call me said it makes no difference in over all survial. If that is true...why do they PUSH Rads so hard on everyone? It must make SOME difference. I wish they would just be HONEST with me and tell me the truth...I dont know what to believe anymore. I am close to a melt down and its due to them NOT talking to me. I am left in the dark all the time no matter what I do.

I do know I need to get on some type of anti hormonal drugs asap if they can't do rads as you said. My oncologist WAS at this meeting about me...has she called me to tell me to come in. NO!!! She knows I am on NOTHING. We haven't even discussed what I will take! She says femara, and the other bigger cancer center told me Tamoxifen and Lupron shots I think they said.

I have to go get herceptin Monday so I will see if I can talk to my onc doc asap. This is putting so much pressure on me I am falling apart. I have never felt so out of control.

I do think I want to at least call Standford about my situation and I pray they will at least talk to me over the phone? Find out about these trials too if its NOT to late for me. I should of been DONE with rads by now...thats how LATE I am. Darn them!

Lani, THANKS for ALL the brainstorming for me. That means the world to me. You didn't have to do all that and you did. Your one in a million...thanks so much. If Standford handles the most difficult cases...I would be perfect for them. The question is if my insurance would pay for it as I don't have that kind of money. And if they will....how soon can I get there...and is their any benefit to doing rads this late in the game?

But thanks again! You gave me good info.

Chelee

Chelee · 08-12-2006, 04:32 PM

Jean, I know your right & I need to keep going. But I will be honest...they have really worn me down this time. I have been through so many head games with these people. I don't know how its even "legal" to do people the way they have done me? (Not to mention all the delays in my care?)

There are so MANY other wonderful women on here that has been through so much more then this and look at them keep going. I need to get over this and move on.

I DO feel frozen right now. I feel like someones beat me half to death. I have come so far for them to just RUN OVER ME AGAIN.

I need to find out from my insurance company that if I get another opinion somewhere...if I can get the tx at that place? (Which I don't think I can?) And again...I am NOT sure if there is any purpose to doing rads this late? By the time I get another opinion set up...it will be at least another two weeks at the speed these people work. I am going to check into it anyway...maybe some GOOD will come out of it some where like it did for you Jean.

Jean, Lani, Barbara, Alaska Angel, & Sandy H., I can't even begin to tell you how much it means to me that you have all replied and are trying to help me and just showing me someone cares. (Here I go again...just when I think I am all cried out, here comes more tears.) Thanks to each and everyone of you. If I could just find that ONE doctor that cared I would feel so much better.

God Bless each and everyone of you.

Your all in my thoughts & prayers.

Chelee

Chelee · 08-12-2006, 05:03 PM

Sandy, Your the first one that has told me they didn't have radiation and they are still here.

That does make me feel better. However I am sure SORRY to hear you didn't get rads due to skin mets (Thats awful.)

I wish I could email my oncologist. But they don't have it set-up so we can do that. I asked her a long time ago about that. A *third* party I like down there told me to SIT down and talk to my onc doc about this and explain how i am feeling. I tried to tell her...thats half the problem...my onc doc never has time for me...and won't make any. She has so many patients she runs us all through this place like its a MILL.

This nurse practioner I like went to speak to my onc doc for me to express how I am feeling. I THOUGHT things would get better after that? But the NP came back and told me that my onc doc said she is NOT upset with me...and there is no problem....this is JUST the WAY SHE IS. (Hello...whats that suppose to mean?!) That means she will never have time for me and I can take it or leave it?

Sandy, I do know at my next appt with my oncologist I am going to tell her how I don't think thats right how they all left me hanging. I am SUPPOSE to be an IMPORTANT part of my medical team and decisions if you listen to them. But yet they won't tell me anything no matter how I go about trying to get the information.

I am giving my oncologist one more chance. I WILL lay it on the table. Something has to change because I can't deal with this as it is. They show me no respect or compassion. How can they be so un-caring? I have shown them nothing but respect and been considerate of their time. I have had two different people down there try to help me straighten out this problem with my onc doc & our on-going communication problem. But the onc doc makes them think everything is fine....and yet nothing changes.

The more I work at fixing this problem...it seems the worse it gets. I just want to go SOME PLACE else for my treatment and I CAN'T. That is half the problem I believe. These doctors KNOW we are STUCK at their cancer center rather we like it or not and it gives them room to treat us anyway they want to and get away with it. Gives them all the power because we CAN'T walk away. (Which in any other case I ALWAYS DO.) I speak with my feet any chance I get! But I HAVE to go here...so what can I do.

Thanks Sandy...I will keep trying to resolve this...but I sure don't need all this when battling this misrable diesease. (And they "onc doc's" know it better then anyone. SHAME on all of them! This place is a joke...except for the infusion nurses...they are all AWESOME. Thank God for all of them...they really do care about us and will do anything for you.

Thanks again Sandy.

God bless you.

Chelee

Barbara H. · 08-12-2006, 05:16 PM

Chelee,
It doesn't help that there are women here who are worse off than you. In life, there is always someone who is worse off. However, when you are physically or mentally in pain or in fear, you need help, and that is why Christine founded this wonderful site with the help of her husband, Joe. They are truly angels. Know that you can come here anytime for help and that you are courageous and strong just to be on top of this and to be fighting the way you do. Besides breast cancer, your lung issues are concerning, and you need to be on top of that too.

Maybe Stanford is the place for you. It might be worth just giving them a call to consult with someone. I can't say for sure, but try not to worry too much about the time element. There is still lot of speculation and protacol with the treatment of this cancer, and a lot they do not know.

Best wishes,
Barbara H.

mts · 08-14-2006, 08:29 AM

Hi Chelee,

I do not recall your specific dx, but was wondering if brachytherapy would be of benefit to you. Its where "seed implants" are placed where the tumor was removed and you are radiated directly into that area without affecting any other tissue. The radiation is over a period of 5 days...
I attached a website depicting the seed implants.

www.cancer-treatment.com/breast_cancer_5.htm

Maria (MTS)

Lani · 08-14-2006, 02:22 PM

Stanford and USC have brachytherapy(both), intraoperative external beam irradiation ie beams and not seeds(both), accelerated partial breast irradiation with external beams after surgery (Stanford only). As I told you USC's randomizes patients between standard external beam 7 wk treatment, brachytherapy at time of surgery and intraop with" external" beam at time of surgery. Stanford randomizes between the two types of treatment at the time of surgery (although they may have dropped brachytherapy) and accelerated partial breast (7 wks worth in 5 days by external beam after surgery)

I hear UCLA may have brachytherapy but their radiation therapists seem to be a lot less specialized, ie one Doctor treating a LOT of different kinds of cancer in a lot of parts of the body vs one doctor treating breast, one head and neck, one GI, etc like Stanford.

Perhaps your insurance will refer you up to Stanford since your doctors don't know what to do with your unusual case. They are truly world class in radiation therapy, specialize in difficult cases, have extremely high tech equipment and methods (being in Silicon valley and having the Stanford Linear Accelerator nearby doesn't hurt) and the head of their new cancer center is a radiation therapist himself. Look up their Radiation Oncology department via Google. Good luck!