What CAN I do?

[Chelee]

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]

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.]

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]

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]

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]

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

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

[mts]

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]

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!

[Bev]

Hi Chelee,

Re the seed implants. I think they're for lumpectomy only. I was told I didn't have enough surrounding tissue, I think 1cm in all directions, to be able to do it. That may leave you with just the external beam to explore.

Although it's not usual and customary, I was offered tamoxifen before rads. The doc said I could choose to start before or after rads. I don't know which hormonal is right for you, but I think you should maybe start asap.

Your in a tough spot. See the pulmo doc and get the next rad opinion. The stats were compiled before Herceptin was used on early stage. Maybe Herceptin will work against local recurrences as well. Best of luck. BB