Be honest, is it just me or what?!

[Chelee]

When I was DX & went to the cancer center closest to me...they handed me all these folders at each stage of my treatment. Patients rights that you get every where you go. How they ENCOURAGE you to be involved in your tx plan and ask questions. How you have a RIGHT to know your tx plan and all options available to you. That all options WILL be explained to you along with benefits & risks of each tx.

Then I got to the chemo part of it and everything went down hill. No one tells me nothing as far as what THEY plan to do with me. I will read on one of my PET/CT scans something like this "enlarged lymph node II in right carotid space, increased activity". So I ask them.. "Whats that mean?" I am told its FINE. I am scared reading things like that. Why won't they just take the time to explain why my PET scan says something like that if its fine?

Why do they hand out these sheets from the hospital saying they WANT you involved in your tx plan...and it explains why its so important that you are. They say its OUR RIGHT to have everything explained and have a say so in tx. But its just NOT happening here for me. It could cost me my life at this rate.

Even today...I got for my 2nd Radiation oncologist visit. Was put in CAT scan, tatoo'd...and told to get dressed and come back Friday for a x-ray...then after that I would start rads. I kindly asked the onc nurse that told me that..."when am I going to talk to the Rad onc doc about what he is going to do to me and where? (I have MISSING ribs on that side and my surgeon is very concerned about them radiating that side without doing major lung damage.) So I NEED to know what this Rad onc doc plans to do with me...I am NOT built like everyone else. My surgeon told me to ask them.

Their booklet they handed me said ALL the SAME THINGS...that the Rad doc would explain everything to me at the consult. And how they WANT you to be a part of your treatment, etc.

So I nicely said...I really need to know what he is going to do so I can better understand this. I said its all new to me. She said "Well...I guess I can talk to him and SEE if he will LET you come in a half hour early on Friday before your x-ray so you can talk to him".

Is ANYONE ELSE here having this type of problem in all areas of their tx? I am JUST going by what THEIR OWN booklet said that they handed me to READ. It said everything would be GONE over and explained in detail. It even said after my CAT scan and tatoo...when they knew what they were doing...I would be HANDED my tx plan and the Rad doc would go over it with me. I was handed NOTHING today other then an appt card. He never talked to me.

Who could I talk to at this hospital WITHOUT stirring the pot to much and making them all mad at me? I just want answers. I am trying to stop recurrances. No one has addressed these big puffy deals on the sides of my neck that I have had and I have been asking about them since Feb! They just say they don't know what they are...but don't worry...because they aren't hard to touch. I need to find out what they are!

Does anyone know how I can get some help here? Who I can talk to at a hospital? I don't want to make waves...I just want the doctors to treat me that way I have been my ENTIRE life...like a person. They make me feel like since I have stage III bc I am going to die anyway...so why bother with me.

Can anyone help me...I am at my wits end. I would switch to another hospital but we can't...we are STUCK in this group plan through the HMO.

I don't see anyone else here having problems getting things explained to them. Everyone here seems to like their onc. I am 49 yrs old...and I have had quite a few doctors through my life and they all LIKED me, and still do...I am a GOOD PATIENT. I don't deserve all this...bc is stressful enough.

Chelee