[Chelee]

Lu Ann, Thanks for sharing your very encouraging personal experience with me. I hate to hear you had a recurrance 2 years ago...but I LOVE hearing how you were NED for 13 years. (Wow...that is absolutely amazing.) I know it does happen...and that is what I am always holding on to. As long as I am still kicking and breathing...there is always hope. They seem to want to take it away from me...but frankly I am not listening. The more they do it...the more I want to SHOW them they are WRONG. They aren't God...they don't know for sure who will do well and who won't. I just wish they would at least pretend to be in my corner...just a little bit if nothing else.

As to becoming my own best advocate...I couldn't agree with you more. I knew nothing when I first started this journey...but I have learned so much since then and I am speaking up more & asking them lots of questions about my treatment plan and care. (That when it seemed like things got worse!) Everything I have been handed to read from my surgeons office says to be INVOLVED & ask questions about your cancer treatment. So I do that...and will have questions prepared...but they just won't answer them for me. I am just told they don't have time. Makes me mad because last time I checked they were getting paid for treating me. I have a RIGHT to know what treatment plan they have...and if my PET scan lite up, etc. They don't want to tell me anything. They are so vague when asked a direct question...and so good at avoiding me. (And its NOT just me...its their over-all way they seem to run things at this cancer center.) Seems like its all profit driven...verses caring about the patient??? I have heard so many others complain down there...so its not just me. This is a new wing they built on down there...so its not like they are a big major cancer center thats been there a long time.

Since I found this HER2 support board I have asked them lots of GOOD questions. They have no idea how much I have learned from this board alone about my her2 status. They liked it better when I knew NOTHING. But things have changed. Don't they realize by them ignoring me and NOT telling me anything is what forced me to this board and to do research on google. Knowledge as we all know is power. If I can't get anything out of them...I HAD to go else where. I have lost pretty much all faith and trust in them. Its scary.

You mentioned getting a second opinion at the Cancer centers of America. I have been to their website. But like you...thats where I am at now...I don't trust or believe these people and I have a 2nd opinion on June 28th at a well known trusted cancer center. I am meeting with their radiology Dept and other members to go over what has already been done in treatment for me. (Because one...I questioned my cancer centers choice of chemo regimen for MY prognosis.) I want to see if this well known cancer center will tell me they agreed with what they treated me with?

I can't trust my cancer center at all with the chemo or anything else...so if I am moving on to Rads...I would rather go to this other place that has been treating cancer for 30 plus years. Its further to go too...but just like you did...if I HAVE too...I will get a room down there and stay there till my rads are over. (Or if they want to do more chemo?) Its all up in the air till I get to this other place. But I have to go there for my own peace of mind.

I am so happy for you that you found the CTCA and got your rads done. The worse part for you was probably staying there for the 6 weeks? That is what I am dreading after I go to my 2nd opinion. But I think...whats six weeks if I have TRUST in them and I KNOW they have the experience to take care of me...unlike the place I am at now. The place I am at now seemed shocked when they found out I was going to this other cancer center at this point for another opinion. But my oncologist tried to play along like that was a good idea. (yeah sure.) She didn't fool me.

Thanks so much for your support Lu Ann. Your post alone gives me more hope then anyone down at my cancer center has ever given me. I really appreciate you sharing your story with me. I still can't get over how you went 13 years NED. Here's praying that you get another 30 years of NED since you visit to the Cancer centers of America.

I see in your other post to me you posted the phone number for them...and their website. I have been to their website...but I haven't called them. I think I will just for the heck of it. I would be interested in what they have to say. I am like you when it comes to flying. Yikes...I have never flown before and it scares me. I am not sure if I could do it or not? But I am going to at least give them a call...the more information I get...the better. Thanks for getting all the information for me...that is so nice of you. I would like to have them mail me that packet of info also.

Thanks from the bottom of my heart. Its all you REAL people that give me hope...I certainly don't get any from the place I go. Thank all the people that are BEHIND bringing us this board. I personally am not sure what I would of done without it.

Lu Ann, your one in a million.

Chelee