I am concerned, & yet they put me off?

[Chelee]

You guys have it right when you can see through my words that I have lost trust in my tx team. Its such a long story so I won't bore you...but being NEW to all this...I now know beyond a shadow of a doubt...my first oncologist knew my prognosis was poor and was to save money on my care. (No one has to believe it...but I do!) He knew for three weeks my wbc was in the dirt and would land me in the hospital. (I didn't know anything about my counts...other then he kept saying they were really low.) Again...long story...but he almost killed me! He made me suffer a week of not being able to breath & other problems before a ambulance had to take me away.

He was not giving me that "standard of care" as you call it. But its been five months now & I have picked up and learned alot more about us Her2/Neu women. I have found out...at least here where I live....that the women with a better prognosis...meaning no positive nodes...and early stage are getting better care quicker. People like me, stage IIIA, Her2/Neu 3+++, Er & Pr Positive, 5 of 1 positive nodes...and you name it...they don't want to spend the money UNLESS you are really proactive and push for everything. I got NOTHING till I finally came to this board and one other and started reading and learning for myself. That's how I found out I was SUPPOSE to be having Neulasta after my chemo's of Herceptin, Taxotere, & Carbpotin. My wbc was down to 116 and my oncologist NEVER once even mentioned Neulasta to me. I knew nothing about it. He choose to let me go another round of chemo and put me in serious condition. So I am rather frustrating with all this.

Since I changed oncologist...and have become proactive in my care...she seems to get me everything now. (But I should of never had to went through what I did to even get the care I am now.)

I blame lots of this on the HMO's...but thats justs my opinion. Had any of them been honest with me from day one...I wouldn't questioned what they tell me. But I just got some of my reports from their offices and they have held back important information...then when I question them about it...they make up excuses.

For instances...one report from a CAT scan I had while I was layed up in the hospital says I have an enlarged heart. (This was NEWS to me.) I thought maybe the herceptin? So I asked my oncologist and she said you can't tell those things from a CAT scan. (Then WHY was in in the report??!!) She said they just write things like that. (Say what!!!)

Then I mentioned those TWO puffy places I have on EACH SIDE of my neck right at my collar bone. One one each side. They are BIG! I finally got a chance to ask my new oncologist why those were there and getting bigger? She said for me NOT to worry...those puffy spots where the lymph nodes are...are just full of fluid from the steroids. (Decadron) Come on...I only use Decadron three days each MONTH. Not daily. I am worried its cancer and thats why its getting bigger. Makes me think my chemo is not working and she just doesn't want to say. She said those puffy places are big...but they would be HARD to touch. She said its very normal.

So do ANY of you women have these puffy places on the sides of your neck? Mine are big. Plus I forgot to tell her the one on the right side was there BEFORE I even had my surgery...meaning BEFORE I ever had any steroids. Which I will tell her next time I get to talk to her.

I know your suppose to watch for big swollew places around your collar bone. So why are they telling me to not worry. I have asked to see my combo PET/CT SCAN several times and they always say I can...but it never happens. I feel like they are hiding alot from me.

I have to fight for everything it seems or I won't get it so they can save money...not me. Now if I ask...I get it...but what damage has been done by ALL the delays and down times they have caused me. Gee...I am just now getting Neulasta, Procrit, and IV iron infusions that I knew nothing about.

But you guys are right when it comes to the oncologist trying to take care of the cancer first without a bunch of inturruptions from seeing other doctors. I guess its just because I am finding out on my own they have been withholding things from me...so I am losing far too much trust. And in these HMO's...your STUCK in a group and can't switch doctors....and they know it. (That gives them alot of control.) I am thankful for insurance...don't get me wrong...but I wish I could switch to new doctors that didn't all work together.

Someone asked where in CA I was..they were up North. I am down South. But thanks for the offer. I do appreciate it.

Lu Ann, That T.I.A attack you had sounded pretty darned terrifiying to say the least. You mentioned that one of the chemo drugs you were on could cause blood clots. That is the SAME reason I worry....since my DX I have read we are all prone to blood clots on these chemo drugs. Thats why I was so worried when my MRI showed vasular problems. I don't want to run into problem like you had to go through. You poor girl. We all have enough to deal with..we don't need all these added things IF they can be prevented.

Kristen, I asked about having that CA-125 ran due to my mass on ovary. My oncologist said as you did...they are unreliable and she rather not do it since it really won't tell her anything. Argh! I might keep pushing her later just to see one time what it says. I need a little peace of mind if that is even possible.
One more thing Kristen...THANKS a million for telling me to go get release papers for my medical history. I just had hubby run around and do that for me while I did my chemo last monday. I am NOW going to get ALL my medical papers and see what they all say for myself. My husband said they were asking him WHY he wanted the release forms. (He said, just so we could have my wifes medical history.) They just smiled and gave him the papers. lol
I bet I will find alot of things out in those when I get them....I already learned alot from the FEW I got from my new oncologist that she did not want to give me. Thanks for the suggestion.

Becky, I agree with you that the MAIN thing I want to know right now is this deal I have with the NODE PUFFINESS? Do you...or any of the other women on this board have it...and IF so...did your oncologist tell you its just from steroids? I am NOT buying it since the right side of mine was a LITTLE puffy BEFORE I even had the surgery, or sterioids. Those big puffy nodes on each side are worrying me more then just about anything. You would think the chemo would keep it down? I pray my chemo is working?

Thanks to all of you for your support and listening. This is NO easy road as I don't have to tell any one of you that are here. Its rough. It sure turns your life unside down. Thanks again to all of you that have listened...cared...and have helped me out. God bless each and everyone of you.

And if any of you made it through this big long post...I sure appreciate it.

Chelee...