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Inoperable "huge" wrapped around heart, trachea...


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Guest bean_si (Not Active)

5 minute visit. It didn't need to be more I guess. I pride myself on driving all that way home and not crying. Tried calling my sister but as usual she's unavailable.

Tumor is completely inoperable. He doesn't think anyone would touch it. Blood vessels all over the place. Wrapped around my heart and trachea (I knew the pressure in center of chest wasn't indigestion). Under vena cava by pulmonary artery.

Sitting here, wishing my dog could talk or at least understand what I was saying.

I'll be taking care of practical matters in the coming days.

Cat

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again I feel shame at feeling sorry for my own situation when you are facing THIS. go ahead call me a jackass.

Is there any more chemo they will try?? Is radiation out of the question completely?? with my moms, when it wrapped around her heart. Taxol/carboplatin shrunk it enough but it came back and re-wrapped around her esophagus.

what about clinical trials. try calling American Cancer society and see if they can get you in touch with another onc. who is teaching or needs patients for clinical trials.

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Cat,

Treatment options?

I know that for any of us, surgery is the primary hope, but I also know that many of the board are hanging on without surgery and still enjoying a quality of life...don't give up, Cat.

I agree with seeing to pressing "affairs", one of my big pushes was to have a will written and make sure everything was taken care of in case I had a face-to-face with a beer truck or whatever... The big thing I have learned in this cancer journey is that if there is something I feel I NEED to do, I'd better get it done...if there are things I WANT to do, I should see to it that I do them... I've learned to LIVE with the fear that cancer put in me - the fear that I really won't live forever and that I don't decide when I go. Since I can't do the deciding, I'm going to eat dessert first, licking the icing off the cake before biting into it...carrots and cold spinach are the LAST THINGS I'm going for here...

Hang in there, Cat. Digest this news, remember to breathe - meditate, yoga...you know how to do it....let it out and get it under control. I'm right here, let me know what you need.

xxoo,

Becky

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Thank you Shelly and Snowflake for your kindness to me.

As to other options or treatments, the "verdict" today could explain the feeling I've been getting that my chemo onc and rad onc. think my treatment is over. I don't know how better to explain it but some of the remarks amount to "okay, your life was extended. what more do you want." My primary even said, "what has been - 8 months? Well most people with your cancer only get 3 to 6 mos."

I just wish I had my daughter here to hug her. I've tried hugging my dog but she keeps wiggling away. :roll:

Cat

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Cat

Wait one minute please! What the heck is going on? Last week the consensus from your scan was that it may not be cancer at all-- scar tissue etc. Are you sure the surgeon said it was CANCER wrapped here and there? Or just some "stuff" wrapped here and there? Do you have anyone who you can trust to talk with your doctors? Do your doctors even talk to each other?

I don't think you have ANY answers right now. Just the same confusion that you had before, which is "What is the stuff in my lungs?" Maybe the answer you do have is that that surgeon isn't going to be taking the stuff out. You know no more than that.

So.... who is the new onc, and when do you see him or her?????

elaine

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UNLESS EITHER OF THEIR NAMES ARE JESUS CHRIST. THEY CAN'T TELL YOU WHEN YOUR GOING TO DIE. TELL THEM TO GO SCREW THEMSELVES AND YOU WILL FIND SOMEONE ELSE WHO WANTS TO HELP YOU FIGHT THIS CRAP-*ss DISEASE. TELL THEM YOUR NOT ASKING THEIR PERMISION TO LIVE. MAYBE THEY SHOULD GO LAY DOWN IN A FREAKING PARKING LOT AND LET A CAR RUN THEM OVER AND SAY TO THEIR ROTTING BLOODY BODIES, OH WELL YOU GOT THIS MANY YEARS OUT OF NOT BEING HIT BY A FREAKING CAR SO STOP BOO-HOOING ABOUT IT.

DAMN I AM MAD AT THESE DUCK FARTS.

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Ok

While I was posting my post, Cat posted another post that I just now saw.(Don't ya hate when that happens?)

I stand by my previous post, however, and also want to join in Shellie's latest....

Talk about anger.... There are lots of places that deserve anger....

I rant about them all the time: the medical profession, our govt for supporting the sale of cigerettes, the drug companies etc etc.

No one really listens, though.. No one replies much. Mostly because we have been "trained" to behave like sheep....

Can you tell I am really mad now???

And another thing, Cat.... You say this "could explain a feeling you got"....

Feelings you get are not facts that you are receiving..they are feelings you are having. You need more direct answers, which is why I asked if there was anyone who could speak to your Drs for you. You can't make any informed decision without the facts. That's a fact, (I think!).

elaine

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DISCLAIMER: I am not saying that all local docs, labs, hospitals, are bad. Don't feel you have to defend your personal, local wonderful docs. I'm not talking about them. I'm talking about the folks Cat has described and the way she has told us they have dealt with her.

Cat,

I'm going to speak plainly here-one person who has Lung Cancer to another person who has Lung Cancer. One person who has Lung Cancer who wants you to live at least as much I want me to live:

Why are you going to the local docs for their opinions on your prospects, when you have been telling us all along that they have close personal and professional relationships with one another? When, according to you, they have sent your slides off to another path lab without following proper procedures for this kind of evaluation and ONLY after having received an independent path report (from MD Anderson) that is COMPLETELY different from the original path report generated by your Oncologist's Partner's Brother, the local Pathologist when you were first diagosed? When you have told us that the Onc has been deceptive at worst and disassembling at best?

If you continue to do nothing there's a pretty good chance that the cancer is going to grow and spread. And you are telling us that that is what these guys are proposing...no chemo, no radiation, no surgery; in short no treatment. (I have actually known a couple of people over the past five years whose cancer just stopped growing, even though they were no longer having treatments. So I never give up hope on anyone, but even I know this is a very rare occurance.) Why do you choose to believe them about your treatment options and prognosis when you believe they have been dishonest in their other dealings with you?

No one wants to believe that our medical providers would DO something like close ranks in order to protect one from a possible medical malpractice action. But it happens all the time. We're talking reality here, Okay?

GO ELSEWHERE FOR AN OPINION ON YOUR OPTIONS....THEN GO ELSEWHERE FOR THE TREATMENTS once those options are made known to you.

Do not waste your time with these guys anymore. They aren't going to help you. You're status as a patient changed when you questioned them about the potential for a misdiagnosis and then you found a way to prove that they had erred.

GO ELSEWHERE, CAT, and don't wait. Time is not your friend in this setting. Doing nothing is your enemy. You are basing your opinion on how to proceed on the recommendations of people you do not (and in my opinion should not) trust with your life.

Go ELSEWHERE, Cat....Go back to MDAnderson. Or another large cancer center. Please.

One other thing.... there are very talented and skilled thoracic surgeons. Just because the one you saw doesn't have the skill or experience to tackle your tumor doesn't mean that others can't do so and do so successfully....but you aren't going to find these stars of the surgical world in your local community medical center unless you live in a town that has a world class hospital. You got to go out and look for them, then convince them that this is a risk you're willing to take and that you have the fight in you to live through the surgery, the recovery, and the crap you have to deal with afterward (chronic pain, shortness of breath, etc.) for the chance to be able to LIVE longer.

So extend those claws and dig in, Cat...time to pull out one of your Nine Lives and show the locals how it's done...

PS One of the most satisfying moments of my life was about 4.5 years after diagnosis. At 3.5 months after dxd a lady in the medical community let me know in no uncertain terms that I was "terminal" and she didn't feel resources should be wasted on someone like me. Fast forward to 4.5 years later and I run into this person again who is just astonished to see me in the flesh. I told her yes...I"m still here...no thanks to you or those like you. The absolute best revenge, Cat, is to live well. I want you around to tell someone that five years from now.

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I agree, Fay. but what should she can she do about her HMO status?

Also, IF they are doing this because they fear a lawsuit, I don't think so...I doubt they could be held accountable for misreading a tumor pathology in something as ethereal as cancer cells sometimes are. However, IF they are doing some fraud to try to cover up a human error out of pride or male ego, then maybe...we should form a posse after them....

I say they are doing it out of pride, if anything. Mostly I think they, like most mediocre doctors in out of the way places like where I live and where Cat lives, have small minds and big egos.

elaine

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Yeah, HMO's. Yuck. They almost didn't see me today because I couldn't find my referral paper. I said, "Well, just called my primary." The girl goes, "No, they're probably at lunch. We have to have the paper."

G*d forgive the doctors I've been dealing with. I like Shelly's advice but I don't think they'd lie down in a parking lot.

That's okay. I'm angry enough to run over them.

I've been watching Finding Nemo for the tenth time - to keep my spirits buoyed. (Finding Nemo - buoyed - get it? bwahaha)

I'm watching the part where Dorie says to Marlin, "You know what to do when life gets you down?" Then she starts singing, "Just keep swimming, swimming, swimming. Just keep swimming."

Okay. Alright.

Just keep swimming, swimming, swimming.

Cat

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PS One of the most satisfying moments of my life was about 4.5 years after diagnosis. At 3.5 months after dxd a lady in the medical community let me know in no uncertain terms that I was "terminal" and she didn't feel resources should be wasted on someone like me. Fast forward to 4.5 years later and I run into this person again who is just astonished to see me in the flesh. I told her yes...I"m still here...no thanks to you or those like you. The absolute best revenge, Cat, is to live well. I want you around to tell someone that five years from now.

Fay,

I am SOOOO thankful this woman had no say in your medical treatment. I'm sure she fueled many of your nightmares and her voice joined that of the one in your head to niggle you with doubts, but she was wrong! I hope that if she is EVER in any way in contact with another "terminal" patient, she will have learned to keep her mouth shut and not set limits on those that don't need them. (Kinda like when my ex-husband would tell me I was fat, as if my own closet didn't tell me that! Geesh!)

HANG IN THERE, CAT!

Becky

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There are ways to push for the care you need, though I have to admit it is time consuming, a pain in the butt, and that the recent US Supreme Court rulings on HMOs and liability for failing to provide care is a disappointment. If Cat lives in Texas there are state laws in place that will protect her rights to adequate and competent care(passed after the orignial Texas cases that were the basis for the recent US Supreme Court hearing I referenced above.)

What's the name of your HMO/Insurance provider, Cat? Is this a pollicy that would fall under Federal supervision?

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