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WRONG FREAKING DIAGNOSIS

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Guest bean_si (Not Active)

Finally got report from MD Anderson. It's not SCLC. It's NSCLC poorly differented with suggestion neuroendocrine differentiation. I've called my onc - 30 minutes go - had faxed him report. "They're talking about it" and will get back with me.

I KNEW something wasn't right.

Cat

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Guest bean_si (Not Active)

I'm dead. To quote:

Because of its aggressive clinical behavior and poor prognosis, large cell neuroendocrine carcinoma should be recognized as one of the poorest prognostic subgroups among primary lung cancers, and therefore novel therapeutic approaches should be established.

and

OBJECTIVE: Large cell neuroendocrine carcinoma of the lung is a newly recognized clinicopathologic entity. The clinical characteristics and optimal treatment of patients with large cell carcinomas are not yet established.

http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

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Now, Cat ((((((((((((((CAT)))))))))))))))))))

Let me look in medline a bit and see if I can find something more recent, closer to home, and that addresses clinical options, okay? Give me a few minutes here....

I understand that you're mad, but don't be givin' up on that one lousy report.

XOXOXOXOX

MaryAnn

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Guest Phyllis

You must have been on the internet. I do that often and always end up freaking myself out. You can't believe everything on the internet. I am sure there have to be clinical trials and doctors who specialize in treating this type of cancer. My doctor just told me that gemzar had less than 5% chance to treat my cancer. There are others on here that have done well with it. And my other oncologist in MS says I have lots of options. You just won't know until you talk to the doctor. I know it's hard but try to calm down. Keep us posted.

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I am so sorry you have had the rug pulled out from under you. Please get your opinions and make your decisions. You are very much alive. Many of us received very bad statistics - which proved to be untrue for our personal prognosis. Please remember our motto. You are not a statistic. I will keep you in my prayers.

Lisa

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Cat

Some time back I emailed you and asked if you were sure you had sclc because it didn't make sense to me. I told you about what had happened with Carlene's husband, which it turns out is the same thing as with you. It's kind of scary that I did this, but anyway, the reason being is that he is doing quite well. SO pls don't get too upset because there are options for this and trials and it may end up better than SCLC.

I know that you must feel betrayed by your medical providers, and my heart aches about that. But there are still things to do and, knowing now is better than knowing later.

Pls PM me. Also look at Carlene's posts because there is info about his treatment.

Elaine

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Cat,

That is what my mother had. There was a study out of Japan, though it was small that LCNEC responded very well the combination chemo - CPT-11/cisplatin.

Also there are Somastatin type treatments that are being used in Europe and I believe there are trials in the US.

Rb is an oncogene and I read that it *might* be correlated to LCNEC. I think there is a trial for a Rb vaccine

I will post the japan study once I find it

There still is hope and different options

John

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CAT! WHOA!! Back up the bus, dear!

Second opinion is a doozie, I'll admit, very different from the primary one...aren't you glad you went?? It truly was worth all that hassle...

NOW, you DO know what you are fighting - stay off the freakin' 'Net!! STOP! Right now is NOT the time for you to go on a "fact-finding" mission. You need to stop, take time to adjust to what you just found out and calm down. Breathe.... Get your emotions under control (as much as you can) and form your plan of attack.

There is NO ONE saying you cannot be a breakthrough patient and win the battle over whatever monster you are fighting (one-eyed, hundred-eyed, scaly, slimey...easier to sneak up on a one-eyed monster, but not if that one eye is on a stalk on the top of his head). Do NOT give up the fight before it has even began. Work up to it and face your monster, head on. It's a little less scary to know what it looks like instead of allowing your imagination to paint an even uglier picture.

Form your plan and get under motion. This was a setback, BUT it's a GOOD setback! Really! If your doctor had continued to treat you for the WRONG thing, the story would have been worse. You DO have a better chance being treated for what you HAVE! Please, Cat...meditate on it. You'll see the good here, there is some!

Take care, lean when you need to, that's why we're here!

xxoo,

Becky

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Cat

Maybe I am wrong about Carleen's husband. His DX was changed to Atypical carcinoid. Don't know if that is the same as yours. Maybe I was thinking about John's mom. I do know they at first thought Carleen's husband had SCLC and many months later it was changed.

Elaine

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The study John sent a link to looks promising, Cat. Plus, you may be eligible for surgery now. It seems it often is mistaken for sclc. I do think that Carleen's husband's case is similar since I think he is doing a Somasatin trial. You are in my thoughts.

Elaine

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Oh Cat,

I don't know what to say, you must feel that your world just fell apart. Be mad and upset for awhile and then FIGHT girl. Check out every clinical trial there is for this cancer.

Your posts tell us you are a fighter and that you don't take no for an answer. So get going and beat this dam* thing.

Ginny

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Guest bean_si (Not Active)

Okay, sorry if I'm not responding to individual posts but I'm still kinda stress & my brain is barely working.

My talk with the onc: What does he think? That I'm gonna sue?

He tells me that even though it says NSCLC the comment says large cell neuroendocrine cancer which means SCLC. No, I said, it doesn't. LCNEC has only been diagnosed in the last few years. It's a rare cancer and is not small cell.

He backs up and goes "Uh, yeah".

I tell him most people I "know" with SCLC had their tumor virtually disappear after chemo/radiation. He agrees. I tell him that's what made me suspicious that I still had a 5+ cm. tumor. He agrees. (Why wasn't he suspicious?)

I say doesn't this mean I can have surgery? He agrees but says it could be both small cell and non-small and maybe I need another biopsy. What? I had THREE - only that last got live cells. 5 slides were sent to MD Anderson.

He's acting like MD Anderson could've made a mistake. No. Somehow I KNEW the dx of SCLC was wrong. Now he says he'll call them Tuesday and discuss the possibilities. Possibilities? MD Anderson is supposed to be 5 years ahead of many typical cancer centers in dx. and research. This is a fairly new diagnosed cancer. I say they are right.

Thank you all again. Elaine, thanks for the post that it might not be SCLC and John thanks for your signature. I kept looking at it and thinking: Maybe I do need a second opinion (which I paid for). Thanks for everyone even if I don't thank you by name cuz I'm a wee bit stressed right now and am having trouble my name. I think I need a Krispy Kreme donut.

Oh, BTW, the reason I got the news is because I called MDA personally and had the very nice woman there fax me the results which I had faxed to my onc.

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Cat,

You are NOT dead....you are NOT a statistic. Don't blame you for being severely stressed over this mis-diagnosis mess. You seem to be handling it well though...good for you to have all your facts and figures right on the tip of your tongue....don't let your Onc backpedal.

Seems like this dx is being seen more and more....I noticed a newbie on the welcome forum today who was initially dx'd w/sclc and it was just changed to LCNEC.

Have another Krispy Kreme on me....I'll be thinking of you....Mary

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Cat,

You may want to check out one of our alumni members Terrie, who was diagnosed with neuroendicrine carcinoma. She was first misdiagnosed with sqaumous cell. Mabe you can e-mail her for information.

Prayers,

Cheryl

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Cat,

I am so sorry you are having to deal with this. One "good" thing is that type of cancer is a slow(er) grower than sclc so you do have more time for options.

You will be in my prayers!

God Bless,

MO

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Cat,

I don't even know what to say or where to begin. John's post sounds very positive and everyone has given you excellent. practical advice. Keep us posted. I am sure there must be a Krisy Kreme trial going on in your area :P . Keep us posted on how things go.

Rochelle

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Okay...this is just a fork in the road. Admittedly a lousy dang misdiagnosis fork....but it's not insurmountable.

Breathe....focus....and just go after this with the same positive conviction that you intend to exercise your options and go after the beast!

I know this must have just rattled you bigtime. I think it would any of us....but do NOT let it damage your positive intentions nor your hope! Those are two of the strongest weapons any of us have....altho I gotta say, having the right diagnosis helps too, eh?

Hang in there....we're here for you....breathe....and let us know what the revised game plan is...ok? I'll be thinking of you....sending positive vibes and prayers.

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Cat: If Krispy Kremes could cure, I would never be sick! The Krispy Kreme store has "Peggy's Favorite Place" stamped on the window. They maybe don't cure, but they sure can make you feel better. Have one for me, too

John: Wow! That was an outstanding link for Cat to read and so hopeful. Thank you for jumping right on that for her and getting it posted so quickly.

Becky: You always seem to know the right things to say - you are such a blessing! Are you really a psychologist disguised as a Snowflake?

Everyone: I think it's wonderful that we all have a place like this to come to give and receive help and encouragement. I'm so glad you are all here to help Cat and everyone else. All of your posts are always so helpful and encouraging.

Cat, I would have been extremely upset as well, so I understand completely your first reaction - I would say it was a very normal response. Aren't you glad you have all this knowledge from everyone who has posted so far and they are right at your side almost the moment you cry for help. Did you see how quickly everyone jumped in to give you encouragement and GOOD SOLID INFORMATION!!!

God loves you, Cat, and He is with you constantly - draw from His strength and the strength from everyone here. You are very much alive and tomorrow the sun is going to shine (well, I don't know about in Texas), but Sunday the big Indy 500 race will be televised in Texas (but not here - us Hoosiers have to listen to it on the radio - bummer), and then Memorial Day will come, and then next week will come, and then the 4th of July, and then Labor Day, Thanksgiving, Christmas . . . . . . and sweetie, you are going to be here to enjoy it all!! :?:?:?:?:D:D:D:D:P:P:P:P:lol::lol::lol::lol:

God bless you,

Peggy

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Slow down Cat, its not over and your still breathing. I know this must have hit you like a ton of bricks but there is always hope. Take it one day at a time and live each moment. Easier said than done but can be done. My prayers are with you that the Drs. come up with the treatment plan that suits you and is successful. God Bless.

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Guest bean_si (Not Active)

I noticed MD Anderson used Kermix immunostaining & found it positive. I tried various searches on Kermix only to find 'Kermix, knight of a thousand stupid deaths' and one about 'Kermix, the Dancing Sausage.'

At least I got a laugh for the day.

Then I found this comment on histonet:

Question: "I have a Pathologist requesting a broad spectrum screening cytokeratin called Kermix. Is anyone using this?"

Response: "Who is this pathologist? I was at the AFIP when our keratin rabbit bit the dust. I was part of the team that developed Kermix. Actually, we wanted to call it the "BOZO" antibody, but our pathologist didn't think it would be appropriate to see 'The Bozo antibody was used on....' in literature, so we named it Kermix. If I remember it was a 2:1 mixture of Dako's cytokeratin cat # M701(don't remember the clone) to Bectin-Dickinson's AE1/AE3 antibody. At the time Fluffy died, back in 1987, there wasn't many reliable pan cytokeratin antibodies available. Still would have liked it to be known as the Bozo antibody though."

How weird is that?

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It's not just weird...it's way beyond my ability to interpret! Like I said, I'm sorta new at this and I'm not dumb...but sometimes technical language seems MEANT to confuse, doesn't it?

I recently floated a question to a friend who's a med student, regarding doppler ultrasound. She sent back an explanation in HER words and then one straight out of the textbook. The latter....well, it may as well have been instructions for rocket science for all the good it did me. :roll:

I wrote her back and said I didn't understand doppler U/S any better than I do the weather!! 8)

As has been said around here on numerous occasion, Cat....don't get TOO crazy reading stuff on the net! Or at the very least, if something captures your attention...print it out and ask a medical professional about it before you put stock in it...ok?

Kermix the Dancing Sausage....eh? That one, for some reason, reminds me of some of the spam IM's and emails I've been getting lately :shock: Cripes, even the Muppets aren't sacred anymore....huh? :roll:

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