WRONG FREAKING DIAGNOSIS

[Guest bean_si (Not Active)]

I think there are times you just get to a wall. I'm there now. I was diagnosed with cancer November 11, 2003. I never cried once - not during the chemo or the radiation, not when I faced it all alone. But last night and today, I'm crying.

Last night, my puppy jumped up and started to lick my tears. Do tears taste good to dogs? You know what? I think they do. I think God put something tasty in tears to make dogs lick them away. You think your dog is trying to comfort you but in reality she's thinking 'Wow! This tastes good!'

Okay, now I'm laughing. Boy am I strange person.

Cat

[Addie]

Best therapy in the world......dog kisses! I have to put a picture of mine in my avatar. I've got two....a chocolate male and a vanilla female!! Two mutts rescued from the pound.

Maybe it was time you cried. It IS a release and sometimes we need that. The only way to get beyond such emotion is to move THROUGH it....not try to suppress it OR move around it.....but THROUGH it. Feel it fully....so that you can then move forward.

I hope your tears washed away some of the frustration and fear and got you back on track and in fighting form. You're smart...you're in charge of your own health, involved....not just a passive participant. So...now you've got new information and you've cleared your head a bit, cried a few tears, gotten a wonderful face wash and it's time to go back on the attack again....advocating for yourself, asking the right questions....working towards kicking this nasty thing to the curb....right?

And as for dogs licking tears......hey, they lick a LOT of other places that make a tearful face sound gourmet....but we won't go there, ok?

Last night, in bed...my female was sniffing my hand where the chemo line had been....and then she very gently started licking my hand. You cannot convince me that our dogs don't sense, smell, KNOW what is going on. Even my male, who is sort of grumpy....the Walter Matthau of Lab/beagle mixes....has been especially "nice" to me lately!

Grab that little cutie of yours and use the snuggles for the great therapy they are!!

[Guest bean_si (Not Active)]

Last night, in bed...my female was sniffing my had where the chemo line had been....and then she very gently started licking my hand. You cannot convince me that our dogs don't sense, smell, KNOW what is going on. Even my male, who is sort of grumpy....the Walter Matthau of Lab/beagle mixes....has been especially "nice" to me lately!

Grab that little cutie of yours and use the snuggles for the great therapy they are!!

Hey I think you're right about the chemo. My wee puppy is a toe biting, growling brat. But she always gently sniffed and touched the hand or arm that was injected, then would look up to me to see if it was okay.

[Hebbie]

I am so sorry you are dealing with this mess right now!!

I was thinking that since your local onc. is now dissagreeing with the MD Anderson diagnoses -- perhaps it is time for a third opinion? I think there is a post on here somewhere (from John) that list some labs that you can send your slides to to have an independent biopsy done. I'll try to do a search and see if I can locate the info for you.

[Haylee_38]

Dogs are great and can be such a comfort. I have three saint bernards

and I was the care giver for my mom during her fight with lung cancer.

My female saint Baylee who had never slept anywhere but in bed with

me and my husband. She began sleeping at my moms side and when

mom was put in hospice she would just lay in her bed and only get out

of it to go potty. She to would lick her arm after mom had chemo.

As everyone probably knows saint bernards are known for being gentle.

Baylee was no exception a true gentle giant. That changed the day they

came from hospice to take mom. Baylee became angry and almost

attacked the medics. They know alot more and feel alot more

than given credit sometimes. Haylee

[Addie]

They know alot more and feel alot more

than given credit sometimes.

Oh, I absolutely agree. I have a friend who had a mole on her leg. One day her dog came up to her after she was just out of the shower and started to try to BITE at the mole. It caused her to go see her doctor about the mole....and you guessed it....it was a melanoma!

There are some dogs that can actually be trained to sniff out cancer in people. If I ever come across a good article about this, I'll post the link. Can't recall at the moment where I first read about it.

While dogs don't have the same emotional capacity as humans...(it's just that we humans want to THINK that our dogs poop on the rug out of spite~! They don't. They poop because they have to go and maybe no one is there to let them outside!)...they are very sensitive to human emotions....and things on a level that we humans cannot really understand. I mean, how does one ASK the dog what he's thinking?

But it's easy to see sometimes, how they react to OUR moods or emotions...and of course their noses are much more finely tuned as is their hearing.

I just thought it was interesting that Mattie sniffed RIGHT at the spot where the catheter had been in my hand...and then she wanted to lick it. I didn't let her...I mean, I'm sure there was no residual chemo left there...but it made me nervous anyway. So....I let her lick my cheek instead and that made her happy!

[Terrie]

I was originally diagnosed as NSCLC - squamous cell - and treated as such. Had chemo and radiation as such, then had the tumor removed - even though they said the treatment didn't shrink the tumor - and final path came back neuroendecrine carcinoma - typical carcinoid.

Was told that was a GOOD THING. Then about six months later my pneumologist told me different pathologists may not agree on the diagnosis, but let's "go with this for the time being". After years of misdiagnosis (believe me, I could write a book!) and lots of treatments, several surgery attempts - I have faired VERY well!!! I will tell you, however, still wage a "mental" war occasionally over the quacks that let this go for so long - and me for believing them - but that's another story.

I really only did research AFTER my surgery, because I didn't know the final path till I went for a followup with my surgeon. I didn't receive treatments for NE, because they thought they were dealing with NSC at the time. My onc., however did say it was a very slow growing type.

Good luck - like everyone said - take a minute to let all of this sink in and move on with your fight!! Now that you have the knowledge, you have the power - you go girl!

[Rick]

May 11, 2004 Volume 40 Issue 19

--------------------------------------------------------------------------------

Study sheds light on treatment of NSCLCs

Treat large cell neuroendocrine carcinomas as form of non-small cell lung cancer

By David Hodges

TORONTO – Data presented at the recent American Association for Thoracic Surgery meeting here suggest that lung cancer patients with large cell neuroendocrine carcinomas should be treated like those with other types of non-small cell lung cancer in order to identify those at highest risk of recurrent disease.

Researchers at the Washington University school of medicine in St. Louis studied the outcomes of surgical resection in lung cancer patients with large cell neuroendocrine carcinomas, and found they had a worse survival rate than large cell carcinoma patients.

Although both carcinomas share morphologic characteristics, large cell neuroendocrine carcinomas should be treated as an aggressive form of non-small cell lung cancer and not as a form of small cell cancer, they said.

"Large cell neuroendocrine carcinoma is associated with a shorter disease rate and a greater overall survival rate, even in patients with stage I disease," said lead author Dr. Richard Battafarano. "Some previous authors and investigators have suggested that the reason why patients with large cell neuroendocrine carcinoma do more poorly is because they present with a more advanced stage at the time they're diagnosed. But you can see in our study that basically the stage of presentation for patients with large cell neuroendocrine carcinoma was similar to the stage of presentation of patients with other histologic types of non-small cell lung cancer."

Between July 1998 and December 2002, Dr. Battafarano and colleagues retrospectively identified all patients at their centre undergoing surgical resection of the lung for large cell tumours. Cases were then subdivided into large cell neuroendocrine carcinomas, mixed large cell neuroendocrine carcinomas (in which at least one portion of the tumour was large cell neuroendocrine carcinoma) and large cell carcinomas on the basis of morphology and differentiation. These patients were then followed for a mean of 48 months.

Of the 2,089 patients who underwent resection, 82 (3.9%) had large cell lung cancers. Of these patients, 45 had large cell neuroendocrine carcinomas, 11 had mixed large cell neuroendocrine carcinomas and 26 had large cell carcinomas.

The overall survival and freedom from recurrence at five years for the entire group was 47.1% and 58.4%, respectively.

When histologic subtypes were accounted for, the overall survival rates for all stages of lung cancer were 36.6% for large cell neuroendocrine carcinomas, 36.4% for mixed large cell neuroendocrine carcinomas and 70.9% for large cell carcinomas. For stage I lung cancers, the overall survival rates by histologic subtype were 41.9%, 33.3% and 79.5%, respectively.

Link to thr May Article.

http://www.medicalpost.com/mpcontent/article.jsp?content=20040511_190550_3908

[Guest bean_si (Not Active)]

Thanks Rick. I will take that into my onc as he still says it's really SCLC or treatable as SCLC. (He's smart but barely out of school, smaller town - big ego - he's gonna stick by his guns) I'm glad I have a RECENT related article.

I will then try to find the number one hospital treating this cancer (the treatments are so controversial - no one seems to agree). I will ask my insurance to go there for a second opinion. My insurance prevents me from being treated at another hospital but if my onc signs a paper saying it's medically necessary I can get a second opinion on cancer. Unfortunately, unless I pay them, they won't advise treatment (insurance will pay for 2nd opinion diagnose but not treatment plan).

I will talk to my onc, make him feel that instead of getting sued (which is a huge worry in S. Florida) - I'm letting him in the loop and we will both take the findings from the large hospital and use them to develop my plan to be administred locally.

How's that sound?

Pacify the insurance and onc. and get me going on a new path.

One thing - I was told having chemo and radio at the same time would increase my chance of cancer 25% in the future but I should take it because I had SCLC. I took it. I suffered horribly - so badly that the ER called and screamed at my doc.

Then I find I didn't have SCLC. I have to start all over again with that unnecessary poision in my systems. 7 months. 7 freaking months.

What if I didn't insist something was wrong? What if I didn't have info from here to support me?

Cat

[john]

The Moffit cancer center in tampa is NCI designated

It is the only designated center in FL

http://www3.cancer.gov/cancercenters/ce ... st.html#L7

[Guest bean_si (Not Active)]

John the (very small) hospital I go to is an affliative of H. Lee Moffitt. That's where I go the initial inaccurate dx. although I realize it's very hard to differentiate. After going over more on the net, I'm more confused. So much contradiction.

Thanks very much for your help.

Cat

[john]

There are various types of neuroendocrine carcinomas. They are from the least aggressive to the most as follows

1) typical carcinoid

2) atypical carcinoid

3) large cell neuroendocrine carcinoma

4) SCLC

The tested for synaptophysin and chromogranin A in my mom's case. I read that they can be differentiated by mitotic count - how fast the cells divide. Cancer with faster dividing cells respond to chemo better.

That is why carcinoids don't respond to chemo but SCLC responds very well

I read CD65 is a marker for SCLC

The Armed Forces Institute of pathology is where they designated LCNEC so you might want to get an opinion from them. I think the pathologists name was Stephen Barrett? thought I am only about 60% sure of that name

[Guest bean_si (Not Active)]

I've searched and read and read and searched. I'm thinking it's time to give up. I'm serious. Not even the doctors seem to understand this type of cancer. No one agrees on treatment. I have lousy insurance, no money......... I just don't know what to do. I'm sorry. I just desperately needed to get this feeling out.

Cat

[stand4hope]

B--A--L--O--N--E--Y--

WE ARE NOT GOING TO LET YOU GIVE UP. Bean_si, I don't have answers to give you, but others will help you. I just know you can't give up! PLEASE PLEASE PLEASE PLEASE PLEASE don't give up.

Love,

Peggy

[Guest bean_si (Not Active)]

(((((((((Peggy))))))))))))

Thank you, thank you, thank you.

Cat

[stand4hope]

((((((((((bean_si)))))))))))

You're welcome, you're welcome, you're welcome. Tomorrow is a brand new day. Get some sleep tonight - STAY OFF THE INTERNET LOOKING FOR THINGS - AND THAT'S AN ORDER - and get up tomorrow morning with a fresh new face, clear mind with a mindset to make some calls and get some answers. I feel helpless not being able to steer you where you should go, but others have given lots of ideas and things to talk to your oncologist about. So you rest tonight and tomorrow you go GET'UM!!!

Much love,

Peggy

[john]

The Dr at the Armed Forces Inistitute of Pathology that created the subclass of large cell neuroendocrine carcinoma is Dr William Travis.

He is world renown.

[jamie]

Cat,

So sorry about all of this. Ive been gone all weekend and was just sitting here trying to catch up...(which by the way is impossible when you've been off the board for almost 5 days!). Anyway, I just spent the last 15 minutes reading your post and the entire thread with it and what can I say???

This is so confusing. One minute you have this, then that, than this again... Im sure once everything is straight you and your doc.'s will figure out how to go about all of this.

What I dont understand is what is actully going on? Do you have something rare or is it NSCLC?

Im so confused. Will you now be operable?? If so then thats great right? I dont know much about SCLC, but its faster spreading and non-operable right??? If you are NSCLC, then what stage? Im sorry I am so confused.

I want you to know that Im thinking of you, and I hope you get answers and solutions quickly. PM me if you need to talk about anything!

Jamie

[Carleen]

Hi Cat,

Sorry it took me so long to jump in on this, but unfortunately I don't get computer time too often anymore.

Anyway, YOU ARE NOT DEAD!!!! Please know that there is hope out there yet for those of us with nueroendocrine tumors.

My husband was originally diagnosed with SCLC. After visiting the Mayo clinic, three biopsies and lots of arguing, his diagnosis was changed to Atypical carcinoid (which is a nueroendocrine tumor). The particulars are slightly different, as large cell nueroendocrine tumor is suppose to be slightly slower growing than Atypical. Otherwise from what we were told, they are in the same family. The thing that tipped us off, like you, was the fact that after 7 months of chemo, there was no change in tumor size. Some people may say that stable is good, but when you are diagnosed with SCLC, it is almost unheard of.

Nueroendocrine tumors are more chemo resistant, but there are alternatives. John had mentioned Somastatin. My husband is currently taking Somastatin (AKA Sandostatin). The 411 on this drug is that it is a hormonal therapy meant to stablize tumor growth and prevent tumor growth. However, a certain percentage of patients have experienced decrease from Sandostatin alone, even remission. My husband was given a prognosis of 9 months following his diagnosis change. However, he has been fighting now for 15 months, and has only had minimal increase in his primary tumor, decrease in all others, no spread, and is feeling wonderful (other than fatigue from radiation ).

We have also been to see Dr. Lowell Anthony in New Orleans LSU (please check him out). He is one of three leading oncologists that specialize in carcinoids (the other two specialists are Dr. D'Orisio in Iowa City, Iowa; and Dr. Warner in New York). He is also heading up a very promising clinical trial for carcinoids called Indium 111 for which Keith has prequalified himself for. It is a treatment uses the fact that carcinoids have hormone uptake sites. They attach radioactive isotopes to the specific hormone your tumor likes to soak up, and it is like a targeted smart bomb.

While we were in New Orleans, we had a chance to talk to a few patients currently in this trial as we sat in the waiting room. We talked to one woman, who was given a 6 month prognosis; she was currently in her 18th month. We also talked to a gentleman who had Large Cell Nueroendocrine Carcinoid who was in a different trial Dr. Anthony had going on, who was in his 6th year of his fight, after an original prognosis of 9 months. While this diagnosis is new, there are also new treatments being developed specifically for carcinoid cancers.

Also very promising (incredible even) is a trial being done in Rotherdam; Ytrium somthing or other. It is also a radioactive isotope like the Indium study (actually it is the study Indium is based off of); but a more powerful isotope which is not legal in the US. From studies I've read, this trial has been have some amazing success. I will look for the article, but the one I read stated that all participants were patients who have exhausted all other treatments and were technically in thier last 3 or less months of life. The outcome was a majority of patients surviving at least 18 months, somthing like 40% surviving over 3 years and 5% with greater than 5 year survival.

This war is not over for you, or us, it has just begun we just need to redirect where we look for weapons.

God Bless you, and if you ever want to talk please e-mail me. I have work access to e-mail and get on that daily as opposed to the once every other week I can come here.

Carleen