NOW WHAT DOES THIS MEAN????

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OK here is my story now.I finally meet with an oncologist for the first time.I had my 2 lower lobes removed 2 and 1/2 weeks ago.I thought I was meeting with him to discuss what type of chemo we were going to use and when.Well he comes in and says your case is very complicated.I was surprised I said really????How so???? He says well kandy when we took out your lobes,we did the frozen resection right then and there and to our surprise the tumor was in the lymph node in your lung.The lung itself had very small traces of andocarcinoma and it did have to come out because eventually the cancer would have grown.Now what we are concerned with is why did this lymph node have such a large tumor on it???Is your cancer coming from another source?? I broke down screaming crying like a baby guys.I fucking totally lost it.My sister was there my Dad my step mom.It was horrible.They say the PET scan was clean back in July but they are doing this just as a precaution.So they want me to get a mammogram and a MRI of my brain.I need some honesty guys what do you all think of this??? Do you think its possible that I only have a tiny bit of cancer in my lung and it all just went to the lymph node?? Or does this indicate that I have it somewhere else?Please honesty is what I need here from my friends and fellow survivors.Any input would be greatly appreciated. Sincerely,kandy

37 replies

Kandy - I just had my 2nd PET - it came back NED - BUT they "saw something on my right breast" - which now I have to deal with - it could be "nothing" or it could be our worst nightmare - so even though I had a mamo in April I will get another and have them compare the film to the PET and see what it is I am dealing with - Are they having you do a mamogram because they have seen something in your breast? I also had a Brain MRI - they are probably covering all the bases. I'll tell you what everyone is telling me "Don't self dx the worst case" - "It could be NOTHING" - do the tests and find out what you are dealing with and then we can have our breakdowns together. Hang in there....
Karen

Karen I honestly dont know what half of the people would do without you on this sight.Karen, I had no idea that they found something on your mammo??? When did this happen?? They said the PET was perfect except for my tumor in lung.What they are questioning is why did my lymph node have a large tumor in it yet my lung had barely any cancer in it.Where did this tumor come from???The lung with the tiny traces of cancer?? Or is it in another place??So they are checking the breasts and the brain???Im losing my fucking mind girl.I just wasnt prepared for this.Thanx for all of your help you truly are an angel!!-Kandy gurl

Kandi, it's possible that they are looking to see if you have a "primary" in another location; if so, it's possible that the lung tumor was a metatisis from somewhere else, and maybe not "lung cancer" per se. Don't start second-guessing or freaking until you know for sure. Use your energy to heal from what you've already gone through!!

No they found something on my PET on my breast....the lung was fine and it was NED - but a little spot on my right breast showed up - could be nothing - could be anything - so I go for another Mamo and have them compare the films.....just try not to panic - it's sat. and there's nothing we can do till monday....

hey, Kandy,
You need to take a breath, sweetie - this, I know, is a kick in the gut....the doctors are really helping you here - what they are telling you is that your lymph system has either grown something on its own (typically it's called Hodgkin's) or you have something growing somewhere else and it's pooping stuff into the lymph system (remember that the lymph system is the body's waste management system). The big word he used, adenocarcinoma, simply means you have cancer in a gland, which is what a lymph node is.

Breast cancer is pretty easy to find with today's technology - figure on several different kinds of scans with both x-rays and ultrasound - they don't hurt much, so they're pretty straight-forward. I just went through all that, and they found a cyst that was deflating - but the diagnostic tests aren't real hurtful. The other good news is that they have real good ways to treat it (maybe not fun, but treatable).

The brain is also pretty easy to check (MRI with contrast) - goes fast and doesn't hurt at all.

Here's the $10 question - why aren't they putting you into a pet-scan and looking around??? (that would be a great question for the doctor) It's relatively cheap, doesn't hurt, and gives lots of info....

Kandy - we're with you on this journey - sending many big old hugs and prayers
Pat

Hey Pat!! The PET scan was done in July and the only thing glowing was my lung tumor.Im guessing thats the reason why they arent giving me another one??Do you think its possible that I only have a small trace of lung cancer in lung and that is why my lymph node had a large tumor or do you think i must have it somewhere else?I never thought that possibly it could be Hodgkins or lymphoma??? Anyone else think so???Thanx guys-Kandy

Kandy I have been following your posts since your surgery. I am so sorry you are going through all this. Just get through these next couple weeks and hopefully you will have the answers you need to know what is the best way to treat it from this point on.

Thinking of you and sending lots of Prayers your way. Will watch for your updates.

kandy, i don't know the answer, but i will keep you in my prayers for good results.
m

Kandy why don't they do a full body scan? I'm not sure where you're getting your treatment but if your situation is "complicated" you need to get to a major cancer center ASAP. Is that possible? The fact that your oncologist seems puzzled is not a good sign. A place that deals with thousands of patients from all over the world will be more likely to have some answers for you. Can you ask for a second opinion and get into a cancer center? We are only a few weeks into treatment for my husbands NSCLC and already I regret we didn't go to MD Anderson.

I think that you need to get to a dedicated/comprehensive cancer center. I don't know where you are being treated, but as you are in NY, can you get to Sloane-Kettering?

I hate to think that "they" have mis-identified the primary and that the lung lesion/lymph involvement represents a met from a tumor elsewhere. On the other hand, a met involving Hodgkin's Lyphoma is a "good" thing since HL is usually very addressable.

Please get to some people who are the best, which SK (or NYU or Columbia or Mt. Sinai) is but avail yourself of the best, please. You deserve it!

Let us know how it goes.
Danna

Hi Kandy,

Did they doctors do a biopsy of the tumor? This is really the only way they can know for sure the type of cancer as far as I know.
Wishing you well..................Hugs to you and God Bless.

Bill & Cathy

Bayrealtor just asked a very important& interesting question. Wht kind of cells did they see in this lymph node? If they see breast cancer cells growing in your lung that means the primary cancer is in your breast.Hermanade is right. Get thee to a Major Cancer ASAP. In the meantime dear, don't see this as a worst case scenario. It might turn out to be a better diagnosis than LC. Do you have any anti anxiety medicine? If you do start popping them and if you dont, plese get some ASAP. In limbo is a terrible place to be. Wishing you the best......................M.C.

Hello Kandy,

I had a marble sized LUL primary that metastacized to an egg sized brain tumor. So, it's not terribly unusual for mets to be larger than the primary.
That being said, I hope your initial work-up included brain MRI, CT w/contrast of chest, abdomen & pelvis and a bone scan.
Where are you being treated, Stony Brook? Maybe it's time for a second opinion in Manhattan, I prefer NYU since they zapped me with a bunch of miracles!
If you'd like to contact me privately, feel free, I'm in Nassau cty.

Sincerely,

George

Texaszan,

I want to encourage you to go on down to MDA. It's NOT too late. I love that place. They are absolutely incredible.

Let me know if you have any questions about how to self-refer or place to stay or places to eat. I've learned it all in the last year. ;)

Hugs!

Lorie

Kandy, sweetie, try not to panic yet. Like others have said, this could be a good thing. I think you need to get to a cancer treatment center like Sloan-Kettering or MD Anderson ASAP. Have the tissue samples sent to them, too. And as someone else pointed out, they should be able to test that tumor and find out where the primary location is.

Hang in there, my friend. Try to take a deep breath and go do something fun just for YOU today. OK? I wish I lived closer. We could go paint the town! ;)

Hugs! I'm praying!

Lorie

Kandy - I'm with George - Stage4Survivor - NYU in NYC - they also saved my life.....
karen

Kandy,

First of all I think you need to ask a PROFESSIONAL. So, on that note lets start with Dr. West at: http://cancergrace.org/

He's a very well known Onc Doc and he offeres wonderful information and HE would be best to answer this question rather then any of us. We are all only going to second guess this and I don't think you need us doing that, your doing enough of it on your own. (GRIN) (SIGH) Beside, KNOW I am smarter then a 5th grader when it comes to lung cancer, but I don't have that PHD/MD behind my name. hehehe lol!

We need to get our crap together and go to the proper people for an answer.

We can all sit here and tell you it could of, would of, should of, but we don't honestly know.

SOOOOO, on that note, go over to Grace and Ask Dr. West.
Peace of mind it PRICELESS!

Sending you positive vibes my dear!

Hugs,
Connie

Kandy,
Nothing to add other than lots of love and hugs heading your way! Just picture all of us as the Verizon wireless gang behind you! Hopefully that will bring a smile!

Erin

Erin, I just pissed myself even though I got lots to clean now that was the greatest laugh of all !!!!!! roflmao

..hi kandy..

..yup, lung cancer spreads, and the oncos get all panicky if it hit's the lymph nodes in the lungs, cos once there and not stopped, it can go anywhere, the lymph node system is a piece of internal plumbing and they're all linked..

..if it's not bad then post-op chemo should wipe it, and clean the rest of the same system..

..i had th same headache, during surgery they found that the lymph node was , to some degree infected, so they scraped out what they could, and relied on post-op chemo to get the rest..

..best of luck with the chemo..

..and if visualisation's your thing, then whilst you're taking the chemo, imagine a white rabbit kicking sh*t out of those crabby-doofits, aided by the chemical soldiers..

..any white rabbit'l do, there's a lot of them around..

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