More questions than answers

[adee]

I just got home from onc appointment following my PET/CT scan last week. The good news is the tumor in my lung is drastically smaller and shows no signs of activity. And there are no signs of cancer anywhere else in my body. The bad news is I have fluid in my lungs which may indicate cancer, although the PET scan didn't indicate that it was cancer. My onc is going to just watch it (she said my lungs sound okay), then follow up in several weeks with a chest x-ray. More bad news is that my cancer marker is elevated from last time. Onc says this doesn't necessarily mean anything (?????). Has anyone had fluid in the lungs that turned out to be non-malignant. Has anyone had elevated markers although cancer shows signs of remission or inactivity?

[pammie]

Glad to hear the tumor is shrinking. that is great. Sorry to hear about the fluid and tumor markers. My experience was the markers went down as the cancer activity decreased. Others have mentioned that the tumor markers were not good indicators for them so apparently each one is different in response. Will be praying for you Adee. pammie

[Bill]

I just got home from onc appointment following my PET/CT scan last week. The good news is the tumor in my lung is drastically smaller and shows no signs of activity. And there are no signs of cancer anywhere else in my body. The bad news is I have fluid in my lungs which may indicate cancer, although the PET scan didn't indicate that it was cancer. My onc is going to just watch it (she said my lungs sound okay), then follow up in several weeks with a chest x-ray. More bad news is that my cancer marker is elevated from last time. Onc says this doesn't necessarily mean anything (?????). Has anyone had fluid in the lungs that turned out to be non-malignant. Has anyone had elevated markers although cancer shows signs of remission or inactivity?

If it's any consolation you aren't alone if your PET / CT fusion results left you with more questions than answers. My wife just had a PET scan / CT fusion at supposedly the #1 ranked facility in SO CA and read by their most experienced PET / CT radiologist. He basically threw my wife's entire dx ( and therefore tx ) into question with some of his findings. I have appointments lined up with ALL 5 of my wife's treating physicians starting Friday to see how this thing shakes out. Get a consensus opinion and see what, if anything, can be done about this mess. Needless to say, my wife has been thru alot, including ( as some of you may recall ) near death earlier this year. She is stunned by these results and questions the integrity and reliability of the whole dx thru tx process right now. I can't blame her. I'm second guessing alot of things myself and will be demanding substantative proof to back opinions at these upcoming RE-evaluation appointments. I don't care whose egos get bruised ! BTW, here's a PET tip for you. The radiologist that read my wife's PET / CT told me that measuring ( the size of ) a lesion on a PET scan is highly unreliable / inaccurate and a waste of time. He, therefore, provides no such measurements in his reports. Just comparative SUVs. No peaceful weekend for us !

Good luck to ALL !

[RandyW]

My wife has Lung Cancer and she has had shrinkage of her tumor and regrowth of her tumor but no spreading of tumor. Last spring, she had a pericardial effusion done for fluid around the heart. Could barely breathe or move it was so bad. The Fluid around the heart we were told did contain cancer cells but no indication of tumor spread. Onc says everyone has cells in their body and unless these cells get together and form a tumor not everyone has cancer tumors. Does this help?? I do hope so.

[Connie B]

The bottom line is; there is NO SCAN, (PET, CT MRI) that is 100% in finding cancer. But, at this time, it's the best we've got in the battle to help us fight our cancer. Nothing is a 100%.

To often we walk in and think these machines can do all and tell all, and the truth is, they don't.

[eppie]

I have to wonder whether a whole body scan is being done. In my Uncle's case...SCLC the PET of the trunk showed clean. 9 months later he shows neurological symptoms...brain mets..

I say, do whole body scan. but i am not a doctor. I only play one from the safety of my living room.

Again, nothing I guess is 100%.

Cancer bites the big one. i hate it with an unfathomable malice.

eppie

[cindi o'h]

Well hello there, Adee!

I want to congratulate you for the shrinkage!!! That is superior news! Now that IS something that can be measured on your CT scan. Hopefully, with the treatment that you have had it will soon be completely up in smoke...poof!

As far as the tumor markers you speak of are concerned, that is something that I have no personal experience with. Apparently they are not substantive with my onc.'s that I have seen.

Now...getting to the good part..I had fluid around my lung too and it was not and is not cancerous. It is a peri-pleural effusion. I did have symptoms with it. The biggest problem causing shortness of breath. Because of that, I had a procedure called a thoracentesis. The radiation doc under guided imagery, pulled off a liter or two from my lung so that I could breathe easier. It was through a needle into the lining of the lung. I had this done several different times. Each time the fluid was sent for testing and always, it came back negative. (there is hope for you!)

The last time I decided to get a more permanent solution and had a procedure called pleurodesis, or talc procedure. That was in Sept. So far, I had some more fluid accumulate, but it feels now as if it might be all gone. It was found that my problem was that a valve of some kind was leaking chyle into my lung. Called a chylothorax. Fortunately, I had a good surgeon who helped me through this.

Good luck to you! Let us know how it turns out for you.

Oh. There are people here who do have cancer cells in their fluid and many have remained stable (a good thing!) for a long time..

Cindi o'h

[bunny]

congratulations on the good news, I am so glad to hear it! a for fluid, my mother developed pneumonia at one point. obviously, that was ALOT of fluid, but it was not malignant.

good luck with all of it, and again - congrats on the shinkage!!

xoxo

amie

[Jyoung20]

Adee,

Did you have radiation? I had fluid on my lungs and it was dx as radiation pneumonitus, and pneumonia and a pleural effusion. Never any discussion of any malignancy.

Congratulations on the shrinkage.

GOD BLESS!

Jamie

[bcbcbc]

I would agree that it is certainly good news that your tumor has shrunk. Mine has remained the same size for over a year now. I've learned that "stable" is good though shrinkage is probably better.

When I was first diagnosed in Sept. '04 I had a very large pleural effusion. This is an accumulation of fluids in the pleural space between the two pleural membranes--the one that covers the lungs and the one that lines the chest cavity.

Normally this space is used by the lungs as they expand. Of course if the space is filled with fluid the lungs have less expansion room, which causes shortness of breath. When I finally went to the ER I was so short of breath I thought I was having a heart attack.

They tapped into the pleura for a sample of the fluid. It did contain malignant cells. Over the next couple of days they did a thoracentesis to drain the fluid. They drained five (5) liters--well over a gallon of fluid.

Then they did a pleurodesis with bleomycin. They inject this substance into the pleural cavity to cause irritation, which has the effect of +/- fusing the two pleural membranes. If it works this eliminates pockets where the fluid can accumulate.

It didn't work perfectly for me but it worked sufficiently well that I have not had to have further drainage over the past year.

For most of this year I have enjoyed good health--an active life. Chemotherapy, some radiation and perhaps some other juju have combined forces to keep the cancer from growing/spreading so far.

I did have a scary setback last month with a bout of pneumonia possibly brought on by a chemo drug to which I had a bad reaction. I'm happy to say I'm now mostly over that and feeling well again.

Friends and family who know I have lung cancer are amazed at how well I look--how active I am.

I don't find it convenient to tell casual friends/acquaintances about my cancer. They don't need to know and I don't need for them to know.

If the issue comes up due to my use of bronchodilators or a coughing spell I may casually mention my allergies or chronic bronchitis. Avoids much pointless discussion. It's not like I'm contagious.

I guess my point is--be of good cheer--no matter how grim things may seem at some moment--many of us overcome crises to move on to a decent quality of life and more longevity than expected.

Best regards...

[Don M]

I am glad to see you have had good tumor shrinkage. I guess it is not uncommon to have non-malignant fluid. I guess I would question my onc why elevated markers does not necessarily mean anything. A friend of mine with late stage ovarian cancer had tumor shrinkage, but the scans showed malignancy in the fluid.

She also had an increase in her cancer marker. I guess I would feel reassured if a pet scan showed no uptake.

Don M