Lier and BAC

[EileenM]

Hi

It has been a while since I have posted due to computer problems which I hope have been solved.

Had my first follow-up CATSCAN done and had appt. with the surgical oncologist. CATSCAN was clear - hooray! The incisions are healing nicely, though I still have internal discomfort in front and back. Doctor said that will eventually go away.

Before the appt., I picked up my CATSCAN films and read the report that was inside. To my shock, it read that "there are two areas of attenuation within the liver measuring under 1 cm. These probably represent small cysts. They are too small to characterize. Follow-up is suggested." So during the appointment I patiently waited for the doctor to mention the cysts. He didn't! But I did! He nonchalantly says they are nothing to worry about and alot of people have them.

That really made me feel good I couldn't believe he wasn't going to tell me. So I said "Since I had BAC in the lung shouldn't there be some concern?" Again, he brushed me off with the "Alot of people have them".

So I asked him whether the cysts showed up on my original CATSCANS before the surgery. I had brought those with me, too. So he looks at them and says yes they are there. (There was no mention of them in the reports from those CATSCANS that I had copies of). Then he impatiently says "Go see your Internist" twice to me. Then he says BAC doesn't metastaize to the liver. Great comfort!

This surgeon came highly recommended. From the first appointment, I knew he didn't like questions(I asked alot of them and even said I prefer to know than not to know), so during future apptointments I chose my questions carefully to ask him. I am so upset by this! I'm grateful he was successful in removing the cancer, but I also feel so letdown. I cant help but wonder -- If he wouldn't tell me about the liver cysts - what else wouldn't he tell me?

So I have been mulling this over and have decided to get an appointment at the Cancer Institute of N. J. - it's not much farther than the ride to Morristown. I want to be able to ask questions whether they are minor or major questions. I don't want to feel intimidated (my husband even admits to feeling this way with this doctor). And most importantly I want to be told "everything" .

Does BAC not metastasize to the Liver? Can BAC be in the liver but not come from the lung BAC? Am I overreacting? Has anyone else had similar situation with their oncologist, etc.?

Thanks so much! And I'm so glad my computer is working again!

EileenM

[gail]

I too had BAC, and did not like my surgeon at all. Getting answers out of him was next to impossible, but I knew he was very good at what he did. About 6 months after the surgery, I realized I was sending all my anger with the diagnosis to him. It was so easy to be mad at him. Then I realized that he was the one who really saved me.

I got into therapy quickly after my surgery, and am still there. Having lung cancer is tough. Be told you had "the best kind" left me spinning. Was I supposed to be happy?

I am further south from you in Burlington County.

gail

[Fay A.]

Ladies,

BAC does not usually met to other organs, except the opposite lung, but that does not mean it cannot and does not spread to the pancreas, liver, brain, bones, intestine, etc. There are too many folks who have BAC who have mets.

Eileen, I've had Polycystic Disease in a number of my organs for many years. There are studies they can do that will determine if those small spots are really fluid filled cysts in your liver, or something solid. I had ultrasounds done on my Kidneys and Liver until those organs became too large to fit into the ultrasound field. (A term baby can fit into the ultrasound field.) They were able to count and meaure all of the large 6 cm, 5 cm, 4 cm cysts and measure some of the "...innumerable 3 to 4 mm size cysts...". My point is that there are ways to determine if they are cysts (simple or complicated) that don't require them to stick a needle into them.

I'm glad you're going someplace else...if that doesn't work then go to another place until you find someone who will answer the questions you have. It's your body and your life and you have a right to whatever information they collect about YOU.

Wishing you good luck, whatever you do and where ever you go.

[EileenM]

Hi Gail and Fay

Thanks for replying. I've had a few people comment that surgeons (some not all) seem to be aloof. That's without telling them about mine. I thought I could handle his "communications" but I really want to be informed. I'm not even really angry at him as I realize that is the way he is, but I do get really uptight about going for an appointment because I know he isn't one who likes to answer questions. At the last appointment we heard him tell another patient they should stop reading articles, etc. So he's that way with everyone.

Thank you for the information about the liver cysts. I'm not too thrilled about the possibility of a needle stick into them, so I will surely ask about what you said. I'm hoping they are what's called simple cysts - but untl I know for sure - I guess I'll just worry.

Going to call for an appointment tomorrow with a new doctor. A friend who works at the Cancer Institute recommended 2 doctors. He had mentioned to me to go there when this all started, and now I've been trying to figure out why I didn't go there in the first place and I think I figured it out. The name "Cancer Institute" was too final - that was like saying I had Cancer even though I didn't find out until I woke up from surgery. - and I was scared and trusted the doctors that referred me to the surgeon. The surgeon is a good surgeon - can you tell I have a small case of the "guilts" about changing doctors? I'll get over it because I'm still making the phone call!

Thank you both again.

EileenM

[bobmc]

Hi Eileen;

welcome back, glad to hear your doing fine!!

Went through almost exactly the same thing that you are with the doc, and also the liver cysts My surgeon was also from Morristown, I had my pneumonectomy there. Excellent hospital and excellent surgeon but I went for follow-up care with a medical oncologist, just seems to make more sense to me, and it is working out just fine now. But, I did go through the turmoil of that decision as you are. I think your doing the right thing!! I 'm also presently being treated at Overlook Hospital, also affiliated with the Cancer Institute of NJ and Brain Institute of NJ and very happy with the care I'm recieving. But, again, decisions we need to make and feel good about.

Ohh, and the liver cysts, my medical oncologist had ultrasounds done on them and confirmed the were calcified deposits.

God bless and be well

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack

PET taken 1/5 - hot spot in mediastinum May be cancer??

"Absolutely insist on enjoying life today!"

[Fay A.]

Bob makes a great point....we see the surgeon for surgical treatment and followup, but go to a medical oncologist to oversee the general cancer treatment and follow up, a radiation onc for radiation treatments if called for, and specialists for whatever else might pop up. So technically you aren't really changing Doctors. Just becoming more "specialized". Wishing you good news that those spots on the liver are just simple cysts Lots of people have cysts in the liver without having Polycystic Kidney Disease with Liver involvement, so don't worry about that, either. PKD means you have so many cysts they cannot be counted, not just one or two.