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50/50 chance


Debi

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Thanks again all! Valium is sounding damn good about now Gail! And Dave, thanks for the encouragement! Rocco, you made me laugh about leaving the skid marks to get cigarettes..am glad that I am not the only one!! Good luck with your CT scan!! I am feeling better now..I'm in the "purposeful" stage..just getting things taken care of at work and plodding forward. And instead of counting the days till I have the surgery, I am now counting to the days after the surgery. As in..2 weeks from now I'll be 2 days OUT of surgery..that sounds so much better!

Debi

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  • 3 weeks later...

Rocco or anyone else who has been told this same info.

I saw that you had Taxol & Carboplatin & Radiation. Did you have all of these treatments at the same time? Then you had surgery afterwards? The LC I have has encased my bronc tubes. The doctors at UCLA said I was given too much radiation to be able to have surgery now, they said I was too toxic. Have you ever heard of this? Apparently my pulmonist, the radiologist and the oncologist did not communicate. According to oncologist before she treated me, her goal was to shrink my tumor and then remove the rest surgically. My chemo was once per week for 8 weeks and my radiation was once per day for 38 treatments. Do you know the amount of radiation given to you, my tumor dose was 41cGy then boosted to 69cGy. My last Traetment for chemo was 5-20-03 and radiation was 5-15-03. My oncologist said I can wait til mid July to start treatments again. Is this normal? I am really confused and very upset about the way all of this has been handled. I am IIIa-b. What stage is yours and are you cured now, praise God if you are.

Do you know of anyone elese who has experienced this? I did get authorization from my insurance to go to the City of Hope in Duarte, CA for another opinion. I have an appointment on Tuesday , June 24th with an oncologist. I hope I can meet with the Thorasic Surgeon to discuss treatments.

If you would let me know I would be greatly appreciative.

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Karen, the situation you speak of almost happened to my husband. The radiologist was not informed that they were going to consider surgery if the tumor shrunk enough. Luckily we brought this up before he had the maximum dose (don't ask me what that is). They stopped radiation, he was evaluated for surgery and it was not possible. He then went ahead with the radiation. The problem is that once an area has the maximum radiation it will not heal. It was a hard decesion for us because we knew once we went that far there was no going back. It is frustrating when the different doctors don't communicate with each other.

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Karen, I had carb/taxol every Monday while getting radiation every weekday. The chemo was to boost the affect of the radiation. I had, I think, 3 more radiation treatments to go when I had to decide to go for surgery or to finish radiation. Any more radiation would have prevented surgery. I guess there would have been too much scar tissue, but I don't know the actual reason. The quandry was no one but me & the radiation oncologist believed surgery was going to be successful. The surgeon didn't believe he would be successful. But it was.

If truth be told, I would have preferred to have been cured w/o the surgery. The surgery is nasty. JudyB

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Karen-

I was stage IIIa and had chemo every Monday for 7 weeks, and 28x rads every weekday, much like Judy.

The radiation was 5100Cgy +/- total. Then, I had to wait a few weeks before surgery. they told me the chemo and radiation kept working for weeks after the last treatments.

They delayed surgery a few weeks to give the treatments more time to shrink the tumor.

After surgery, I had one adjuvant chemo of taxotere and carbo. They suggested this to 'clean up' anything left behind from the previous treatments. As of now, I'm NED.

It may serve you well to get a second opinion, as it appears your drs. aren't too adept at communication. My onc told me that even without surgery, a cure is still possible, and there are many on this board who are living proof.

Keep a positive attitude and be proactive.

God Bless.

Rocco

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Hi All,

Thank you Rocco, Judy B and Ry for your information. I really am still confused. Let me give you and update. On Tuesday, I went to my radiation onc for my 6 wk follow-up. He said I should not have surgery because the tumor was on my bronc tubes in the middle of my chest. According to xrays and CT, it is gone from there. The tumor is now only in my right upper lung encasing my bronc tubes It has shrunk about 60%. Per my onc, (appt. on 6-9) I need to have enough room around tumor to be able to do surgery, cannot touch anthing around tumor, cut into tumor (don't want ca cells to spread) It much be a clean removal. The onc I saw on 6-9 at UCLA, said I should see the surgeon there, I have an appt. with him on 6-30. Wouldn't you think that if there is no option for surgery, why would they have me see surgeon. The onc at City of Hope last week made it sound like there is no hope. Really depressing. Said I am not candidate for surgery. Suggested Taxotere. I had a good response to Carbo/Taxol, why not put me back on it to continue shrinkage?

I am having a PET done today at 2:00, begged doc for it, said I didn't need. Did all of you have a PET? They said at UCLA, I should have had it done before treatments.

Your input is soooo important to me. Thank you everyone.

God Bless and we are survivors.

Big Hugs

Karen

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Hi karen335 ~ I had a PET at Loma Linda, that was the definative test that made them say those evil words to me.

I have every intention of getting then on a regualar basis, I will pay for them myself. To me it seems money well spent. It lit up a .8cm nodule on me, and from what I have heard, that is not possible..but it happened.

Maybe the machine and staff at Loma Linda is exceptional. You are closer to there anyway..can you get it moved to there?

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Karen, I had a PET before any plan of action was decided. And it did NOT light up a 2nd primary LC!

The decision to do surgery, I believe, has alot to do with how skilled the surgeon is and how many times he has done LC surgery. You certainly would NOT want a general surgeon to do this very difficult surgery.

As I stated earlier, all my doctors thought my tumor was wrapped around, and into, a major blood vessel, making surgery impossible. It was not until surgery that it was discovered that the tumor was not in the blood vessel and the surgery was successful, surprising even the surgeon. You have to realize that reading films is very subjective. Two different doctors looking at the same film can come to different conclusions! I fought tooth-and-nail to have my surgery. If I were you, I'd take all those films and have them looked at by other docs!

Just a suggestion. JudyB

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Guest pepperpike

Dear Karen,

Hope all went well at Cancer Center.

My course of treatment was chemo (carbo/taxo) for 3 months then surgery. Prior to surgery, they were going to take only the left lower lobe, but during surgery it was discovered the tumor was much more spread than seen on films and they took the entire lung. As there was node involvement, follow-up radiation and additional chemo were ordered.

I didn't have a PET until during radiation. The argument the chemo oncologist used to NOT order a PET is that any information would not have changed his course of treatment. It wasn't until I was being radiated that the radiation doctor asked for a PET because it could change his field of radiation and in fact did. The PET showed 2 very small spots on the right lung and the field of radiation was moved to include those spots and irradiate them. I am scheduled for next PET on August 21st.

The one thing the surgeon asked me was " were you radiated?" I said no...prior to surgery....and he said good, because radiation makes surgery very difficult.

Please update us on your trip.

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