Value of Negative PET Scans Following Treatment

After concurrent radiation and chemotherapy treatment for NSCLC (stage 2B), the CT scans showed the original two tumors were gone, and the "eyes to thighs" PET scan showed no indication of cancerous activity in my body. One doctor considers this fantastic and the other still wants to remove part of my lung. It comes down to "do you do surgery with no indication of cancer because it is standard practice?". Does anyone have any experience with this type of decision??

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I've read up on the subject and surgery is always the way to go if possible. PET scans are great but they can't show one cell and that's all it takes to get things going again.

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I don't know about surgery, but I did whole brain radiation because it was standard practice. MRI this week showed 2 lesions in brain.

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Hi,

I guess my questiona are: Was surgery, post chemo/radiation, the original plan? What kind of docs are the two of them? Have you been to a major cancer center? Whta about a third opinion???

Peggy

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Thanks for the responses. The original plan was to reduce the tumors in size by about 20% and to then have surgery as necessary. Neither the radiation oncologist nor the medical oncologist expected that they would "disappear". But they did. I will be receiving a another opinion from a California center next week. I met with them two weeks ago to go over treatment to date, but last week's scans were mailed to them and only arrived yesterday.

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which CA center?

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I am very new to this forum and I do not yet feel comfortable naming doctors or hospitals. But my CA opinion will come from a facility in the San Diego/La Jolla area.

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You don't need to be "shy" here - we all refer each other dr's and our only motive is that you get the best care possible. The longer you visit this site the more you will come to know this - ....be well...
Karen

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I was staged 3A. I had concurrent chemo and radiation. I had a tumor in my upper right lobe. It all but disappeared after the treatment. I had my lymph nodes tested prior to surgery and they tested negative. I had an upper right lobectomy and have tested negative on all of ct scans since. My surgery was in July, 2008. Hope this helps.
Carol

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That is wonderful. Hope the negative tests continue for you. How long did you wait between completion of rad/chemo treatment and surgery? Jim

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I was told that the PET scan wasn't sensitive enough to be totally dependable and they wanted a pathology report (after surgery) to be certain. Even after 6-8 weeks there was still metabolic activity from radiation. As it happened, there was microscopic cancer in the tissue that was removed and they recommended post operative chemo for additional insurance, which I completed. I was pleased I did, it was not a walk in the park but tolerable and over pretty quick. Despite all they threw at me I would say I now enjoy better health than I have for years.

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Jim,
I had my surgery about two months after my chemo/radiation treatment. The reason for that-because when I had a PET Scan after treatment, a nodule lit up in my LEFT lung. The nodule had been there on the earlier scan but had not lit up, so there was no concern. My doctors conferred and conferred but my surgeon would not do surgery until he knew for certain that the nodule in my left lung was not cancer. I had a biopsy and the pathology report was that the nodule was scar tissue. My surgeon then told me that he was first going to check my lymph nodes on the surgery table and if there was no cancer he would proceed with the lobectomy otherwise he would close me up and I would be treated with more chemo and radiation. Lymph nodes were clean (he removed 20, plus one rib bone) my top right lobe was removed. About a month after surgery I had two more infusions of chemo. I am grateful every day.
Carol

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Jim -

I'm inoperable because I am Stage IV, and because of where my tumor is (in my bronchus, not lung).
But I had Alimta chemo that cleared up all my mets from all over my body. I was clean on a PET scan except for my original tumor. However, the cancer mets came right back, so I believe the PET scan doesn't see every kernel of cancer. I know surgery is hard, but I'd give it long, hard consideration.
Also, my husband and I live in Sandpoint, Idaho, in the winter to ski at Schweitzer Mountain. We spend the rest of the year in Pennsylvania, but we love North Idaho!
Good luck,
Kim

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Hello Kim

My primary tumor was also in the bronchus, but before I started the chemo/radiation treatment the surgeon said it would be operable if it shrunk about 20%, which it has.

Thanks for the input on the PET. Guess PET provides a good data point, but is not decisive by itself.

I have never skied northern Idaho. Our local area, Grand Targhee, has great snow. When we need more apres ski, we head for Sun Valley or Jackson Hole.

Jim

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Hi Jim: Making choices are really tough for all of us. In my case of Non-Hodgkins B-cell lymphoma Stage IV 5 years now. I did not do chemo. It is in "ALL" my lymphnodes and over 40% Bone Marrow. I know most people do these scans to see if it has spread and thus decide the path they will take. In my case I decided to not let them scan me anymore after the 3rd Scan. They will scan you the rest of your life if you let them and since I will not do Chemo or Radiation anyway I figured I was doing more harm than good. A Petscan of my Neck, Chest, Stomach and Pelvis is equivalent to about 3 hundred or more chest xrays. I figure I don't want anymore cancer caused by these scans. I know what symptoms are. Night Sweats, Fatigue, Pain, etc. Since I am not having any of these then I told my Oncologist I wasn't doing any more scans. He said that he understood and that he would work with me. I only have blood work done every 6 months. Due again in December.
I consistently do Natural Alternatives and haven't looked back. I have actually had the best health of my 63 years in the last 5 years. This will probably get me eventually, but if I can feel this good and live 5 more years, hopefully 10 or 15 years God willing then just let me keep the Cancer. I surely wish you well though.
Sincerely,
Dale

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What kind of alternatives do you do, Dale? Am interesting in this not only for my husband, but for a friend that has throat cancer and does not want to do any chemo.

Rose

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Rose: I sent you a email. I am not allowed to post my website on this forum even though I told them it was strictly for information and inspiration. There are no advertisements for me to sell anything on my website. The 4th page on my site tells you about what I have been doing for almost 5 years now. I wish you, your husband and your friend well. If you still have any questions just email me back.

Sincerely,
Dale

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Hi Jim, I'm a nine yr survivorof NSCLC 3A. I had chemo, radiation and removal of my 2 lower lobes right lung. Surgery was about 3 months after chemo/rad. After surgery by about 3 months had a pet. It showed increased activity in my left lung. Thank God it was from the surgery activity not LC. I almost had radiation of my left lung based on the pet. Now I feel great. Surgery is the way to go!- John

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Jazzbo

Thanks for responding. Congratulations. Hope I can send a note like that in nine years. My surgery is scheduled for this week. I will also lose the lower two lobs of the right lung. They did a bronchoscopy last week and took eight samples. All were negative, so I am encouraged.

Jim

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Hello, I too was stage 2 and had chemo before they would do surgery so I did the chemo 1st.. and like you by the grace of god my spot was completly gone and I thought the same as you to forget the surgery but my doctors did the chemo to shrink the size before the surgery.. so after that I did the surgery and ended up having my whole left lung removed// and that was in july of 07 so stick to what the doctors say they do know best...
Thank god I am good now. no cancer and that is waht I pray for for myself and fopr everyone who has beeen dealt this awful hand..
god bless
and I would be sure it never comes back..so I would do the surgery..
Lisa
just my own opinion..

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Dale, I did not get your email for some reason. I wonder if I deleted it as I did not know who it was and I don't open emails that I don't know.

Can you please email me that info again and put in the subject line Team Inspire. Thanks so much.

Rose

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