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Whats the normal course of action?

Nancy O.

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I'm just wondering what the normal course of action is after surgery such as mine for nsclc staged IIIa? I have seen two different Oncologist since surgery and pulmonary doctor and a radiologist and they all concurred that no chemo or radiation for me. I have since thought that this was the right course of action since I'm 2 1/2 years cancer free since surgery. It just seems to me that pretty much everyone on this board has a lot more in depth testing than I do. I have a chest xray now every six months and my last ct scan was over a year ago. My doctor ordered it after I suggested it. Is this because I don't have health insurance? Would they be pushing for more testing if I did? Not complaining just wondering if my follow-up is normal for my stage. Thanks all. Any other IIIa's out there? :):):)

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Hi Nancy O.,

I'm a great believer in chemo after surgery. Not too long ago it was believed that this did not change survival stats, but that has changed as more research has been done.

Also, I believe more kinds of checkup tests should be performed. I was having CTs done every 3 months and the latest was done the middle of July saying I was s NED. But, because of pain I had an MRI about 3 weeks later. It revealed a spinal tumor that was close to shutting me down. My upper left NSCLC (that was radiated, chemo'd, surgically removed & dosed w/chemo 2 more times) wasn't enough. The obviously remaining cancer cells ate thru 2 vertebrae, destroying them, and formed a tumor in my spine. I have had neurosurgery and cyberknife, and am going to have a new chemo combo. I will alternate between CTs & MRIs to check on progress.

I certainly did not need to go thru all this. At the first surgery my rad-onc said he could drop radioactive seeds alongside the vertebrae, but the surgeon didn't feel this was necessary. HUGE MISTAKE!! Also, my onc didn't think she needed to follow up w/more than CTs. HUGE MISTAKE. Just shows that the patient (caregiver) has to take charge. All the research I did, I never came across the information that my type & position of tumor COMMONLY moves thru bone to the spine!!! The oncologists SHOULD HAVE KNOWN!!!!

Bottom line: Do everything you can. It's YOUR life!!


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Hi Nancy,

I’m not a candidate for surgery. I did find out some information on decission trees for lung cancer. Thought you might be interested in it. Hope this helps. Peace, take care and God Bless.


http://www.nccn.org/patient_gls/_englis ... /index.htm

See: Work-Up (Evaluation) and Treatment Guidelines: Decision Trees Clinical Stage IIIA, T1-T3, N2 NSCLC

Follow-up and Treatment for Recurrent NSCLC

Work-Up (Evaluation) and Treatment Guidelines: Decision Trees:

Clinical Stage IIIA, T1-T3, N2 NSCLC

Follow-up and Treatment for Recurrent NSCLC


The Power Of People Helping People / The Power Of Knowledge / The Power Of God / The Power Of Believing / The Power Of Positive Thinking / The Power Of Never Taking No For An Answer / That’s The Key


Questions To Ask The Doctor About Lung Cancer

http://www.plwc.org/plwc/MainConstructo ... 08,00.html

With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free

http://www.alcase.org/education/publica ... reath.html

The Cancer Survival Toolbox / Free / From NCCS


Clinical Trails Listing Service / Center Watch


Lung Cancer In The News / GOOGLE

http://news.google.com/news?hl=en&editi ... ung+cancer

The Wellness Community / National Cancer Support, Education And Support / Free

http://www.thewellnesscommunity.org/pro ... /guide.asp

Drug Information Online


ALCASE / Alliance For Lung Cancer Advocacy, Support, Education


Unites States / National Library Of Medicine


Health Information / Medical Encyclopedia


Google / Great Search Engine


R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients


American Cancer Society / No Matter Who You Are, We Can Help


Cancer Information Service / NCI


Cancer Research Center / A Cure For Cancer...


American Institute for Cancer Research; Nutrition Hotline / AICR


Cancer Hope Network / Cancer?


Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders


Lung Cancer Information Library / Electronic Library Of Comprehensive Educational Materials On Cancer For Healthcare Professionals And Patients.



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Two and a half years ago, chemo was not reccommended after surgery in NSCLC with apparent successful surgical excision like you had. Now it is but if you're this far out, I don't think anyone would reccomend it for you now. You're very lucky.

As to other tests, one theory is that finding recurrent LC before it becomes symptomatic does not improve survival so why look. I don't agree but it's a very arguable point and a good excuse for not doing expensive follow-up tests. With all of the new drugs and minimally invasive treatment options available now for LC mets, I think we might indeed affect survival and quality of life if the mets are found early. Just MHO.


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Hello Nancy;

After reading your post, I went and got my outpatient testing form that my oncologist scheduled for me. These tests will be done within the next 3 weeks. A chest X- Ray (PA & Lateral), CT scans of the head, chest and abdomen, a bone scan, and bloodwork which includes a CEA tumor profile.

Like you, I am also 2 & 1/2 years post op. I was staged at IIB, with 1 intrapleural node affected ( pretty similar to you). I continue to see my oncologist every 3 months but am now having the ct and bone scans done every 6 months, with bloodwork and chest x-rays every 3 months. I have been complaining about back pain to him, which could be prompting him to watch me a bit closer.

I think you have a right to complain, and I would certainly speak to your oncologist about it. And, yes, your lack of insurance unfortunately may have something to do with it. I don't know much about the insurance, you may want to make some calls or research it. I'm sure there must be options, trials, grant moneys etc. .

Lastly, I think Judy's comments about " doing all you can, because your life depends on it" are on the mark, She is certainly an example of what can happen when things are missed. And as far as Chemo after surgery, like you I did not have it but now regret it. I discussed it with my oncologist last June and was told that yes he would have recommended it based on the lastist stats, but unfortunately it's to late now.

hope this helps and my best to ya!!

God bless and be well

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

" absolutely insist on enjoying life today!"

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Hi Nancy,

Fellow IIIA here -- after my surgery, I was pretty much TOLD that I was having combination radiation/chemo (no argument on my end). After treatment, I was given a PET Scan, Brain MRI and CT Scan, all of which were clear. I was told that the PET Scan would be a "base scan" that they could judge all future scans by. Since that time, I have been on a schedule of having a CT Scan every 3 months. They are not planning on doing another PET or MRI in the immediate future, but they are really good about listening to me and scheduling test if I am having strange aches/pains that are concerning me. My doctors take a pretty conservative approach with me, they said they would rather find something out IMMEDIATELY rather than wait on things.

I hope this helps!

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Wanted to thank all of you that replied. Rich, the follow-up tree was very good. Judy B. I hope that they get it right this time. Thank you Heather and Bob, we are very simular in our diagnosis. And Sam, your imput is alway valuable. I really need to make some decisions before I see the Oncologist. I'm of the mind right now that if it ain't broke don't fix it. But I will really need to look at all the facts. God bless you all. Nancy

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