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Haven't been to the board except to add my horribly big picture lately due to actually being busy. Now I'm in a quandry and need advice. Don't be afraid to give it..I am not going to jump and do anything that anyone offers..I just need to weigh my options and need opinions of experts!

I went for my Pulmonary Specialist appointment yesterday and he said all is fine. I told him that I had made an appointment in my town with an Oncologist for today and he was a bit surprised, then said great! He spent most of the visit yesterday assuring me that I was going to be fine..that I need to accept that and will be able to sleep, etc (I've been pretty stressed I guess). He said that I will need to follow up every 3 months for 3 years, etc but told me that my family doctor seems more than capable of doing that if I wish and he stressed that this is purely preventive. He also told me that he didn't have me meet with an Oncologist after my surgery because I was cancer free, and there was no urgent need...if there was, he would have been the first to do so (my pulmonary specialist is also the medical director for the Cancer Treatment Center of America). I asked him about the recent paper about chemo after lung surgery, etc and he said that he was not agreeable to me receiving chemo unless it were some type of low dose chemo that was tolerable but he doubted that would even be suggested. He told me that he would be greatly surprised, if after seeing the pathology report, that the Oncologist here would want me to have any chemo.

..welcome to my home town! Went to the Oncologist today and first thing he brought up was the new findings and how he thinks I should have a shunt surgically implanted and have chemo for the next 6 months every 2 to 3 weeks. He said that even though the nodule was small and caught early, since I am so young it must be an aggressive cancer and he thinks I really need to be sure. Then he preceded to tell me horror stories about other patients who didn't and it came back. His words.."If I was 70, he wouldn't bother...but since I'm young..why not?". Of course, him and his partner are the only oncologists in town...they come down from OKC once a week. So here I am ... back where I started from with no options for 2nd opinions in this damn friggin town.

My Pulmonary Specialist had said not to do it if this Oncologist suggested anything above low maintenance. My Surgeon had told me that he didn't want me to have chemo, he did not see a need. When I told the Oncologist that both my Surgeon and Pulm Spec. had said they didn't see a need, he told me that the paper is fairly new and they must not be up to speed. I highly doubt that since both are affiliated with Cancer Centers. If I get a referral from my Surgeon or Pulmonary Spec to see another Onc, that will be in Tulsa where they are....4 hours away. I can no longer drive the 8 hour round trip, my car is getting old and I'm going to end up on the side of the road one of these times.

Okay, so after the usual lengthier than War and Peace post...if anyone is still reading :lol: , my question is this...what the H should I do??? The Onc gave me 2 weeks to think about this ..they made my next appointment on my birthday...thank you!! Anyway, I'm leaning toward telling the Onc, no thank you and hooking up with my family doctor who has been brought up to speed with updates from the Pulmonary Specialist. I mean, this guy is my hero anyway, he is the one who found the little bitty shadow! I can schedule my tests every 3 months and if something comes up, we will deal with it then. I can't help but feel that this Oncologist is trying to make money off me...I could be 200% wrong but hell, this is a big money maker, isn't it? I know that there was a paper that came out but are my Pulmonary Specialist and Surgeon THAT wrong? Something else that bothered me...my Pulmonary Specialist didn't take an xray yesterday when he heard that I was seeing the Onc today and he said that the Onc would take one. When I went to the Onc, he had blood drawn but no xray. I asked him if he was going to take a xray of my chest and he said no..there was no need. Doesn't he need a point of reference since he has no other xrays?? Or am I just being picky because I'm a big chicken and I don't want a shunt and I don't want chemo unless I know I need it?? Or will I be sealing my fate by not getting it?? Help!!!

Debi :roll:

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Hi Debi,

It would be so nice if there were a right and a wrong answer. I've read the studies and expert discussions of the the studies and I still don't know whether adjuvent chemotherapy is right or not. I'm sure that all of your doctors are good doctors and have good opinions. Yes, the medical oncologist's opinion is somewhat colored by the fact that chemotherapy is what they do and how they make money but the latest studies do back them up.

Your chances of long term survival without chemo is 65% to 75% in stage I cancer and 35% to 50% in stage II disease. With chemo it may be as high as 89% with T1 disease and 85% with T2, according to the studies. I think you will see that most medical oncologists will probably reccommend chemo now and most surgeons and pulmonologists won't, at least for now. Neither are wrong or right.

My vote - 3-4 cylces of platinum based chemo.


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Debi, I just don't have a good feeling about your oncologist, but that is just from what you write. Is there a possibility of visiting another oncologist for a second opinion? I realize you have opinions from your surgeon, regular doctor and pulmonologist, but I would put more weight on the oncologist normally. You will probably get varying opinions here, and have to make up your own mind anyway, which is as it should be. Good luck and may you remain clear of cancer from now on. Don

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Debi , I agree with Sam. You have to feel comfortable with your choice. I have been able to attend the semi annual Twin Cities Thoracic Onocology Consortiums ( boy thats a mouth full) and I heard a Physician from the Univ. of Mn speak on his research into developing a reliable test for "micrometastasis". You see many Stage I survivors are told their pathology has clean margins and no sign of metastasis, but pathologists are unable to see single or microscopic metastasis at this time. So even though with the best technology today you are told you are clean they have found that about 40 % will have evidence of disease within a couple of years. (refer to Dr Sam's post). This is another good reason we need to fund research , so doctors as Dr Michael A Maddaus can develop better staging tests to more accurately decide who needs chemo and who does not.

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Hi Debi---after 3 years, my surgeon is the one that still orders my scans and does my check-ups---he is wonderful;

after my lobectomy, i had a consultation with an onc---and he said he did not want to give me chemo, it would do more harm than good---however that could be where the tumor was (on the pluera) and the kind, moderately differentiated(whatever that means)

I guess there are two trains of thought here, what I have read, some say at stage 1A, there is no benefit, others say there is. As I trust my surgeon , I feel comfortable in my choice of not pressing for chemo

I guess what I am confused about is if chemo really did kill cancer cells, why does it then come back with people that had chemo that have been in remisssion? wouldn't the same theory hold true? Maybe Sam can answer that?

I think perhaps you need another opinion and then have to make the choice that is comfortable with you---if you do not feel comfortable with that onc, trust your instinct and try and go to another one--can you take the bus---or maybe rent a car?

hope you are feeling good---

regards eileen

stage 1A

lobectomy 6/00

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Guest Cindygo


Just my two cents, but I have been lurking on this site for a few months now, as I have just been through the agonizing suspicious chest x-ray that led to a ct scan that led to a visit to a thoracic surgeon that led to a pet scan that led to a lobectomy and final outcome of stage 1B adenocarcinoma.

I went for my surgery to one of the top cancer hospitals in the country because, for this, I wanted the best of the best. After surgery on June 20, which went very well--I only spent 3 nights in the hospital, during my follow-up visit with my surgeon, he said that they, as a group at his hospital, "softly endorsed" chemo after stage 1 cancer surgeries because of the findings of the new study.

I spoke with an oncologist at the hospital, and my oncologist here in my city (I am also a breast cancer survivor of 2 years), and they both felt that chemo was absolutely the right thing for me to do.

I start my chemo on the 14th of this month, and am having 3-4 cycles of cisplatin/gemzar. The routine will be cis/gemzar on week one, gemzar only on week 2 and 3, then a week off. Repeat this three or four times.

You see, I have been blindsided by cancer two times in the last two years, and by that I mean that I had no symptoms either time, and it was through a routine mammogram that my breast cancer was discovered (I had no lump). A follow-up visit with my breast surgeon this spring led to a chest x-ray at his suggestion--not routine for him, but he knows I was a smoker. I want to do every single thing I can to prevent ever hearing those dreaded words come out of the mouth of one of my physicians again.

That's just my perspective--we all have to make our own choices. By the way, I am a 47 year old, otherwise extremely healthy woman. Take care of myself--good diet, exercise, don't drink--the only really bad thing I did is smoke, and that got me.

Good luck to you--------

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I would vote to do something. Here is a clinical trial. Though it is randomized. By looking into the clinical trials they will do a bunch of tests on the tumor sample and you will get more information on

whether they think you are risk. At the very least you will

get more information and you can drop out of a trial at anytime.

http://www.clinicaltrials.gov/ct/show/N ... 2?order=16

In anycase, some people tolerate chemo quite well but others don't. Try to get as much info as you can.

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After the new recommendations, as a stage IIa survivor, I would jump on the chemo bandwagon. If it came back, so be it, but I would have done everything within my knowledge and wouldn't be beating myself up with "if only...".

My onc said she doubted that older surgeons would be opting for adjuvant chemo for quite some time, until more corroborating data transpires, but that newly-trained surgeons would.

I know this is a tough decision. No matter what, the Cancer Sword of Damocles continues to hover above our heads :cry: . It's good that you are seeking input...but the final choice will be yours. Best of luck with your decision making.

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To add my 1 cent. You can also have the tumor tested for different

prognostic indicators. For example, p53 is a gene that is associated with worse survival statistics and there are other tests like testing for a RAS oncogene, HER2 or Erbb2, etc.

Mitotic rate, and grade of the tumor will help. You could even have chemosensitivity testing done on the tumor, although the jury is still out on this and insurance does not pay.

Some tumors don't respond as well to chemo, than other tumors. So if you can get the most information about your type of tumor this will aid in your decision.

It definitely is not an easy decision.

Best of luck

Best of luck.

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Hey Debi;

I had this conversation with my oncologist back in June right after the report came out. I was stage IIB and the recommendation was no follow- up chemo which was over 2 years ago. My doc said he was at the conference and said in light of the findings he would have recommended it. Knowing what I know now about lung cancer, I would have opted for it. My feeling is ya just gotta give yourself every posible chance. Still, I feel for ya, cause it's a tough decision. Hope this helps and good luck!

God bless and be well

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

" absolutely insist on enjoying life today!"

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Guest marciaatl

Wish I had the definitive answer myself. I was diagnosed in early June and had a lobectomy one month ago, on July 9. Stage IA, with no evidence of any mets anywhere, clean nodes and clean margins.

I had been advised to get chemo by three different oncologists, based on the abstract of the new study. I presume they have read the whole thing by now, which I haven't, although it looks like one of the other people posting knows some more details. When I went to the oncologist I selected on Monday morning, he surprised me by NOT saying "well, let's get you started on such-and-such a date".

Instead, being an absolutely wonderful type of doctor, he confessed to some humility, and that people at Stage IA are sort of "on the cusp" in this situation. He said that no Stage IA patients were involved in the study, so the answer is just not so crystal clear. He said that some oncologists are more conservative and some more aggressive, and that he wanted to consult with other colleagues and then get back to me with a consensus recommendation! Wow.

I have the sense that this is where the picture lies - there is not one single doctor who has the absolute answer, and I tend to agree with the idea that I would feel "better safe than sorry", and go ahead with the darn chemo in order to increase my chances.

It is true that it is better tolerated by some than others, and that it is all much better than it was 10 or 15 years ago. My doctor's protocol is apparently to break a monthly dose into three segments and give it to me once a week for three weeks, then a week off, and then the same thing next month, for four months total. He predicts that should be more well tolerated, generally (but nobody can promise a bed of roses at all).

Another friend (not with lung cancer, though), is seeing a medical doctor who is somewhat alternative, who gives a very low dose of chemo "boosted" with an insulin shot, on the theory that the insulin "fools" cancer cells into believing they are about to have a feast, they open up and swallow the chemo, so to speak. This is not an accepted medical approach, but one the Cancer Center may know about.

Sorry I can't be of more help - we are definitely caught up in this rapidly changing area.

If you do chemo, be sure you read up and ask a lot of questions about chemo, and about the various things you can do (nutrition, vitamins, supplements, meditation, visualizations, etc.) that can make it more tolerable.

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sorry to keep dwelling on this-but if chemo killed cancer cells, why would it come back to people in remission?

I just do not see the benefit when people are staged 1A--

I would prefer, that if it came back, that I would be strong and have not had chemo my body--I do not want to use as a preventative treatment, which I do not believe that it is

just my opinion


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Thanks so much all of you, for your input. As someone who can't decide on a daily basis where to go for lunch, it is greatly appreciated!

I agree with much of what everybody said and I guess thats why it makes it so difficult TO decide. I have made an appointment with my family doctor for next Tuesday and will talk to him about this, maybe getting a referral for another oncologist (hell, I can hitchhike! :lol: ) In the meantime, I'll check out stuff about chemo and all on the internet so I'm better informed on that phase of this never ending horror show.

I guess that's why this hit me so hard. My specialist and surgeon have been saying since the surgery that it is over..to put this behind me and learn how to live again. I hate to beat a dead horse but like I said earlier...these 2 are extremely involved in cancer care and I cannot find a reason why they would not be suggesting chemo for me if it was necessary even though they are NOT Oncologists.

Eileen, what you just posted is basically what my Surgeon had told me a few weeks ago. He had said that if I am "clean", lets not "waste" the chemo and weaken my body for nothing. He told me that with the 3 months followup for 3 years, we will save the chemo and rad for when and if we know we need it. On the other hand my Pulmonary Specilist just said there is no reason..that from what I had and how small it was..my odds are over 80% already. Who knows, huh??

Anyway, thanks much all for the advice...you guys rock!!!

Debi :)

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Peace of mind - what price? That's where I'm at. I'm looking at almost 2years now since my lobectomy for a stage 1a adenocarcinoma -

most frequently I'm told it is gone, it was small, it didn't go anywhere, my life goes on -

They do xrays and that is all, every few months. I've been seeing a pulmonary doctor, and my surgeon for checkups. Last time I went in to surgeon xray looked fine. They sent me home. Next week they call me back - radiologist not happy with xray. Come in for cat scan.

It'd been 1 1/2 years and not a single cat scan since the surgery. I found that disturbing as everyone here had cat scans, early or not. But I got a cat scan - radiologist isn't sure about things still- either that density is a mass in my left lung - or it is the pulmonary artery.

Doctor looked at cat scan, thinks all is okay, says come back in 6 months.

I went home, made appointment with oncologist.......saw him......he suggests a PET scan - I had that done yesterday. I will know the results on the 18th when I see him again. He said it was likely 90% chance all was fine, 10% that something would show up somewhere.....oh please no cancer, please no!!!......

If the news is good news, if all is clear, then that makes me feel so much better - like I can breathe again, live again, now that I'm at the 2 year point (it comes back at the 2 year mark, most often, if it comes back, they tell me)........

SOMEBODY has to be in that 75 or 80% that survive long term - I want to be one of those somebodies!!! It's hard to believe - to feel I am - for everyone I ever knew with lung cancer - went quickly - they were far far along when diagnosed, though -

I am grateful for being a stage 1 but I know I can go from stage 1 to stage 3 or 4 over night, too. That terrifies me.

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I understand. Although I'm only starting the journey that you have already been on, I feel your fear. I think our battle is with lung cancer of course, but the other part of the battle is with our mind. I know that my mind can wreak havoc on me... here it is 3:00 in the morning and I can't sleep because my mind is going in circles.

The fact that your doctor said 90% chance that everything is okay, I think is a real good sign that you will be okay. I mean, those are better odds than we live every day, right? :) And as far as being one of those people who make it through this...sounds like you are on your way! It is good though that you took matters into your own hands and ended up having the Pet Scan done rather than wait for 6 months. Smart move!!

I will be thinking of you this next week and hoping that all works out well for you (it really does sound like it will!). Please post on the 18th and let us know how it went!


46 years old

Surgery June 16, 2003, upper & mid right lobes removed

Stage 1A

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Janet, I am 3 1/2 years from a lobectomy, Stage 1B Anenocarcinoma and I only get x-rays every 6 months and CT Scan once a year. It doesn't seem like enough compared to others on here. I don't have an oncologist as I didn't have chemo or rad and my surgeon moved - I do see a Pulmonologist every 6 months. I have never had a PET Scan - he doesn't think it is necessary - I wonder if I am doing all that is possible to catch a recurrence early. I am open to any comments or suggestions from anyone. And Janet, I will praying for a good result from your scan. Take care, Nancy

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Stage 1a here. I initially took the "you won't need chemo" as great news! My DX was about the time all this possible benefit info was coming to light with most of the onc. world, so after I heard about it, I asked ALL my docs. GP, Onc, Pulminologist, Surgeon.

They all said it was an option, but they did NOT recommend it for someone at my stage, and with such a small tumor. They suggested that at this point in time, the "cure" was worse than the potential of disease.

Like others in the "nay" section, I decided that I would not weaken myself if I needed to fight further.

This is ultimately your decision, I know it's a hard one. Weights and balances..tuff one. You had 2 lobes involved. I may have a different attitude of that was my case.

I am curious about Doctor Sams stats. I have read and was told 87% survival rate avg. at this stage, and supposedly I was even higher due to my age, health and tumor size. Be honest..is this positive "doc" speak to keep my positive attitude? I often wonder if they do that.

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I have not saw or heard any pecentage of survival at given intervals. I was thinking it was 5 years to return. I am scheduled for c scan in October (4 mo after surgery). I was never told what stage I was in. My Onc said at least stage 2...might be 3...could even be 4. He just never would say except as of date of surgery, it had not met anywhere else.

Will be praying for all.


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Nancy, our follow ups sound similar. After surgery, I had to see my surgeon once every 2 months, then every 4 months, then every 6 months. I also had to see my pulmonologist on about the same schedule, but he moved out of state and I went to the next closest doctor who never remembers my name or anything about me or my case. I see her on about the same schedule as my surgeon.

Each of them say xray at each visit. So all I ever had since surgery has been xrays - (except when I complained of shoulder pain, they had bone scan run).

Before my pulmonologist moved away he told me I would have xrays at each appointment and a cat scan each year.

When I last visited my pulmonary doctor (new one) I asked if I needed a cat scan, as it had been 1 1/2 years. She said NO - it was tiny cancer, hadn't spread, I didn't need a cat scan.

That didn't leave me feeling good. Everyone here has had cat scans, it seems. My old pulmonologist told me I would have one once a year..

SO...I went to surgeon appointment first part of July ....xray looked fine ...I asked surgeon if I needed a cat scan - he told me I'd get one at the TWO year mark. wow. okay.


I went home...they called the following week about the xray where radiologist wasn't happy with it -- went back in for a cat scan to see what the radiologist was seeing on the xray......

So I got my cat scan. LOL

Radiologist not happy with cat scan either - won't rule out a mass being there - it MIGHT be the artery but can't tell without dye - but doctor looked at this cat scan and says it is so nonspecific, he's not worried about it - come back in 6 months for regular appointment (January).......

That still leaves me uncomfortable. If it's just the artery, COOL! but what if...it's a tumor? That puts me up to stage 4 I think and where would I be by January?

I had the PET scan run - that's a head to toe thing. I guess there could be cancer on my brain, or on my kidneys or maybe there IS something in that lung or who knows what where -

I've now convinced myself that that thing in my lung is cancer again, and that it'll show up in my brain and my bones and WOW AM I EVER DEPRESSED NOW!

I'll see the oncologist on the 18th to hear the results.

I never had an oncologist - I picked this one out of phone book - only one in our area, not hard to pick out. Nobody except one person ever recommended an oncologist to me - I never had chemo or radiation - but ..

Over a year ago I saw a psychiatrist as I was taking antidepressants for 5 months ...she suggested I see an oncologist to watch over things and to reassure me about my state of being cancer free.

It took me over a year to contact an oncologist.

Maybe this is a good thing. If there is NO cancer, then I will be so glad to find out, and it will give me renewed energy and strength - and I'll be glad I had the scan.

If it turns out there IS cancer again, then I'm going to get very depressed again, I know.......but ......even if it is stage 4 which I guess it would be - maybe finding it NOW would be better than if I had waited until my January appointment - ??

I want to live to raise my children. I want to have MORE children to raise and live to raise THEM. I want a lot, I know. I want to LIVE. Any or all of these three things would be great. :)

I coughed up icky stuff today - first time I've done that in a long, long long time. Just a small amount of phlegm but it had a bit of flecking in it - that scares me. Does anyone ever have a little bit of phlegm - flecked/speckled - so long after surgery? so long after quitting smoking? - and still be okay?

I'm starting another batch of essiac tea this weekend, and juicing more carrots, starting more broccoli sprouts, buying more grapes!! :)

Let's pray for a cure - for everyone with this sickness - God can heal ANYTHING and EVERYTHING. Pray without ceasing - I'm going to spend a good part of my Sabbath today in prayer and study. Pray for a miracle for us all.

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I, too, did not have chemo or rad. I was dx. at Stage IIB, but the onocologist and surgeon both said once the lung was out, one is considered "cured." I have had CT scans every 3 months and 3 PET scans since my operation 2 years ago this month. So far, so good! :D

I will continue getting scanned and hope for the best.

Unfortunately, as we can see from the posts having chemo does not guarantee positive results even in Stage 1 patients. I try not to worry about it on a day to day basis, but nobody knows anything for sure.

May all of us do well, have clean scans, and live a full, healthy life!!!

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