Please help us understand what's going on.

[MM]

As I've stated in other posts, Mike was diagnosed with stage 1A lung cancer??? The reasons for the question marks is why won't they do a biopsy? The oncologist wanted to but the surgeons said no.

They even say there's a slight (5%) chance it's a granuloma. The surgeons feel it doesn't really matter what it is because it has to come out. So, they want to do surgery and have a lab biopsy done when he's under and on the operating table. Either way, they say it needs to come out. They are talking a resection or lobectomy.

Now, Mike has seriously severe bronchitis. When he has a bout of it, he can barely walk because of lack of breath. He was diagnosed with it almost 35 years ago. He's had double pneumonia twice in his life time. Also, when he went in for two other surgeries, once when he was 31 and again when he was about 45, he had trouble because of the anesthetic, they almost lost him one time and neither of these surgeries had anything to do with the lungs.

Mike asked about chemo and radiation. The pulmonologist said chemo won't work on lung cancer, yet, if I'm not mistaken, I've seen many here who are having chemo and/or radiation.

So why NOT a biopsy before surgery? Why not chemo and radiation if surgery is such a risk for him? And because surgery is such a risk, why are they pushing it and not even listening to us?

We can't go to a different doctor. Our insurance has sent us to this cancer center and that's who they'll pay for.

Right now Mike is saying he's 99.9% sure he's going to turn down surgery and try and push for the chemo and/or radiation.

I'm sorry if I sound confused. We are and we're scared and disgusted. So, any enlightenment at all will help.

I'll be spending the next 4 days before the next appointment researching as much as I can.

Thanks for any help.

[Connie B]

With Mikes lung problems, even chemo and radiation could be deadly to him from what your saying. Chemo and radiation is hard on healthy people let alone someone who is not heatlhy. These are VERY POWERFUL treatments.

Surgery IS the best option as far as getting the lung cancer out, if in fact it's lung cancer.

I'm confused too. IF they know this is Stage I Lung cancer. how did they come to those findings. Telling you he has Stage I lung cancer, what TYPE of lung cancer are they saying it is? There is Small Cell, Non-small cell (Adenocarcinoma, Sqamous Cell, Large Cell and BAC) are the most common ones.

Please take time and go to Dr. West and ask these questions. He's the man that WILL have your answers. www.onctalk.com

Are there other doctors you can talk to in the same clinic?

Doctor's appointments can be very confusing at a time like this. Please let me suggest taking alone a TAPE RECORDER when seeing Mike's Doctor's. It's very legal and doc's normally don't mind. This will help you to remember what has been said at each appointment.

[MM]

Connie: Thank you so much for your post!! Thank you for the warning about chemo, etc.

They told us because of the results from the PET scan, and in that the mass has linear extensions, they believe it's cancer.

The oncologist wanted to do a biopsy, the surgeon said no because he explained to us he feels the biopsy might miss the cancerous cells and give us a false reading. He wants to do the biopsy while Mike is under and just before the resection or lobectomy. Mike's mass is in the middle of the upper left lobe.

Also, may I explain. Other than his breathing problems, Mike's health is great! He has been on a very disciplined exercise routine for many years.

Other than colds, serious bouts of bronchitis, and flus that attack the respiratory track, he's rarely sick. It's just his lungs that are weak. He's also afraid of how impaired his lungs may be because of the bronchitis and pneumonia.

If you think even with all of this surgery is still the best way to go (and I do understand this is just an opinion), please tell me once more.

Again, thank you so!

[Don M]

The biopsies I had before my 2 surgeries were all inconclusive. The only way they could find out whether it was cancer or not was to do it with a resection and then do the lobectomies.

A pulmonolgist should be the one who decides if your husband can do the surgery or not. I would think that your husband’s medical history should be a factor. I would be antsy too I think. I guess I am confused too. Your profile indicates a lung capacity of 56% I don’t see how a pulmonolgist would approve surgery then.

Your insurance should allow you to get a second opinion. Surgery is the gold standard for 1a lung cancer. The cure rate is 85 to 90 %. There are alternatives. Your husband could have image guided radiation therapy (IGRT), which focuses on the cancer only and not the rest of the lung. Then he could have adjuvant chemotherapy. The chemotherapy would be much harder than the radiation. Your insurance would probably cover IGRT and adjuvant chemo. A more accurate and much more expensive alternative is cyberknife surgery which has similar results and accuracy as conventional surgery. Your insurance would probably not pay for it. Anyway, here is a link where you can visit a cyberknife message board that is run by radiation oncologists and they may offer a short opinion or advice. You could ask them about IGRT.

http://www.cyberknifesupport.org/forum/

Dr. West is likely to give a more thoughtful and detailed response than the cyberknife docs.

Here is a link to a facility that uses IGRT just to give you an idea what it is. There are many facilities that have the technology. Cyberknife is less common. Intensity modulated radiation therapy (IMRT) is about the same as IGRT except that there is no on board imager to give near real time location of the tumor just before it is zapped. IMRT is even more widely available and may suffice. The link below takes you to a facility that also has cyberknife.

http://www.swedish.org/body.cfm?id=1745

Here is a link to a manufacturer's site for an IGRT machine:

http://www.elekta.com/healthcare_intern ... herapy.php

Don M

[MM]

Thank you Don: You stated.."Your profile indicates a lung capacity of 56% I don’t see how a pulmonolgist would approve surgery then. "

When we went in today to have the PFT done and found out his FEV1 was only 56%, we felt sure the pulmonolgist would say absolutely not to surgery.

Instead he just kept pushing surgery. When we asked him about the numbers not being up to 80% that our surgeon requested, he (the pulmonolgist) just said, "well, we've done surgery with numbers like this before". Then we asked him how the people did, he stated "some did good, some did bad". I'm serious, that was his answer to three different questions we asked.

I went to Dr. West's site, and wow, that's a GREAT site. I'm still reading and learning, and have stated my concerns to him. I'm so looking forward to an answer.

One lady did ask a similar question and from what I gather from his answer to her, I'm afraid the answer to us may be that Mike isn't a candidate for surgery. Will wait for his answer.

Thank you so much for replying. Just knowing y'all are out there is so comforting.

[john]

Surgery is the best option for a cure.

There is another survivor on this web site that had a whole side of the lung removed and now is competing in mountain bike races at a pretty high level.

You could ask a bout wedge resections where they don't take as much lung out but ultimately the surgeon will know best

The surgeon will also probably do a lymph node disection. Ask if the surgeon routinely does a full dissection versus sampling. I have read that a full dissection is best but you might want to ask the Dr

Best of luck. It is good that what ever it is it is caught early and I hope it is benign

[mary colleen]

I agree with everything the others are telling you, including Dr. West being a very reassuring and competent source of information.

The very best chance for a cure is complete surgical removal. They are probably assessing it to be 1A based on imaging. If the mass appears to be within certain size parameters, in specific locations, and they are seeing no lymph node or other involvement, you are being given a "clinical staging" based on those findings. After surgery, you will be given a "Pathological staging" which is often (but not always) the same. They will also be able to determine the cell type (such as adenocarcinoma or squamous cell carcinoma.)

Aside from any other medical factors, surgically removed Stage 1A is not really considered to need chemo.

I hope that, if cancerous, this is stage 1A - there is a very high cure rate in that stage.

Best of luck - keep us posted.

[MM]

Thank you Mary. I've written and posted with Dr. West a few times now. Surgery is, as far as Mike's concerned out of the question, and probably (we'll find out Wed.) out of the question for the surgeons too. He's a moderate risk and because of his history, it's probably a moderate +.

I've so enjoyed Dr. West's site. I'm still reading the archives and I've learned more (because of his ability to put things in laymen's terms) from his site than all my research thus far googling terms and looking for answers.

God bless Dr. West and the wonderful people on this board!!

[Don M]

I wonder if video assisted thoracic (VATS)surgery would be less of a risk? The recovery time and healing time is much less and the hospital stays are usually less. Maybe it would be less stress on the lungs?

http://www.cancernews.com/category.asp?cat=12&aid=242

http://www.cshs.org/1526.html

Don M

[MM]

Thanks Don, good point.

[Brandyswa]

If you all are uneasy about surgery go get another opion. You need to call your insurance and talk to them, His life is at stake, don't let them tell you were to go and what to do. Ask tons of questions and good luck. Brandy

[Bruce u]

I had a small spot on the upper part of my left lung. I had CT scans and a PET scan and they still could not tell for sure if it was cancerous. The surgeon said it was a high risk to try to do a biopsy on a pea sized spot. If you are being told that your husband is 1a then it would be less than 3cm as well. Even on the operating table the surgeon was telling me that he did not think it was cancerous. He went in to only do a wedge resection but when he looked at it under a microscope,it looked suspicious so he did a lobectomy removing the upper left lobe. He used VATS and I was out of the hospital in 3 days and going out for drives in a week. I was diagnosed as stage 1b.

[MM]

Mike is high risk because of his FEV1 numbers and past history of lung problems.

Chances are high our surgeon won't even do the surgery. We'll find out Wednesday when we have our third session at the cancer center to go over our options.

Our surgeon had said he wanted Mike's FEV1 numbers up to 80%. His first PFT test his number was only 42%.

After 5 weeks of not smoking, two inhalers, and physical therapy (and Mike is an avid exerciser anyway), his numbers only reached 56%.

This is getting on our nerves. We've been going through this now for almost 4 months with no answers as to what type of cancer, or even if it is cancer. Sorry if I seem out of sorts. My twin was diagnosed 2 years ago with stage III breast cancer. She chose to do nothing and now only has days or a few weeks to live.

It just seems I've been researching cancer forever and Mike and I just want some answers on his. Perhaps we'll get them Wednesday. Sure hope so.

Thank you all so much for your patience, please bear with me.