Father newly diagnosed with NSCLC

[dhallag]

Hello everyone and thank you for this great forum.

My father (never smoker, non drinker, no lung cancer history in family, no exposure to toxins) is at Mayo Clinic in Rochester. Bronchoscopy revealed today that the 4cm mass in left lung near windpipe is NSCLC adenocarcinoma. Not sure why, but the biopsy taken of the lymphnode was "too small" of a sample to reveal if it was canerous. Full body PET scan completed today and will get results tomorrow morning. Initial thoughts is that it's operable so they set up a meeting wiht surgeon immediately after he'll get the PET scan results. Mayo wants to do surgery as the first option.

We're really trying to find the best treatment plan and best place to be treated. Location is not an issue. So here are a few questions that I have (assuming PET comes back negative):

- are there any other tests (besides lung and heart capacity testing) that are needed to be done in efforts to determine the best treatment plan? what about mutation analysis? what about gene/targeted thearpy tests?

- is surgery, chemo, radiation/proton the only types of treatments available?

- what are some of the potential different surgery options? would rfa or nanoknife be an option?

- what are some of the questions we should be asking to find the best surgeon and best surgery option?

- i've heard of some people having chemo or radiation/proton thearpy before surery, would that increase the chances of a positive outcome?

- why does mayo want to do surgery first?

- why is the standard guidelines the first place where everyone wants to start? how do we find the places that create a treatment plan outside of the standard?

are there any other questoins we should be asking mayo?

thanks in advnace. i hope to learn and post often. this support site is wonderful.

[Muriel]

Welcome! I'm sorry that you have reason to be here, but I think you'll find the people have a lot of information and are very helpful. I'll try to answer some of your questions.

According to Newsweek (I think), the best places to treat cancer are; Memorial Sloan Kettering in NYC; MD Anderson Cancer Center in Houston; Mayo Clinic in Rochester; Dana Farber (Boston?) and several others. You might research cancer and hospitals on google.

Surgery is considered to offer the best option for cure or long life without cure. Sometimes, depending on the stage of the cancer, surgery is followed up with chemo and/or radiation. My understanding is that radiation before surgery isn't an optimal situation because radiation damages tissues and makes healing from surgery more difficult.

Sometimes people have chemo and radiation before surgery in hopes of shrinking the tumor before trying to remove it. The sooner that you dad can get rid of the tumor the better, so hopefully, he won't need other treatment first.

If he has surgery, then the next problem is to keep the cancer from returning. Frequent CTs will be needed.

I had a 3" tumor in my upper right lung (URL) removed in June 2003 and had chemo following that. The doctors seem to think that in Nov. 2004 I had another primary tumor. Had surgery and chemo again and have been cancer free since then. In June 2010, I'll be a 7 year survivor.

We have a number of people here who are longg-time survivors. The longest being a woman from MN who is a 14 year survivor.

Let us know how things are going with your dad and what treatment plans are decided upon.

Muriel

[Janet B]

I am sure more people will be here to give you advice and answers to some of your questions - I have experience with one of them -

what about mutation analysis? what about gene/targeted thearpy tests?

Be sure to ask the doctor about these tests. I was diagnosed with Stage 4 adenocarcinoma in December 2006. My first set of doctors did not bother to test for gene mutation and planned to go with the normal course of chemo and radiation. (because of metasis, surgery was not an option) I went for a second and third opinion at Yale New Haven and Sloan Kettering. Both doctors had the sample tested and it turned out I had the EGFR gene mutation. Because of these tests I opted for radiation and then the drug Tarceva. 3 years later there is no sign of cancer. Tarceva does not work for everybody, but if the gene mutation is there it has good success.

You sound lke you are already researching and questioning - that is wonderful! Take notes, write down your questions, get a second opinion for peace of mind -

God bless you and your father

Janet

[Donna G]

Welcome. Glad you found us. Mayo is a great place! 2nd opinions are also great. I am a long time survivor and I had radiation and chemo prior to surgery to shrink the tumor. Hopefully Connie B will log on and tell you her story, she is the longest survivor I know, and happy to know her!

Let us know what is decided.

Donna G

[jaminkw]

Can't add anything to these wonderful responses except to note that your Mayo is included in the list Muriel cited. Good luck and do check on that test Janet talked about.

Judy

[ts]

Wow Janet - did not realize you skipped first line chemo.

I would add that if they think surgery is a cure - you are looking at Stage I or II and unless they find lymph node involvement, chemo may not be recommended. I know, some of my friends here will say to ask for it anyway for insurance, but that is between him and his doctors. It might be possible to have a VATS surgery - less invasive. Definitely ask them to test for the EFRG mutation - or at least get enough material to do so later, if needed.

You might like to read through some of the information on Cancer Grace. Lots of technical/medical information on various treatment options and why.

http://cancergrace.org/

The lymph nodes - "too small" - well, there are hundreds (?) of them and any sample they take that comes back negative doesn't mean that is the case for all of them. My bronchoscopy was interrupted because it was taking too long and I was starting to cough. They found mine during surgery.

Best surgery outcomes are associated with surgeons who do lots of these. Not a general surgeon with an occasional lung surgery. Get an experienced thoracic surgeon.

BTW - negative means good in this world - no problems, while positive means signs of disease.

Best wishes.

[dhallag]

thank you everyone for your support. ok well, stage iv, all the lymphnodes in/around his lungs, left shoulder bone, and adrenal glad. hopefully the mutation analysis will show something.

any thougths on the best place to go for what i call cocktail thearpy?