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New here, and have lots of questions!


Darci

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Hi everyone, I am hoping that someone here can help us to identify what questions we should be asking the doctors.

My father in law was just diagnosed with lung cancer - I do not know what specific type. He is a very healthy 81 years old, he does not have any specific symptoms - the tumor was discovered through a routine chest xray. He has since had an MRI, a CT Scan and a Pet Scan. We are finding that my in laws have not asked a lot of questions, and I have a TON of questions. The dr is recommending surgery, and I am hoping to attend their appointment with him next week to see if I can get more information. At this point, we don't even know what type of lc he has, or what they are proposing for the surgery.

I am hoping for some guidance as to what we should be asking - I would like to know: what are the other options besides surgery, what are the risks of surgery, what is the recovery going to be like given his age, how fast could it progress if they did not do surgery and just did radiation or some other medication? He is so very active - golfs, bowls, mows his own grass, etc. and we know that the surgery is going to set him back for a long time (the dr told him possibly 3-5 months).

I am going with them to their appointment with the surgeon on Aug 16th and am hoping to be up to speed on what information we need to be finding out.

Does anyone have any other comments or suggestions?

Thanks in advance for any help. I will keep you all in my thoughts and prayers

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Hi,

When I had my second thoracotomy I shared a room with a 74 year old lady who had the upper lobe of her lung removed for cancer. I was 45 years old at the time. I had to work to keep up with her. Let's just say she left me in the dust...several times. :shock:

Age alone isn't a good indicator of how well one may do. We all handle these things differently. There is no way to tell how one is going to respond until the surgery happens.

Based upon your description of your FIL I suspect he'll be another one of those "Eat My Dust" guys.

:wink:

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Hi Darci,

All the questions you listed are just the things that you should be asking. When you have more info I think some folks here will be able to be more of help to you.

Gather the info, get those questions asked, then come back here and let us know. You will be sure to get help.

Kasey

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Hi Darci

Every patient needs a great advocate..and I guess you are IT! Wonderful!

What I can glean from the information is that your FIL is a candidate for surgery! That in itself sounds so very hopeful! If they can cut it out that means it will have been in an early stage.

If memory serves me right, many times a lc surgeon will first do a procedure called a mediastinoscopy. That is where he/she takes tissue samples from the lymph nodes in the center of the chest through a small incision in the neckline. If they come out clean, then they procede with lung removal. If they are contaminated with cancer cells on the opposing side of the primary lung cancer, then they do not remove the lung as the cancer would have spread already too far to be surgically "cured".

Hope this little bit helps.

Ask away with any questions that you may have. Someone will have been there/done that!

Good luck!

Cindi o'h

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Ask if a VAT type of surgery can be done. That is Video Assisted thoracotomy. With this they make 3 small incisions rather than one big smiley. Easier to tolerate and quicker recovery. An epidural is nice for post op pain control, and a PCA ( personal controlled analgesia) in case narcotics are needed. I would bring a tape recorder so you can go over what the doctor said later again. Best wishes. Donna G

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hi Darci. sorry about your FIL's diagnosis.

I am a huge fan of taking notes - more than one person if possible! it's amazing how me, my brother and my mother all hear different things sometimes. your list sounds good, though I would want more specific info on the type of cancer, size and location of tumors, etc.

the people here who've already responded know so much more than I do - I am still new to it all. he's so lucky to have your support.

get the info and bring it back here, you'll get info, love and support.

xoxo

amie

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Hi Darci, Welcome and sorry to here about your FIL. Some great advice. Below are some sites that might be of help to you also. Hope this helps. Stay with us. Keep us posted. Prayers for the best. Rich

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Questions to Ask the Doctor)

http://lcam.org (Lung Cancer Awareness Month / November)

http://www.yourcancersource.com/useful.html (Your Cancer Source)

http://www.merck.com/mmhe/index.html (Merck Manuals / Medical informations)

http://bmj.bmjjournals.com (British Medical Journal's)

http://www.cochrane.org/index0.htm (The Cochrane Collaboration / The reliable source of evidence in healthcare)

http://cancer.gov/dictionary (NCI Dictionary of Cancer Terms)

http://www.nccn.org/patients/patient_gl ... tents.asp# (Lung Cancer Treatment Guidelines for Patients – Version II/May 2004)

http://cancerweb.ncl.ac.uk/cancernet/600081.html (National Organizations That Offer Services to People With Cancer)

http://www.acscsn.org/books (The ACS and NCI Offer Free Cancer Survivorship Books)

http://www.cancercare.org/FinancialNeed ... .cfm?c=388 (Financial Needs: Internet Links for Financial Assistance)

http://www.cancermonthly.com/ (Cancer Monthly (The Source For Cancer Treatment Results)

http://www.roycastle.org (Roy Castle Lung Cancer Foundation)

http://www.ncbi.nlm.nih.gov/entrez/quer ... h&DB=books (NCBI / BookShelf)

http://www.plwc.org/plwc/MainConstructo ... _id=&state (Caregiving)

http://www.cancer.org/docroot/MON/MON_1.asp (Track Side Effects)

http://www3.cancer.gov/cancercenters/centerslist.html (NCI-designated Cancer Centers / Cancer Centers Listed by State)

http://www.healthology.com/focus_articl ... cancernews (How To Eat Well During Cancer Treatment)

http://www.lifeclinic.com/focus/nutrition/nutrition.asp (Nutrition Facts and Information Center)

http://www.about-nsclc.com/content/patient/nsclc (Iressa)

http://www.about-nsclc.com/content/prof/about (Iressa)

http://www.findcancerexperts.com (Find Cancer Experts)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Making Decisions About Cancer Treatment)

http://www.chemocare.com (ChemoCare)

http://www.curetoday.com/currentissue/d ... index.html (Toolbox: Resources You Can Use)

http://www.cancerindex.org/clinks8h.htm (Resources for Caregivers)

http://www.google.com/search?hl=en&ie=U ... sa&spell=1 (Medicaid)

http://www.thehealthinsurance.com/medicaid.htm (Medicaid)

http://www.thebeehive.org/health/contests/medicaid.asp (Medicaid)

http://www.lungcancerfyi.com/lung_cancer_faq.html (Lung Cancer - Frequently Asked Questions)

http://www.lungcanceronline.org/treatme ... osurg.html (Surgery - General Information & What to Expect)

http://www.lungcancerfyi.com/lung_cancer_glossary.html (Lung Cancer Glossary)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Receive the PLWC Bulletin)

http://www.usnews.com/usnews/health/hos ... p_home.htm (Directory Of American Hospitals)

http://www.lungcanceronline.org/tests/index.html (Lung Cancer Online / Test And Procedures)

http://www.vh.org/adult/patient/cancerc ... index.html (Understanding Blood Tests / A Guide for Patients with Cancer)

http://www.cancer.gov/cancerinfo/pdq/tr ... ng/patient (SCLC)

http://www.meds.com/pdq/smallcell_pat.html (Medicine OnLine / SCLG)

http://health.allrefer.com/health/prima ... -info.html (Diseases And Conditions / SCLC)

http://www.hospicefoundation.org (Hospice Foundation Of America)

http://www.hospiceweb.com (Hospice Web)

http://www.hospice-america.org/consumer.html (Hospice Association Of America)

http://www.hospicenet.org (Hospice Net)

http://www.plwc.org/plwc/MainConstructo ... 151,00.asp (PLWC Feature: Talking to Someone With Cancer)

http://www.zanesvilletimesrecorder.com/ ... 87526.html (3-year-old keeps her smile in battle with rare cancer)

http://www.rfalung.com (Radio Frequency Ablation Of Lung Cancer)

http://www.lungcancercoalition.org (Global Lung Cancer Coalition)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (PLWC Feature: Financial Support Resources)

http://www.usnews.com/usnews/nycu/healt ... hqcanc.htm (Best Hospitals)

https://www.alcase.org/advocacy/sign_the_petition.html (Advocacy / Sign the Petition)

http://www.cancersymptoms.org (Oncology Nursing Society)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Questions to Ask the Doctor)

http://www.alcase.org/education/publica ... reath.html (With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free)

http://www.cancersurvivaltoolbox.org (The Cancer Survival Toolbox / Free / From NCCS)

http://www.centerwatch.com (Clinical Trails Listing Service / Center Watch)

http://news.google.com/news?hl=en&editi ... ung+cancer (Lung Cancer In The News)

http://www.thewellnesscommunity.org/pro ... /guide.asp (The Wellness Community / National Cancer Support, Education And Support / Free)

http://www.drugs.com (Drug Information Online)

http://www.alcase.org (ALCASE / Alliance For Lung Cancer Advocacy, Support, Education)

http://www.nlm.nih.gov (Unites States / National Library Of Medicine)

http://www.nlm.nih.gov/medlineplus/encyclopedia.html (Health Information / Medical Encyclopedia)

http://www.google.com (Great Search Engine)

http://blochcancer.org (R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients)

http://www.cancer.org (American Cancer Society)

http://www.cancer.gov (Cancer Information Service / NCI)

http://www.cancerresearchcenter.org (Cancer Research Center)

http://www.aicr.org (American Institute for Cancer Research; Nutrition Hotline / AICR)

http://www.cancerhopenetwork.org (Cancer Hope Network)

http://www.acor.org (Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders)

http://www.meds.com/lung/lunginfo.html (Lung Cancer Information Library)

http://www.lungusa.org (American Lung Association)

http://www.ama-assn.org (American Medical Association)

http://www.docguide.com/news/content.ns ... g%20Cancer (Doctor’s Guide / Lung Cancer)

http://www.healthfinder.gov/Scripts/Sea ... ?topic=506 (Healthfinder)

http://www.medicinenet.com/Lung_Cancer/article.htm (Medicine Net)

http://www.cancerindex.org/clinks2l.htm (Cancer Index / Lung Cancer Resources Directory)

http://www.nfcr.org/site/PageServer?pag ... ncers_lung (National Foundation For Cancer Research)

http://www.patientadvocate.org (Patient Advocate Foundation)

http://www.lungcanceronline.org/effects ... fects.html (Lung Cancer Online / Hematologic (Blood) Effects)

http://www.cancerlinks.org/lung.html (Lung Cancer Links)

http://www.cancer-free.com (Cancer Free Connections)

http://www.healthinsite.gov.au/topics/C ... ung_cancer (Health Insite)

http://www.lungcancerclaims.com (Lung Cancer / Lung Cancer Information Page)

http://www.cancerlifecenter.com/engine. ... =dictionar (Cancer Life Center/ Cancer Dictionary)

http://www.canceryellowpages.com/Resour ... G%20CANCER (Cancer yellow Pages)

http://icare.org (ICARE / The International Cancer Alliance)

http://www.vh.org/index.html (Virtual Hospital)

http://www.lungcanceronline.org/support/financial.html (Lung Cancer Online / Financial, Legal & Insurance Issues)

http://www.lungcanceronline.org/index.htm (Lung Cancer Online / HomePage)

http://cancernews.healthology.com/focus ... cancernews (Cancer News)

http://cis.nci.nih.gov/fact/7_48.htm (Follow-up Care: Questions and Answers)

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Hi Darci,

Welcome, sorry you had to find us, but as you can see already you have found the best bunch of people who are supportive, knowledgable and will send prayers when needed.

Your FIL is very lucky that he is a candidate for surgery. My husband had an upper left lobe removed. The stages go from IA to IV. You are usually a candidate for surgery in an early stage like I or II. Not sure about III. I think if you are III they first give you chemo or radiation to try to shink the tumor so they can operate.

During the operation the staging can change. They test the lymph nodes to see is there is C there. If not the staging will stay the same.

The staging can go up if the lymph nodes are affected. Example, lets say they tests 7 lymph nodes and 2 are infected, well if he started at IA then be would add two so it would become IIB. If more then it would go up. These lymphs would be sent to a lab so you wouldn't get the results for a couple of days after the surgery.

After the surgery again depending on the staging, he would go through chemo. If he is IA he does not have chemo. If IB he has the option of taking chemo which is called adjunctive chemo just for preventage purposes. This would increase another 5% to his rate of the LC non re-occurance. I know that does not sound like alot but it is.

My husband because he is IB his chances of non re-occurance was 65% with the chemo it is now 70%.

Find out if he is a candidate for VATS as that is a much faster recouperation.

Also, do not listen to stastics as LC does not mean a death sentence. There are so many people on here who have beaten the odds and continue to do so.

I know your FIL and his family is really scared right now. But that is just the initial shock and uncertainty of this desease. He will feel better after he starts to accept this and starts treatment. We have all been through this. It will get better. Trust me on that.

Also take notes, so you won't forget

Edited to non re-occurance

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I'm sorry your FIL is having to go through all this.

I have to disagree with what Maryanne has shared with you about staging. First off, I am NOT going to try and explain staging. That is very difficult for the patients to totally understand. And in some cases it's even confusing to the doctor's. :? However,

I was a stage IIIA and I WAS a candidate for surgery.

They do do surgery on people that are Stage IIIA and even on some that are IIIB. MANY MANY MANY things go into staging and it's a doctor's tool more so then a patient information issue.

I will say that you can go to NCI website or the Lung Cancer Alliance website and get the BEST details and examples of staging. These are the professionals, and I am not when it comes to explaining the staging process. OR you can go ASK the EXPERTS here at LCSC about staging if you have questions. Staging starts at O and goes to IV. But, as I said, this is very confusing and more helpful to the doctors.

I like to leave the medical garble to the doc's. :wink:

The size of a tumor does NOT mean he will or will not have surgery. It's LOCATION that is more important. If the tumor is contained to the lung this is good. But I'm not going to go into that either.

I don't want to jump the gun here. And we don't normally talk about Statistics here. :roll: So, please don't pay any attention to survial rates or %'s. This is not an issue for you at this time.

My advise to you is this. WAIT and see what the doctor says before you go in with 99 questions. The doctor may explain things very clearly and in English. :D And if he/she doesn't then you can always come back here and ask us what we think of what he said, and you can get back to the surgeon after that and ask questions. I agree with what DonnaG said about VATS. The doctor may even bring this up to you.

I'm not sure you know all the results of your FIL tests results at this time, but I'm sure the doctor will fill in all the blanks. And all that, will add up to if your FIL has surgery or not also.

Don't jump the gun here. Your going 4 blocks ahead and your moving a little to fast. :wink:

I totally understand where your coming from, but just wait and see what the doctor says FIRST!

Also, people in that age range don't ask the doc's questions. It's just not in there DNA! :wink::roll: There from the era of what you don't know won't hurt you. And GOD forbid you question a DOCTOR! God bless them!

Take care and best of luck and keep us posted.

Hugs,

Connie

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Darci, I am sorry you have to be here, but welcome.

I want to correct what I think is a typo in MaryAnne's post. Chemo should 'decrease' not 'increase' the chance or recurrence.

Your grandfathter being active and healthy will certainly work in his favor.

Keep us posted.

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Hi Darci,

Sorry if you are confused now about the staging which was brought out by Connie, apparently there are different opinions about that. That info I was told by the Thoracic surgeon that operated on my husband.

Apparently, you will have to find out about the staging from your Father-in-laws own doctors.

And Ginny I did mean increase but meant non- occurance instead of re-occuring

Sorry for the confusion Darcy. :oops:

Keep us posted on his progress

Maryanne

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Helpful hint about Staging:

RE: From the (Lung Cancer Mannual) from Lung Cancer Allinance.

Most physicians use the TNM classification system to stage nonsmall cell lung cancer. "T" refers to the size of the tumor. "N" refers to node involvement, and "M" refers to metastasis. Basically, staging is based on the location and size of the primary tumor, the size and location of tumors other than those in the lungs, the presence of cancer cells in lymph nodes, and the spread of the cancer to other organs. All of this information is put together to determine the stage of a tumor.

This is not an opinion, this is to important to offer an opinion on. Staging is a Physicians tool for treatment.

My best to your FIL.

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Welcome Darci,

Your FIL sounds like he's got a lot going for him - his activity level and general enjoyment of life tells me he has a strong body and healthy attitude. After you've spent some time around this board, you'll notice that the option of surgery is generally a very positive thing. I thought, "Oh, well THAT'S good," when I read it in your post.

Sending caring thoughts to you, your FIL, and the whole family.

Leslie

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A Patient's Guide to Lung Surgery

http://www.cts.usc.edu/lpg-thoracoscopy ... edure.html

Vidoe of actual VAT surgery procedure - (you decide whether you can handle watching it - it is graphic)

http://www.nlm.nih.gov/medlineplus/surgeryvideos.html

Patient stories

http://www.siumed.edu/surgery/cardiotho ... ient3.html

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Darci,

A doctor can stage a patient before surgery, but the stage can change with a closer look. I was staged as I or II before surgery and came out a IIIa. I have seen people on the board that received chemo BEFORE surgery when staged IIIa prior to surgery. Some IIIb patients receive chemo and are re-staged and then surgical candidates. There really is no "normal" because the "average person" isn't really a person.

Some people with stage I or II cannot have surgery due to tumor location.

I was a T2N2M0. The "T" is tumor size, the "N" refers to location of positive lymph nodes (if any) and the "M" refers to mets. Note the "2" on my tumor size - it was less than an inch long.

I hope you find some answers soon.

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