Dad diagnosed with non small cell lung cancer

[nadri]

Hi All

I have just found this board, I have been reading the web exhaustively ever since my Dad was diagnosed a month ago. I will give a full background to my Dad's diagnosis, sorry it is so long just wanted to make his situation clear.

For a year he has had persistant chest pain and seen many doctors about it. Then just over a month ago he had a chest x-ray at a local hospital, the doctors there said it was all clear. However a friend of my Father's who is a thoracic physician thought that something didn't look right. Following on from this he had a CAT scan this showed tumor of about 1.5 cm on the periphary of his right lung. He had a small operation to check that there was no cancer activity in his mediastinal nodes, there wasn't. He was also checked for further mets and none showed up. The surgeon performed a lobectomy however once he was in there he saw further cancer in another different lobe which was too small to show up on any scan, and also some fluid he was worried about. Just before my Dad was discharged the surgeon saw my Dad and he said there was good news in that the pathologist had been working hard and there was no evidence of spread to outside the lung, and that the pleural fluid was not malignant, though there was involvement of hilar nodes.

We were all pleased to hear this however when my Dad spoke to the oncologist, he was told that presence of cancer in the other lobe meant that the cancer had to have spread roung the body and that he was stage IV. We were all very upset and suprised by the turnaround. Then the oncologist said that that although my Dad could start chemotherapy now if he wanted, he wouldn't necessarily recomend this as there is nothing showing up on scans to indicate success or otherwise. We are concerned about any delay to treatment.

We are thinking of getting a second opinion, but would be most grateful of any support, advice etc. now and I am sure in the coming months.

Thanks and best wishes to everyone

[Ry]

Yes, get a second opinion. The delay doesn't seem like a good idea.

Wish you all the best~

Rochelle

[dadstimeon]

Hi Sara,

Welcome and sorry to hear about your dad. You are at the best site with the best people. Stay focused, positive and take it one step and one day at a time. Research as much as you can. Not sure on why the delay? A second opinion is a very good idea. Below are some sites to get you started. Stay with us a let us know. Hope this helps. Peace, take care and God Bless.

Rich

[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 / The Power Of Laughter / United We Stand, Divided We Fall / That’s The Key]

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

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

[Guest bean_si (Not Active)]

Sarah, a second opinion is the best idea, especially since there were contradictory findings. I can see where you would be confused as it sounds confusing to me. I can't understand why they think it's stage 4.

Cat

[JoniRobertWilson]

Hello,

Your father's case sounds a little like my husbands. We were initially told there was 1 tumor in his right lung. He started chemo for small cell. Then a tumor showed up on his back and he began having a pleural effusion. The surgeon went in with scopes and found a lot more cancer. This cancer did not show up on any x-ray or CT scan. The fluid from his pleural effusion did not show any signs of cancer but the fluid did come from the cancer - doc said that isn't abnormal. Sometimes cancer cells show up, sometimes they don't. The doc said the cancer didn't show up for several reasons - the fluid hid it and it was a thin layer.

Please obain another opinion if at all possible. I know that takes times, time you don't want to spend right now because it delays the treatment.

I wish you luck and I wish you peace.

Whatever you do, don't you ever give up hope. Doctors can be great and intelligent but they aren't GOD. They can't know if all. Fight as long as your father wants to fight and enjoy each and everyday!

[Connie B]

Dear Sara,

By All Means get a second opinion, and maybe even a third if need be.

I'm sorry you have the need to be here, but you will find a lot of good information and support here. I would start with Rich's list of website that he so graciously shares with all of us now and then. This man knows his STUFF!

Good luck and keep up posted.

[mhutch1366]

Sara,

A second opinion is a good idea, as is no delay.

Either the tumor spread or there are two primaries, which is rare.

Good luck and God bless...

XOXOXOX

Prayers,

MaryAnn

[Hebbie]

I agree that a second opinion is in order.

I also want to put in my two cents that sometimes surgeons can be rather

"anti-chemo". As my surgeon put it to me this way: "You can seek an opinion regarding chemo or radiation, but there is no proof that it will increase your chances of survival. Besides, that is all irrelevant -- I got it all." (Can you say "cocky"?)

I DID seek a second opinion, and chemo AND radiation WERE recommended, which I did. A short time later, a study was released indicating that following up surgery with further treatment IS worth doing.

It will ultimately be your father's decision, but before making it, he should get that second opinion so that an informed decision can be made by him -- not his surgeon!

Best of luck!

Heather

[nadri]

Hi All

I just wanted to thank everyone very much for taking the time to reply to my message. We are definitely seeking a second opinion now and I will keep you posted as to the outcome.

Just to clarify it was my Dad's oncologist who said that starting chemotherapy now wasn't necessarily the right thing to do. I think my Dad's surgeon was rather surprised by this attitude although he hasn't directly said so.

I have been looking into second primaries in the lung, just how rare are they? I know that I am probably fooling myself but have been looking for some hope that there isn't spread.

Best wishes

[jamie]

Im not sure if your dads cancer has spread or not, but i do think more opinions would be helpfull....

Treatment should always be an option, and noone should ever give up and let this monster take over.

There are so many treatments out there...chemo, radiation, surgery, Iressa, alternative therapies, ect... theres just too many options out there to sit back and do nothing...

Seek more opinions, Im sure someone is out there to help you.

Jamie

[Octobergrace]

Hi Nadri,

Reading your post reminded me of where my Dad, family and I were last summer. My dad's NSCLC was also "overlooked" for months and suddenly we found ourselves in a biopsy and oncologist's office after I took him to the doctor for a bronchial infection. He was stage 4 and I, too, desperately searched the web and every other resource I could think of to educate myself (ha) and to find some ray of hope for him, in his shock and despair worrying about my mother, finances and the Great Unknown ahead of him. Finding this site has been more helpful than I can say, but also lets me know that though the road we have travelled this past year seems long, remarkably blessed at times and also unspeakably hard, we have just begun to understand hard.

My advice to you is that you encourage your Dad to get several opinions early on while you are still in the earliest decision/research stage that follows the shock of the diagnosis and before he and you are pulled into the dependency that one who is fighting for life comes to feel for the doctor "in charge". I would also recommend that you get the evaluation of a multidisciplinary team either at a medical university treatment clinic or at a clinic which uses the multidisciplinary approach to try to get information about what options may be available, now and in future, by each of the treatment modes - chemo, radiation, holisitic, etc.

I have learned the hard way that the drs. of each discipline tend to be resistant to treatment in another modality until they themselves have exploited maximum treatment profit...and then it is too late to be eligible for other treatment since the lung cancer and treatment so compromises one's stamina. And, believe me, they know all this in the beginning when they recommend that one exhaust the treatment at hand before looking into other options.

If I sound angry, I am. I fear that my Dad has been just one of many participants in his doctor's chemo mill. The doctor delayed conversations and contacts to get a multidisciplinary consult and now after all has failed says that he "could" look into protocols but because he "could doesn't mean he should." My dad had an exceptional performance status for most of the year until he contracted chemo induced pneumonia, which he now cannot shake. And that's not all. As my Dad's primary caregiver, I have determined that I will honor his right to make his own decisions with dignity and respect; my dad is older, smarter, braver and better than I am. The doctor speaks right through him to me, as though he isn't there and I cannot confront him about his medical and/or bedside arrogance without usurping my dad's dignity (as his dr. does) and contributing to his fear of insulting the dr. and hearing whatever further bad news this doctor may have to spring on him at any given appt. One is very vulnerable in the journey to accept and deal with this disease. In short, I think this dr. has decided that it's no big deal that my Dad is dying since he is 79 years old and really has no repect for his heroic effort to live on, to fight, to ask his questions on his own terms and in his own time. If we could start again and if I could know what I have learned the hard way, I would encourage my Dad to hear opinions from all modalities before settling on any one treatment and any one doctor. Options really narrow as time goes on and one becomes less emotionally and physically equipped to confront medical stonewalling and the ugly competitiveness for your treatment dollars.

In the meantime, make all the memories you can and make sure you are there and available for the unpredictable and unscheduled moments that are more important than I can tell you. My best thoughts and prayers for strength go with you and your Dad...and with each person whose posts I have read and learned from here.

Octobergrace

[Guest NowakowDA]

My Mom was Dx with NSCLS on June 3rd after a chest xray in an emergency room showed a mass on her right lung. We first went to a Pulmonary specialist who made the Dx after a Bronchoscopy on the 28th of May. This doctor wanted her to go to a medical oncologist. Mom's primary care provider had other ideas. He set up an appointment with a cardio-thoracic surgeon at the University of New Mexico Cancer Center who told her that she was not a good candidate for surgery. This doctor made an appointment with a medical oncologist at the same clinic. The second doctor said he was worried about the larger of the two tumors in Mom's right lung. He said that it is partially obstructing one of her airways. He said that she needs to get that tumor reduced and open up the airway as soon as possible. This doctor told her that the best way to shrink this tumor is with radiation. He told her this even though the second doctors speciality is chemotherapy. So Wednesday, we see a third doctor. This time is a radiation oncologist. So, in two weeks we've seen four doctors, not counting the ER doctors, representing four specialties.

I think the multidisciplinary approach is the best. If you can not find a clinic that offers a variety of specialists, then "do" get a second, a third or even a fourth opinion. It's very very important!

Don

[stand4hope]

Hi Sarah and Welcome! I'm so glad that you found this board. I know I was very excited when I found it and now wild horses wouldn't be able to pull me away.

In regard to what you were told, I have always adopted this policy: When in doubt, check it out!

Keep up posted.

God bless you,

Peggy