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Posted

My oncologist is not really into scans. He says they really don't make much difference. I don't feel like he is correct. I called an NCI doctor about a trial and he suggested I have at least a CT scan every 3 months. From what I read here most of you have frequent scans. I think I should have a MRI of the brain, Ct of the trunk and PET if anything shows up on either of the other two tests. What do your docs advise?

Posted

Nushka,

I am amazed that your onc. is not into scans. How else can he tell what is happening. LC is not exactly a loud disease with many symptoms.

Have you gotten a second opinion? Does your insurance cover the scans?

What is your doc's opposition to the scans?

It is your body and I would fight for whatever you feel is right.

Welcome to our board.

Ginny

Posted

Go for the scans , at least for the first couple of years. I don't suppose it would be worth while if you were a ten yr survivor with no signs of disease, but considering it was so recent. I am glad to read you did have chemo. Many drs still don't recognize the need for chemo if Stage I, not realizing the 40 % risk of micrometastasize. Keep us posted now . Donna G

Posted

Hi Nushka,

Yes scans are very important to keep track of lung cancer. Do not understand how else he is going to know. You should tell him this is what you want. It’s your right as a patient. I would seek a second opinion ASAP. Be proactive and do not take no for an answer. 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]

https://cissecure.nci.nih.gov/ncipubs (NCI Publications Locator)

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)

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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)

Posted

Rich has the right of it. Without good scans to keep track of any micromets, you won't know, and either will your doctor. The key here is early diagnosis. That's what we're fighting for, since that equates with better survival.

Ask your doctor why he is so nonchalant about scans...and if that's how he'd take care of his wife.

Be your own best advocate, and be proactive. Please.

You are in our prayers,

XOXOXOX

MaryAnn

Posted

I agree with those here -- scans are an important thing to track progress or regress of the disease. I would tend to want to get another onc. who will do this. Any time Lucie has constant pain in an area, the onc. gets scans. And then periodically, just to be sure. Good luck. Don

Posted

I appreciate all of your responses. I have a family practice doc who believes as I do that I need the scans at least every 3 months. He wants to do a PET each time and the NCI says a CT is enough. My oncologist simply says it won't prolong my life if I have them and find something. In other words he feels like even though you treat mets it doesn't seem to make a difference in the stats. I will get the scans, now all I need to know is what kind to ask for. Is a CT enough or would you go for a PET each time?

Thanks,

Nushka

Posted

MaryAnn.....Your question about how often an oncologist would schedule scans if it was own wife with cancer caught my eye. My onco made it clear to me they don't order scans as often as I'm expecting them. I recently received word the doctor's wife is having surgery tomorrow for newly discovered breast cancer. I wonder if he'll change his tune about the need for vigorous scanning. We shall see....I'll keep you informed if you're interested.

Posted

Mayos,

I had it made clear to me from both my surgeon and my oncologist that there is a standard time frame for followups. Every 3 months for the first year, every 4 months for the second year ( I think), and every six months for the 3 and 4th years. At some point the scans and the oncologist visits diverged, the scans being more frequent, and being timed post surgery not post diagnosis.I get an MRI of the head and neck, and CT of the chest, abdomen, and pelvis, plus a chest Xray. I asked my surgeon about PET scans the last time I was in there, and he essentially said since we have no baseline pet scans, why start now? I suspect if I begin to have problems with mets, the pet would be essential in tracking those.

Yes, please let me know about your oncologists wife. I am not sure who subscribes to the "standard" on followups, but I was under the impression it was widely accepted frequency over 5 years.

Thanks.

MaryAnn

Posted

Nushka,

My oncologist's timeline:

up to 6 months after surgery: X-ray every month, CT every third month (no X-ray when CT)

6 mos. - 1 yr.: X-ray every other month, CT every third scan

1 - 2 yrs: X-ray every 6 months, CT at 3 month interval when not an X-ray

2 - 5 yrs: Scan every 6 months alternating X-ray with CT.

5 yrs +: Annual scan

Doctor does not suggest a PET scan for me as the cost is prohibitive and testing is not local (big surprise, cornfields all around...). That's not to say he won't were something to show up on scans, but for now, sticking to the "easy" ones (like my last CT was "easy"!). Since my insurance has a "cap", it works for me to NOT do a test that will hit that point sooner rather than later....

As for the comments your doctor has, have you thought about finding another doctor, one that will be aggressive in your treatment instead of passive and fatalistic? Bet he looks both ways before crossing the street in case that ol' beer truck is barreling at him...

Becky

Posted

My oncologist told me that "due to my age" they would like to take a "conservative approach" with me and catch anything that should possibly appear sooner, rather than later. (Personally, I think they should take that approach with ALL patients....)

I had surgery to remove my upper right lobe, followed by radiation/chemo for 6 weeks. 2 months after ending treatment, I had a PET Scan to use as a baseline for all further PETs, I had a chest CT and a brain MRI.

My schedule has been a CT Scan every three months and will continue that way for the first 2 years. After that, I believe we will go to a CT Scan every 6 months.

I hate to say it, but I do not agree with your oncologist attitude that scanning you won't make a difference in survival. I believe you have a whole boatload of people on board here that have picked up recurrences early in routine scans, went through treatment, and are experiencing a glorious remission.

Your doctor seems to have no hope. And is instilling that hopelessness in you. It's just my opinion, but it may be time for a new doctor.

Posted
Go for the scans , at least for the first couple of years. I don't suppose it would be worth while if you were a ten yr survivor with no signs of disease, but considering it was so recent. I am glad to read you did have chemo. Many drs still don't recognize the need for chemo if Stage I, not realizing the 40 % risk of micrometastasize. Keep us posted now . Donna G
Donna, where do you get the statistic that 40% of stage 1 has mets?
Guest bucky_a
Posted

My oncologist is like yours, fight for the scans & for wherever you think is necesarly.

I am a 1year surviver &49 years old, Stage IB. Unfortunally I diden't do quimo, I trust my oc, now i regret.

I had a PET scan only because I ask for. XR every 3 month & CT every 6. But if I think somethin is wrong I go to my regular Doc & fortunally he do what I want.

We need to fight for our lifes. Best of luck & if he dosen't pay atntion look for somebody else.

Praying for all of us

bucky

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