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Mother diagnosed two weeks ago


ejpritz

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My mother has just been diagniosed with Non Small Cell, stage IV. The oncologist said it is inoperable and incurable. She has an appointment on Thursday 12/18 with a new oncologist for a second opinion, but this past friday her lung collapsed during a needle biospy and she is in the hospital. Hopefully she will get out in time to make this appointment. My main concern with the care she has been given at this point is that nothing has been started. They actaully found the first mass over a month ago, then did a cat scan, then a lung biopsy. The biopsy was inconclusive as to which type she has, so they scheduled another one which just took place on Friday. She was told that she can wait until after Christmas to start Chemo and that radiation is not an option. Starting Chemo after Christmas makes it just about two mothns since they found the mass, which by the way they went looking for due to some blood work indicating cancer somewhere in the body. I don't know if this is the normal progression, but two months between finding the mass in the lung of a smoker, whose blood showed signs and starting treatment seems a little ridiculous to me. I wanted to know what the normal time frame is...do others wait this long ? Or are we being cared for improperly. I would appreciate any advice on this.

Thanks

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Others have waited this long and longer for staging....and it is absolutely IMPROPER. Please make an appointment at a Comprehensive Cancer Center that has an actual "Lung Cancer" program and have your Mom evaluated there. If you will let us know where you live someone may have the name of a good center and oncologist, as well as point of contact information.

I'm sorry about your Mom. Wishing you both the very best,

Fay A.

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I live in Winthrop, Massachusetts, less than one mile form Boston. I have an appointment scheduled for the Thorasic Oncology center at Mass general hospital. I have haerd great things about this place. But this is all so new, so maybe someone knows of somehwre better or has good stories about where she will be going.

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Sorry you had to seek us out, but VERY glad you found us!

It is an unfortunate reality that when stage 4 cancer is diagnosed some doctors take a "oh well" attitude. When that happens it's up to you to do whatever is necessary to get the treatment your Mom deserves. It SHOULDN'T be that way, but it is. I don't know the Boston area but maybe someone else here has had some experience with the various cancer centers around there.

Getting to another hospital or cancer center is one option. I don't have that option in my situation but that doesn't mean I don't get the care I need. I'm MORE than willing to raise a stink if I need to. And I keep raising one until I get what I need. Don't let the men/women in the white jackets intimidate you. It's your mothers life your dealing with here. If quick and aggressive treatment is what you and your Mom want, then let your doctors know that ... and say it loud enough and long enough so they hear you loud and clear.

If you choose, as I did, not to aggressively treat the cancer then let them know THAT also.

Either way don't be bullied, don't be manipulated. That can be hard when you're probably confused and scared a lot right now. One way to lessen some of that confusion and fear is to learn as much as you possibly can about the disease your dealing with. There is a ton of good information right here on this board.

It took a bit of effort but now I have a good team around me. Folks that understand what my desires are and are woking with me to help achieve them.

Good luck with all this. The road we're on can be a bumpy one but we don't have to travel it alone. Stick around and let us know how things are going.

Dean

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Hi Ejpritz,

Sorry to hear about your mother. I live in Medford. If you would like to talk please e-mail at this message board or at dadstimeon@aol.com. I know Mass General is ranked 26Th in the country for cancer and Dana Farber also in Boston is ranked 4Th in the country for cancer. Stay with us. Great site, with great people to offer support and information. Also where I go I've had great success in battling my disease. If you’re interested in another opinion. I have a great doctor and health care team. Hope this helps. Peace, take care and God Bless.

Rich

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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 ... 08,00.html 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)

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Ask her current doctors for copies of all her tests so far. My husband's were put on a CD. First ask the second doctor if they take CD's, if not get a copy of the actual tests. Your mother might have to request them, but you should be able to get them for her. Do this as soon as possible. Even if your mom can't make the appointment, you go with the tests in hand. If you can't get the tests still go-get all the info from your current doctor.

Good luck

Rosanne

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Guest sandrakay

Hi - I'm new to all this - my father was diagnosed with adenocarcinoma stage IV early December. His doctor recommeded that he begin chemo after the holidays too, but today he called her and said he wanted to get on it right away - his first treatment is scheduled for the day after tomorrow. PLEASE remember that the PATIENT is in charge of his/her own treatment - the hard part is convincing your doctor! Be firm! I have a medically fragile child and have learned over the years that most doctors will lean in the same direction as you as long as they feel you are making well-informed decisions. So learn as much as you can so you can help your mother to make good decisions and I'll bet your doctor will be supportive. If not, consider finding a physician who you are more "in tune" with. I can't imagine going through this with a physician you lack confidence in. We all have a very long road ahead of us - I'm so glad I found this site. Best of luck to you and your mother. -Sandra

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