S. Jane Posted April 15, 2004 Posted April 15, 2004 My Dad who has limited stage SCLC (completed four rounds of chemo and radiation) has asked me to attend his meeting with the doctor when we learn how the chemo/rad did, the results of the CAT/MRI/PET scans, and next steps. For all who have been there, I'd like to know what kinds of things could come up and questions that we should be asking. This doctor will answer any questions that are asked and answer them well, but doesn't offer the information unless the question is posed. My father is afraid that he will forget to ask somethings and wants my mother and I to be there. The doctor has all ready indicated to my Dad 1) doesn't agree with PCI, 2) that if the cancer does met to the brain, they can make him comfortable, but there is nothing else he will do. My Dad was only seriously sick once in his life (anerysm on his aorta) and all these doctor appointments have really thrown him. I must add, while he will read information I get for him and has asked me to find out things for him, he is reluctant to do any research on his own. Therefore, I feel a lot of pressure not to fail him on this one. Thank you for all that you all contribute. Quote
dadstimeon Posted April 15, 2004 Posted April 15, 2004 Hi Jane, Sorry to hear about your dad. This is the best place with the best people. Stay with us. Research as much as you can. Take one step and one day at a time. Stay positive and focused. Below are some websites for more information. Hope this helps. My thoughts and prayers are with you guys. Peace, take care and God Bless. Rich http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Questions to Ask the Doctor) [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.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) Quote
MO_Sugar Posted April 15, 2004 Posted April 15, 2004 Jane, I am sorry you have to be here but this IS the best place on the net to get information and support while your family battles this beast! MY OPINION ONLY............... Get a second opinion from a Doctor who is willing to be aggresive in treatment. I did PCI and it is not for everyone but in MY case I wanted every opportunity available to beat this before it could beat me (so far I am ahead)! It should be your Fathers decision as to what types of treatment he takes and that why I would suggest the second opinion. Prayers for strength and healing being sent his way (and yours). God Bless, MO Quote
Cindy RN Posted April 15, 2004 Posted April 15, 2004 I totally agree with Mo get a second opinion. Your DR is wrong! If you do not do PCI and it mets to the brain you CAN have radiation to the brain. Some Dr don't because sclc does not have a good prognosis and they are not willing to get aggressive. I choose not to have PCI-my choice-but I will have radiation to the brain if it should mets there. Good Luck Cindy Quote
gerbil runner Posted April 16, 2004 Posted April 16, 2004 I'll vote for a second opinion, too. My mom has 2 oncologists, her main one and the one who will handle stem-cell treatment. They do not agree on PCI, but they DO agree that there is a lot available to treat SCLC. Having PCI, I think (not positive) means any brain mets that do occur may be harder to treat due to limits on how much radiation can be used. Good luck in helping your dad with his decisions. I'd suggest a tape recorder for the office visits so you don't miss anything, if the dr. will agree. Quote
karen335 Posted April 16, 2004 Posted April 16, 2004 Jane, I agree with Mo and Cindy. Get a second opinion, pronto. Your father's stage is limited and is very treatable. Don't wait, start the ball rolling and get approval for your second opinion. I don't know how close you are to a big cancer treatment center, but look for one. You need a doctor who is agressive and up to date on the latest technology. Prayers for you and your dad... Blessings, Karen Quote
Rachel Posted April 16, 2004 Posted April 16, 2004 Jane, I agree with the rest, If you don't feel your Doc is agressive enough seek a second opinion. As for treatment for brain mets, there is radiation as Cindy mentioned. I had 2 mets & did WHR and the mets were gone when I went for Stereotactic. So, don't give up! Prayers & positive energy headed your way. Rachel Quote
S. Jane Posted April 16, 2004 Author Posted April 16, 2004 Wow, Rich, that is an extensive list and I've all ready begun to read some of it. Thank you. I'm gathering from reading the rest of the opinions that you all believe the doctor isn't aggressive enough. Until I came here, we knew nothing about Whole brain radiation, or any other option. I believe the doctor is just guiding us a step at a time with all the so as not to overwhelm us. Perhaps with my 79 year old Dad, the doctor doesn't think WBR will help him if it mets to the brain. I need to look at some reading on that, because it seems here, people have had some good results getting it. I will definately be asking the doctor about it. Regarding a second opinion, we did initially get one from Lahey Clinic (we are in Massachusetts) and the doctor there wanted my Dad to have cistoplatin and V16, because it was more toxic and could hit the cancer harder. As it was, Dad was unable to complete a full dosage of chemo (carboplatin and V16 at 75%) on the last two cycles. Lastly, if anyone reads this, could you tell me if this is appropriate to respond to the posts I receive - do the people who posted look back on it? If I wanted to ask someone a specific question, do I start a new topic? I seem to read the posts and want to ask questions, but don't know the proper route of all this (real new to this type of thing). Since my Dad knows that I am part of this and waits for the answers that I receive, I will be changing my signature line to include his name: Chick. Quote
dadstimeon Posted April 17, 2004 Posted April 17, 2004 Hi Jane, Your welcome. I did not realize you are from Massachusetts when I first read your post. I sent you a PM. Peace, take care and God Bless. Rich Quote
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