kimblanchard Posted January 29, 2004 Share Posted January 29, 2004 Hi, My Mom, 82, and a young 82, was just diagnosed with small cell by needle biopsy. Her CT showed one 2cm tumor on the upper right lobe and one enlarged lymph node by her heart. She has had few symptoms, fatigue and some shortness of breath. We have to wait until Feb. 9th for her first appointment with an oncologist. Is this a long time by your standards, we are on a wait list in the mean time. I'm sure there will be lots of test to determine staging but I feel like I need something done now to get her started!!! Lots of anxiety. One question I have had...why doesn't anyone talk about their personal oncologist by name, or treatment centers? Is that not allowed? I'd love to know who the big players are in our geographic area, based on real experiences. I am in Boston, but Mom is in Connecticut. What do you do until that first appointment????? Why can't they start ordering tests to start the staging process if the biopsy is conclusive?? Thanks for the help. I have a lot to learn, and will hopefully find some patience in the process! Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted January 29, 2004 Share Posted January 29, 2004 First, let me welcome you to the "Family". Next I would look at another Dr. if it takes 2 weeks + to get in to see this one. Small Cell grows VERY quickly and while 2 weeks is not that long it is to long to wait by MY standards. I have been spoiled by my Dr.'s I guess. Please feel free to ask any and all questions, read the archives and the sclc section and please pm me if I can do anything. Prayers for your Mom and your family. God Bless, MO Quote Link to comment Share on other sites More sharing options...
Lyn Posted January 29, 2004 Share Posted January 29, 2004 Hi Soccermom, One thing to be aware of is Small Cell Lung Cancer grows VERY QUICKLY. My Mom's tumor doubled in size in three weeks and filled her lung. I was not aware of this at the time or would have pushed for quicker tests. I would try to get her a quicker appointment with the oncologist. I got one in a week. After you see the oncologist, they will probably order bone and cat scans before treatment, so this will take time also. In my Mom's case, radiation was not started till after scans. The radiology oncologist said they could have started radiation before scans, since SCLC grows so quickly. When you're learning along the way, though, you don't question the doctors. Hope this helps some and will give you some ideas for questions for the oncologist. Try to get things moving as quickly as possible. Good luck with your Mom. Lyn Quote Link to comment Share on other sites More sharing options...
paddy Posted January 29, 2004 Share Posted January 29, 2004 Welcome. I agree with the others, I would see another Doctor. I wouldn't wait any longer. Your Mom is lucky to have you in her corner. Best Wishes to you, Paddy Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 29, 2004 Share Posted January 29, 2004 Soccermom, Mo and Lynn are right. Your mom needs to have tests and also treatment started as soon as possible. I am pretty sure you are going to get quite a few responses to your questions. I wish I could help with the SCLC, but I can't. Go to the SCLC catagory and read the posts there, you may be able to find some answers there. I will include you and your mom in my prayers... God Bless Karen Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted January 29, 2004 Share Posted January 29, 2004 Dear Soccermom, Try to get an appointment as soon as possible for your mom. I n my case my dr. talked to me about my cancer, called someone, and i was in a bed in the hospital that day. I was in shock, for sure, but he apparently thought this should be done ASAP. Your mom is in Connecticut. There are many fine medical institutions there. Please browse our website and you'll get a good idea of what is available in your area. Tell Mom i'm a 20 plus month survivor of sclc. She can do it too, i'm prayin' for her. Joanie. Quote Link to comment Share on other sites More sharing options...
Guest Posted January 29, 2004 Share Posted January 29, 2004 I can't speak for all here, but I have no problem giving out our doctors and hospital names. And I agree that you need to get your Mother to another dr. ASAP. When my husband was diagnosed, everyone we knew in the medical field told us not to let any grass grow beneath our feet in waiting for treatment. I wish your Mother well. Ginny Quote Link to comment Share on other sites More sharing options...
Rick Posted January 29, 2004 Share Posted January 29, 2004 Doctors are not different than everyone else, You are always going to find those people that just want to get by and pickup that paycheck. This is definitley not the kind of DR. you want. You want that person that wants to be the best and wants to shine. Basically what I am saying is .. Just because s/he is called DR. doesnt automatically mean they are good. I too think it is too long to wait... Quote Link to comment Share on other sites More sharing options...
Snowflake Posted January 29, 2004 Share Posted January 29, 2004 Time to push for another doctor....and hard. DON'T let a doctor "cow" you with his/her "holier-than-thou" attitude, find a doctor that answers your questions, whatever they may be. Take a notebook, take notes, ask questions (make sure you have a list of them when you go to your appointments, you will NOT remember everything you want to ask and it's so much easier to run down a list). Experience talking here, get a notebook (or 3-ring binder), keep track of when her tests are, get copies of the results, keep questions in the book - along with the answers, phone numbers of different doctors, medical history, etc. Keep it ALL with you, refer back to anything and re-address it if things have changed and a new treatment may be possible... Keep an eye on insurance forms, too. My hospital double-billed for a few procedures and my insurance declined to pay...if you're paying out of pocket, beware of that... Organize for the war, Becky Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 29, 2004 Author Share Posted January 29, 2004 Thanks to all of you for the encouragement and words of wisdom. My Mom will be seen tomorrow, Friday, or at the latest, Monday (2/2) at 9 am. I guess the doc she wants is leaving Friday for vacation so hence the wait. What we will do is see a partner in the practice and get the ball rolling. I guess the doc she wants is moving up north here from Emory/Winship Cancer Institute. Thanks for holding us up! Quote Link to comment Share on other sites More sharing options...
J.C. Posted January 29, 2004 Share Posted January 29, 2004 Soccremom, Good the fastest you know the better it is and the waiting game for the results is shorter. Good vibes and prayers going. J.C. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted January 31, 2004 Share Posted January 31, 2004 It sounds as if she may still be in the limited stage of the disease. I would run as fast as possible to another Onc who can see here right away and get things set up pronto. I was diagnosed on a preliminarily diagnosed on Sat. night and had chemo started the following Thursday and the only reason that the chemo took so long was that it took a few days to get my sodium level up to the point where I could have a bopsy done. I am so sorry for you mothers diagnosis but you have come to the right place for support and encouragement. You will be in my prayers. David C Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 31, 2004 Author Share Posted January 31, 2004 We're moving along. Mom was seen today, Friday, by an associate oncologist. Her bone, brain, pelvic and other scans are scheduled. She should have a port in on Tuesday....and then we treat based on the scan results. Pray for some good news! The doc is hopeful the cancer is contained to her chest but I guess you never know til you scan. He is "going for a cure". I like his attitude. Add us to the list of prayers tonight. Thank you all. I guess I'll move on to the SCLC board and fight the good fight. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted January 31, 2004 Share Posted January 31, 2004 Fantastic news!!!!!!! David C Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted January 31, 2004 Share Posted January 31, 2004 Sounds like you found a Dr. who cares! Fantastic! Prayers will continue! God Bless, MO Quote Link to comment Share on other sites More sharing options...
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