Laurie Posted June 1, 2003 Share Posted June 1, 2003 Hi All, I know that I have spoken to some of you about this problem that I am having with my Moms Doctor but I thought I would post on it. It has really sent me on a worry spree and i feel helpless that I can not take care of this so far. My Mom just passed her three month mark and the doctor did not scan her with a CT. She had blood work and a Bone scan one month prior. I talked her doctor and told him of my concerns. He thinks she should be scanned yearly or if some symptoms occur which I am not happy about. I want every three months, as I know that stats etc.... I've seen the data. My Mom thinks that she has to think positive and doesn't want this to run her life. She doesn't come on this website and is not familar with the 'stats that keep me up all night'.... I know that she thinks I'm being negative but I just would rather find out everything is okay or it can be caught early if it does occur. There is a 50% chance of reoccurance.. I told her i'm not trying to be negative just want to know everything is okay. She said she might push for one after 6 months. This is very upsetting to me as she doesn't want chemo anymore. I have vocalized many times my concerns to her. She is going to ask her Radiation Onc for a second opinion. God I hope he tells her the right thing. She is just exhausted from the brain radiation. Shes trying to get back on track for her work and is so tired. I feel so bad for her. Hopeful 2 you and her are very close in DX treatments etc.. If you are interested in being a phone buddy and supporting each other please get in touch with me. I think you would be great friends you both are upbeat people and are in the same situation. Keep in mind though that she has never been on these boards and does not like to deal with the "cancer" too much just sees the disease from her perspective. I kind of think that she is in denial.. but its not a bad place to be when you consider some of the alternatives. If anyone can help with any advice for me please post me a reply. I'm not sure what to say to her not to scare her or sound negative but to encourage her to get scanned and stay positive. Thanks all and bless you, Laurie Quote Link to comment Share on other sites More sharing options...
lynn Posted June 1, 2003 Share Posted June 1, 2003 Laurie While I'm not an oncologist I would have to agree with you that at this point in your Mom's treatment a yearly scan is not adequate. Maybe someone who has completed treatment for SCLC can help you out here as to the protocol? How about it friends? Lynn Quote Link to comment Share on other sites More sharing options...
ginnyd Posted June 1, 2003 Share Posted June 1, 2003 Laurie, Can you call the rad onc and express your concerns? Is it an insurance issue? How about another med onc? Tough situation if your mother is not pushing for scans. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 1, 2003 Share Posted June 1, 2003 Laurie, I would be glad to be a phone buddy. I'll do anything you need doing. My doctor is scanning every three months, my next is June 23rd so that is not an unreasonable expectation. How old is your mom? I'm 50, married, have 2 living children, 2 stepchildren and 5 grandchildren. I am a RN and manage a dialysis clinic. I have gone back to work, but only working about 6 hrs. daily. Yes, still fatigued from PCI. My email is: camcort@midsouth.rr.com-----Let me know what you need and I am at your service!! Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted June 1, 2003 Share Posted June 1, 2003 Laurie, I think most oncologists would do every three month scans in the first year after diagnosis. I personally think that a CT/PET scan is the best, followed by CT and PET scans done seperately then, a PET scan only and then a CT only. A plain chest x-ray is not that great. Brain MRI's and bone scans are probably not needed unless there are symptoms that would indicate they be done. I'll tell you why some docs feel like doing this is not worthwhile. They believe, unfortunately based on those damned statistics, that if SCLC reoccurrs it doesn't make much difference when you find it because it's incurable anyway so why bother. Most won't come right out and say it. I don't feel that way. It looks like I may be facing reocurrence right now and I want to start the fight ASAP. Quote Link to comment Share on other sites More sharing options...
Laurie Posted June 1, 2003 Author Share Posted June 1, 2003 Sam-Oh My Gawd... that is Exactly the message that I was getting lound and clear!!! Which was pretty upsetting.. It is like cured or not cured.. I spoke of Topetecan and the 9 year remissions of two others who had it come back over and over and got back into remission hopeful2 - I will be emailing you to exchange numbers.. I think she just needs encouragement and to talk to someone else who is trying so hard to get back on track and exhausted. Katie- As always thankyou for all your support.. I admire you so much Lynn, Ginny- thank you for your replies all are needed and helpful. Bless you all in this fight. Quote Link to comment Share on other sites More sharing options...
Deanna M. Posted June 1, 2003 Share Posted June 1, 2003 Laurie, I would be so insistent on getting a ct scan at this point. I do think the earlier caught the better. I also agree that the oncs do seem to think the way you are saying Sam, it's terrible. I get that vibe from my mom's also. I am praying theat your mom stays in remission for good!!! Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 1, 2003 Share Posted June 1, 2003 Laurie, I agree that a year is too long to wait. After Bill's last MRI of the brain which showed a 50% reduction I asked when would be the next MRI? The radiation oncologist said, "We do not do anymore unless he develops new symptoms!!!!" NO MORE even though he still has a brain met and may develop more!! Honestly, I think that unless we push for it - our loved ones are helpless. Blessings to you, Peg Quote Link to comment Share on other sites More sharing options...
Guest Jonthan Posted June 1, 2003 Share Posted June 1, 2003 I hate to sound low class here, but ABSO- fu**ing-LUTELY they should be doing a CT scan at LEAST THREE months after a remission! this kindof crap really pisses me off BIG TIME! These are supposd to be well educated and well paid individuals who are there to be our advocates, not our downfalls, and if hey cannot hold to it- we must find an oncologist who will do things in our best interests. I don't know why I am even saying ou, because I don't even have cancer, but someone I love very much died of this my mom. i thank God that her oncologists were on the cutting edge and never made any mistakes- because i honestly do not know what i would do with an oncologist like your mom's Laurie. I will pray for you, and your mom to take action and make the right decisions you must now make to move on to better care. Taking a Ct scan every three months is not letting cancer run your life tell her- it is calming those wonders and worries, while also giving someone a fighting chance if a recurrence should occur. Your mom has come a long way- and she has worked very hard to get where she is - tell her i said not to throw the towel in now. We are all very proud of her. Print these out and show them to her. My mom's oncologist was doing a monthly CT scan right after she went into remission- so three months at the very least! - I am so sorry you are having to deal with an oncologist who's brain is pickled! Jonathan te11t@aol.com Quote Link to comment Share on other sites More sharing options...
AnneBurris Posted June 2, 2003 Share Posted June 2, 2003 Laurie, I can understand why you would be concerned and think rightfully so. I read in a lung cancer journal that small cell lung cancer is the fastest spreading lung cancer, that a tumor doubles its size every 30 days. That means a 2 cm nodule could turn to 4 cm in just one month. I'm not trying to send alarms off, but I would be pretty urgent about that too. I'm so happy for your mother's success so far you are blessed. Second opinions are always a good option. Anne Quote Link to comment Share on other sites More sharing options...
Connie B Posted June 3, 2003 Share Posted June 3, 2003 Hi Laurie, WOW, what a DOCTOR!! What a JERK!! What a............ Is there ANYWAY you can get mom to a different Onc Doc???? I will say that most of the people I know with SCLC have CT scan's every three to four months for the first year or SO!!! I have two members one is a 4 year survivor of Small Cell and she has a CT done every 4 months, she did have them done every 3 months up until this last year. The other survivor is a 3 year survivor and she too has a CT scan every three months. STILL!!!! They both also had brain radiation as well, and they both are doing GREAT!! I think I told you about the lady that came to our Lung Cancer Awareness Event last year that is a SCLC survivor of 8 years. Her cancer came back 4 times and when she came to our Event she was doing chemo again for the 5th reoccurence. And she was SOOOO UPBEAT and looked really GOOD! SOOOOO, don't tell me this can't be beat more then once!!! She was REMARKABLE!!! I introduced her to some of my members that are small cell survivors and they were just THRILLED to talk to her and compare notes. So, I never say NEVER!!! My gut tells me this is also maybe an insurance issue????!!!! I hope not!! Good Luck my friend. I know your beside yourself on this and I sure hope we can lend you some support. Maybe you need to share these messages with your mom. Oh Sweetie, hang in there. I know your frustrated and rightfully so! Warm and Gentle Hugs, Quote Link to comment Share on other sites More sharing options...
Debaroo Posted June 10, 2003 Share Posted June 10, 2003 Laurie, you are absolutly right that your moms should be monitored more closely. I would read Connies post to get the point across, to your mom AND I'd go so far as to read it to her Doctor!!! Jonathan, you are not low class, in fact, you hit the nail right on the head! And I'd like to hit that doctor right on the head-for him to be so cavalier with regard to your moms well being is dispicable!! You are absolutly right in being angry, and, while I understand your moms wanting to be positive/almost that attitude that MY mom had just prior to her ovarian cancer diagnosis. My mom felt that if she didn't know, than she could be "blissfully unaware" and therefore not sitting around worrying and letting the cancer take over her life. I told her that it is EXACTLY THE OPPOSITE, when it comes to cancer, ignorance is not bliss, it is deadly. Please keep us posted as to how all of this is recieved by your mom and her doctor. I know that living far makes it more difficult to take the bull by the horns, but you are doing your best...no matter what happens with this situation, you did your best. Just know that. Take care, and thinking of you and your mom. Deb Quote Link to comment Share on other sites More sharing options...
Candy Posted June 10, 2003 Share Posted June 10, 2003 Just wondering WHY, when the technology is there do the doctor's drag their feet about scanning, etc? Is it the cost for insurance companies? I really don't understand what the problem is. The scans my husband has are all pretty routine, not hard on him and it doesn't seem like there could be any possiblity of it being a health hazzard. Also, it doesn't take up the doctor's time as he doesn't actually do them. It seems to me that with such wonderful technology available to them they would USE it! My husband had scans less than two months ago after 6 rounds of chemo and he is having an entire battery again next week. Quote Link to comment Share on other sites More sharing options...
Ry Posted June 10, 2003 Share Posted June 10, 2003 Well Laurie there is always a back door. Many times with my husbands illness and his insurance company I've had to get creative and find another way to get what I want done, a back door so to speak. If I were you I would just ask the family doctor to order it. The oncologist isn't the only person that can order a scan. If you have a good family doc, let him know your concerns and he'll do it. Our family doctor has ordered several things for us. We can get to him faster than the oncologists. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 11, 2003 Share Posted June 11, 2003 Laurie, it has been said again and again, and I also vote for more frequent scanning in the first year after remission, even if it means finding another onc. Don Quote Link to comment Share on other sites More sharing options...
Guest bessb Posted June 11, 2003 Share Posted June 11, 2003 I agree srongly with everyone else, NO WAY! I get scanned once a month probably because I am in a clinical trial. I went to another oncologist who wanted to scan me every two months and I told him emphatically NO! It is my life and I am the once fighting for it and I will be scanned once a month or forget it. Even if the insurance would not pay, I would do it myself. I would get another oncologist IMMEDIATELY for your mom, this one sounds like a major jerk, get rid of him now. There are a lot of oncologists out there and its a pain to switch but do it now for her sake. Some oncologists should not be practicing and her's sounds like one of them. This is too important to fool around with. I think some of them just want to let us die, as one of them told me "it always comes back" in other words, why bother? I cannot believe their attitudes, we are human beings so it does matter to us and we all need and want time and a fighting chance. Bess B Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 12, 2003 Share Posted June 12, 2003 Laurie I hope and pray by all that is holy that your mother can be convinced to think your/our way. Good Luck and God Bless Quote Link to comment Share on other sites More sharing options...
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