DebsSky Posted September 13, 2004 Share Posted September 13, 2004 Hi there: I have been reading your posts for about a week now and you guys are awesome!! My mom, (by what the surgeon says), is supposed to have lung cancer. He says that it is extensive, but her bone scan came back clean, her CT scan says that she has a 4.5 cm mass in her left perihilar region, other than the upper left lobe everything else says clear. He says that he cannot operate on her, he came into the room said it was cancer, gave her 6-9 months to live and walked out after about 4 minutes. What the hell is that?? Now he wants to do a bronchoscopy on her this Thursday. Can anyone out there give me any info or support about this. I am going crazy here with this I'm not really sure what to do. Thanks you guys, I will try to be an upbeat member for y'all! Deb Quote Link to comment Share on other sites More sharing options...
MJ Posted September 13, 2004 Share Posted September 13, 2004 hi deb, welcome to the board (although all of us wish that we could've met on better circumstances!). your mom's doc doesn't sound at all empathetic, so i'm sorry about your experiences. you need to talk to an oncologist about your mom's condition if it is indeed cancer (did they do a biopsy?). i'm not sure why the surgeon said that it's extensive, but he may not be able to do surgery now due to the location of the tumor. you really need to get a second opinion though and definitely get some clearer answers to what's going on. i would suggest writing down specific questions to take to the doc too (i.e. how do you know it's extensive? why can't surgery be done? etc.). i hope that things get a bit more settled during the next few days. i know that this is overwhelming, and your mom is lucky to have you by her side. take care. God bless, mj Quote Link to comment Share on other sites More sharing options...
Hebbie Posted September 13, 2004 Share Posted September 13, 2004 Oh my gosh! My mouth just fell open reading about the doctor's handling of the situation! How was her cancer confirmed? Was your mom referred to a surgeon after confirmation of the cancer or did the surgeon make the diagnoses? Your mom needs to see a medical oncologist. I had a cocky surgeon of my own (good....but cocky ) who declared after my surgery that he "got it all" and I needed no further treatment. I decided to seek a second opinion and sat before a panel of oncologists who reviewed my scans and determined that I should be followed up with "precautionary radiation/chemo". A second opinion is always a must! Keep in mind that just because she is not a candidate for surgery, that does not mean all hope is lost! My 75 year old Aunt was not a candidate for surgery last year either for her LC, and she decided she did not want to deal with chemo and would just take radiation. She handled the radiation like a real trooper and felt better immediately. It's been about a year and she feels great. I wish you and your mom the best as you begin this journey together. Quote Link to comment Share on other sites More sharing options...
carrie Posted September 13, 2004 Share Posted September 13, 2004 Hi Deb - The first thing you all will probably need to do is find an oncologist. I too had my primary mass in the upper right lobe of my lung and a mass in my mediastinum area. The mass in my right lobe according to the doctors was fairly large. The surgeon planned to operate - but would do a mediastinascope while I was under anesthesia to make sure the mass in my mediastinum was not cancer, well it was so he could not go through with the surgery. I was told by the oncolgist (chemo and radiation) and also by the thoracic surgeon that they would probably not be able to operate at all. I went through 5 weeks of chemo (once weekly) and radiation (daily), and told all of my doctors that I was not giving up and wanted to look at doing surgery after this round of treatment, I was not giving up. After the treatment I had another pet scan (upon the request of my surgeon) and much to the surprise of all of the doctors the treatment had done what it needed to and I was able to have surgery. I was diagnosed in Feb 2004 with non-small cell adenocarcinoma, stage IIIA and in May of 2004 had surgery. I am now going through another round of chemo to get any residual cancer that may be hiding in there. My point is always get a 2nd opinion, and let your doctors know that you want to be as agressive as possible with treatment. I had more scans ran in June and they all came back clean. If I had listened to the doctors in the beginning I would have never come this far. Tell your mom to hang in there and Good luck. P.S. Also want to let you know for the future, according to my radiation oncologist you can only have so many rads of radiation if you all are looking as surgery as an option, I am telling you this because none of my doctors told me this in the beginning and I almost went over the amount. Carrie Quote Link to comment Share on other sites More sharing options...
DebsSky Posted September 13, 2004 Author Share Posted September 13, 2004 Hi MJ & Hebbie: Thanks for replying. As for the diagnosis, the surgeon says that it couldn't be anythng else other than cancer. There have been no other tests, other than a handfull of chest x-rays, a CT and a bone scan. He never said anything else other than she has only 6 to 9 months to live and he walked out. He came back in for about a second to ask if she would get some blood work done and then flipped open her file to realize she had already had it done. I am just beside myself with all this. Many thanks to you guys! Love and prayers for you all, Deb Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 13, 2004 Share Posted September 13, 2004 I agree with everyone else. You need to find an oncologist, and you need to find a doctor who shares your goals. Period. Even if a doctor is the best oncologist in the world, if he has a different idea of what you are looking for, you will never be able to communicate. So find one who won't kill the hope. How do those guys stay in business? Sheesh. Curtis Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted September 13, 2004 Share Posted September 13, 2004 Hi Deb and welcome even tho I'm sorry you need to be here.The entire diagnostic process will require more than 1 person.You will meet w/ drs,oncoligists(cancer experts),surgeons etc.It's not always the case but ideally you should have a team consisting of all the above.You will need a biopsy to make sure it's cancer followed by staging & a game plan of how to fight and BEAT the dam stuff.Strongly suggest searching out a team that will work together and help you.Don't settle for anyone w/ a defeatist attitude. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted September 13, 2004 Share Posted September 13, 2004 Frank's right, the team approach works best. Find an oncologist you believe in, who believes in your mom and you. Let him 'quarterback' the surgeon, who may be willing to operate if the tumor shrinks away from the hilar area ( they don't like to see it there... too close to something or other.) Somebody will mention pulmonary function tests, to see if your mom has good lung capacity for radiation, chemo, surgery, etc, or might need supportive oxygen somewhere along the line. The pulmonist is a good guy to have around, especially if you have radiation to the lung. That's the radiation oncologist. Yeah, you could afford to trade surgeons for a more amenable guy. On the other hand, you might just be able to teach him something. In any case, second opinions are always a good idea. And not all surgeons are that arrogant -- mine wasn't . He's busy, yes, but not arrogant. Good luck to you and your mom, keep us posted. It takes a while before the shock wears off. Take care of yourselves.. XOXOXOXOX MaryAnn Prayers always... Quote Link to comment Share on other sites More sharing options...
DebsSky Posted September 13, 2004 Author Share Posted September 13, 2004 See what I mean, you people are simply awesome!!!! I just cannot believe how fast and wonderful y'all are. I took all of your advise and called the Cross Cancer Institute myself. They told me that the wait time once the surgeon was done the bronch. would not be long and that they would handle her right away. She has a PET coming up on the 22nd as well. MaryAnn, What is the hilar region, if you don't mind me asking? You people have already given me hope. Thanks a million, Deb Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 13, 2004 Share Posted September 13, 2004 Hi, Deb. Yep, get an oncologist. You can't definitively say it is cancer without a biopsy. And even if it is cancer, and it is contained in the lung, the surgeon was way off base with his prognosis. Good luck. Don Quote Link to comment Share on other sites More sharing options...
Elaine Posted September 13, 2004 Share Posted September 13, 2004 Others have given you great advice. Just want to welcome you to the place no one really wants to be, but there is a lot of hope and support here. elaine Quote Link to comment Share on other sites More sharing options...
MJ Posted September 13, 2004 Share Posted September 13, 2004 regarding your question, i believe the hilar is the area in which vessels and nerves enter the lung. i don't know if the area is too sensitive to operate on because of that. i hope this helps. Quote Link to comment Share on other sites More sharing options...
Connie B Posted September 13, 2004 Share Posted September 13, 2004 HI Deb, Sorry you had to find us, but I'm glad we're here for you. Does your mom have SMALL CELL Lung Cancer? That would explain the word (Extensive) Small Cell is staged differently then Non Small Cell. BUT, Chemo works very very well on Small Cell. And most of the time they don't do surgery for small cell anyway. God Bless and Good Luck! Stay with us, we'll do our best to hold your hand and walk with you on this journey. Quote Link to comment Share on other sites More sharing options...
richinsdakota Posted September 14, 2004 Share Posted September 14, 2004 Hi Deb, welcome....sorry to hear of your Moms diag....but you found the right place to help you deal with it. Helped me deal with the shock and fear when diagnosed. Great folks here. Yea, surgeons....from the sound of it, might be the same one I had, or maybe mine was a little less callous, but not much. Seems medical schools must not teach the "bedside manner" skill to drs. anymore...all they know is how to do surgery and bill you , of course. They may be good at surger;y, (we have to trust, anyway), but theyre so d...mn inpersonal and unfeeling . Maybe they have to be..dunno. Mine did that too.. said the stats of survival I asked about, (10-12 months without treatment in my case), were "about right, probably.", then had little more to offer. Then after whole lung removed, he.told my family I was "as cured as anybody"..."we got it all"...etc. Had my family convinced the problem was solved. Well, ...not quite. Im more skeptical than to believe that, so never bought it...knew I wanted to scan to detect any other probs., ...but my family did, and went back home believing all was hunky-dorry in fantasyland. P....ses me off, to say the least, now Im having to remind them the battle is just beginning, not over with , with removal of the primary tumor. Whether its a short or long battle depends on what we find in the CT,MRI,and PET scans. Also may do one precautionary round of chemo. So...important to find an oncologist who not only is good, but with whom you can communicate and feel youre getting the attention and knowledge and understanding of the problem that you deserve and need. And yes, 2nd opinions are valuable, especially if you dont fully understand, or trust youre getting the right kind of treatment, etc. Good luck to you both .... Quote Link to comment Share on other sites More sharing options...
Kaffie Posted September 14, 2004 Share Posted September 14, 2004 Welcome Deb, I'm too new to offer much in the line of knowledge but I can tell you this much, this bunch is just what you said, awesome! I agree with all of the other posts that your surgeon can't possibly tell you that it is definately cancer without a bioposy. My surgeon didn't know for sure until I was in surgery. I had several tests, CT scan, Pet scan, x-rays and more before I even saw the surgeon. Prayers for you Kathy Quote Link to comment Share on other sites More sharing options...
DebsSky Posted September 14, 2004 Author Share Posted September 14, 2004 Thanks so much for all your help and support eveyone, as it turns out my Mom has an appointment tomorrow with a Doctor of Alternative Medicine. His father had great success treating people with Cancer, as well as himself with terminal Cancer 20 years ago, and now he has passed all of his knowledge down to his son who went on to become a Doctor. Have a huge prayer request for his help and wisdom to be effective with my Mom. Thanks and prayers for all, Deb Quote Link to comment Share on other sites More sharing options...
David P Posted September 14, 2004 Share Posted September 14, 2004 Ditto Deb. What they said. Take care. David P. Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 14, 2004 Share Posted September 14, 2004 Welcome Deb. See if you can find out biopsy results. If it is small cell the best treatment is chemo, not surgery. Waiting to hear more. Donna G Quote Link to comment Share on other sites More sharing options...
Fay A. Posted September 14, 2004 Share Posted September 14, 2004 Hey, Deb, If your Mom absolutely must have a bronchoscopy done by the Surgeon you described, I hope that at some point you will pull this man aside and let him know that you appreciate that he is an "important person", and that you understand how busy he is, but that your Mom is also an "important person". Let him know that he had better not ever treat your Mom in such a manner again. Set the ground rules NOW for how your Mom will be handled. I swear, my blood just boiled over this. I don't want to hear any more gargage about how surgeons are supposed to be brusque. There is no excuse for this kind of behavior. None. Quote Link to comment Share on other sites More sharing options...
MayFrog Posted September 16, 2004 Share Posted September 16, 2004 Hi Deb, So sorry you had to experience such a lack of empathy on the part of that surgeon. Makes me so d**n mad when I hear of things like that.....absolutely no excuse. Hopefully, you'll get a good medical oncologist, and that this Dr of alternative medicine can give your mom the support she needs. Keep us posted, Mary Quote Link to comment Share on other sites More sharing options...
paddy Posted September 17, 2004 Share Posted September 17, 2004 My mouth was open too Deb! I think another oncologist is required ASAP. Don't let them destroy your hope. Prayers, Paddy Quote Link to comment Share on other sites More sharing options...
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