Patty Posted May 20, 2006 Share Posted May 20, 2006 Hi Everyone, Here is the story. That "something" that showed up on my PET Scan in January is still there. Just had another PET/CT Scan done. It is about the size of the end of a finger and has not grown at all. My onc say that "it" may be cancer or may not be. My pulmonologist doesn't think it is anything, just scar tissue which will show up always on a PET Scan. My surgeon says it is not scar tissue and is probably cancer from the first cancer. How can they have such totally different perpectives? My onc & pulmonologist says it does not show up on the CT Scan, just on the PET Scan. Surgeon says it is on the CT and PET. All agree, however, that I should have a mediastinoscopy to check it out, which is scheduled for June 2nd. I want to just take this one step at a time, but my mind just goes and goes. My onc said if it is, in fact, cancer that he is sure that it is the same slow growing cancer I had before. I can't remember the name, adenocarcinoma, I think, which ever one is very slow growing, anyways. He said it could be treated with radiation and more chemo and maybe cured up for good. My surgeon says there is only a 50/50 chance that he can even reach it when he does the mediastinoscopy and the next step for him would be to remove it by major surgery again. The spot is in the place between my lungs, on my right side, and deep inside toward my back. I am thinking that I would like to get a second opinion after the mediastinoscopy, I don't know. I want to think that the surgeon will be able to reach it and confirm that it is nothing, but I guess in my heart I know it's NOT going to be like that. I am feeling like I don't want to play anymore. Thanks for listening...got any ideas...or advice or whatever...Patty Quote Link to comment Share on other sites More sharing options...
Ry Posted May 20, 2006 Share Posted May 20, 2006 Patty did they tell you the SUV of the PET? You should get a copy of the report and find out how much it is lighting up. That might help you in your decision. I would put more stock in the oncologists opinion than the surgeons. Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted May 20, 2006 Share Posted May 20, 2006 It is always hard to know which one of them is correct.They usually always differ a little in opinions.At least in my case they do. I usually pay more attention to whichever ones specialty is related to the question at hand. Quote Link to comment Share on other sites More sharing options...
Kaffie Posted May 20, 2006 Share Posted May 20, 2006 Patty, You sound frantic with confusion and I can totally identify with it. When my spot was first noticed my doctor was positive it was cancer, my pulmonologist was positive it was not cancer and he even went so far as to say he's never been wrong, my surgeon said 50/50 chance of it being cancer but leaning toward the fact that it was cancer because of my smoking history. After all of the playing around like they are doing with you I decided whatever in the heck it was, I just wanted it out of me and said I want surgery now. That was how I made my decision because it was making me crazy not knowing. You have to do what your gut tells you to do whether that be a 2nd opinion or surgery. I wish you the best but keep in mind if it is cancer the sooner it's out the better the chance for cure. Kathy Quote Link to comment Share on other sites More sharing options...
Don M Posted May 21, 2006 Share Posted May 21, 2006 Patty: what a predicament to be in when the docs can't agree. I guess I would go to a major cancer center where they have a team approach and sit at a table and discuss your scans and such. You would want to talk to a surgical oncologist who specializes in thoracic surgery and a medical oncologist who specializes in lung cancer. Don M Quote Link to comment Share on other sites More sharing options...
blaze100 Posted May 21, 2006 Share Posted May 21, 2006 Hi Patty, It sounds like you had bronchoalveolar or BAC like me. My doc called BAC "indolent" which I had to look that word up when I got home, it means "lazy or sluggish". I am suspecting that your spot on the PET is not especially bright, because BAC is so slow growing. I had similar situation to you a few years ago with new spots on the PET but no corresponding spots on the CT. Everyone got excited, but surgeon said PET was "voo-doo science" and sent me home to wait it out. Spots did go away 6 months later. I'm wondering how your surgeon can be so sure he will find this spot when others can't see it on CT. Also he will be creating additional scar tissue which will confound all future scans. Our tumors were both large, and as one doc told me...this stuff is slow growing so your tumor must be very old, so if it was going to spread outside your right lung it probably would have already. I guess, on such short notice, I would sit down with my family doc to discuss the whole situation. One option is postponing your June 2 procedure and being referred to another medical center for second opinion. Your family doc may have other options. Hope this helps, Barb Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted May 21, 2006 Share Posted May 21, 2006 Hi Patty. One of the best things about this board is that we are privileged to share our stories and experiences with one another. Where else can you find that first hand wisdom? I understand your feelings of not wanting to play this game anymore. Time to take a breath and step back for a few days. I have been out of treatment now for 3 years. So far, no recurrence. Though, there were two times when I had a "lc specialist" onc. screaming at me that I did have recurrence and that I needed biopsy and removal by VATS. You would think that with his insistance and passion and intimidation that I would have been compliant. I screamed back. I waited. It wasn't easy to do the waiting, but it was worth it. The next scans said something different. More cutting and loss of lung function was not something that I was willing to jump into. I was compromised enough as it was. I like that nothing shows on the CT. To start to cut because of an elevated PET SUV makes no sense to me. How do you feel about the opinion of a different lung surgeon? How do you feel about waiting another month to re-CT scan? The CT should show something solid if there is something to be removed. They are pretty sensitive if you are getting a high resolution CT scan. Quote Link to comment Share on other sites More sharing options...
Patty Posted May 23, 2006 Author Share Posted May 23, 2006 Thanks to all for your help. I really appreciate it. I am thinking about everything you all said. Your ideas are just as different as the docs ---but that's good!!!!! You've given me some very precious/from actual experience-opinions, ideas & wisdom. Ry, I have never been told about the different uptakes in a PET Scan, only on this board have I even heard about it. That puzzles me, I guess. But then again it doesn't. They never volunteer to give me a copy of anything-only if I request something, maybe that's just how it is. I think maybe they just don't want the patient to "mis-interpret" something? They also tell me that the mediastinoscopy is no big deal????? I was hoping that would clear up the mystery once and for all. Should I not let them do that without a 2nd opinion? All 3 docs agreed & the nurse practitioner agreed I should have it done. I am not so sure I want to wait too much longer. I have already had 2 scans with the same thing on it. I understand what you are saying, CindiO, you are so brave, to have waited like you did. My onc did give me the option of doing that, but then the more he thought about it, he started to worry that it may be cancer now. So of course now I am worried and then when the surgeon is sure it's cancer.... My oncologist did tell me that after I have the mediastinoscopy that he would be happy to assist me in a second opinion. I do like the idea of getting the opinion of a LC Specialist & LC Surgeon, but where do you find them? My son wants me to stay with him(& family) and go to Michigan State Univ. for treatment. I don't think that I want to be that kind of a burden to any of my children, if I don't have to. I live near Chicago, about an hour or so. Don't know which would be better MSU or what Chicago may have to offer. I do wish that I wouldn't have had my lung surgery at a local hospital as I was not happy at all with the care I got there. I wonder about the VATS procedure too? Kaffie? So sorry this ended up to be so long . Well, anyways, thanks for any more advice anyone would like to give me to think about. Patty Quote Link to comment Share on other sites More sharing options...
chloesmom Posted May 24, 2006 Share Posted May 24, 2006 Patty, My lung surgeon is at the University of Chicago, which is on the south side, and probably not a difficult trip for you. The U of C is one of the top cancer care facilities in the country, and I think you would not go wrong with an opinion from them. The very best thing I did through all of this was get associated with that doctor. If you want some particulars, PM me. Cindy Quote Link to comment Share on other sites More sharing options...
chloesmom Posted May 24, 2006 Share Posted May 24, 2006 Sorry, double post. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted May 24, 2006 Share Posted May 24, 2006 Hi again, Patty. A trusted referral is a very good thing. Have you pm'd Cindy about Chicago yet? Good luck. Cindi o'h Quote Link to comment Share on other sites More sharing options...
kreed70 Posted May 24, 2006 Share Posted May 24, 2006 Hi Patty~ Sort of sounds like my mom's situation. If it is cancer, maybe cyberknife?? Read my mom's profile. She has a spot close to the spine at the the spot where the tumor was removed. I hope this helps. I would get another opinion- it can't hurt!! Kelly Quote Link to comment Share on other sites More sharing options...
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