Alisa Posted July 22, 2004 Share Posted July 22, 2004 Hello fellow warriors/caregivers.. I just had my CT scan of chest and would appreciate any comments and/or suggestions from this knowledgeable list. The 2 nodules that were being watched for the last year are unchanged. My onc feels it may be scar tissue from my lobectomy, but nobody knows for sure. They are too small to light up on a PET. He will continue to watch those. Now, something new showed up. A “cluster” of nodules was seen in my right lung (my left lung is totally clear). The radiologist and the oncologist both feel by the size/shape of the cluster nodules that it is inflammation and nothing more. Again, nobody can tell for sure as they are so small they won’t light up on a PET nor can they be biopsied. My onc said they are barely visible on the CT scan and he isn’t concerned yet (easier for him to say!). So, after my persistence, my onc said to ease my mind he has scheduled a CT w/contrast and a separate PET scan 3 months from now to see. Any suggestions or comments? Thank you all so much. Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 22, 2004 Share Posted July 22, 2004 Alisa Sorry you have somethng new to worry about, as if you didn't have enough. I guess what you are saying is they are going to do the contrast scan now? If so that is probably a great idea. Three months may seem like nothing to the Drs but to us it is FOREVERRRRR. They are probably right but probably isn't enough to set your mind at ease. I saw copies of Cat's contrast scans and they were fascinating and precise. From what little I could tell, but they were much easier for a layperson to read, so I bet they are very accurate for someone who really knows what he or she is looking at. Keep us posted. You have always been so kind to me and I hate to think you are worrying. I am so glad you insisted on getting some more accurate answers now. love elaine Quote Link to comment Share on other sites More sharing options...
Alisa Posted July 22, 2004 Author Share Posted July 22, 2004 Thanks for your kind words, Elaine. Actually, this CT was with contrast also. The dr. is having the same test repeated in three months, along with a PET scan. Yes, it's stressful. And I can't burden my young children with it, cause I don't want to worry them or tell them anything until we know for sure. Well, all of us on this board have our worries, don't we? Take care. Quote Link to comment Share on other sites More sharing options...
Hebbie Posted July 22, 2004 Share Posted July 22, 2004 Alisa, I believe there are combination CT/PET machines out there now that are supposed to be highly sensitive -- would that be an option? (Someone else might have more info on this new technology) Quote Link to comment Share on other sites More sharing options...
Alisa Posted July 22, 2004 Author Share Posted July 22, 2004 Actually, Sloane Kettering, where I am getting my scans, was one of the first hospitals to get the CT/PET combination machine. The reason why my onc is having me get it done separately, is because he wants tthe CT to be done with contrast, and when you get the combination CT/PET, the CT part is done without contrast. Thanks for your answer. Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 22, 2004 Share Posted July 22, 2004 Alisa Oh I see now about the scans. The most you can do, I guess, is rely on their expertise and their hypotheses that it is inflammation. You could have someone else read them, I guess, but SLoan Kettering is pretty much the tops. I really hate this for you. I wish there were genies who came out of bottles because now I have the wish I would wish for us all. I know your kids are young, so young. I always think mine are young and then I remember there are those of us here with really little ones. PM me if you ever need to talk. And maybe this is a great time to see about those Chinese herbs, just in case. love you elaine Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 22, 2004 Share Posted July 22, 2004 Alisa, I have had two CT/PET Fusions done (UCLA), and they were both done with IV contrast. I have polycystic kidney and liver disease with other organs involved, and without IV contrast the Radiologists can't distinguish what is what on the CT portion of the exam. You may want to check with the Nuclear Med department to clarify this issue for you. I'm just hoping that what you have is a small cluster of slightly enlarged lymph nodes because you caught some kind of virus that is going to be gone in short order. Quote Link to comment Share on other sites More sharing options...
Alisa Posted July 22, 2004 Author Share Posted July 22, 2004 I'm not sure then why I am having a CT and PET done separately. Maybe I misunderstood the reason why. But my onc said he wanted them done individually for some reason. And Sloane does have the combination machine, so I have no clue. My onc feels the nodules are too small to light up anyway, it is more for my insurance. My onc said inflammation can be caused by a cold, virus, bronchitis, etc., but I haven't been sick in ages. Thanks for answering, Fay. Quote Link to comment Share on other sites More sharing options...
paddy Posted July 22, 2004 Share Posted July 22, 2004 I'm hoping what Fay is hoping Alisa. Positive thoughts and prayers coming your way. Paddy Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted July 23, 2004 Share Posted July 23, 2004 Alisa, I pray that your next set of scans are all good. XOXOXOX Prayers always, MaryAnn Quote Link to comment Share on other sites More sharing options...
Alisa Posted July 23, 2004 Author Share Posted July 23, 2004 Thank you all for your prayers and good wishes. My prayers are with all of you also! Quote Link to comment Share on other sites More sharing options...
Marie Posted July 24, 2004 Share Posted July 24, 2004 I've had inflammation show up several times on ct. So far it has always improved enough that it hasn't been a worry, at least not for the doctors. All my scans have been without contrast. I've asked about it a few times but the docs stay it's all I need right now. Hopefully they're right. I asked to see a Pulmonolist and he had me on an inhaler for awhile to ease the inflammation. I'm sure your next scan will show improvement. Quote Link to comment Share on other sites More sharing options...
Nushka Posted July 24, 2004 Share Posted July 24, 2004 Here is hoping and praying that what the docs see is only inflamation. I know you are worried but we have to trust someone...and it is a good thing if we can trust our docs. Best of luck to you. Nina Quote Link to comment Share on other sites More sharing options...
elnodel Posted July 24, 2004 Share Posted July 24, 2004 Dear Alisa, Let's hope for plain old inflammation that will go away in time. Have you seen a pulmonologist? What about allergies -- could they contribute even if you HAVEN"T been sick? Given this awful humid weather, it could be something as trivial as that. I know my lungs feel awful from the endless postnasal drip that everything triggers, and I have nothing worse than asthma to contend with. My thoughts are with you -- and you little ones! Here's hoping the scans will show up plain and clear. Ellen Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted July 25, 2004 Share Posted July 25, 2004 Alisa, My nodules were there when I was first diagnosed, too small to light up on a pet scan. However, over a year later, they have increased in size and in number. I am about to undergo a trial, in hopes to reduce the nodules. The largest is only a little over 1 mm.. They are now inumerable though. They are now showing up in my kidneys. The worst is that she are in my pericardial tissue. I am praying for you that your nodules are nothing. I wouldn't worry about them unless they start grow. I just want to offer you support and encouragement. My prayers to you and your twins. Chery' Quote Link to comment Share on other sites More sharing options...
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