Karyn111 Posted February 14, 2007 Share Posted February 14, 2007 Hi all:) I have an elevating CEA level and am a non-smoker (normal values 0-2.5 and mine have gone from 5 to 11) and now shortness of breath, wheezing, rales and a daily persistent cough. My Mom died of lung cancer (mets to bone and then brain) and both of my parents smoked. (I'm 45) Several years ago they found 2 densities at the base of my right lung (no breathing symptoms). I've had the above symptoms for over 9 weeks. Recent CT scan showed lobulated nodulated densities not only in the right lower lobe (11 mm), but now also in the right upper lobe and in the other lung (left lower lobe). Repeat CT scan confirmed these new densities. Here is the ironic part.....lung cancer needs to be discovered early from all accounts, but I'm being told the new densities are too small (2 to 3 or 5mm) to be visualized by PET scan and are too small to biopsy, so we have to wait for a repeat CT scan in 3 months. Given my mother's death from lung cancer and the fact that I'm symptomatic, I am concerned that this is an early lung CA, but want to know if anyone else has gone down this road & have hints about what I should do next. Also of note....during these 9 weeks of having breathing problems, I've also had off & on hip pain. When I asked the radiologist about this, he said there was a mild uptake of the PET scan medium, but he feels it's a bursitis. The radiologist said that since there has not been major growth of the first densities that he would consider these benign. I want to find the middle road of being diligent, but not obsessive. I'm concerned that these densities (however small) are now in another area of one lung and also in the other lung. Any thoughts, hints, sharing of similar experiences would be so greatly appreciated. I wish all of you the absolute very best!!! Karyn Quote Link to comment Share on other sites More sharing options...
ernrol Posted February 14, 2007 Share Posted February 14, 2007 Karyn, Welcome to the site. I would get a second opinion from a cancer center like Sloan Kettering or M. D. Anderson in Houston. You will probably want one If something shows up three months from now, so why not do it now, it will give you some peace of mind. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
masspa Posted February 14, 2007 Share Posted February 14, 2007 Welcome Karyn, I agree with Ernie that a second opinion is warranted - especially since you're having symptoms and have a positive family history, and now have m ore densities than you did before. to confirm what you've heard about the PET - my Mom's onc says that the PET does not tend to "light up" lesions less than 10 mm, so that part's correct, and I guess trying to hit a 2-3 mm lesion during aneedle biopsy would probably have a pretty low yield, but I definately think you should geta secone opinion - preferably at a cancer center if there's one available to you. Jen Quote Link to comment Share on other sites More sharing options...
Don M Posted February 14, 2007 Share Posted February 14, 2007 hi Karyn, welcome. The 11 mm nodule should show uptake if it is malignant. A second opinion is a good idea. I don't think small nodules would be symptomatic. You could visit Dr. West's site and run it all by him. http://www.onctalk.com/forum/ Don M Quote Link to comment Share on other sites More sharing options...
nonni Posted February 14, 2007 Share Posted February 14, 2007 Karyn...nothing at all lit up on my Pet scan..everything inconclusive even on the day of surgery....bottom line...it was LC...so like all our friends here say....a second opinion asap is warrented....good luck...PamS. Quote Link to comment Share on other sites More sharing options...
fight Posted February 15, 2007 Share Posted February 15, 2007 Karyn, I totally agree with the consensus of the group. Get a second opinion and definitely do not wait the three months the doctor is suggesting. I made that mistake early on.....I had a ultrsound done on a suspicious lump back in April 06'and my doctor told me I had nothing to worry about....5 months later I was in the fight of my life. A fight for my life. I wish you only the best in whatever comes next for you! Rachel Quote Link to comment Share on other sites More sharing options...
Karyn111 Posted February 15, 2007 Author Share Posted February 15, 2007 I just want to tell each and everyone of you how very much I appreciate your time, support, advice and best wishes! It's very comforting to have a support group. As you will understand....it's the waiting and what if that's so hard. I'm an RN and usually very active. For me to be off work for 9 weeks is just not normal........nor are the bouts of wheezing (poor pulmonary function tests...Dr. thinks asthma, but I had a methycholine challenge test a few years ago that was totally normal and excluded asthma) and daily coughing & fatigue with normal activities. I see the Pulmonologist today, but am awaiting the appointment with Oncology. I wish each of you the very best and you are in my thoughts & prayers! God bless. Karyn Quote Link to comment Share on other sites More sharing options...
trish2418 Posted February 15, 2007 Share Posted February 15, 2007 Welcome, Karyn, and I'm so sorry you had the need to find us. Like the others, I'd recommend a second opinion. Keep us posted as you figure out a treatment plan. Hang in there. Trish Quote Link to comment Share on other sites More sharing options...
john Posted February 16, 2007 Share Posted February 16, 2007 A PET scan is about 85% accurate. As the size of a nodule gets bigger, I guess it would be more accurate. If a malignant cancer has a low metabolic rate, it will less likely show up on a PET. For example a typical carcinoid. The link below says lobulated nodules have a 30% or so chance of malignancy. Those are good odds. http://www.postgradmed.com/issues/2003/ ... llivan.htm Take care Quote Link to comment Share on other sites More sharing options...
Kaffie Posted February 17, 2007 Share Posted February 17, 2007 Welcome Karyn, I'm glad you found our site, as you can see there are plenty of knwledgeable people here very happy to help, you will also find great support. Please keep us informed Quote Link to comment Share on other sites More sharing options...
Maryanne Posted February 17, 2007 Share Posted February 17, 2007 Just want to welcome you Karyn. Sorry for all you are going through. It is the no knowing that plays on your mind. Keep us posted on what the pulmonary and Onchologist says. We are always here to answer any questions you may have, if you need support, prayers, to vent.... you are never alone here. Maryanne Quote Link to comment Share on other sites More sharing options...
Dazy Posted February 19, 2007 Share Posted February 19, 2007 Hi Karyn! Our stories are almost indentical, and do I ever understand the worry that goes along with watching these new li'l suckers develop. As you'll see from my profile, my "count" has gone from 3 in three lobes, to 7 in all lobes... Some are lobulated (the largest, for one), some are spiculated...most are tiny, and under 5mm. So we watch....every three months...and wait.... I, like you, struggle with finding a middle ground - I've almost become OCD-like in my quest for information but knowledge IS power, as long as we don't let the knowledge freak us out too much, huh? Feel free to PM if ya ever need more info - I have PLENTY Hang in there, and keep us posted!! Yours in HOPE! (& watch ) Stacey Quote Link to comment Share on other sites More sharing options...
Karyn111 Posted February 24, 2007 Author Share Posted February 24, 2007 Good morning What a fantastic group of people you are! Thank you for taking the time to write me and for the kindness & support that you all have offered. I felt bad even being on the forum since I don't have a CA diagnosis and you are all going through "it". I keep you in my prayers each day and hope that your path will be easy as 'possible'. I see the Oncologist on Monday (if our ice storm stays calm) and have my CT scans and PET scans to show him. I will let the group know what he says, as I'm sure I'll have some questions. Take care of yourselves and again..........thank you for your support! Karyn Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 28, 2007 Share Posted February 28, 2007 I opted for one after being told my 6mm nodule found on CAT scan would never be visualaized.well guess what it was not only visualized it lite up!! Had Uptake.Now I am seeing a surgeon this week and it measured 8x9mm larger than CAT said it did.Also wanted to say that reading through this thread someone mentioned that cancer cells are not metabolic.Thats an error they are and that is why PET cans light up. They show hypermetabolic cells ( probable cancer) because cancer cells love sugar!! So everyone who has cancer is indeed of course very sweet.a little levity here folks... JUst my research if I am wrong I'd love to read about that.But if I were you I'd get he PET scan irregardless of what the doctor says will or wont light up or be visualized.I am proof they are wrong.Not sure what I have and may not know for sure till after surgery. Quote Link to comment Share on other sites More sharing options...
Karyn111 Posted February 28, 2007 Author Share Posted February 28, 2007 Good morning everyone I hope you are all doing well and THANK YOU again for all of your information, kindness & support! I saw the Oncologist and she wants to do a Bronchoscopy next. She thought they didn't appear to be cancer or that cancer was less than likely and that she needed to rule out infection. (They have already ruled out pneumonia & TB and I have not traveled out of the country 30 years, so no exotic disease risk factors.) Part of me felt great, but the other part of me felt uncomfortable since "what does cancer look like in a report"? I had densities and now have new ones in different lobes and the other lung. Has anyone had a bronchoscopy? I will admit to being afraid of that particular procedure. If you have had it.....what was it like? Any suggestions? I hope each of you is doing well and has a good day. Fondly, Karyn Quote Link to comment Share on other sites More sharing options...
Heather_T Posted February 28, 2007 Share Posted February 28, 2007 I have had 2 of them and never had a problem afterwards. Now the doc said I did not like him much on the second one I had so he could not get a sample. LOL I think I kept on couphing during the procedure. Anyways don't be scard it is an easy proedure. Goos luck and many thought and prayers going you way for good results. Quote Link to comment Share on other sites More sharing options...
2weimies Posted March 5, 2007 Share Posted March 5, 2007 I just found out I am having one with my surgery...LOL So I cannot say what it wa slike till afterwards...I went to have aPET scan after finding a 6mm nodule on a cat scan.The pulmonologist did not believe it would lIGHT up on the PET scan but it did.The surgeon I just met and who is operating on me on the 13th.said he probably never would have sent me for a PET scan with a 6mm nodule however he said it was so fortunate for me I did get it done.Apparently LC grows for like 5 years before it would ever even be visualized ( dense) enough for a PET scan to pick it up..SO my advice is to advocate for yourself and demand a PET scan.You can always follow up with CAT scans if it shows nothing..But if you wait you may lose valuable time. Good luck. Quote Link to comment Share on other sites More sharing options...
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