2weimies Posted February 18, 2007 Share Posted February 18, 2007 I am new here ,but here is my story. I have a Lung nodule right upper lung.It was discovered on a Cat scan @ 6mm in the ER due to chest pains they thought I was having another PE.The nodule is visible on a PET Scan ( larger than previously thought) now 8mm x 9mm and apparently ' did Lite up" with moderate uptake..... They said if biopsy is deferred than CAT scans should be done at regular intervals to monitor the stability of this nodule" Although the spot where its located is atypical for malignancy they cannot exclude it. I think that the rational for doing the PET scan was to see if there were any cancer cells ( those that suck up the glucose) "uptake"....so I wondered is it ever possible that something can "uptake" and not be cancer??? I can't seem to find that info anywhere........ If anyone is going to do any biopies or whatever I want someone who knows what the hell they are doing. Of course Hopkins just creeps me out as they nearly killed me with the PE after surgery last year . This was something I was not expecting cause the pain in my chest subsided and the pulmonologist said it would definately come back negative ( we never discussed what would happen if it didn't) The pulmonologist wants to refer to a thoracic surgeon. She said they will have to go in and remove it ,cannot be biopsied and if its cancer they'll take the entire Lobe! I am going to (I think) get a second opinion) from a pulmonologist oncologist type doctor probably at Hopkins. I am all for avoiding uneccessary surgery. Does anyone have a similiar story with a happy ending?? I am a Non smoker who is married for 20 years to a smoker. Go figure! Quote Link to comment Share on other sites More sharing options...
barbara5452 Posted February 19, 2007 Share Posted February 19, 2007 Hi, my story is simular, I dont understand them not getting a biopsy, and I was told if surgery was possible that was good. I think I would get a second opinion asap, sometimes we have to push things to go foward never forget that... Best of luck....Let us know and keep in touch.. Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 19, 2007 Author Share Posted February 19, 2007 what size was your original nodule? If you had the upper right lobe removed how can you develop another mass in it?? I thought after researching and reading that removal of the cencer initialy was the best hope for a total cure. Do you think you should have also had chemo or radiation after you initial surgery? How long did it take fir you to recover from the surgery and how was it performed.Sorry to ask so many questions but I want to be totally prepared when I see the doctor.Also did you have a PET scan with your original nodule?? Thanks so much for writing. Quote Link to comment Share on other sites More sharing options...
trish2418 Posted February 19, 2007 Share Posted February 19, 2007 Welcome and good luck. I'd definitely go with the 2nd opinion. Keep us posted. Trish Quote Link to comment Share on other sites More sharing options...
Dazy Posted February 19, 2007 Share Posted February 19, 2007 I would go for a 2nd opinion - NEVER hurts - even a 3rd, if you don't feel quite comfortable... Nodules can light up on PET from inflammation, or infection, as well as malignancy. You didn't mention when the 1st CT in the ER was done. If your nodule grew/changed that much in a short (less than 30 day) period, it may be due to infection, rather than LC, as "volume doubling times" are usually at least 30 days in most LC's. A biopsy is the ONLY way to know for sure. Hoping and praying for the very BEST!! Yours in HOPE!! Stacey Quote Link to comment Share on other sites More sharing options...
Don M Posted February 19, 2007 Share Posted February 19, 2007 If you don't feel comfortable where you are, you should definitely go for a second opinion. Don M Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 19, 2007 Author Share Posted February 19, 2007 I had surgery last march and developed a PE as a result,was on coumadin for 6 months there after and am just getting mysdelf together.I had a cat scan which confirmed the PE in MArch @ hopkins( no nodule) and one in april ( just to check ) and I believe there was a 1mm nodule middle right lung.Another Cat scan in august all fine no PE and still 1mm Lung nodule ( middle right lung) now jan 25 I start having really bad UPPER ight chest pains I wait a day or so and eventually callmy primarty doctor who insists I go to the ER as he thinks I have developed another PE.Good news no PE .ER doctor says follow up with your doctor cause you have alung nodule.He sent me home with films but not report..so I assumed it was same lung nodule middle of teh lung..However it wasn't .They found a 6mm lung nodule same lung but UPPER in pleura area... I was refrred to my pulmonologist who said it was probably nothing as I had no symtoms of lung cancer and am a non smoker...she wanted to follow up in 2 months or so ..But said If I felt better and to be sure she could send me for a PET scan which she calimed would definitely be negtaive due to small size 6mm of nodule...she said teh solution they use is not sensitive enough to catch cancer at such a small size... It took about a week or so to get the insurance companies approval and I had it done feb10th...I picked up the preliminary treport and films and then had the final report faxed ,.The nodule is 8mmx9mm and showed moderate FDGuptake ..and bmaximum SUV of 4.6.No other areas showed uptake!! It said that location was somewhat atypical for a malignant nodule but that malignancy cannot be completely excluded. My pulmonologist immediately wanted to sendf me to a thoracic surgeonand I am trying desperately to get in with a top doc at HOPKINS.I understand he has my films and reports on his desk and I am awaiting a call as to whether he wants to see me urgently for an appintment or else it takes about 3 months to get in and see him!! Questions are 1.Is this malignant? 2.what can be done? 3What else could it be,it wasn't there in march, april or August so its developed and grown to that size since August. 4.Are their blood tests that can be done or something else?? I have no chest pain now that resolved in a few days after the ER visit.and no other symtoms I am terrified.Both my parents died of cancer intheir early 50"s my older sister has Dx malignant melonma ( 3 years older) and several uncles and aunts died of cancer ..its all over my familty Quote Link to comment Share on other sites More sharing options...
Dazy Posted February 19, 2007 Share Posted February 19, 2007 Reading your post, I think you should pursue a biopsy. Personally, if they could reach mine easily, I'd have them biopsied in a heartbeat! Especially if they can reach it via VATS, or needle. It is the ONLY way to know, positively, if it is LC, and what type/stage, etc. Once you know what you are dealing with, you can develop a plan of attack, and GO FOR IT!!! The important thing, is that it appears, at least from your PET, that if it's LC, they caught it early!! Wishing for quick (and encouraging ) answers for you, soon!!! Yours in HOPE!! Stacey Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 19, 2007 Author Share Posted February 19, 2007 I have been trying to get in to see this doctor at Hopkins,brought all my films and reports last thursday.I heard nothing and called today was told they are on his desk...I waited Called back before 4 pm ( when they close ) and was told we don't have it back from him yet so I asked how long should it take.I was put on hold.. a few minutes later this woman says I have 4 people to schedule before you You'll be hearing from us tomorrow...Puzzled I said so I'll be seeing the doctor this week ??she said No in march.I said Oh so he thinks its ok and I can wait..She then says he will see you on Saturday March 2nd and your surgery will be march 12th it is a 3 hour surgery and you'll be in here for 3 days.I couldn't breathe and said what??? what surgery??I have not even seen or spoken to this doctor, what surgery is he planning ????She goes on I'll need to bring you in sooner for PFT and pre op work.I said What??? she said breathing tests and blood work.I said what surgery???she said he will meet with me on the 2nd to discuss it... I pressed on and she said its not really my area but probaly a lobectomy or vats resection/HUH? I left work crying...I need to find a doctor to meet with and talk to.Is this hot shot so sure this is cancer that he is willing to operate without ever meeting me?? Is this standard?? does not sound like any doctor I want taking care of me . Initially I was bothered that I could not get an appt without him first reviewing all my tests and now this scheduling surgery without my input or permission?? How do I find a good thoracic surgeon who specializes in lung cancer in maryland? Please help!! Quote Link to comment Share on other sites More sharing options...
Dazy Posted February 19, 2007 Share Posted February 19, 2007 DEEP BREATH...in - one, two, three, four...out - one, two, three, four...I hope that feels a little better. NO ONE CAN PERFORM SURGERY WITHOUT YOUR CONSENT!!! That said...even if you need a VATS resection (and again, I would, if I could!) I think you do, indeed, need to find a doc you are comfortable with, ASAP!! Maybe you could check some of the other cancer centers in your area... You may also contact Mayo Clinic. They are usually willing to at least review your scans, reports, etc. and render an opinion based upon same. I will check for other resources, but you may want to visit the Bloch Foundation at: http://www.blochcancer.org/main.asp Keep breathing...you WILL get thru this!! Yours in HOPE!! Stacey Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 19, 2007 Author Share Posted February 19, 2007 I don't know what any of those things(VATS) are .My sister thinks it was just a dumb receptionist barely a high school graduate who is playing doctor by dropping all that on me. She is saying don't panic yet. I just can't imagine more surgery ..I nearly died with a PE after the surgery last year and it has taken me about a year to get back to somewhat normal ( as normal as one can be with surgical menopause) Thank you for writing. Why can't they just biopsy it? Or is that what a VATS is? Quote Link to comment Share on other sites More sharing options...
Dazy Posted February 20, 2007 Share Posted February 20, 2007 Yup...that is what VATS (Video Assisted Thoracic Surgery) is - a biopsy and resection technique, much like the endoscopic surgeries performed for so many other conditions. MUCH smaller insicions, and quicker recovery. I'm guessing that with the peripheral location of your nodule, they are unable to biopsy it via bronchoscopy. Have they mentioned doing a CT guided needle biopsy, first? Seems that might also be a reasonable idea. Your Sis is right...try not to panic. (Easier said than done, huh? ) It must be really hard -especially when you've just barely recovered from the PE. I'll keep you in my prayers. Hopefully, you will soon have some answers. Yours in HOPE! Stacey Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 20, 2007 Author Share Posted February 20, 2007 I guess I wont know what this doctor has inmind until and unless I go see him.But to have pre op testing done before a consultation sems a bit too much.I understand I need PFT's which scare me cause I have no idea what they are either and because anything to do with my lungs freaks me out since my PE. I wil definitley take several people with me to ask questions and to support me cause I am paralyzed with fear at this point. Thank you for writing I appreciate it! Quote Link to comment Share on other sites More sharing options...
Dazy Posted February 20, 2007 Share Posted February 20, 2007 I think pre-op testing before a consult is maybe rushing it a little - or maybe the doctor wants a more complete picture of your health prior to making his recommendation at the time of consult...?? As far as PFT's go - that is simply pulmonary function testing. It's easy...you sit in a booth, usually, while they have you breathe, blow etc. and take measurements. Sometimes they will have you inhale an irritant (methacholine, for example, for those with asthma) then they'll usually have you do the same breathing exercises after taking a bronchodilator - albuterol, for example. Really, they just measure your lung volumes, and ability to exchange oxy in the lungs. PFT's are painless, and probably a good idea to have prior to your consultation - they really can't even determine whether you are a surgical candidate, or not, without them. I think surrounding yourself with loving, positive people, and bringing 'em along, as well, is a great idea! And we will do all we can on this end to help chase the mindfreaks away! This is a scary path but YOU CAN DO IT!!!! Sending comforting (((HUGS))) & prayers!! Yours in HOPE!! Stacey Quote Link to comment Share on other sites More sharing options...
2weimies Posted February 21, 2007 Author Share Posted February 21, 2007 seeing surgeon 3/3. doing pft's and preop 3/2. surgery scheduled for 3/13. Quote Link to comment Share on other sites More sharing options...
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