patt Posted May 17, 2006 Share Posted May 17, 2006 Hi All, I seem to post in the wrong places. I'm not real computer savy so please bear with me. I am 66 yrs. old, smoked for 50 years, went for a baruim swallow 6 weeks ago and they found a tumor in my right lung. I've had several tests to date and they have not been able to confirm cancer. However, I did see a surgeon who stated he was 95% sure that it was cancer. I am having my upper right lobe removed on May 24th and of course I am fightned of the unexpected. I have shared the news with my three adult children but I am putting on a brave face for them. I don't see a need for a second opinion because noone is saying cancer and whatever it is I guess the best thing is to get it out of there. I am open to any thoughts, suggestions, ideas, past experiences, or "poor kid." LOL Thanks, Pat Quote Link to comment Share on other sites More sharing options...
Kasey Posted May 17, 2006 Share Posted May 17, 2006 Welcome Pat, Just need to be clear what is going on............you are having a lobe removed BUT no one has definitively said you have cancer???? That definitely sounds like a second opinion needed. What were the tests you had? Maybe I am missing something. Seems before surgery you would know if you had cancer or not. Make sure you get all the facts and all your questions answered before taking giant steps, Pat. Okay..lecture over. Now I want to WELCOME you officially. How about filling us in a bit more. Your circumstance sounds intriguing. Kasey Quote Link to comment Share on other sites More sharing options...
joanie55 Posted May 17, 2006 Share Posted May 17, 2006 Pat, First of all, welcome. I have to say, I certainly agree with Kasey. Make sure they need to take out your lobe, before they do. This is not a walk in the park. Hopefully, if it is cancer and operable, you are very lucky. But, I would certainly make sure of that first. I do wish you luck. Joan Quote Link to comment Share on other sites More sharing options...
myrnalu Posted May 17, 2006 Share Posted May 17, 2006 I also agree with Kasey.Get a second opinion. Welcome to the site,youll find lots of caring supporting friends here Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 18, 2006 Share Posted May 18, 2006 Welcome, Pat. As the others have said, it is very unusual to have surgery without first having a confirming biopsy. Don Quote Link to comment Share on other sites More sharing options...
RandyW Posted May 18, 2006 Share Posted May 18, 2006 Pat, Welcome too one of th best places to be if you have to be anywhere to deal with this disease. I have made some very der friends who are wise and compassionate and understanding beyond belief. I am a caregiver SURVIVOR as you may notice below. We have an array of survivors of all Lung Cancer and Stages here. You can get almost any question answered any time you need an answer. and ya get lots of prayers here (Ya don't have to ask for those though!!) I would agree and say make sur ethat Dr. knows it is cancer not just pretty sure. Second opinion is cheaper and easier than the surgery. Oh yeah nd if they say you only have so much time don't listen cause they don't know that for sure only god does and every one is different. If we can help Just ask You will be amazed at the suppport here. Saying a prayer and let us know as soon as possible about what is going on. Nice to Meet Ya Pat. Quote Link to comment Share on other sites More sharing options...
CharlieD Posted May 18, 2006 Share Posted May 18, 2006 Hi Pat, Welcome to the site. Sorry you had to find us but glad you did. I have to make it unanimous for a second opinion. You didn't mention your location but you must be in reasonable range of a National Cancer Institute. These people see nothing but cancer patients and believe me, they'll know if it is cancer. I applaud you for wanting to take care of it quickly, but haste can make waste. Just go to the Google Site and type in "NationalCancerInstitutes" and a map will show you where they are located. Click on the closest one and it will give you all kinds of contact info. I did over two years ago and that is why I am under the care of a leading cancer research center at Roswell Park, NY and a two year survivor of this beast and still fighting and doing extremely well. If you are lucky enough to have the disease surgically removed, please make sure it is the right thing to do. As you probably already see, this site is the right place for support and to share and learn from other peoples experience. God Bless you and keep in touch. We care!! CharlieD Quote Link to comment Share on other sites More sharing options...
ztweb Posted May 18, 2006 Share Posted May 18, 2006 Welcome Pat. You have found an amazing source for information and support. God bless! Quote Link to comment Share on other sites More sharing options...
ma's kid Posted May 18, 2006 Share Posted May 18, 2006 Welcome,Pat Please remember that YOU are your own best advocate and I agree with getting a second opinion. Knowledge is power, Pat and being informed will help you with this journey. Don't feel funny about asking lots of questions nor asking the doc(s) to speak in plain, easy to understand language. We care and will be here anytime you need us. Hugs for the part of Pat that needs em' Libby Quote Link to comment Share on other sites More sharing options...
patt Posted May 18, 2006 Author Share Posted May 18, 2006 Wow....thanks to all of you for your replies. ok, here I go. I was having trouble swallowing for sometime and my Dr. sent me for a barium swallow but instead of a problem with that they found a tumor. They then sent me for a cat scan, no clear diagnosis. Then off for a pet scan, phone call two days later that said I had a "live mass" ??? Could be a fungus. After that it was a bronchostomy, excuse bad spelling, then was told the piece they biopsied was not malignant. That Dr. then sent me to a surgeon who said he was 95% sure it was cancer. I probably should mention that 25 years ago I had a bad case of double pneumonia that I was given anti-botics for about 6 weeks, I said I won't take anymore I feel fine, they said ok but we can't seem to clear up that right lung. I have mentioned this to each of the Dr.s. Also, they have ruled out a fungus and are saying that a scar would have a much different shape then the tumor. Thanks again to all of you. Please let me know if you still think I need to check with another doctor because my thought was if there is something there it should come out. Quote Link to comment Share on other sites More sharing options...
Kasey Posted May 18, 2006 Share Posted May 18, 2006 YES!!!!!!!!!!! Get yourself to another doctor as soon as you can! Before doing ANYTHING you need to know for certain just what you are dealing with, Pat. This is serious........you need to know just what is there that should be taken out! Can't emphasize enough to get going! KAsey Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted May 18, 2006 Share Posted May 18, 2006 Let's look at it this way... You took your car in for a problem, one of the mechanics says the engine needs to be replaced and the other mechanic says he isn't sure it's the engine. Whadda ya going to do??? And that's just a hunk of metal.....we're talking your life here. Get Hot and get a second opinion! jim Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted May 18, 2006 Share Posted May 18, 2006 Pat, so glad you found the welcome thread! Big welcome. You NEED to find a surgeon who will give you a good second opinion. Go to a nearby University center or cancer center in your part of the state. Bring with you all of your scans and biopsy reports. Okay.. Poor thing.. we can all relate to your turmoil. This is the most difficult time. We are here for you. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted May 18, 2006 Share Posted May 18, 2006 Pat,welcome to our support family.There are many knowing and caring people here that can help you. Lung surgery is a painful and long time healing surgery.Most of todays drs.are all good at a specialty.They also know a lot about everything else however their opinions often vary considerable. I think it well advised that before anyone removes one of the lobes of your lung they should tell you what type and stage of cancer it is.Also why it needs removed if it isn't cancer. The old adage of dr. knows best isn't always true anymore.Ask lots of questions and do your homework first.It is ok to have your children involved in this as they often think of things that we don't. Quote Link to comment Share on other sites More sharing options...
enyaw061032 Posted May 18, 2006 Share Posted May 18, 2006 Pat: Welcome to this caring family of cancer survivors, loved ones, and caregivers. I agree with everybody else. Since you don't even actually know whether or not you have cancer, you really should get all the tests you need, MRI, PET, etc. to determine if you have cancer. I would definitely not just go get surgery on a maybe. Love and prayers Barb Quote Link to comment Share on other sites More sharing options...
blaze100 Posted May 18, 2006 Share Posted May 18, 2006 Hi Pat, It sounds like the PET lit up? Did they say how much? Did they see any other spots too? They should have done MRI on brain and also bone scan to look for other tumors before they open up your chest. On the other hand, given the smoking history and perhaps a strong indication on the PET, I could see that they might have to operate if there is just no other way to biopsy. I know this is hectic time, but the pain from this surgery can be pure "hellfire" and you don't want to go through that unless they are pretty darn sure it is cancer. I would seek another opinion, or at least have your family doc call surgeon for further clarification as to why they feel it is LC. Hope this helps, Barb. Quote Link to comment Share on other sites More sharing options...
Tom K Posted May 19, 2006 Share Posted May 19, 2006 Hi Pat, You really should get a second opinion to see if there is any way to verify it is cancer before you agree to surgery. I had the upper right lobectomy performed 5 months ago and I still have quite a bit of pain in my back and along my rib cage. I have read that up to 20% of patients will have pain the rest of their lives from this surgery. I had the regular surgery (with a scalpel), but, if you can, try to find a surgeon who is able to perform the VATS procedure (Video Assisted Thorcratic Surgery). I understand it is a lot less invasive, heals much faster and results in much less permanent damage to the nerves in your rib cage. I think some of our members may have had this procedure and they could tell you more. Quote Link to comment Share on other sites More sharing options...
Debi Posted May 19, 2006 Share Posted May 19, 2006 Pat, First let me start off by saying that a second opinion is always a safe way to go so if you feel uncomfortable at all, go for it.. However, I did want to mention that when I had my surgery, no one knew if it was cancer or not, so there are times when it is not known for sure what is going on before the surgery. My surgeon was of the mind that it was a 50/50 percentage on whether it was cancer. It was in a place where a biopsy couldn't be done, and the PET scan lit slightly, but not alot. But the Pulmonary doc and the Surgeon both knew it was growing and there wasn't any reason NOT to take it out. So I only found out after surgery that it was cancer (although I knew in my heart already that it was). Either way, the surgery is 'doable' and although it sucks you have to go through this, there is a light on the other side of the tunnel. Good luck!! Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted May 19, 2006 Share Posted May 19, 2006 Pat, Welcome! I'm curious about the PET scan uptake value. If it is really low, it could be a bacterial infection. Several years ago my dad was in the same situation as you. They said they were sure it was cancer by the look of it. They went in and found out it was microbacterium avium complex--a bacterial infection. My advice is get a second opinion and do what your gut tells you to do. If it is cancer, the sooner it comes out the better. Praying for you. Take care. Quote Link to comment Share on other sites More sharing options...
nonni Posted May 19, 2006 Share Posted May 19, 2006 Hi Pat...my case was very much like yours....found the tumor looking for other causes of my pins and needle sensations... All "they" could come up with was...something there but don't know what it is...I went for CT...inconclusive...went for PET...no cancer found...went for CT again...nothing changed...tomor stood the same.. Now here I go...for a second ...third and a team of 8 doctor's on that one....Although it was NOT showing cancer...just about all told me what ever it was had to come out...it was something foreign on my lung that did not belong there...The doctors did know for SURE...it was NOT scar tissue...it was something that had to go.. So off I went for a upper right lung lobectomy staged at 1A...I was blessed ..believe me....The outcome WAS cancer....I am not saying NOT to have a second opinion ...I think it is very wise that you do HAVE one... I am very happy that I had my surgery...not a piece of cake but like these wonderful people here say..it is doable...who knows what would have happened if I didn't... All this said...I wish you the best and if they do go for the surgery..and find out it is NOT cancer..then maybe just remove the..."whatever it is"....It is to my understanding anything other than scar tissue has to go...but who am I .... If you would like to talk furthur. feel free to email me at pistoltart@webtv.com.. Waving hi to everyone...hope you all are doing great..have a wonderful day...love you guys...PamS Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted May 19, 2006 Share Posted May 19, 2006 Hello Pat and welcome.. I just wanted to add my encouragement for the 2nd opinion. It sounds like that is most definitely in order. Sending you prayers and best wishes, Chris Quote Link to comment Share on other sites More sharing options...
Patty Posted May 19, 2006 Share Posted May 19, 2006 Welcome, Pat, my namesake! Sorry you have to go through all this. I think a second opinion is always a good thing. Just to let you know that, just like Debi, my tumor was not "confirmed" cancer until they removed it. The bronchoscopy did not confirm it, but the tumor was thought to be 8cm, lit up on the PET Scan, and by the looks on the CT, all of my doctors were quite sure it was cancer. I, of course, held out until the very end hoping it wasn't. You go get all of your questions answered. Write them down on a list, if you have to, and don't be afraid to ask away. You need to feel comfortable with what is going on. Hope that I helped. Patty Quote Link to comment Share on other sites More sharing options...
Kaffie Posted May 20, 2006 Share Posted May 20, 2006 Welcome Pat, My cancer was not confirmed until I had the surgery. The doctor said he wanted it out whether it was cancer because of my smoking history. Good luck and keep us posted Kathy Quote Link to comment Share on other sites More sharing options...
chloesmom Posted May 20, 2006 Share Posted May 20, 2006 Hi Pat, I just wanted to let you know that a second opinion is certainly a reasonable way to go, but in my case, we didn't know it was cancer either until they took it out. When I asked the doctor about a biopsy, he said he didn't want to do it because of the long list of possible complications (bleeding, collapsed lung, not getting the correct tissue and a false negative, etc), and since it had to come out anyway, we needed to do surgery. He said it looked like a tumor on the chest x-ray, CT scan, and the PET, and although you don't know it's cancer until you get the tissue itself, he was 80% sure it was, and the thing had to come out anyway. I'm glad I went with his decision. Good luck, Cindy Quote Link to comment Share on other sites More sharing options...
Don M Posted May 20, 2006 Share Posted May 20, 2006 Hi Pat: I have had 2 lung surgeries. In my experience, a wedge resection was done first just to remove the tumor. They tested it for malignancy while I was on the table. When it was found malignant, and my lymph nodes were found to be clear, they took out my upper left lobe the first time and the rest of my left lung the second time. So, I had a biopsy just before each resection. I would want to know if the mass was malignant before they took my whole lobe. It might be that it is benign and you would lose just part of the lobe. I would want it out whether it is benign or not. Ask you surgeon if he is going to do a wedge resection to see if it is malignant or seek a second opinion and ask him. It could be that the tumor is so deep in the lung or so big, that a wedge resecion would be impractical and end up destroying the lobe anyway. Don M Don M Quote Link to comment Share on other sites More sharing options...
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