I had to have a complete pet scan because a scat scan showed nodules on my lungs. One is 11 mm and growing fast and the other one is 8 cm mass. I had my pet scan done on Monday and found out today that I have to have a lung biopsy.
My younger brother a couple of years ago had a pet scan. They got his mixed up and told him that he had lung cancer and didn't do a biopsy and took out 1/3 of his lung. Come to find out he never did have cancer. Now I am afraid after seeing what he went through and the pain and the scaring. I am afraid to go through this. With RA it will take me longer to heal. I couldn't even touch my arm after having melanoma removed. I don't want to play no more.
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Danna
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Hi Danna, I advised you to come to this site and now no one replies! Most are from UK and are sleeping. The other site is for copd. They are very knowledgeable about that. Not so much cancer. You can do a search and see other posts about pet scans also. Ruby🌹
A second opinion should be able to compare the PET to the CT scan and correlate and confirm they match since you are concerned there might be another mixup. Ask for one.
This machine has both scans together I was on that table for over 2 hours. But no cutting on me unless I get a biopsy that states 100 % cancer. I still need to go in for a body check for my skin cancer. That is a trip every 3 months. I am sick of appointments. They also did a cat scan that is how I ended up with the pet scan. My brother told me to get 3 different opinions,...Danna
Hi Danna, Definitely get a second opinion. Be specific with the onc and your regular doctor on how the RA is going to react to surgery. I know it is rough. Everyone is different. Based on the view of your scan, don't think of your bros. experience. These sizes if malignant warrant a second look. Arm yourself with info and weigh which path to take. I know some days I have are bad, but for me it is better than being dead. Don't get me wrong on my bad days, I'm like, "gee, thanks for saving my life, this is so much better" Really though, you want to live in pain or die in vain? Good luck with your biopsy!
Hm69... I like the way you say that. When you have that type of pain, it is like you died in vain, in other words that pain is so bad it is like living in hell. If you have RA then you know what I am talking about. I would love to have days with no pain. My last RA injection I had no pain, but was very sick for 4 months and now this. God has his plans for me. No one dies in vain unless they take their own life. But then again we are not waling in their shoes. Thank you I really do know what you are trying to say. Keep me in prayer for the biopsy. and have a wonderful day....Danna
To live in pain or die in vain. For me I get to do both, I have stage IV melanoma lung cancer that is incurable. I am having a MRI on my brain March 22 to make sure the melanoma hasn't spread to my brain. If it has I die anyway. to live in pain and take these medications so no other T-Cells grows but put toxins in my body and can no longer take the medication and you start getting worse. I am sounding morbid or mean, I am just sitting here wondering what I am suppose to be doing. I am lost...
Danna, I know how easy it is to jump ahead of the process when first diagnosed. The biopsy will tell you much and with genetic testing, a targeted treatment, immunotherapy or chemo might work better than surgery. My stage 4 NSCLC was diagnosed in July 19 , 2016 after XRay found a nodule. PET and needle biopsy were done, then core biopsy taken and sent to Foundation One to pinpoint tumor driver and mutations. I also got a second opinion from one of the leading oncologists at University of Colorado Health. Finally in November, I started chemo. 4 rounds of Carbo/Alimta and another PET scan last week and all metastasis to pleura as well as effusion have completely resolved. Lymph node involvement has also resolved. My primary tumor has shrunk with SUV uptake cut in half. Now I have started Alimta only maintenance every 3 weeks. PET scan will be repeated at the end of March
As difficult as it is, take it one step at a time. I spent hours doing research on medical and complementary treatments as well as garnering information on my specific markers, genetic drivers, etc., and feel very confident that I and my oncologist are making the right choices. Your RA will play into your choices but I have heard of others dealing with multiple health issues, including RA and melanoma, and doing a great job kicking cancer. All will be revealed but sometimes takes some time to put all the pieces into place. Stay strong!
Is that what a INTERVENTIONAL RADIOLOGY is???? I don't want to just go with surgeries, I would like other options. I don't mind waiting, I just want to know what the test results are so I can make informed decisions. I would rather be sick to my stomach rather than hurting from the surgeries. My arm is still tender to the touch from the melanoma surgery. Those lymph node sentinels they can forget that. I got radiation burns from that. Thank you. Danna
I was seen by Interventional Radiology for a core tumor biopsy and also for my power port. It sounds like they will be doing your biopsy. They are the specialists when it comes to image guided diagnosis.
Thank you for sharing your 'eyes to thighs' SPECT/CT with us. It's cool to look at and makes it pretty obvious why a PET scan of brain, heart and some organs is useless and why they need so many tests using different dyes to verify. They are so bright! (Wish I had a larger screen to look at the rest )
You are smart to hold off on any treatment until you have a proven malignancy. Where are your 2 & 3d opinions being done? Hopefully at at least one of these NCCN designated enters of Excellence.
At times like this I never know what to hope for but a new primary would scare me less than a metastasis. You said one is 11mm and growing fast. What was the measurement on that incidental finding and how long between the CT and the SPECT/CT? At 11 mm it is just large enough to safely biopsy without a false negative. (10mm is minimum standard). Have they discussed a needle biopsy vs an Endobronchial Ultra Sound (WBUS)? If there are only the two nodules you MIGHT be considered stage 1 and therefore curable At stage 4 NED is the best we can hope for
PegD went to U Colo, excellent choice and if you go there try to see it up with Dr Ross Camidge. Please keep us updated.
Dear Denize, I just found out yesterday about needing a biopsy. I had a cat scan 8 months ago and the 11 mm nodule was not there. I had another one done in Jan. My doctor had seen that my WBC and my RBC's were very high. She got together with a hematologist and the next thing I knew I had a mammogram, doppler ultra sound, then a pet scan due to the ultra sound on my lungs. I had lots of blood test. I looked at my medical reports to see who she was sending to me an INTERVENTIONAL RADIOLOGY this is a Radiologist that looks at the vascular system. She didn't tell me that the pet scan showed vascular, she just told me about my lungs. It also looks like my spleen and liver are lite up as well. I just wish I would be told everything at once and not piece by piece. I cant wait to get this bone marrow done next week. I will keep you up dated. Thank you...Danna
Dr. Camidge is the best! My Onc at Kaiser was his fellow for 2 years and they continue to have a great relationship so I am in the best situation possible. If my treatment needs change I will go back for follow up 2nd opinion with Dr. Camidge.
You are kind. Thank you. I've had the advantage of attending national educational lung cancer conferences for 6 years. I've had some excellent teachers.
This is how everything went...lol My biopsy from hell. OK this is how my day has gone so far. Larry, took me to the hospital to have my bone marrow done. We go to check in and the first thing she does is spray a bottle of Lysol spray in her office. I start coughing real bad. Then this other woman desides she is going to spray a bottle of Lysol in the waiting room. I couldn't stop them fast enough. I had to get out of there I couldn't breath and was chocking. Larry and I got on the Elevator and my legs started shaking. We got off the elevator I was very unsteady, I don't know how many steps we took, but the next thing I knew is I was on the floor. They wanted me to go to emergency but I didn't want to have to re scheduled my biopsy. So wheel chair bond was I. 6:30 they took me back. This nurse put in an IV and I have never had someone push it in so far, It was the first time Larry has ever heard me scream. During the biopsy the doctor tried to numb me and then started cutting into me. I told her I wasn't numb yet. So She numbed me again. When the doctor was pulling out the bone marrow it took four people to hold me down . It was very painful to me. The medication didn't take effect until the biopsy was done.. Thank God this day is over for me. I am not looking forward to the lung biopsy next Monday after today.
Bless you Danna, I am praying for you to find some relief. I have had a lung biopsy, it was not painful. So, good luck to you. I hope it all gets better for you
If you have any doubts about your diagnosis, do not hesitate to get a second opinion. If it is found that the scans are correct, find a good cancer treatment center and let them handle your care.
May God bless you and give you His Wisdom in finding the right doctors.
Hi and thank you for sharing all of this. The folks here, as always, have it covered - so keep asking questions, and sharing! Just so happy to have you join us. Thanks and please keep us posted.
OK this is how my day has gone so far. Larry, took me to the hospital to have my bone marrow done. We go to check in and the first thing she does is spray a bottle of Lysol spray in her office. I start coughing real bad. Then this other woman desides she is going to spray a bottle of Lysol in the waiting room. I couldn't stop them fast enough. I had to get out of there I couldn't breath and was chocking. Larry and I got on the Elevator and my legs started shaking. We got off the elevator I was very unsteady, I don't know how many steps we took, but the next thing I knew is I was on the floor. They wanted me to go to emergency but I didn't want to have to re scheduled my biopsy. So wheel chair bond was I. 6:30 they took me back. This nurse put in an IV and I have never had someone push it in so far, It was the first time Larry has ever heard me scream. During the biopsy the doctor tried to numb me and then started cutting into me. I told her I wasn't numb yet. So She numbed me again. When the doctor was pulling out the bone marrow it took four people to hold me down . It was very painful to me. The medication didn't take effect until the biopsy was done.. Thank God this day is over for me. I am not looking forward to the lung biopsy next Monday after today.
That sounds terrible! I am so sorry. Have you considered getting a second opinion? If you follow this link, you can search for a National Cancer Institute (NCI) designated cancer center cancer.gov/research/nci-rol...
I would also suggest sharing your experience with a patient advocate at the facility where you were treated.
If you need help with travel expenses, lodging, I could send you information on that as well.
Rest, heal your body and spirit, you have been through a lot.
WHi Danna, I know you must be so nervous right now. I have lung carcinoid cancer. 1/3 of my right lung was removed. Did chemo and right now I'm getting a shoot of Sandostatin each month, no side effects . There are different options you have to treat your cancer. Ask a lot of questions to your oncologist , he will do whatever is best for you.
So sorry to hear about your brother! The main thing , I would think, is there is no cancer. But the fact that he had to go through needless surgery is awful!
Dear gibdonnalee at first I was looking at all the appointments, Now I am getting scared. Even though it is in God's hands I am worried about side effects and what can happen. It was yesterday that I was talking to my husband and all he was worried was about the money that it was going to cost and then I got upset because with the lung biopsy coming up and worrying if my lung collapses. Now I am thing about canceling the appointments even though I can't. I pray that your blood work brings you all the good news in the world. Thank you Danna
Danna, the earlier the diagnosis the better. You're going to find that you are stronger than you know. I was petrified of my lung collapsing because I was present when it happened during my mom's biopsy. But, in the end I had two biopsies without a problem, and later I had my pleural effusions drained several times. It's rare that it happens.
Hi Danna, please don't think the worst case scenario is going to happen. I'm sure you will get through your biopsy just fine! And if it comes back positive, you are stronger than you think girl! I was told all kinds of horror stories and I was fine with the chemo.
As for the finances, ask your oncologist about any person in the area that can help you with whatever costs that you incurr. I had a bill for my shot every month of $16,000! Doctor sent me to someone that helps in these situations and the cost is covered! What a relief!
I hope this info helps you a little bit, remember there are wonderful people on here who can give you a lot of useful information.
Stay strong and know we are all here for you, just text or email away.
Take care, sending hugs and prayers for you for strength to help you get through this. You are not alone.
Good Morning Donna, I know I am a strong person. I know I can handle what ever I have. I have good insurance. I only have 1400.00 out of pocket and then I will be covered 100%. So if I have to battle cancer this year I will. My Aunt battled breast cancer 4 times last year. I am just hoping that I don't have to be cut into...lol it is not the scars I am worried about. It is the pain from muscles being cut into. It is the healing process. I guess what I am saying is I am afraid the RA is going to attack what has been done. Not only that I am a very hard stick. That stresses me out more then anything...I have a high thresh hole to pain. A couple of weeks ago I spilled boiling water all over my right hand and I just put cold water on it. Not to say it didn't hurt, but praise God it didn't blister. I take tylenol for pain. Thank you for keeping me in your prayers it means the word to me. Hugs, Danna
Danna, I'm glad you have good insurance , we have Humana. Up to the point of getting cancer, they were good. It's just the 20% that is killing us now with all the tests every month. I'm hoping I am possibly in remission, but can't count on it, it might have gone up again.it was 1 point from standard number the jumped up the next month to 45. 15 is standard.
Where you from? I am in PA. Hubby ,are scrabbled eggs, so I'll close forgot, lol. Have a good day.
If you would like our information on help with finances, co-pays, help with the cost of medications, etc., please email me - I'll send you our Resource Guides concerning those issues. pbezruki@freetobreathe.org.
Thank you Peggy, that would be great! I'll let you know how my test for chrogranin comes out, find out Tuesday, if not sooner on computer. I'm a little nervous, it's been so up and down lately. But I'm hopeful!
Donna, I am in Georgia. My Falcon's lost yesterday and two weeks before the Daytona race. I live a mile from Atlanta speedway. I got a call from the doctors office asking if I can come an 1 hour earlier I told them yes. Now if this day would fly by. I just want it all to get all of this over with. If I am up to it I will check in tomorrow. It sucks that this test will take a couple of weeks. I hate waiting...lol Have a great day...Danna
no don't cancel. be strong. My lung has collapsed a few times. It is painful when they try to fix it. Mine comes and goes, as it can get better on its own. At least that's what I've been told. Good Luck!
OK this is how my day has gone so far. Larry, took me to the hospital to have my bone marrow done. We go to check in and the first thing she does is spray a bottle of Lysol spray in her office. I start coughing real bad. Then this other woman desides she is going to spray a bottle of Lysol in the waiting room. I couldn't stop them fast enough. I had to get out of there I couldn't breath and was chocking. Larry and I got on the Elevator and my legs started shaking. We got off the elevator I was very unsteady, I don't know how many steps we took, but the next thing I knew is I was on the floor. They wanted me to go to emergency but I didn't want to have to re scheduled my biopsy. So wheel chair bond was I. 6:30 they took me back. This nurse put in an IV and I have never had someone push it in so far, It was the first time Larry has ever heard me scream. During the biopsy the doctor tried to numb me and then started cutting into me. I told her I wasn't numb yet. So She numbed me again. When the doctor was pulling out the bone marrow it took four people to hold me down . It was very painful to me. The medication didn't take effect until the biopsy was done.. Thank God this day is over for me. I am not looking forward to the lung biopsy next Monday after today.
Thank you all for taking such loving care of one another...there is just nothing else, no one else...that can do that. Thank you, thank you, thank you.
They have come a long way with surgical options for lung cancer. You can't sit and wait because not knowing what type of lung cancer - or not - can waste valuable time. I had my entire right lung removed at the age of 52 so I hear you - I wear my SMALL scar as a banner of courage. I had a biopsy done thru my throat - little tiny scar - not even visible. Just do it - I was treated at NYU Cancer Center in NY - I highly recommend them. Make sure you are well informed - take notes if you have to. But don't waste time. With small cell lung cancer time is not on your side. Good luck. Oh and FYI I am cancer free almost 10 years now. So there is hope - I was stage 2B NSCLC
Wow, I don't the different cancer's. I do know about your banner of courage. I had Melanoma on my right shoulder/arm and I called my scar the badge of courage. I was proud of that scar because all the cancer was gotten. It took me a very long time to heal due to my RA. That area is still tender. It hurt to touch my own skin. I am so glad you have been cancer free. The good Lord has made it for you to show other people what you have gone through and your come back. ...Danna
Dana. Since you had melanoma before don't you think that the nodule in the lung would be the same thing? I only say that because my husband had melanoma surgically removed 4 years ago . Today had pet scan and not has a 2nd nodule in his lung. It is all melanoma for him.
what size is the nodule. My lungs are full of nodules but only one lite up. Where did you have your Pet Scan done at? How fast did you find out after the pet scan. and after the lung biopsy
I'm so glad that our paths have crossed here once again. You were a wonderful role model for me and I'm grateful for having known you and fhoneymom and so many others at the beginning of my experience.
You helped me so much as well. Back in those days we had quite a big family on LCA - you all were my lifeline to sanity. I still talk to G and Jazzbo (John) and Peg and Rosie. It's hard to believe it's been 10 years - stay strong my friend ❤❤❤❤❤
dear danna dont be afarid i had a pet scan then biopsy i had lung cancer was operated on june 15.2015 ask ur surgeon if hes familar with vats surgery thats what i had piece of cake dont be afarid surgery may save ur life it did mine my surgeon got all the cancer he removed from the right lune 1 whole lobe and a portion of another lobe i also firmly believe in prayer good luck
I am so glad yours went well. I am also a firm believer in prayer. I have gotten my biopsy back. I have stage IV melanoma lung cancer it is not curable. I am doing a MRI next month on my brain to see what I am going to do. ....Danna
Sorry you got such difficult news. Let's hope when you have your MRI the docs have a plan for you. Don't give up, wait to see what they say. I know that is beyond hard to do right now, but these moments count too and I wish for you that you could find joy in each moment and walk into the next meeting with your doctors with a strong heart and peaceful spirit. That is what I wish I could give to you, that is what I pray you can find. Hugs.
Thank You Peggy, I minute i have a plan in my head and the next minute, I am in tears. My husband hasn't even talked to me on any of this. In fact I had to make my appointment for my MRI after the first two weeks of March. So that puts treatment off. My counselor called yesterday for me to make an appointment with him and my husband gave me a dirty look. It is hard to find peace in my heart and be happy even with being diagnosed with cancer with no support at home. ....
I am so sorry that you are not feeling supported at home right now.
I would encourage you to see your counselor, you deserve that support and understanding. Perhaps your husband is dealing with this in the only way he can...we all face difficult situations in different ways, and it is likely he is hurting too. But you need to take care of you right now.
Trust yourself. Listen to the plan when you are given one, and follow your heart. Peace will come from within you, I feel sure, you have been strong and are doing a really great job right now. You should see yourself through my eyes - pretty amazing!
Thank you for talking to all of us, we want to help ease this for you.
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Lung surgery for NSCC..
Recovering from a lobectomy
Sharing the good news of my scan results
multiple new nodules on 1st CT scan after surgery
