I had a left upper lobectomy on 7/29. My oncologist told me before surgery that with a tumor at 1.6 cm I would not need chemo but he left the decision up to me. He told me the side effects of two types I would get and also told me that there was no guarantee that chemo would do anything to prevent it coming back. he told me it would cause mor eproblems than I had with other organs and 'open up another can of worms". He recommended a CT of the thorax in 6 months and I asked for a PET scan. My late husband had metastatic kidney cancer found with the tumor was 10cm. he passed 6 months to the day that we found out. It had already gone to the lungs and bone. I am very aware that cancer will come back and not always in the area it was first found. They can do CT scans of the lungs until the cows come home and it will be found in my liver or someplace else. So, I will always, always get a PET scan. If he wants to do a CT six months after the PET well I will agree to that but at least once a year I will get a PET scan and if Obama gets this hidious healthcare plan passed I will fight with everyone and anyone until I get my PET scan. So, please ask your doctor if you can get a PET at least once a year. Everyone I have known has gotten CA again but in a different location. One woman I know had breast CA 25 years ago and it came back last year in the same breast, different type. So, I will not sit and worry if it will come back because I know it will but I also know that if I have a PET it will get caught again, in time.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
PET scans
- By nheepdanes
- Posted October 27, 2009 at 7:48 pm · 20 replies
- In Non-small cell lung cancer - Stage I
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Back pain Ativan Kidney cancer Pain Lung cancer Pneumothorax
20 replies
- Oldest first
- Newest first
- By Marylou1
- Posted October 27, 2009 at 8:15 pm
- Report post
Do you know about the combination PET/CT scan? It's the best of both worlds, and I highly recommend it.
The CT scan uses the dye for contrast, but the combination scan uses the same radioactive glucose that you get with a PET scan.
If I ever have to fight for one, it will be the combo.
Good Luck and God Bless,
Marylou
- By dm6maj7
- Posted October 27, 2009 at 8:16 pm
- Report post
I am truly sorry about your disease and the horrible time you must have gone through with your husband's disease as well. I wish you the best with your current course of medical treatment. However, I respectfully request that you might consider leaving out the political editorializing. Thank you.
- By marcellaj
- Posted October 27, 2009 at 8:41 pm
- Report post
I had ULL for 1.5 cm nodule Stage 1A in March 09. I have an additional 5mm nodule in my RUL. My oncologist ordered a PET in Oct. 09, and Aetna denied it. So, as far as the "death panels" people fear from health care reform, they already exist in the form of our present health insurance co's.
- By dachshundlover
- Posted October 27, 2009 at 9:50 pm
- Report post
Marcellaj, I am in no way an expert but I think your ins company may have declined the PET because your nodule is too small to biopsy yet...did they ok a CT scan or another in a couple of months? I have heard unless the nodule is 8mm or larger they cannot do a biopsy and that insurance companys wait for that for any additional testing...
- By HighlandGuy
- Posted October 28, 2009 at 12:36 am
- Report post
Let's take the mystique out of PET scans. CT scans reveal tumors. A characteristic of cancers is growth which can be determined by (1) a subsequent CT scan or (2) by a considerably more expensive PET scan.
Only a biopsy can confirm if a growth or a tumor is benign or malignant!
While there can be occasions when PET scans may be adviseable, we need to also note that Doctors and hospitals may prescribe them simply to increase their income and sometimes to pay for the PET equipment.
HighlandGuy
- By kitkat4ever
- Posted October 28, 2009 at 12:56 pm
- Report post
I always thought PET/CTs were the best. BUT, really, I learned, CT with contrast is a whole other view. I would alternate between the two.
My 2 cents.
kat
- By nheepdanes
- Posted October 28, 2009 at 1:08 pm
- Report post
Thank you, yes it has been trying.
Unless something horrible has happened since my post, I believe in freedom of speech and expressing facts. If you do not like the post, please do not read it. Up to this point, we are still a free nation and entitled to our own opinions. I have not judged you for yours, just kindly pointing that out.
- By nheepdanes
- Posted October 28, 2009 at 1:12 pm
- Report post
I don't share much hope with needle biopsies. My tumor was 1.3 cm when it was biopsied, after the PET scan lit it up, and it was inconclusive. A CT six months later showed it had grown .3 cm to 1.6 cm so even if it were benign it had to go because it eventually would have grown and taken up the whole lobe. I have not heard about PET/CT scans. I go in and they check my blood sugar and then I drink this stuff and wait 1/2 hr and then have the PET scan. That is all I know. Sure wish they would find a way to soften up those scans. Those of us with back pain have such a hard time getting up.
- By nheepdanes
- Posted October 28, 2009 at 1:14 pm
- Report post
I was the one that chose to have a PET scan. CT scans focus on one section of the body. Yes, I guess you can get a full body CT scan but that would cost just as much as a PET. I choose to get a PET so that I had the reassurance that while they are focusing on my lungs for return CA, I also know that it has not shown up someplace else. My doctor was the one who mentioned CT scans.
I hurried my surgery up so that I would not end up having to wait months to be put on a surgery schedule. Then I might have had a worse outcome, metastasis.
- By HighlandGuy
- Posted October 28, 2009 at 3:43 pm
- Report post
Needle biopsies depend upon the skill of those performing them to penetrate the tumor and get smples of tissue from it. It also depends on the pathologist to properly read the tissue slides.
Procuring a biopsy is simply a less invasive (than surgery) method of acquiring tissue samples from tumors to determine what they are. Sometimes it cannot be performed.
All surgeries involve risk of complications and to our lives. My cardiac surgeon accidentally slashed a gash in my lung. The surgery that was suppose to reduce breathing problems, increased them! Two years later it nearly cost me my life when I had to have a lobectomy.
There is nothing wrong in having combination CT/PET scans. Under differnet circumstances, it is appropriate to have a CT, in others a PET, in many cases both! Both often result in false or misleading results! They are tools to assist diagnosis, not diagnostic tools in themselves.
HighlandGuy
- By debra1
- Posted October 28, 2009 at 5:57 pm
- Report post
I have SCLC and dxd 11/06. I had a pet scan 09/07. My Dr. wanted one recently. It has been two years and he says PET will show cancer in some lymph nodes that the CT scan will not pick up. My Ins. Co.-AETNA- will not approve/pay for PET. They allow one at diagnosis and that is it. I am so mad, I wanted to go to War with them.....I am going to wait until next visit and then fight. I just hate Ins. cos.
- By nheepdanes
- Posted October 28, 2009 at 6:26 pm
- Report post
I would be stomping mad also. If I may make a suggestion, call your congressman and see if he will get involved. I would also write a letter to Aetna and send it registered, return receipt. I am not sure if the American Cancer Society would help. I can only speak for my area office but I don't see where they do much for any other cancer than breast. Good luck.
- By nheepdanes
- Posted October 28, 2009 at 6:30 pm
- Report post
Are you a doctor of some sort? I had the best radiologist in this area do my biopsy and every doctor that saw the path report concurred that it is very difficult, even under fluroscopy to see exactly where the tip of the needle is going to go. He obviously got the tumor site for the path report to identify abnormal tissue, but my tumor was quite small. I do not fault anyone for that diagnosis and it is my humble opinion that needle biopsies will not always be accurate. As far as the PET versus CT discussion goes, I also give my humble opinion that I would prefer a PET scan over CT any day. I do not want anyone just to focus on my lungs because I have done research which shows that cancer can and will show up someplace else and not just the lung. Thank God we can still have differences of opinion while being on the same side!!!
- By HighlandGuy
- Posted October 29, 2009 at 1:03 am
- Report post
nheepdanes
No question, needle biopsy requires special skills. It simply isn't feasible when the tumor is tiny. There can also be complications. I had three needle biopsies, one resulting in collapse of the lung (Pneumothorax) that required ten days hospitalization to heal completely. There are also places and conditions where it is simply not possible to do the procedure.
debrar 1
If your looking for tumors, CT is method. If you are looking for active growing tissues, the PET is needed procedure. It depends upon what the doctor is seeking to learn. From my experience full body CT scans cost considerably less that PET scans, but that may differ, depending on who is charging it. The insurance company is tring to prevent unnecessary procedures, but they are going too far, when they preclude doctors from getting requiring patient information for subsequent diagnosistic requirements in cancer cases.
AETNA insurance is being irresponsible and unrealistic in limiting these procedures in cancer cases.
Jogj;amdGuy
- By nheepdanes
- Posted October 29, 2009 at 7:28 am
- Report post
I did get a collapsed lung several hours after the biopsy and after I had eaten. So, I had to have chest tube placement without anesthesia. They did give me 150 mgs. of Fentenyl, big deal. Extremely painful and after the surgery I developed pleural effusion. I was lucky from what I hear. It was not a lot so nothing had to be done, no aspirations. It eventually went away.
Like I have said earlier, Thank God we all still have the opportunity to speak our piece to any doctor. At least I do. It was very refreshing to have doctors who listened to what i wanted and when they felt it was not harmful or excessie, they allowed me to do that. Was much different when my late hubby got kidney CA. I had to fight and scream just to have them give him an Ativan. That was 10 years ago. Well Have a good day.
- By debra1
- Posted October 29, 2009 at 9:30 am
- Report post
I have talked with Aetna and they said they are contracted with Med Solutions and they make the decisions- My Dr. (Oncologist) had a peer to peer review with them....bottome line, they thought silly, but AETNA makes the rules. I decided to wait and next scan time, we are going to try again and then I am going to raise cane, Dr. write letter and may even go to State Board of Ins. I just get crazy thinking about an ins. co. saying you can have one PET and that it is.
- By radar212
- Posted October 29, 2009 at 9:48 am
- Report post
Highlandguy,
I will have to disagree with you about a CT scan vs a PET scan. I had 2 xrays and 2 CT scans with a diagnosis of pnemonia. Neddle biopsy was done and diagonised with BAC. According to the ct scans it was confined to upper right lobe.Did not show lymph nor left lung involvement. PET scan showed involvement of lymph nodes as well as left lung. Pet scans will show cancer cells. ct scans show tumors. My bills totaled $12,000+ at diagnosis. A Pet scan was only $5,500. I could have had a diagonsis 3 months earlier and the insurance company would have saved over $12,000. I don't know where you are but Ct with contrast is quite expensive also.
- By nheepdanes
- Posted October 29, 2009 at 2:11 pm
- Report post
Like I have said, right now, today, we have the option of choosing, at least I do as my doctor has left it up to me. Now, I am not sure if that is because I have been in medicine for 28 years and his father use to be one of my bosses or not, but I asked if I could have the PETS and he agreed that it would take care of seeing all the organs at one time, expect the brain. So, again, we all have choices and we will all be told something different by our doctors. Funny as it sounds, we all should be told the same thing but other medical conditions and such can change the course of treatment. Good luck to all with whatevery you or your doctor chooses to do .
- By HighlandGuy
- Posted October 29, 2009 at 2:55 pm
- Report post
radar212
As I noted, CT reveals tumors, PET reveals growing tissue, two different results. Lymph nodes are not tumors. Diagnosis of cancer can be made only from tissue samples from tumors or effusion.
X-rays are not up to task of diagnosing many tumors. It misses tumors behind ribs often. It cannot pick up tiny tumors. I had an Xray weeks before the CT scan that reveales a 1,3cm tumor. I was told it indicated nothing abnormal.
Our clinic charges $1,364 total cost for full body CT scan. (I had another one three weeks ago that I will be billed some $50. after medicare and my supplemental makes their payment in the next several months).
Average cost of lung (only) CT scans given to 31,000 smokers in the I-ELCAP study was $300. per scan.
I honestly can't imagine paying $5,500 for a PET scan although I have no doubt that you are telling me the truth.
I don't know what all is included in the $12,000 bill for diagnosis, but I would be outraged.
The clinic I go to employes some 500 staff doctors, excluding residents, interns, students in training and researchers, has a total paryoll in excesds of 6,000 employees and is locate in Western Wisconsin. They have frequently been recognized nationally for the excellence of their care and treatment.
HighlandGuy
- By nheepdanes
- Posted October 29, 2009 at 3:01 pm
- Report post
I think this is a dead issue. Again, we are all entitled to our opinions and where we can go and not go, at least for now we are. Have a great day and remember November is lung cancer awareness month. Get those tee shirts on!!
Add to the discussion