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Too much information???

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

Wondering how much information you all get from your doctors regarding your scans and what type of post scanning is used? I have gone for two CT scans now and find them to be very exact in their findings and more thorough than a PET or MRI. Perhaps too thorough! My initial test was an MRi which found an enlarged lymph node. My next test was a PET which in addition to that found a 9MM calcified lung nodule with no uptake. My first test post treatment was a CT with contrast which found no cancer but the 9mm nodule as well as another micronodule. The limit of PET is around 9mm but CT can really get to the small stuff around 4mm. My latest six month CT found four nodules total which has me totally freaked out. It does read "scattered micro nodules, unchanged since last CT, most likely benign, no definite evidence of metastic disease"

My doctor says he isn't worried about it since they are stable. I asked why they weren't reported on the first scan? He brought both pictures up side by side and pointed out the nodules on both scans. He said they were so small the first radiologist didn't feel they were worth mentioning. He said I simply got a more meticulous radiologist this time around who included them in his report. He went on to say that because I had cancer it dosen't mean they weren't there previously for some other unrelated reason. He then said that if he pulled people off the street randomly many would show nodules on a CT. He said he is 99% sure it isn't anything and not to worry about it. He said this is as good as it gets with post scans and that he has seen much worse. All it would take is for some food to be aspirated into the lungs to cause this and he said I wouln't even know it. He considers this a clean scan.

As you can see he went out of his way to reassure me yet I can't seem to stop worrying about this. It quite frankly terrifies me! Furthermore a PET or MRI would not even be picking this stuff up. My problem is I ask for written reports of the test and compare them. Perhaps I'm better not knowing and is this simply too much information since I'm losing sleep over constant anxiety regarding this.

What are your doctors using for post scans and do you read the reports?

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I was told that I would have another PET Scan after my radiation side effects had healed. At my last appointment my doctor said that they were not going to do one. I kind of wanted that "all clear" announcement. After reading your post, I can tell you that what you experienced would freak me out too.

I am not sure how I feel about not having one, and wondered if I should try and fight to get a scan. I know that if I had to go thru head and neck radiation again, i would not do it, so I am not sure if knowing anything would help the situation anyway.

I know that they said that if my mouth and stuff was not healed from the radiation, it would show a false positve. My mouth is still a problem, so maybe it's better that I am not having it done.

I will be interested to follow further posts about this given my situation.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Ratface

I have been insistent on having all of my written test results. I have to say these reports scare me too. For instance, my pet scan showed 2 areas of involvement on my tongue at the base. I already had surgery to remove my tonsils, right dissection, by the time I read this report.(Pet was day before surgery), so I am now trying to get my surgery report to see exactly what they carved on. The ENT said there was nothing on my tongue so I very much believe these scans can show false positives. Primary was found in surgery, said to be right tonsil. The weather has been bad here and I expect my surgery report by e-mail today.
But I do believe all scans are very valuable tools for us.

Best,
Steve

debbiejeanne's picture
debbiejeanne
Posts: 2506
Joined: Jan 2010

Rat, I recently had my 2nd post PET scan and it showed activity. Like you, I was scared to death! I got the results from a biopsy today (b/c of the scan) and it was negative!! The scan showed a false positive! So, I've started worring about what will happen in the future, will they do a PET, a different test, will they ignore the PET since it showed a false posotive already? I know it isn't good for any of us to worry about the cancer so much but I absolutely understand our fear! I don't have any good answers for you but I'm sure others will when they read this. On the modules in the lung, I believe I would insist on another test to prove it is not cancer. That's just my opinion but I believe when you're discussing cancer, you have to stay on top of it. I will pray for you and please keep us updated on your health and the lungs.
God Bless You,
Debbie

Hondo's picture
Hondo
Posts: 5843
Joined: Apr 2009

There sure seams to be a lot of ways that can be used our days to find if someone has cancer and like you said on guy don’t include something and the other does makes you wonder about consistency in any report..

My MRI’s and PET scans all come back the same showing an area on my right sinus as a hot spot but not growing as of 2006. My local doctor looks at it as normal now just left over scar tissue and nothing to worry about.

I also have copies of all my PET scans on disk and can look at them or compare them if ever I need to

I would like to say one thing I’ve learned about living with cancer and waiting on reports and PET scans. My life is like an hourglass and the sands of time pores out of it everyday. I live what every life I have left to its fullest and enjoy the time I have with my family, friends, and mostly my Children and Wife.

Take care my Friend

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Hondo,
Amen on living life!!! I can't wait to get started. Gotta get thru this first. Just a bump in the road? I pray. But God is so great!

All the best,
Steve

Hondo's picture
Hondo
Posts: 5843
Joined: Apr 2009

You have a winning combination on you side, God, Family, and Friends. You are right about the road it is a little bumpy ahead but the prayers of Faith will be your strength to pass over the bumps and bring you safely to the other side.

Take care my Friend

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