First post treatment CT scan
I am one month out (today) from my last of three high dose chemo treatments, and three weeks beyond my last of 35 high dose radiation treatments. My radiation oncologist sent me for my first CAT scan post treatment. I am believing that my unwelcomed traveler has been destroyed by my treatments.....to me, there is no other option. I am nervous, excited, and anxious to get these results.
My question is for anyone to this point or past, that can speak about their post treatment testing.
What test were you sent for after treatment?
How soon after treatment did you have the testing?
How do you deal with the anxiety that waiting for the results of these tests can cause?
Thank you for just being out there! What a relief to know we are not alone!
Jen
Comments
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Scanxiety
Most, if not all, survivors here know what you mean about "anxiety that waiting for the results of these tests". I normally "dealt" with it by trying to distract myself (stupid tv shows/online chat/video games, etc. Some folks have meds that help.
Testing one month after treatment is faster than most folks here get. I think the majority who have CT and PET both do so six months after treatment. Sometimes folks get a reading of increased activity on the PET soon after treatment that they do not get with later tests (cancerous cells that haven't finished "dying" at three months may be undetectable three months later). Many of these folks and their docs go into "watch and wait" mode, monitoring size and activity until it disappears or increases. Some folks just get the good news a little earlier. So for some, there's the fear of false-positives; for some, it's a chance at either earlier "NED" announcements or a chance to quickly work out next steps for patients getting "real" "dirty" scans.
I had to wait a year and a month after chemo rads (three months after neck dissection) for clean scans.
My first tests after treatment were PET and CT at about three months after treatment ended. They reported the sites of two of my three tumors (base of tongue, and formerly huge lymph node) at no PET activity and no masses; the third (a formerly enlarged lymph node) showed marked decreases in activity and size. We did the watch and wait. Next scans about three months after the first, insurance would not approve PET unless CT showed something. CT showed increase in size of the node, and the PET that followed showed increased activity. Yay - time for modified radical neck dissection. Clean scans three months later. Next scans six months later, insurance would only pay for CT, so that's all that was done. I have PET and CT scheduled for next month - hoping insurance comes through on the PET this time, I'll find out next month.
As far as testing stress, I usually stress before the test, then am wiped out and sleep deprived the day of the test, so I don't stress that day. Oh - except for the not being allowed to drink before the PET - arghh! And being so very tired, and knowing that it's very important I not fall asleep while waiting for my injection to do its travelling before the PET.
When do you get your results? Hoping for happy news.0 -
There is no correct answerPam M said:Scanxiety
Most, if not all, survivors here know what you mean about "anxiety that waiting for the results of these tests". I normally "dealt" with it by trying to distract myself (stupid tv shows/online chat/video games, etc. Some folks have meds that help.
Testing one month after treatment is faster than most folks here get. I think the majority who have CT and PET both do so six months after treatment. Sometimes folks get a reading of increased activity on the PET soon after treatment that they do not get with later tests (cancerous cells that haven't finished "dying" at three months may be undetectable three months later). Many of these folks and their docs go into "watch and wait" mode, monitoring size and activity until it disappears or increases. Some folks just get the good news a little earlier. So for some, there's the fear of false-positives; for some, it's a chance at either earlier "NED" announcements or a chance to quickly work out next steps for patients getting "real" "dirty" scans.
I had to wait a year and a month after chemo rads (three months after neck dissection) for clean scans.
My first tests after treatment were PET and CT at about three months after treatment ended. They reported the sites of two of my three tumors (base of tongue, and formerly huge lymph node) at no PET activity and no masses; the third (a formerly enlarged lymph node) showed marked decreases in activity and size. We did the watch and wait. Next scans about three months after the first, insurance would not approve PET unless CT showed something. CT showed increase in size of the node, and the PET that followed showed increased activity. Yay - time for modified radical neck dissection. Clean scans three months later. Next scans six months later, insurance would only pay for CT, so that's all that was done. I have PET and CT scheduled for next month - hoping insurance comes through on the PET this time, I'll find out next month.
As far as testing stress, I usually stress before the test, then am wiped out and sleep deprived the day of the test, so I don't stress that day. Oh - except for the not being allowed to drink before the PET - arghh! And being so very tired, and knowing that it's very important I not fall asleep while waiting for my injection to do its travelling before the PET.
When do you get your results? Hoping for happy news.
But most will fall somewhere within 3,4 or six months for Ct or PET scans. Results will be varied as well, some will be NED and some will have anomalies of certain types, false uptake readings on the PET or suspicious spots on CT are common. In addition I had a swallowing test just post treatment and many have hearing tests done. Of course bloodwork is a must. If you have any area of concern and have the means to pay for the test, then don't hesitate to get a baseline documented to measure future results by, i.e. if you notice your hearing is getting worse then get a baseline hearing test so hearing loss can be measured down the road. You will discover that almost every test is in fact a baseline for future comparison. My CT tests always show spots on my lungs which would really upset me. The fact is that whatever is there hasn't changed for me, thus the importance of knowing your baselines. Medication for anti-anxiety sure does help for the first year or so. Wishing you a clean scan!0 -
scan results will be inPam M said:Scanxiety
Most, if not all, survivors here know what you mean about "anxiety that waiting for the results of these tests". I normally "dealt" with it by trying to distract myself (stupid tv shows/online chat/video games, etc. Some folks have meds that help.
Testing one month after treatment is faster than most folks here get. I think the majority who have CT and PET both do so six months after treatment. Sometimes folks get a reading of increased activity on the PET soon after treatment that they do not get with later tests (cancerous cells that haven't finished "dying" at three months may be undetectable three months later). Many of these folks and their docs go into "watch and wait" mode, monitoring size and activity until it disappears or increases. Some folks just get the good news a little earlier. So for some, there's the fear of false-positives; for some, it's a chance at either earlier "NED" announcements or a chance to quickly work out next steps for patients getting "real" "dirty" scans.
I had to wait a year and a month after chemo rads (three months after neck dissection) for clean scans.
My first tests after treatment were PET and CT at about three months after treatment ended. They reported the sites of two of my three tumors (base of tongue, and formerly huge lymph node) at no PET activity and no masses; the third (a formerly enlarged lymph node) showed marked decreases in activity and size. We did the watch and wait. Next scans about three months after the first, insurance would not approve PET unless CT showed something. CT showed increase in size of the node, and the PET that followed showed increased activity. Yay - time for modified radical neck dissection. Clean scans three months later. Next scans six months later, insurance would only pay for CT, so that's all that was done. I have PET and CT scheduled for next month - hoping insurance comes through on the PET this time, I'll find out next month.
As far as testing stress, I usually stress before the test, then am wiped out and sleep deprived the day of the test, so I don't stress that day. Oh - except for the not being allowed to drink before the PET - arghh! And being so very tired, and knowing that it's very important I not fall asleep while waiting for my injection to do its travelling before the PET.
When do you get your results? Hoping for happy news.
My scan will be sent to my rad onc. tomorrow. He is supposed to call me when he gets them, to set up an appointment to dicsuss the results.0 -
Hey JennferJennfer39 said:scan results will be in
My scan will be sent to my rad onc. tomorrow. He is supposed to call me when he gets them, to set up an appointment to dicsuss the results.
As they said above, there is no gold standard. The closer you get to treatment, the greater the odds of a false-positive scan. Talk about getting a case of scanxiety!
If you had a small tumor, or a tumor that was pretty two dimensional in its configuration (lacking lots of volume), you will much more likely have a negative scan this close to treatment. If you had a bulky tumor to begin with, there is a significant chance the tumor will not have involuted completely, leading to persistance on an early scan.
My ENT Oncologist, for me at least, did CT's at 3 and 9 months, and PET scans at 6 and 12. Not advocating that, it is just what he did in my case.
Best wishes0 -
False positives
Jen,
Anxiety is completely normal for the post treatment scans. I am 6 months post treatment and still have not had a "clean scan". I have almost grown immune to them now as they are always what my Drs call "false positives". Rest easy, continue to get back to your new normal and put some weight back on. Life gets better.
I thank God everyday for the second chance that he has given me and I can't help but think that for all of us.
Good luck and God bless,
Mike0 -
Well..., LOL....(Dirty Harry Movie dialog)....
My scan schedule for the first year was pretty much the same as Pat above...only Pet was at 3 months, CT at 6 and 9, then PET again at one year.
How lucky do you feel.....
At my facility, I can request a "Desk Copy" of my scans and there are ready along with CD's the next day. This is the same time they are available to the MD, but usually I don't get to see him for a week.
Sooo, they are fairly easy to read, though your MD will tell you not to as mention of non-event things on the reports, might look like a big deal to you...adding even more to your scanxiety......
JG0 -
Welcome
Welcome, the waiting game is not fun that is for sure.
i had my first scan at 8 weeks post treatment. i dealt with the anxiety poorly for sure, i was not a patient person at that time. i vented and thought about it so so much. the best thought i could come up with was worrying was not going to change the outcome of the tests... and i bet i said that to myself 40-50 times a day. don't know if that is normal but it's what i did.
i recently say this post.... worrying is pointless. it's like carrying an umbrella waiting for it to rain
when i was told the spots on the scan could be cancer or scar tissue the only way we will know is to do surgery.... your choice! well for me it was easy i had to know as i could not wait to find out in the future. i had the surgery, it was scar tissue... i could not stand the thought of wondering for a long time.
not probably what you wanted to hear, but it is what happened.
prayers for wisdom as you deal with the waiting game results.
john0 -
Dr. calledfisrpotpe said:Welcome
Welcome, the waiting game is not fun that is for sure.
i had my first scan at 8 weeks post treatment. i dealt with the anxiety poorly for sure, i was not a patient person at that time. i vented and thought about it so so much. the best thought i could come up with was worrying was not going to change the outcome of the tests... and i bet i said that to myself 40-50 times a day. don't know if that is normal but it's what i did.
i recently say this post.... worrying is pointless. it's like carrying an umbrella waiting for it to rain
when i was told the spots on the scan could be cancer or scar tissue the only way we will know is to do surgery.... your choice! well for me it was easy i had to know as i could not wait to find out in the future. i had the surgery, it was scar tissue... i could not stand the thought of wondering for a long time.
not probably what you wanted to hear, but it is what happened.
prayers for wisdom as you deal with the waiting game results.
john
My oncologist called this afternoon.
First result received........
He said he is very pleased with what he sees. My nodes, which were the issue since my primary cancer was removed with my left tonsil, have shrunk down to less than half the size they were pre treatment. None of my docs......ent, rad, and chemo docs could feel them anymore, and they were BIG prior to treatment. He warned, that a cancer free diagnosis was not realistic yet, with the extent of my node involvement, and with the understanding that it was very early to do this scan, and the treatment is still working in my system.
He wanted a baseline scan since I am returning to work on Monday, and he added in his words, he would do nothing different at this time. Nothing has changed the course we are on. I was clear to him that cancer free might be unrealistic to him, but it was my ONLY acceptable outcome! He agreed.
There is no way to know right now, if my nodes have cancer in them, unless he pokes around and does a biopsy, which it is too early for. Almost wish I wouldnt have had the scan yet..........but I guess I will feel that way about ANY scan that doesnt spell out NO CANCER.
Jen0 -
Baseline Scan....Jennfer39 said:Dr. called
My oncologist called this afternoon.
First result received........
He said he is very pleased with what he sees. My nodes, which were the issue since my primary cancer was removed with my left tonsil, have shrunk down to less than half the size they were pre treatment. None of my docs......ent, rad, and chemo docs could feel them anymore, and they were BIG prior to treatment. He warned, that a cancer free diagnosis was not realistic yet, with the extent of my node involvement, and with the understanding that it was very early to do this scan, and the treatment is still working in my system.
He wanted a baseline scan since I am returning to work on Monday, and he added in his words, he would do nothing different at this time. Nothing has changed the course we are on. I was clear to him that cancer free might be unrealistic to him, but it was my ONLY acceptable outcome! He agreed.
There is no way to know right now, if my nodes have cancer in them, unless he pokes around and does a biopsy, which it is too early for. Almost wish I wouldnt have had the scan yet..........but I guess I will feel that way about ANY scan that doesnt spell out NO CANCER.
Jen
Most first PET scans, especially early (less than 4- 6 moths), tend to be labeled as baseline scans.
It gives them a post treatment reference point...realizing that there is great odds of residual damage, Also as you noted, some cooking can still be going on, and if nothing else, the residual effects can last a very long time.
Another reason the scan can't say this early if it's cancer or residual....they both glow. More than likely odds are in your favor, just coming out of Tx that it's residual.
That dosen't mean you can not get a NED result, and still have residual going on... I'm nearly 3 years post Tx and still have residual changes from one scan to the next.
As for the cancer free diagnosis, more than likely those exact words may never be said, depending on your MD.
Usually it's more in the way of NED (No Evidence of Disease)...mainly interpreted as they can't or don't see anything cancer related at the time.
But, that's always much better than having a result coming back positive...
Best,
John0
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