CT testing-how many years?

horsepad

I had my CT scan yesterday and NED!  I met with 2 oncologists.  My medical oncologist said everything great, see you next year.  My radiation oncologist said you really don't need to see me again or get any more scans, unless something comes up.  It has been 4 years since your diagnosis and your cancer isn't going to come back.   He said a yearly visit to my 3rd oncologist (which is closer to home) and having a scope done by another doctor is sufficient.  I was so happy, I felt like I was "cured", not in remission.  Then after a few hours, I wondered if stopping the yearly scans is a good idea.  I was stage 4, it hasn't been 5 years yet.  Although I know how bad to your body scans are, is it too early to stop them?  I tried finding information on guidelines as to what is standard and couldn't find anything.  Anyone have any information on this?

eihtak

horsepad.....

Hi, and congratulations on your recent good report!  There is a lot of contoversy on how long to scan as follow-up.  I was diagnosed 4 1/2 years ago at Stage 3b.  After protocol treatment and over 4 yrs of NED my most recent scan reveled a met of anal cancer to my lung with a mass the size of a small peach!  I had no symptoms that would have led me to suspect this and no scope to my anus would have found it, lol.  It is possible that blood work may have eventually led to further checking but I am sure glad I had that scan and will now continue them.  I was treated with surgery/chemo and doing great as of today!  Sometimes doctors recommendations are directed by insurance coverage, so I always ask what my doctor thinks whether it is covered or not, weigh the risks, say a prayer, and proceed from there.

Best of luck as you move forward in health!

katheryn

 

 

pializ

eihtak said:

horsepad.....

Hi, and congratulations on your recent good report!  There is a lot of contoversy on how long to scan as follow-up.  I was diagnosed 4 1/2 years ago at Stage 3b.  After protocol treatment and over 4 yrs of NED my most recent scan reveled a met of anal cancer to my lung with a mass the size of a small peach!  I had no symptoms that would have led me to suspect this and no scope to my anus would have found it, lol.  It is possible that blood work may have eventually led to further checking but I am sure glad I had that scan and will now continue them.  I was treated with surgery/chemo and doing great as of today!  Sometimes doctors recommendations are directed by insurance coverage, so I always ask what my doctor thinks whether it is covered or not, weigh the risks, say a prayer, and proceed from there.

Best of luck as you move forward in health!

katheryn

 

 

Scans

i think I would want 1 more at the 5 year mark. I'm kind of funny about dotting i's and crossing t's.

Congratulations on NED status. Stage IV too! Incredible! I am so pleased for you

Liz

mxperry220

Scans

I was diagnosed with Stage 2 anal cancer in 2008.  I have had no scans after 2 years post treatment.

Mike

mp327

horsepad

I am so, so happy to hear your great news!  That is just wonderful!  As for yes or no to future scans, I am sure the NCCN guidelines say no follow-up scans, but in the case of someone who is NED after Stage 4 cancer, I think getting a yearly one would not be unreasonable--that's what I would want in your situation.  That's just my two cents worth.

I am sure I will be wearing a big smile on my face for the rest of the day after reading your post and if I could do a back flip in your honor, I would!  Congratulations and may you always be NED!  Hugs!

Martha

horsepad

Thanks for the replies.  We

Thanks for the replies.  We think alike.  I felt one more scan-just a feeling but  since survival rates are based on 5 years, I feel more comfortable with another scan.

Kathryn-I am so happy you are doing great!  Your mets to the lungs has convinced me to definately do another scan.  Lung mets is my major concern  I was a smoker for many, many years.  I had quit for a long time but started up again after my husband committed suicide and have been struggling ever since.  Although not smoking now, its a on again off again thing  My father died of lung cancer (not a smoker) and my sister died of brain cancer, so cancer runs in my family.  I will pray you continue in good health.

My radiation oncologist, who knows my personnal struggles after I had a meltdown in his office, told me "I have never said this to a patient but I know you are going to live".  He, like myself, is a very religous person.   I think he was overcome with emotions at that time. My life story would make a good tear jerker movie.   I know no one but God knows when it is our time.  Having CT scans brings me a feeling of peace, although temporary.

 

donnarush

mxperry220 said:

Scans

I was diagnosed with Stage 2 anal cancer in 2008.  I have had no scans after 2 years post treatment.

Mike

ct followups

I was diagnosed with Stage 1 anal cancer in 2013. As to date, I have only had one pet scan, one ct scan and numerous xrays. No more scheduled at this point. I too am leary of this. But I do think insurance companies dictate policies. UGH!!!

pializ

horsepad said:

Thanks for the replies.  We

Thanks for the replies.  We think alike.  I felt one more scan-just a feeling but  since survival rates are based on 5 years, I feel more comfortable with another scan.

Kathryn-I am so happy you are doing great!  Your mets to the lungs has convinced me to definately do another scan.  Lung mets is my major concern  I was a smoker for many, many years.  I had quit for a long time but started up again after my husband committed suicide and have been struggling ever since.  Although not smoking now, its a on again off again thing  My father died of lung cancer (not a smoker) and my sister died of brain cancer, so cancer runs in my family.  I will pray you continue in good health.

My radiation oncologist, who knows my personnal struggles after I had a meltdown in his office, told me "I have never said this to a patient but I know you are going to live".  He, like myself, is a very religous person.   I think he was overcome with emotions at that time. My life story would make a good tear jerker movie.   I know no one but God knows when it is our time.  Having CT scans brings me a feeling of peace, although temporary.

 

Scans

i live in the UK, so not insurance led. I am 2.5 years post treatment for stage 3a AC. I am currently having MRI scans every 6 months and CT scan annually. Without node involvement, it would just be DRE which I am currently having every 3 months in addition to the scans. It wasn't always as structured as this initially, but this protocol has evolved as time has passed. I had a DRE yesterday (nothing of concern found), MRI in October, another DRE in November & CT next May. Well, that's the plan anyway.

Liz

lizdeli

pializ said:

Scans

i live in the UK, so not insurance led. I am 2.5 years post treatment for stage 3a AC. I am currently having MRI scans every 6 months and CT scan annually. Without node involvement, it would just be DRE which I am currently having every 3 months in addition to the scans. It wasn't always as structured as this initially, but this protocol has evolved as time has passed. I had a DRE yesterday (nothing of concern found), MRI in October, another DRE in November & CT next May. Well, that's the plan anyway.

Liz

Scans

Hi all,

I haven't posted in awhile, but I do check in from time to time.  This recent post about frequency of scans is the first one I read tonight and it is so timely.  I just returned from MD Anderson.  I am 6 years out, stage III with mets to lymph nodes.  I was scanned every 3 months for the first 2 years, then every 6 months to year 5.  Dr. Eng sees me once a year now and this is the first time I haven't been scanned.  I know I should be ecstatic, but for some reason it has  caused such anxiety.  I had blood work done and a physcial exam.  I asked if I would be scanned again and she said not necessary.  I asked how would I know if it came back...and if it was in my liver or lungs.  She said I passed the critical mark for reoccurence and that I am NED.  She said blood work would show if something was astray.  I was told to keep up with gyno appts and regular physicals.  I should be celebrating. I am beyond grateful but yet a lingering feeling of the unknown is there.  With all the radiation I had and then all those scans I certainly understand the benefits of not having to do it anymore.  Yet, I worry.  This too shall pass. I've discovered another stage of the cancer journey, just when I thought I had learned to cope with it and move on.  

That aside, I am so happy for those of you that have reached new NED levels!!!!

Liz

pializ

lizdeli said:

Scans

Hi all,

I haven't posted in awhile, but I do check in from time to time.  This recent post about frequency of scans is the first one I read tonight and it is so timely.  I just returned from MD Anderson.  I am 6 years out, stage III with mets to lymph nodes.  I was scanned every 3 months for the first 2 years, then every 6 months to year 5.  Dr. Eng sees me once a year now and this is the first time I haven't been scanned.  I know I should be ecstatic, but for some reason it has  caused such anxiety.  I had blood work done and a physcial exam.  I asked if I would be scanned again and she said not necessary.  I asked how would I know if it came back...and if it was in my liver or lungs.  She said I passed the critical mark for reoccurence and that I am NED.  She said blood work would show if something was astray.  I was told to keep up with gyno appts and regular physicals.  I should be celebrating. I am beyond grateful but yet a lingering feeling of the unknown is there.  With all the radiation I had and then all those scans I certainly understand the benefits of not having to do it anymore.  Yet, I worry.  This too shall pass. I've discovered another stage of the cancer journey, just when I thought I had learned to cope with it and move on.  

That aside, I am so happy for those of you that have reached new NED levels!!!!

Liz

Liz

Congratulations Liz! Wonderful news! I was stage III also. CT's were never going to be part of my follow up, but after discussion & me being quoting NCCN guidelines (although I live in UK), it was agreed I would have 1 at around the year past diagnosis. They have now agreed to do them annually although now a bit out of sync as The scan planned for this year was brought forward due to a scare. I think, Liz, I will also feel a bit wobbly about them being discontinued. 

I hope you are celebrating your news

Liz

mp327

lizdeli said:

Scans

Hi all,

I haven't posted in awhile, but I do check in from time to time.  This recent post about frequency of scans is the first one I read tonight and it is so timely.  I just returned from MD Anderson.  I am 6 years out, stage III with mets to lymph nodes.  I was scanned every 3 months for the first 2 years, then every 6 months to year 5.  Dr. Eng sees me once a year now and this is the first time I haven't been scanned.  I know I should be ecstatic, but for some reason it has  caused such anxiety.  I had blood work done and a physcial exam.  I asked if I would be scanned again and she said not necessary.  I asked how would I know if it came back...and if it was in my liver or lungs.  She said I passed the critical mark for reoccurence and that I am NED.  She said blood work would show if something was astray.  I was told to keep up with gyno appts and regular physicals.  I should be celebrating. I am beyond grateful but yet a lingering feeling of the unknown is there.  With all the radiation I had and then all those scans I certainly understand the benefits of not having to do it anymore.  Yet, I worry.  This too shall pass. I've discovered another stage of the cancer journey, just when I thought I had learned to cope with it and move on.  

That aside, I am so happy for those of you that have reached new NED levels!!!!

Liz

Liz

Congratulations on being 6 years out!  That is so awesome and I'm glad Dr. Eng gave you all good news.  I get exactly what you are saying about the anxiety caused by no more scans.  As we know, repeated scans can do their own type of damage, but at the same time, they can give us such peace of mind that our status continues to be NED.  When I met Dr. Eng at the conference back in March, she told me I was "cured" when she found out how far out from treatment I was.  That was her word, not mine, as I refuse to use the word "cured."  Call me superstitious or whatever, but I just won't do it. 

My oncologist is a big fan of scans and I am supposed to have another one in February.  He wanted me to get one this month, but I negotiated with him when I last saw him and he let me go until February.  That will be a year since my last one.  I had been having some pain in the area around my liver, so he has been monitoring that, as there is some little funky thing on my liver.  He says it's benign and if it was otherwise, it would be growing.  However, he wants to keep an eye on it.  Fortuntely, those nagging little pain have disappeared.

To scan or not to scan, that is the ongoing question I guess.  Try not to worry and enjoy all of your recent good news!  Hugs to you, my friend!

Martha

Lorikat

lizdeli said:

Scans

Hi all,

I haven't posted in awhile, but I do check in from time to time.  This recent post about frequency of scans is the first one I read tonight and it is so timely.  I just returned from MD Anderson.  I am 6 years out, stage III with mets to lymph nodes.  I was scanned every 3 months for the first 2 years, then every 6 months to year 5.  Dr. Eng sees me once a year now and this is the first time I haven't been scanned.  I know I should be ecstatic, but for some reason it has  caused such anxiety.  I had blood work done and a physcial exam.  I asked if I would be scanned again and she said not necessary.  I asked how would I know if it came back...and if it was in my liver or lungs.  She said I passed the critical mark for reoccurence and that I am NED.  She said blood work would show if something was astray.  I was told to keep up with gyno appts and regular physicals.  I should be celebrating. I am beyond grateful but yet a lingering feeling of the unknown is there.  With all the radiation I had and then all those scans I certainly understand the benefits of not having to do it anymore.  Yet, I worry.  This too shall pass. I've discovered another stage of the cancer journey, just when I thought I had learned to cope with it and move on.  

That aside, I am so happy for those of you that have reached new NED levels!!!!

Liz

Scans

Lizdeli!!!  Liz, I agree with you!  I am really afraid to not have scans.  Every one says 'watching' small nodule in liver and two in lung!  How are they going to be 'watched' now without scans!  And like Martha I am afraid to use the term cured!  

Going to MDA on Sept 1.  No scans scheduled.  Scary.....

eihtak

Scans......

I believe my doctors plan was to discontinue doing scans at the 5 year NED mark as well....although I am also watched for recurrance of breast cancer. Since I was only a bit over 4 years when my lung mets were found, he will now continue scans, yet I am not quite sure of how often at this time. I know he has stated that watching bloodwork and THEN following up if anything suspicious is common practice but also difficult since bloodwork flunctuates so very easily after treatment. I think there is just a lot of variance on this across the board and important to know whats normal for you personally and follow-up if any questions.  Hope all are well or well on their way and enjoying their summer.

katheryn