Follow Up Care

Gulamin

It has been a few months since I have been on the site. I did read the latest posts and am happy to see many still active and, unfortunatley, some new posts with diagnoses. I am now 3 years NED and happy to report! I feel good but also still get anxious when I have any symptoms as all of you do. I have a question about follow up care. I am still being followed now every 6 months by the surgeon (until 5 years) and my oncologist said that no other PET scans are necessary. I wonder if that is a good idea and feel like pushing for at least a PET at the 5 year mark. If nothing else really for my emotional well being as otherwise I worry about anything that could be. What is your protocol? 

mp327

Gulamin

If you haven't already, I urge you to register on the site for the National Comprehensive Cancer Network (NCCN.org) so you can view the protocol that has been put forth by that organization.  Once registered, you'll have access to the most current guidelines for follow-up.  I will tell you that those guidelines do not recommend follow-up scans if there is no evidence of disease, either recurrence at the original site or metastasis to another organ.  They do, however, recommend DRE and anoscope every 6 months for 5 years, which is probably what you are getting from your colorectal surgeon.  Getting approval by your insurance company for a routine PET scan at the 5-year mark might be a tough go.  Insurance companies have really tightened up on those.  If you are intent on having a scan, you might be able to get a CT or MRI, but again, that is not the recommendation in the follow-up protocol. 

I am 5 1/2 years post-treatment and continue to see my colorectal doctor every 6 months.  I have no idea how long she intends to follow me, but it give me a sense of comfort to continue getting checked on a regular basis.  I am having issues with my med onc wanting me to have another CT scan in June and am going to speak with his assistant about this.  I won't go in to all of it, but I think I've had enough scans.  However, I do know the sense of well-being a scan can give, so I understand your desire to have one. 

I'm glad to hear you are feeling good and I hope that continues for you!

mxperry220

Scans

I am 5 years 2 months post treatment.  I had PET scans for the first two years post treatment but no scans since.  I was Stage 2 diagnosis.  After 3 years post treatment I have have only annual exams by by colon rectal surgeon.  I have my annual exam coming up in April.  So far I am NED.  There is risk of excessive radiation exposure when PET and CT scans are performed.  I like you was upset when my insurance company denied my PET scan order from my radiologist in 2010.  My radiologist was also upset but the insurance company doctors said they should not be done unless there is suspect of recurrence of cancer only.  I think I may have been one of the intital patients where there was a change in opinion of PET scans.  I went ahead and had the scan and paid the full cost out of pocket because the doctor recommended it but that was my last one.

Gulamin

mp327 said:

Gulamin

If you haven't already, I urge you to register on the site for the National Comprehensive Cancer Network (NCCN.org) so you can view the protocol that has been put forth by that organization.  Once registered, you'll have access to the most current guidelines for follow-up.  I will tell you that those guidelines do not recommend follow-up scans if there is no evidence of disease, either recurrence at the original site or metastasis to another organ.  They do, however, recommend DRE and anoscope every 6 months for 5 years, which is probably what you are getting from your colorectal surgeon.  Getting approval by your insurance company for a routine PET scan at the 5-year mark might be a tough go.  Insurance companies have really tightened up on those.  If you are intent on having a scan, you might be able to get a CT or MRI, but again, that is not the recommendation in the follow-up protocol. 

I am 5 1/2 years post-treatment and continue to see my colorectal doctor every 6 months.  I have no idea how long she intends to follow me, but it give me a sense of comfort to continue getting checked on a regular basis.  I am having issues with my med onc wanting me to have another CT scan in June and am going to speak with his assistant about this.  I won't go in to all of it, but I think I've had enough scans.  However, I do know the sense of well-being a scan can give, so I understand your desire to have one. 

I'm glad to hear you are feeling good and I hope that continues for you!

Thanks!!

Just registered. Thank you for being there for all of us, all the time. I am torn between wanting to know all is ok but also weighing in the risk of yet another scan. So, I think your advice is good as well as the NCCN to move on without another scan. 

Gulamin

mxperry220 said:

Scans

I am 5 years 2 months post treatment.  I had PET scans for the first two years post treatment but no scans since.  I was Stage 2 diagnosis.  After 3 years post treatment I have have only annual exams by by colon rectal surgeon.  I have my annual exam coming up in April.  So far I am NED.  There is risk of excessive radiation exposure when PET and CT scans are performed.  I like you was upset when my insurance company denied my PET scan order from my radiologist in 2010.  My radiologist was also upset but the insurance company doctors said they should not be done unless there is suspect of recurrence of cancer only.  I think I may have been one of the intital patients where there was a change in opinion of PET scans.  I went ahead and had the scan and paid the full cost out of pocket because the doctor recommended it but that was my last one.

Thank you

Helpful information. I have an appointment coming up in April with my oncologist but already know she does not want to order another scan. Given that my scnas looked better each time with the last one near perfect, I guess it makes sense to let go and move on. There is such comfort though in knowing... knowing that all is ok. Since cancer is such a silent disease... you always worry and having somebody tell you, besides that anxiety of the waiting for results, that all is ok... it is priceless. So, the last scan you had then after 3 Years NED, right? 

 

mxperry220

Gulamin said:

Thank you

Helpful information. I have an appointment coming up in April with my oncologist but already know she does not want to order another scan. Given that my scnas looked better each time with the last one near perfect, I guess it makes sense to let go and move on. There is such comfort though in knowing... knowing that all is ok. Since cancer is such a silent disease... you always worry and having somebody tell you, besides that anxiety of the waiting for results, that all is ok... it is priceless. So, the last scan you had then after 3 Years NED, right? 

 

Two Years

I had no scans after 26 months.

Mike

eihtak

Gulamin said:

Thank you

Helpful information. I have an appointment coming up in April with my oncologist but already know she does not want to order another scan. Given that my scnas looked better each time with the last one near perfect, I guess it makes sense to let go and move on. There is such comfort though in knowing... knowing that all is ok. Since cancer is such a silent disease... you always worry and having somebody tell you, besides that anxiety of the waiting for results, that all is ok... it is priceless. So, the last scan you had then after 3 Years NED, right? 

 

Gulamin....

There seems to be such a variation in follow-up care and it leaves one questioning what is right and whats not. The guidelines are there for a reason so I have always felt good in that my doctor followed them fairly close. Every case is different though so needs some flexibility.

I was first scanned with CT at 3 months (a little early maybe), then 6 months again and a PET scan at 1yr. From the PET scan I was diagnosed with a rare breast cancer not usually seen on a mammogram until late stage, so thank God for the PET!! For the next 2yrs I had CT scans every 6 months more or less, though the schedule was adjusted to alternate pelvic scan with chest and pelvic together due to the breast cancer. ( I was Stage 3b with lymph node involvement on the AC and Stage 2 on the BC, so specific guidelines apply to Stages )

I will be 3 years post treatment for the anal cancer this April and 2 year on the breast cancer. My doctor has not ordered another scan until December though I see him (my onc.) who also does a rectal exam every 6 months. My clinic does not have a colo-rectal surgeon though I saw one last summer out of town just to ease my mind.....all was well. I had a general surgeon do my initial biopsy, ostomy surgery, breast surgery, and follow-up care but do not have any appointments with him at this time. Although he is not a colo-rectal surgeon, he is highly respected and came well reccommended and I felt more knowledgable than the colo-rectal surgeon I went to see. My onc is involved in a lot of research and again I feel in good hands. I have also had a bone density test almost 2 yrs ago and am having another one in June. I am lucky to have a GREAT PCP that ties all my care together....she usually does my pap test but just due to my history had me see a gyno-oncologist for my last one....again, all good aside from some internal/external stenosis.

It is important to be aware of your own body but not drive yourself crazy with worry of what may be down the road along with a doctor that you trust to be attentive to your concerns whatever the guidelines say.

Congratulations on your good report.....may they continue for many many years for us all!!!