Follow Up Care

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 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? 

 

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!!!