anyone refuse/decline post-tx CT/bone scans?

I had Pet/ct, bone, and plain ct scans during treatment. Now I'm about 8 months out of treatment and I asked about a scan.  Doctor wanted to wait awhile, but I told him better do it while I have insurance.

I understand the worry and apprehension that comes with scans, but better to know and catch something early, than miss it. Also nice when you get a clean scan.

Just my thoughts on it. 

Hi Mary Jo,

I has a CT/PET scan before starting chemo to check for any problems and to have as a baseline.  My oncologist sent me in for another baseline CT/PET scan 3 months after finishing chemo and herceptin.  She said it was to have a scan for comparison in case of problems.

Of course, something showed in my spleen that the reading radiologist was sure was a malignancy.  After a battery of bloodwork and a high resolution CT w/wo contrast, the thought was that it was a rare splenic cyst. 

That was last May.  Since then, I had a follow up CT/PET scan in August to make sure there were no changes and am having another one the beginning of January.

I wish I didn't have that one in May.  The false positive was nerve-wracking and I hate having CT/PET scans every 3 months to make sure everything is stable in the spleen . 

I am also thinking about having reconstruction with silicone implants.  If I have expanders in, I can't have a CT/PET scan done.  If the January scan is clear, I hope my oncologist will agree I don't need another scan for at least a year.

Mary Jo

Mary Jo, not only are follow-up scans not recommended in the absence of symptoms, they are often not preformed during the diagnostic work up with early stagebc.  The NCCN Clinical Practice Guidelines state that bone scans and CT scans are optional, depending on symptoms and/or abnormal test results if thebc is stage one.

My onc never recommended a bone or ct scan, as my tumors were stage 1, grade 1.  I asked for a bone scan because I wanted a base line  and he was okay with ordering it, but said it wasn't necessary.  (He was right - the results were perfectly normal. ) I also asked for a bone density test,  because I wanted a base line before taking any drugs that may effect my bone density.  

There's much to be said about waiting for some symptoms before having a scan.

Something to consider though, and keep in mind, my case is probably much different than your's. I had a positive Internal Mammary node, and had no symptoms of it at all.

The only way I knew it was in the node chain, was the fact that I had a Pet/CT scan and it lit up like light bulb.  After all my treatment, I asked my onc about my follow up care. How would we know it hasn't come back? He said the same, we'll do scans if I have symptoms. But when I asked about the chest nodes, and that there would be no symptoms there, he said "we'll do a scan every so often".

Of course you don't want to have to keep worrying about BC, and getting back to a somewhat normal life is great!  Just wanted everyone to be aware that there are some circumstances where only a scan will do.

My tumor markers were never high, so I can't count on them a as predictor.

I have annual scans.  The information on Herceptin is "new" and we are part of the "new numbers," so, at least in my case, my scans provide important data.

Tammy Lou

Blue willow,

I am triple positive, and have never had a CT/bone scane either before or after my mastectomy.  My onc. said only if I have symptoms.  I do have tumor markers drawn every six months, which does add to my panic attacks, but that's ok.  It is a necessary evil, I suppose.  I guess I could refuse those, but then, I probably would loose my onc.

Jennifer

I refused scans and tumor marker blood tests for 8 months. I just didn't want to know!

I had to chime in on this topic because I, too, use to think that I wanted scans.   That control to "get it" early if "it" was their.  However, my oncologist explained to me that although scans can and do find cancer...they only find the cancer if it is a certain size.  So, even if a scan comes back "clean" does not mean you truly don't have a malignancy somewhere.......also, often times, a false positive is found and that is incredibly stressful.

I can speak to these things because I, NOT on the advise of my oncologist, went ahead and had a PET/CT scan that my radiation oncologist here in  my city said he would order. So, I went a head with it and I wish I hadn't.  A false positive was found - but of course - at that time we didn't know for sure it was a false positive.  So, after having ultra sounds and watching it for months and months we know it wasn't a cancer.  The stress of that ordeal was WAY more than I'd ever want to go through again on a regular basis.

Although, waiting for symptoms and the always wondering if our cancer has or will return, is very frightening at times.......the stress of looking for cancer is even more frightening in my opinion.

That's just my 2 cents on this subject. 

Mary Jo

I have to agree with Mary Jo....... Enjoy life! Relax! Enjoy that little one in your avatar!

My situation was different... I have mets and i just wanted to have some fun without cancer hanging over my head all the time.

I think if all is well, they tell women to come back 6 mos. or a year after treatment. Does someone know the exact timing of that?