No Scans but what about..............

Hi Tamlyn,

It's the dilemma so many of us have. TN does have a higher risk of recurrence, but only in the first 2-3 years, and after 5 years it actually drops below the risk of the general population!  Woohoo!

It's pretty standard to not do any scans unless there are symptoms.  The main reason is that studies have shown that early detection of a recurrence is not critical like early detection of a primary BC.  The prognosis and treatment aren't shown to change whether recurrence is detected by screening or upon development of symptoms.  

That being said, and having read a ton of research on it, I just can't seem to grasp that.  Some people operate on the "don't borrow trouble" philosophy and are more comfortable assuming they are cured, while others feel more comfortable with the reassurance of periodic screenings.  Depending on which category you fall into, you may be able to get the scans if you want and insist on them.   My oncologist was fairly neutral about it, but I have decided that personally I'd rather know, so at this point my plan (and my doc's ) is to have periodic scanning, and she has a fairly low threshold for ordering CAT scans, PET scans, MRIs, if I have any symptoms at all.  Of course it's a fine line between vigilance and paranoia, but hopefully it will become easier as we approach that magic 2-3 year mark!

Best of luck and congrats on finishing up with treatment!!!  Definitely a mixed bag of emotions, I know, but a huge milestone nevertheless!  

I hate that "only scan if you have symptoms"  and let me tell you why.....If you scan someone and find a small lesion on their liver, you have options, you can surgically remove a lesion or start chemo and hit it hard and possibly go into remission....now if you wait til there are symptoms you will probably find several lesions or a very large one.  My thought is, isn't it easier to treat one small lesion than several?  I realize at that point you aren't looking for a cure but NED is a real possibility and I dont care what they say, it has to give you more time.

Maybe Im off base here. I dont know

Teresa

Teresa, I completely agree with you - how could it NOT be beneficial to detect a recurrence earlier than later?  It seems so counterintuitive!

I think the risk of a new primary is what the mammograms would mostly be for.  A new primary is not nearly as concerning (relatively speaking!) as distant metastasis, which is the very real concern especially for us TNs. 

Regina - you go, girl! The "scanxiety" and the issue of scans often leading to more scans are big reasons for the no-scan-unless-symptomatic plan. 

Titan, congrats on feeling great!!!!  I know what you mean - afraid to have the scans but afraid not to?  Did you have anything in your pathology or treatment that would warrant more concern than normal? If not, if I were in your situation, I'd probably hold off a while.

For me, I had a "questionable" IM node on PET scan before chemo, so they wanted a post-treatment scan to check on that.  It turns out that was gone, but it did show some small lung nodules, so they wanted to check on that....and there was an area of something on the ribs so they wanted to check on that,  and I was/am having some breastbone pain and swallowing issues so they wanted to check on that... you get the picture.  The good news with all of that is that so far (knock on  wood!!!) nothing has turned up as anything to be concerned about - whewwww!  I have a cat scan in a couple of weeks to monitor the lung nodules, so of course I have scanxiety about that. I suppose I am the poster child for the scans-lead-to-more-scans-and-scanxiety plan!  D'oh!  For me personally, though, I *need* information and facts and my oncologist agrees. 

Hopefully as I get farther out from treatment, I'll get closer to Regina's philosophy and state of mind.  I'm counting on it!

My onc originally said no scans - said it wasn't so much his decision as it was the insurance company's decision.  I pushed a little more........ because I do have pain around the area of my liver which has gone unexplained for two years - this pain put me in the ER twice before my BC dx - both times my liver counts were extremely high, but they couldn't find anything.  Based on this I am having a CT scan of the abdomen once I finish radiation (end of March), but because I don't have other symptoms that will be my only scan for now.  Apparently this is "standard" and unless the dr's can get the approval from the insurance companies, we can't get the scans.