PET or not?

Teel

I'll tell you my story which tells the difference between c/t - bone scan versus pet scan.    I was diagnosed in February 2008.   Before my lumpectomy I had a bone scan and C/T scan.   They were clear except for a tiny nodule on my lung.   My surgeon said since it was so tiny it was likely just focal scarring and she was not concerned.   Three weeks later I went to my first oncologist to get going on chemo.   He said he wanted a PET scan before we started to look at that nodule closer.   So I get a pet scan.    The nodule turns out to be focal scarrinig as we thought.  However, the PET scan showed five lesions on my liver and mets to several ribs, my hib and the supraclavicular nodes.    The onc was floored that in that short of time it had spread so quickly.    I ended up going to a different oncologist and her feeling on me is that there are many stage II and Stage III patients who are really stage IV but because PETs are not necessarily done unless there is something alarming on the CT/Bone scan, that we do not know they are stage IV.  She said these patients are often treated successfully and some that reoccur were probably stage IV to start with.    So, she treats me as if I am an earlier stage cancer (more aggressively).  The onlly difference is that I will get Herceptin for life.   Being very HER+ positive, I am actually very happy to have Herceptin indefinitely.   

Not to scare you but if you want a PET scan then your oncologist ought to order it for you.   I think cost is probably the difference in why some go with c/t & bone scans versus the PET scan.  

Jennifer

I had a PET for staging right off the bat... my sister was diagnosed a year after me and to this day has never had PET. Her doc ran a bunch of other tests instead. Someone said maybe because of cost? A PET is about three thousand... I don't know about the cost of the CT... but if it makes you sleep better at night, I would definitely ask for the PET. Teel, this is the hardest time through all this - the diagnosis, the staging, etc. Once you know what you are up against and have a plan of attack, it will get better. Fight mode is a little easier than the not-knowing and waiting mode. I wish you well on this journey. You will do just fine.

I would like to know the answer to this also. I am a stage 1 with 1 node with atypical cells. I have asked my onc at every meeting (4 now) after each chemo if she will order me a pet scan. She got angry with me today and said we are not going to have this conversation. She said you are a stage 1 and tch is a curative treatement for you. She said she would not order one unless and until it's indicated.  I think part of it is my crappy insurance. PET scans cost 7-8K -at least that's what they charge and contractually agree to accept as payment in full. I am going to fake pain in my chest nodes after I finish chemo. It will be the only way she will order one. It's a stupid game. You have to give them a reason. Some of the bigger clinics who know that baseline scans are essential totally understand the importance while the smaller hospitals try to save costs and say let's wait and see what pops up. Well I don't want to wait and see. I had an MD who is a spiritual healer tell me I had mets on my lungs and that I should get a pet scan but he couldn't order one. This prompted my asking my onc for one and each time the answer is no. So, the next time I go in I will have a nagging pain in my hip and chest that just won't go away. If she orders a CT or Bone scan I will insist on a pet. She's gonna be hoppin mad but it's my cancer and my body.

I, too am PET obsesses.  My onco. won't give me one as I am stage 1.  I did chemo and rads  and will start tamox. this week.  I really trust her but still - she has told me that it is not necessary for a stage 1 - would not show anything as most likely there is nothing to see and if there is something it is microscopic at this point.  When I mentioned other stage 1's that I know on bc.org that have had petscans, she had kind of a sassy remark "those docs are trying to get there pet equipment paid for".  Sigh.....I see her on Friday and am kind of over the pet scan obsession, but want a bone scan to monitor bone loss from hormone therapy.

Carcharm - I don't blame you - I may be doing the same!

One reason they will do a PET for some women is if they are getting neoadjuvant therapy. PET is the only staging test we receive.

For me, it was a PET pre-chemo and a PET post-chemo.

I initially only had the CT/bone scans/MRI's as well.  I asked my onco for a PET scan early on - she would not have brought it up on her own but I specifically asked and said I was interested in having one to supplement the baseline information we were getting with the other tests.  She ordered it and my insurance paid for it completely. I guess I was fortunate in that regard.  It gave me additional peace of mind during an uncertain (to say the least) time.  I think it is entirely reasonable that we be able to request tests that could provide additional information early on - though some of the tests are very expensive they are nothing compared to what it costs to treat cancer once discovered in it's later stages.   

I wish you all the very best.

Julie

I had PET to have a base line before surgery/chemo. I will recommend one before starting chemo.

I'm a patient at MD Anderson. No PET, MRI or CT. And I'll not have any of those on a regular basis, either. There are so many different "protocols"....

I guess that works both ways. I had a Pet/ct the same week I was dx'ed, and it caused me to be mis-staged as stage IV until I got a bone scan 6 months later.

I've had 2 more since then, and all is clear. 

That said, I still think a pet/ct is the way to go, but if something shows up, get a MRI or bone scan to verify the pet findings.

I asked my onc about a scan (any scan!).  He told me that I am an early stage and that he only scans if there is a problem (pain).  He told me I could have one if I wanted it.  I don't know what to do?  I thought that it would be a good idea to have one from the start to make sure we know what we are dealing with but he said that the percentage of women who have mets when they are stage 1 or 2 is so small that they don't warrant a scan.  I normally not like this but in some ways I don't want one because I am so afraid of what they will find.  Ignorance is bliss.  Being stage IV is so terrifying to me that I just want to enjoy this time being "cancer" free as long as I can.  I know that doesn't really make sense but this thinking is being feed by FEAR.  That being said, I have some pain on the side where my cancer was.  It seems to be in the rib area.  Maybe swelling from the treatment (the skin is very sensitive and hurts).  Anyone else have this?  Should I get a scan????

I had a PET scan the same week as a CT and bone scan - all within a week of being diagnosed with Stage IIb, Grade 2.  I was very nervous but glad that I had it done to rule out any mets.  I then had my lumpectomy and snb and then made the decision to get chemo in addition to rads, but I am sure my treatment may have been a little different had the PET scan showed mets anywhere else.  I was glad I had them all done, and that my bs was so vigilant in ordering every test to rule out everything else.