Still a little confused about Pet Scans.......
I mean, I know I go to one of the top hospitals but why do some doctors order them and some don't.
Does anyone have a good answer for me because I really need to know. I don't want to ask my doctor because if I haven't had one, then I guess they don't do it. They, meaning my MO as well as my surgeon. My surgeon ordered tons of other tests though.
Thanks,
Wanda
Comments
-
I used to wonder the same thing.
Today I will have my first ever PET scan. I assume it was only ordered because there was a significant change between my March and June CT scan. I have never ever had an MRI but I hope that won't be next. It amazes me how different docs rely on different test. It might also depend on what different insurance companies allow. You should never be afraid to ask your doctor something if you are confused. I haven't had the PET yet but so far I'm not liking it because I was told no sugar, caffeine, carbs of any kind 24 hours before the test and nothing to eat 6 hours before. So, I'm missing my morning coke and I'm hungry. Also, they apparently don't have the equipment to do PET's in as many places as they do CT's so I have to drive to Ft. Worth which is freaking me out all by itself. Sorry if that was too much information.
HUGS!!!
Jamie0 -
Scans..
I guess it depends on your situation and what your doctors feels is needed...I have had quite a few but my situation is probably different from your's..I can't remember what your's is....chemo brain and reading so many posts, I get confused.....duh....from my understanding a PET will light up cancer areas when done with contrast dye...When I was dancing with NED for 19 months I asked about scans...was told that if a "symptom" was present they would give it 2 weeks...if still present then they would do scans, PET and CT...hopefully others will chime in with better knowledge...but I see no reason NOT to ask your doctors...sometimes it is insurance related, but I've not had that problem...
Wishing you the best,
Nancy0 -
Jamie....MAJW said:Scans..
I guess it depends on your situation and what your doctors feels is needed...I have had quite a few but my situation is probably different from your's..I can't remember what your's is....chemo brain and reading so many posts, I get confused.....duh....from my understanding a PET will light up cancer areas when done with contrast dye...When I was dancing with NED for 19 months I asked about scans...was told that if a "symptom" was present they would give it 2 weeks...if still present then they would do scans, PET and CT...hopefully others will chime in with better knowledge...but I see no reason NOT to ask your doctors...sometimes it is insurance related, but I've not had that problem...
Wishing you the best,
Nancy
Don't freak out...there's really nothing to a PET scan...I've have never been told to no carbs( though they convert to sugar) no caffeine...I have had so many scans...some no food after midnight...some had to drink two BIG bottles of that awful white stuff 4 hours before some of the scans, etc..again I guess it depends what they're looking for...all of mine have been done with contrast dye which I understand is sugar "based" ...
So...please don't freak out..! The worst part might be putting in the butterfly needle..it's small..has never, for me, been nothing more than a little stick...I will tell you this...when the contest dye starts going through your system, you may feel like you're peeing your pants, but you're not!!! It's just the sensation...thankfully I was warned about this!..... just close your eyes..I still do that after many scans...And I have driven myself...you'll be fine!
Hugs, Nancy0 -
In my case, the one PET scan
In my case, the one PET scan I've had was a follow up to a CT scan. The doc saw something on the CT scan and wanted more information so then ordered the PET.
Hugs,
Linda0 -
I have never had one or it
I have never had one or it mentioned to me. The only way I knew of prior was Drs wanted my mom to have one all the time and she did not have cancer! HER medical insurnace didnt' cover it so she never had one!
Denise0 -
Jamie, Good luck with yourdisneyfan2008 said:I have never had one or it
I have never had one or it mentioned to me. The only way I knew of prior was Drs wanted my mom to have one all the time and she did not have cancer! HER medical insurnace didnt' cover it so she never had one!
Denise
Jamie, Good luck with your scan and I'm sure it's not hard if Nancy already had one. And no way you gave me too much information! I thank you for answering. Nancy, I had (notice the later tense
) Stage 3a with 8 positive nodes. But here's the thing.....my surgeon wouldn't operate until I had a chest CT ( looking for node involvement there she said and a bone scan (looking for mets to bones of course) and contrast CT of abdomen for liver mets.
Okay, so...they see enlarged lymph nodes in chest and she sends me to thoracic surgeon and had to have them biopsied. Also needed 2 years more of that in case they grew, they weren't cancerous. Liver showed a mass so.....I had to have an MRI of liver. Showed it was just a hemangioma.
This long story is to show you that she was thorough in every aspect, but never mentioned a Pet.0 -
I hadLighthouse_7 said:Jamie, Good luck with your
Jamie, Good luck with your scan and I'm sure it's not hard if Nancy already had one. And no way you gave me too much information! I thank you for answering. Nancy, I had (notice the later tense) Stage 3a with 8 positive nodes. But here's the thing.....my surgeon wouldn't operate until I had a chest CT ( looking for node involvement there she said and a bone scan (looking for mets to bones of course) and contrast CT of abdomen for liver mets.
Okay, so...they see enlarged lymph nodes in chest and she sends me to thoracic surgeon and had to have them biopsied. Also needed 2 years more of that in case they grew, they weren't cancerous. Liver showed a mass so.....I had to have an MRI of liver. Showed it was just a hemangioma.
This long story is to show you that she was thorough in every aspect, but never mentioned a Pet.
I had a PET scan after I was first diagnosed. If I remember correctly, it was too see if there were any other cancer spots. Only my lump and my nodes "lit up". I will finish Herceptin in August and will have another PET scan then. I'm positive that nothing will "lite up" then.
It was pretty easy, I remember them putting me in a dark room with a blanket before the scan - nice little nap!
Hugs, Debi0 -
I've never had a PET scan.Gabe N Abby Mom said:In my case, the one PET scan
In my case, the one PET scan I've had was a follow up to a CT scan. The doc saw something on the CT scan and wanted more information so then ordered the PET.
Hugs,
Linda
I've never had a PET scan. I have a mammo, ultrasound and a MRI every year. I think the PET scan is only used if they know you have cancer again, or, if you are on chemo and they are trying to see if the chemo is working, shrinking the tumor or tumors.
I did have a bone scan when I was having some back pain, and, it turned out ok!
I hope this helps to ease your mind.
Hugs, Angie0 -
I had a PET after CT and MRI
I had a PET after CT and MRI as due to amount of IBC/node involvement that showed, he wanted a PET to give him a better idea of rather or not he was TXing a late Stage III or a known Stage IV. (Neo-adjuvant chemo is 'standard' for IBC.)
PET scans are incredibly sensitive and will pick up anything 'different' - sometimes even where this is nothing. My right lower jaw 'lit' up. Next day I was at an ENT Dr for a biopsy of the area. Dr said he was sure there was nothing going on to worry about but biopsied the area to be sure - came back normal. According to him - old surgery sites (had oral surgery 20 yrs before) will sometimes/often show on PETs.
The only scans I've had since end of TX have been for specific issues. Had more back pain so had a bone scan - just my arthrits getting worse; had head MRI for massive pain around and behind eye that vicodan and Oxy would not do anything for (Dex would though) y nothing showed and it stopped as rapidly as it had started so decsion was it was an irritated nerve; had an abdominal CT for a couple of issues but again nothing showed. I have annual mammo on remaining breast and annual bone density test.
We are all different and our DX/TX is different. Our Drs are different. Our TX is different even within the same DX.
Winyan - The Power Within
Susan0 -
Thanks Nancy......butMAJW said:Jamie....
Don't freak out...there's really nothing to a PET scan...I've have never been told to no carbs( though they convert to sugar) no caffeine...I have had so many scans...some no food after midnight...some had to drink two BIG bottles of that awful white stuff 4 hours before some of the scans, etc..again I guess it depends what they're looking for...all of mine have been done with contrast dye which I understand is sugar "based" ...
So...please don't freak out..! The worst part might be putting in the butterfly needle..it's small..has never, for me, been nothing more than a little stick...I will tell you this...when the contest dye starts going through your system, you may feel like you're peeing your pants, but you're not!!! It's just the sensation...thankfully I was warned about this!..... just close your eyes..I still do that after many scans...And I have driven myself...you'll be fine!
Hugs, Nancy
That sounds more like my CT scans have been. With the PET, he put in an IV, injected a radioactive tracer and then a glucose solution. He removed the IV and I had to wait in the recliner for one hour to allow the "stuff" to go wherever it needed to before the scan. I was okay until the part where I had to exhale and not breathe because it lasted too long and I had to take one or two small breathes and also mastectomy side began to hurt like H#!! I was ready to scream, let me out of here. When it was over and he realized how much that hurt, he said next time I could keep that arm to my side. Nice to know!!! We really need to train some of these people.
HUGS!!!
Jamie0 -
PET Scan
In the last 5 years I have had 5 PET scans and all of them I paid for myself. The peace of mind they provide is well worth the money (about $1200). They inject a radioactive glucose solution into you and allow it to spread throughout your body. This takes about 1-2 hours. Then you are placed in the PET scanner and this takes about 1 hour. Your entire body is scanned, toe to top of head. Simply put, tumours absorb sugar (glucose) faster than other parts of your body. The scan then pin-points these uptake spots. No uptake spots then no tumours = peace of mind....the last scan I had I fell asleep in the scanner...there is nothing to worry about in having a PET scan.
People talk of false positives...maybe..I have had none. I think the main reason that doctors do not use it more is that they really do not know much about them. Here in Canada it is ridiculous that PET scans are so difficult to get done. Cost is also a factor and some medical aid schemes will not pay for them.
You really have to be proactive...remember your the one with the cancer not the doctor !!!!!!!
Hope this helps....IMHO go for it....don't even hesitate.0 -
"flase positives" do happen - not "maybe"snowmaneasy said:PET Scan
In the last 5 years I have had 5 PET scans and all of them I paid for myself. The peace of mind they provide is well worth the money (about $1200). They inject a radioactive glucose solution into you and allow it to spread throughout your body. This takes about 1-2 hours. Then you are placed in the PET scanner and this takes about 1 hour. Your entire body is scanned, toe to top of head. Simply put, tumours absorb sugar (glucose) faster than other parts of your body. The scan then pin-points these uptake spots. No uptake spots then no tumours = peace of mind....the last scan I had I fell asleep in the scanner...there is nothing to worry about in having a PET scan.
People talk of false positives...maybe..I have had none. I think the main reason that doctors do not use it more is that they really do not know much about them. Here in Canada it is ridiculous that PET scans are so difficult to get done. Cost is also a factor and some medical aid schemes will not pay for them.
You really have to be proactive...remember your the one with the cancer not the doctor !!!!!!!
Hope this helps....IMHO go for it....don't even hesitate.
There is "many" - PET will lit up for many reasons. Because you have not had an area lit up does not mean that others don't that are not cancer. To use that theory, I could say that "maybe" nausea happens with chemo - I had NONE with 16 infusions. I could say that "maybe" some deal with with cellulitis and LE - I deal with fairly significant LE and have not had any issues with it. That does not. Mean I would ever say that "maybe" it is dealt with by others.
Point is - there is no way any one of us can state what we have dealt with is what all will have to.
Winyan - The Power Within
Susan0 -
If she didn't mention a PET,Lighthouse_7 said:Jamie, Good luck with your
Jamie, Good luck with your scan and I'm sure it's not hard if Nancy already had one. And no way you gave me too much information! I thank you for answering. Nancy, I had (notice the later tense) Stage 3a with 8 positive nodes. But here's the thing.....my surgeon wouldn't operate until I had a chest CT ( looking for node involvement there she said and a bone scan (looking for mets to bones of course) and contrast CT of abdomen for liver mets.
Okay, so...they see enlarged lymph nodes in chest and she sends me to thoracic surgeon and had to have them biopsied. Also needed 2 years more of that in case they grew, they weren't cancerous. Liver showed a mass so.....I had to have an MRI of liver. Showed it was just a hemangioma.
This long story is to show you that she was thorough in every aspect, but never mentioned a Pet.
If she didn't mention a PET, it is because she didn't feel you needed one. MRI's are pretty accurate.
Good seeing you post again!
How is your brother doing?0 -
Like some others, IRague said:"flase positives" do happen - not "maybe"
There is "many" - PET will lit up for many reasons. Because you have not had an area lit up does not mean that others don't that are not cancer. To use that theory, I could say that "maybe" nausea happens with chemo - I had NONE with 16 infusions. I could say that "maybe" some deal with with cellulitis and LE - I deal with fairly significant LE and have not had any issues with it. That does not. Mean I would ever say that "maybe" it is dealt with by others.
Point is - there is no way any one of us can state what we have dealt with is what all will have to.
Winyan - The Power Within
Susan
Like some others, I naturally get mammos and ultrasounds and MRI's once a year. My onco has never ordered a PET scan. I have had CT scans where you drink that awful stuff...ewww0 -
The last CT I had, the drinkDebbyM said:Like some others, I
Like some others, I naturally get mammos and ultrasounds and MRI's once a year. My onco has never ordered a PET scan. I have had CT scans where you drink that awful stuff...ewww
The last CT I had, the drink before was in a lemon/lime drink (she said it was Gator Aide) and it wasn't bad at all.0 -
A PET scan is the one thingRague said:The last CT I had, the drink
The last CT I had, the drink before was in a lemon/lime drink (she said it was Gator Aide) and it wasn't bad at all.
A PET scan is the one thing I haven't had, and, like some of the others, my onco saw no reason for one. If you are really concerned, talk to your onco about who should have one and exactly why he hasn't ordered one for you.0 -
Confused but in good company
My doctor ordered an MRI. He wanted a baseline MRI as I am a year out of cancer. Now I am not sure whether it is the MRI or a Pet scan but one of these tests they order will light up any cancer lingering in the body anywhere. However, not everything that lights up is cancer either. So I guess it is worth having the "light up my cancer" test but it can have those false positives that lead to added worry.
I agreed to have the MRI because I had triple negative bc and it is an aggressive one. So if those sneaky cells got out and decided to create havoc elsewhere I sure would like to hop on the bandwagon and beat them double dead.
I agree that sometimes the insurance companies have a lot of input into what the doctors are allowed to order. I hope no one limits thier family member's options in the future.0 -
Wanda, I never had a PETRague said:I had a PET after CT and MRI
I had a PET after CT and MRI as due to amount of IBC/node involvement that showed, he wanted a PET to give him a better idea of rather or not he was TXing a late Stage III or a known Stage IV. (Neo-adjuvant chemo is 'standard' for IBC.)
PET scans are incredibly sensitive and will pick up anything 'different' - sometimes even where this is nothing. My right lower jaw 'lit' up. Next day I was at an ENT Dr for a biopsy of the area. Dr said he was sure there was nothing going on to worry about but biopsied the area to be sure - came back normal. According to him - old surgery sites (had oral surgery 20 yrs before) will sometimes/often show on PETs.
The only scans I've had since end of TX have been for specific issues. Had more back pain so had a bone scan - just my arthrits getting worse; had head MRI for massive pain around and behind eye that vicodan and Oxy would not do anything for (Dex would though) y nothing showed and it stopped as rapidly as it had started so decsion was it was an irritated nerve; had an abdominal CT for a couple of issues but again nothing showed. I have annual mammo on remaining breast and annual bone density test.
We are all different and our DX/TX is different. Our Drs are different. Our TX is different even within the same DX.
Winyan - The Power Within
Susan
Wanda, I never had a PET scan, but, I thought it was because I didn't have chemo. I do have MRI's, which would show up any cancer, so, maybe that is why?0 -
My radiation oncologist
ordered a PET scan for me. I think he wanted to give me peace of mind because of the pesky lung nodules residing in my lungs. There was some light up ... around my breast. The one that had the lumpectomy. I thought that was pretty interesting. The scan picks up on cells that have an SUV score of 2 or higher (I think). It is a glucose uptake test. There are problems with this test. For me, some of the nodules were below the spatial capacity of the scanner. Meaning, they weren't visualized. So, the test I had came back "indeterminate" for many of the nodules.
I've been posting about my journey with this debacle and after 7 months of uncertainties, those little buggers are going with me to see the fine doctors at Sloan Kettering.
Don't be afraid to ask about this test. My thinking is the test won't be ordered unless it is truly necessary. It is quite expensive and many insurance companies will balk at having it done if the doctor cannot prove its necessity.
Try not to worry and take time to smell the roses.
xoxo
Mary0 -
I've had CAT scans, a bonelaughs_a_lot said:Confused but in good company
My doctor ordered an MRI. He wanted a baseline MRI as I am a year out of cancer. Now I am not sure whether it is the MRI or a Pet scan but one of these tests they order will light up any cancer lingering in the body anywhere. However, not everything that lights up is cancer either. So I guess it is worth having the "light up my cancer" test but it can have those false positives that lead to added worry.
I agreed to have the MRI because I had triple negative bc and it is an aggressive one. So if those sneaky cells got out and decided to create havoc elsewhere I sure would like to hop on the bandwagon and beat them double dead.
I agree that sometimes the insurance companies have a lot of input into what the doctors are allowed to order. I hope no one limits thier family member's options in the future.
I've had CAT scans, a bone scan and MRI's, but, never a PET scan. I think I am confused now too. LOL0
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