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Still a little confused about Pet Scans.......

Lighthouse_7's picture
Lighthouse_7
Posts: 1566
Joined: Jan 2010

As I read so many of you posting about your Pet Scans, I can't help but wonder why I've never had one??
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

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

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!!!
Jamie

MAJW
Posts: 2515
Joined: May 2009

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

MAJW
Posts: 2515
Joined: May 2009

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

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

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!!!
Jamie

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

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

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

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, Angie

NancyJac's picture
NancyJac
Posts: 96
Joined: Jun 2012

That is partially true. The primary use of a PET scan for cancer is to determine if an already diagnosed primary cancer has metastisized. So if you are currently NED, there is no benefit to having a PET. It also cannot determine if chemo is working, A PET only identifies areas of high metabolic activity (i.e. high glucose uptake). It cannot measure the size of tumors (that is what a CT does). And even if an area "lights up" on a PET, there is no way to know if it is cancer. Any type of infection or inflamation will cause a hot spot. When I had a PET, I had several hot spots including one on my lung, in my nose, and around my thyroid. The lung and nose was do to a slight cold at the time and they thyroid is because I have auto-immune thyroiditis and my medication for that is what generates the metabolic activity in that area. So having a PET without a specific reason to have one (e.g. looking for mets for an currently active primary cancer) is just of no medical use.

disneyfan2008
Posts: 5259
Joined: Oct 2010

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

Lighthouse_7's picture
Lighthouse_7
Posts: 1566
Joined: Jan 2010

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.

debi.18's picture
debi.18
Posts: 847
Joined: Jun 2011

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, Debi

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

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?

Rague
Posts: 3260
Joined: Aug 2009

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

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

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?

snowmaneasy
Posts: 2
Joined: Apr 2010

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.

Rague
Posts: 3260
Joined: Aug 2009

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

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

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

Rague
Posts: 3260
Joined: Aug 2009

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.

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

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.

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

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.

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I've had CAT scans, a bone scan and MRI's, but, never a PET scan. I think I am confused now too. LOL

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

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
Mary

Monicalynn
Posts: 61
Joined: Apr 2012

I haven't had one, I am stage I with no lymph node invovlement, when I asked about a fully body scan he said since it wasn't in the lymph nodes then it isn't needed

NancyJac's picture
NancyJac
Posts: 96
Joined: Jun 2012

You should most definitely ask you MO because there are lots of valid reasons to not do one, but only you MO would know what they are. It could cancer type, grade, stage, lots of other reasons, but never because they don't do it.

camul's picture
camul
Posts: 2004
Joined: Dec 2010

I have had a lot of PET Scans. I had one when I was initially diagnosed in 2002, then 1 a year for the first 3 years, had one following a bone scan at about 5 years, then had 2 or 3 in 2009. Had one in 2010, which found the mets. Have had 4 since then to see if the chemo was working.

Mine have shown false negatives, but the RO said that any exercise, even just bumping into something could show up as positive. The contrast will light up on recent scars, operations, or infections also. I prefer a bone scan, CT, or MRI. For my peace of mind, these have been more accurate. My MO says that the best indicator of whether the chemo is working is by how I feel! But he does do the scans! He doesn't do tumor markers though.

I trust that he knows what he is doing!

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

My onco doesn't do tumor markers either and it seems most don't. Does anyone know why some onco's do them? Do they feel they are reliable?

Thanks,

Angie

NancyJac's picture
NancyJac
Posts: 96
Joined: Jun 2012

According to my onc, test for tumor markers, like PET can have a lot of false positives because things other than cancer can affect those markers. Just about any excess or deficiency or toxic/foreign matter in the blood stream can affect the results. Other things such as smoking, taking certain meds, etc. can affect it too. My onc does both PET and tumor marker testing when she feels it is useful, but never uses either in isolation to make a decision or recommendation for treatment. She treats them more as potential indicators or comparative trends rather than definitive diagnostic tools.

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I think NancyJac is right, please talk to your onco about whether you need one or not and the reasoning behind it. I've also never had one.

Post to update us,

Diane

hebadekei
Posts: 2
Joined: Jul 2012

If you don't have PET scan, maybe you don't need it, or your doctors don't want you do such scan to protect you from worries. - Strep Throat SymptomsI don't think you have other choices besides trust your doctors. You still need to corporate with your doctors, that's the only choice you can do. - pain in lower right abdomen

MAJW
Posts: 2515
Joined: May 2009

Mine have always been correct...They do them every 3-4 months....in Feb. mine was 98....way up! Scans were ordered and they showed the 3 small spots on my brain and a small spot on my liver....I was totally asymptomatic, nothing to indicate a problem...i actually was feeling good, so it was a real shock!! So without the tumor markers, we would have had no clue about these two things and they more than likely they would have progressed...I had 10 brain rads and since chemo with Avastin+Carboplatin....my tumor markers were done 3 1/2 weeks ago....they are now 34.!!!!..and my cancer center lab runs the numbers twice to make sure they get the same numbers....So, for me I am thankful my oncologist does them...yes they can give false positives and false negatives..nothing's 100% perfect..but in my case they have always been right...

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