1 (edited by jhagopian Sun, 19 Feb 2012 13:16:07)

Topic: Pet Scans

I have had been free of cc for 2 years and 2 months and thus far am doing well-thank god.  I wold like to have a Oet scan as advised by some of my friends with various canceres. 
botj my surgeon and oncologist do not seem hot on the idea. I get an MRI and a C
at scan every 4 months.  I'd like to know opinions on Pet Scan versus MRI/CAT scan.  Thanks so much

Please ignore mistake in first message.  Am nervous.

Re: Pet Scans

Dear JHagopian, good to see you again and I am curious where you are being treated. Ah, well meaning friends who are not knowledgable about CC. When Teddy was going through all this he had PET Scans every 6 months with monthly visits to the ONC with LABS. That is how they kept watch. From what I understand a PET shows 'hot' spots whereas an MRI shows that spot with more definition. I can only go with how they watched Teddy. It sounds like you are doing very well what kind of treatment have they given you? Now, I am curious as to why an MRI and a CAT scan? I hope you are not nervous about this site, it is a wonderful Board and welcome back.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Pet Scans

jhagopian...Congratulations on the two year survivorship and a warm welcome to our site. Please do not be nervous.  None of us are experts rather we are people like you trying to help each other and support each other.

In regards to the differences between PET scan and CT scan or MRI (magnetic resonance imaging) this is what I have learned:

Pet scans reveal changes occurring in an organ or in a tissue.  Diseases often begin with changes at a cellular level.  Pet scans reveal those changes occurring at the onset of the disease in an organ or a tissue. 

MRI and CT scans detect these changes a little later when the disease is causing  structural changes in organs and tissues.

I hope this helped.  Please continue to reach out to us.  We are in this together.
Love and hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Pet Scans

Marion, thanks so much for your help.

Re: Pet Scans

I had my surgery at Johns Hopkins but am being followed by the same surgeon and  locally by an oncologist.  I'd like to find an oncologist at a center that has experience with
cc.  The one whom I met at Hopkins was obnoxious, told me that I didnt have cc(this was after my surgery.  Any way, after he finally spoke to my surgeon he changed the diagnosis back to cc.    i refuse to return to him so I am still in need of an oncologist or center up to date in cc. 
any ideas?  I am not sure why I am having both a scan and mri-I will make a point to ask at next visit.  thanks so much for your help.

Re: Pet Scans

Lainy,
After surgery I was treated with   for 6 months with genzyme.  I am a young 69 year old and until cc have been in excellent health.

Re: Pet Scans

You are more than welcome.  There is a PET/MRI device which combines the images, but as far as I know at present is only used for head and brain images.
With some exceptions, for our cancer, the majority of patients are followed via CT scans.  I am hoping for others to chime in also and share their thoughts with us.
Hugs and love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Pet Scans

We do have quite a few people in the area of JH, so it would be interesting to see if they have some ONC suggestions for you.  What city do you hail from? Being a Sunday we are usually a little quiet here but I know that by tomorrow you will get a lot more posts as our Family is so eager to help! I was also wondering why you are having both Scans. I forgot to Congratulate you on your over 2 year survivorship. One last thing. What kind of surgery did they do?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Pet Scans

jehagopian.. Although, very lengthy this member established link might help you find another physician you will feel comfortable with.
http://www.cholangiocarcinoma.org/punbb … hp?id=3126
Most likely though, others will chime in real soon and share their thoughts with you also. 
Hugs and love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

10 (edited by eli Sun, 19 Feb 2012 17:20:20)

Re: Pet Scans

Hi JHagopian,

Take a look at this paper:

Diagnostic performance of contrast enhanced CT and 18F-FDG PET/CT in suspicious recurrence of biliary tract cancer after curative resection
http://www.biomedcentral.com/1471-2407/11/188

The research was done in South Korea. CC is more common there than in the Western world.  They have a lot of experience treating CC patients.

They followed up CC patients in remission. When they suspected a recurrence (because of abnormal liver functions, elevated CA19-9 or other symptoms), they compared the performance of PET/CT scan and regular CT scan.

Here's what they found:

Results

Among the 50 patients, 34(68%) were confirmed to have a recurrence. PET/CT showed higher sensitivity (88% vs. 76%, p = 0.16) and accuracy (82% vs. 66%, p = 0.11) for recurrence compared to ceCT, even though the difference was not significant. The positive (86% vs. 74%, p = 0.72) and negative predictive values for recurrence (73% vs. 47%, p = 0.55) were not significantly different between PET/CT and ceCT. However, an additional PET/CT on ceCT significantly improved the sensitivity than did a ceCT alone (94% [32/34] for PET/CT on ceCT vs. 76% [26/34] for ceCT alone, p = 0.03) without increasing the specificity, positive predictive value, and negative predictive value.

Conclusions

18F-FDG PET/CT alone is not more sensitive or specific than ceCT in the detection of recurrent BTC after curative surgery. These results do not reach statistical significance, probably due to the low number of patients. However, an additional 18F-FDG PET/CT on ceCT significantly improves the sensitivity of detecting recurrences.

The way I read it:

* PET/CT scan alone was slightly better than CT scan alone, BUT... the difference was not statistically significant.  Probably because they didn't have enough patients.

* They proved that doing PET/CT *in addition* to regular CT improves detection sensitivity.  In other words, two tests done together reduce the number of "false negatives".

Best wishes,
Eli

P.S. 18F-FDG refers to the contrast solution injected before PET/CT scan.

Re: Pet Scans

Jhagopoian-Welcome and congrats on your success. I too am an almost 3 year CC survivor. I have 3 scans every 6 months. i have an ulta-sound, MRI and CT.
I am sooo glad you asked that question, because I will have my first PET scan tomorrow. I have a small spot on my lung (which they believe is nothing) and want a PET scan before surgery to remove it on Tuesday.
I look forward to reading more of your story. I was treated at Barnes-Jewish Hospital by in St. Louis MO. under Dr. William Chapman.
Marion/Eli-Thanks for all your helpful info.
Lots of prayers for all-Cathy

12 (edited by eli Sun, 19 Feb 2012 17:30:13)

Re: Pet Scans

Cathy,

You mentioned that you have 3 scans every 6 months.  Are they all full-body scans?  Chest, abdomen and pelvis?

Or do they pick and choose? For example, something like this:

CT: full body
MRI: abdomen only
ultra-sound: abdomen only

Best wishes,
Eli

P.S. Please note that I updated my previous post after you posted yours.

Re: Pet Scans

Cathy....good luck tomorrow.
Hugs and love,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

14 (edited by PCL1029 Wed, 04 Sep 2013 13:15:46)

Re: Pet Scans

PCL1029 wrote:

    Hi,  The following is a reprinted message about CT and MRI scan,it may be easier and of value to those new members who try to search for this info if I duplicated it here again.

    Ultrasound (US)of the liver or abdominal area provide the most inexpensive way to check on the hepatobiliary system.It is of great value too when it is used intraoperatively to detect tumors that the liver surgeon cannot see with his/her naked eyes during  surgery.But its result is  depended on the person who performs the US as well as the interpretation of the image; when the US result is inconclusive,CT scan or MRI is recommended.

    Cat Scan is for diagnosis purpose.(including initial diagnosis and follow up after resection or chemo treatment for CC.  Both MRI and Cat Scan are used to look for structural changes.PET scan is used to look for functional changes(activity) of  the CC.
    According to one study compared  20 intrahepatic patients images ,the extent of the  tumor enhancement was similar with both MRI and CT methods,however  the relationship of the tumor to the vessels and surrounding organs was more easily evaluated on CT scan as opposed to MRI.But for perihilar tumors CT also has limited sensitivity for extra regional nodal disease(ie metastases to the periaortic,pericaval or celiac artery lymph nodes.)---from uptodate .com.

    (My own experience told me that MRI with contrast is  a good "follow-up" alternative to use right  after initial CT with contrast shown inconclusive report in the early stages of CC development .Using MRI or PET to rule out recurrence or give the patient an early and more options to treat the recurrence while the CC is smaller than 2-3cm.MRI can also find additional  small lesions which CAT SCAN missed.

    I will recommend PET scan right after  CAT or MRI if recurrence  is confirmed  or small lesions detected by MRI but not sure whether they are cancerous or not.This will give the doctor more info about the lesion  such as whether the lesion has metastasized or give the doctor a more informed and EARLIER  idea  what he/she saw on the M R I or CAT scan indeed is a tumor that has metabolic activity(maxSUV) value and required immediate attention such as chemo therapy or resection,RFA,chemoembolization,PDT, SBRT,IRE and radioembrolization.(see beloww link in the cholangiocarcinoma section)

http://www.ajronline.org/doi/full/10.2214/AJR.11.6995

   By doing so,the doctors will not be confused with and discard the lesion as being part of the artery or hepatic vein or other forms of lesions and ask the patient to return in 3 months to repeat the scans to make sure.As you all know, 3months is a lot of valuable time for patients as well as caregivers. Who wants to wait for another three months?  I think this is the part of early detection that we,ourselves, can monitor and provide the early benefit of  more treatment options to the patient.

    PET can find or confirm cancer  metastasized activities in the other parts of the body.PET may not be a good choice to locate NEARBY  and DISTANT metastasized cancer activity such as the lymph nodes that are very close to the primary site of CC because the closest distances between the lymph nodes and other distant organs such as lung,ovary etc.

    PET Scan allows visualization of CC because of the high glucose uptake(SUV) of the bile duct epithelium(the lining )-- the "Hot spots" will light up on the PET scan and show the relative cancer activity of the lesion by the SUVmax value.

    A PET scan  therefore can  help to tell if the bile duct obstruction is caused by a cancer or benign lesions.PET scan can  be useful in determining the cancer may have  spread or return after treatment.
    In general SUVmax value>3.9 is an indication of cancer activity of the lesion while value<3.9 may not.But the diagnosis must also be made in conjunction with the size or the volume  of the lesion that shows the SUV max activity.(the SUVmax range that I saw so far is between 2.0-36.4 in CC);and PET is more accurate when using in intrahepatic lesions than extrahepatic lesions in cholangiocarcinoma diagnosis.(SUVmax values is different from organs and other parts of the body;(ie:the SUVmax>2.5 in lung mass may be indication of metastasis.)

    Some hospitals equiped with machine that  is able to perform both A PET and CT scan at the same time(PET/CT scan) ;this allows the radiologist to compare areas of higher  radioactivity on the PET with the appearance of the that area on the Cat scan. But  according to the radiologist I talk to , A (PET/CT scan ) is not the SAME as if you take them SEPARATELY;(PET/CT scan is PET plus CT scan WITHOUT contrast).

    Remember Ct scan is for STRUCTURAL (ie: the size) and PET is for FUNCTIONAL (activity) visualization of the lesion. That is why sometimes doctors order a PET scan on this 3 month checkup and on the next checkup, he/she orders a CAT Scan with contrast or MRI instead.

    The current recommendation from NCCN in the States for extrahepatic and intrahepatic cholangiocarcinoma are the same for resected patients(R0 )with clear margin-for surveillance purposes--consider imaging every 6 months for 2 years.(But based on my personal experience EVERY 3-4MONTH is more realistic and it can provide more early options for treating the recurrence since the sizes and extended involvement of the tumor is still relatively small.It is because in general,the tumor lesion will be double in size every 2-3 months ,some are slower,some are faster in grow. depend on the type of cancer cells.)

    Additional info. from uptodate.com
    MRI and CAT SCAN (CT)  have similar resolution for liver lesions.
    CT has been considered to be superior to MRI for evaluating extrahepatic organs and calcifications. MRI is more specific than CT for differentiating cavernous hemangiomas,diffuse hepatic steatosis and focal fatty infiltration.
    Also MRI should be reserved for the evaluation of lesions less than 2 cm,or lesions located adjacent to the heart or to major intrahepatic vessels.
    If you are allergic to the IV  iodinated contrast agent used for CT,then MRI is the alternative because the contrast agent used is different than CT. and MRI is not involved  radiation .
    I hope the above info. helps.
    God bless;.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Pet Scans

Eli-I have a CT scan of the chest, and MRI and Ultra sound of abdomen. I am a transplant reciepent so I do blood draws every month. I am soooo taken care of and watched!! That is why they are removing spot on my lung, they take no chances and watch and see isn't in ther vocabulary.  Ihave been so blessed in my care.
Lots of prayers-Cathy

Re: Pet Scans

Hi Cathy,

Good luck with your PET scan tomorrow. I will keep my fingers crossed for you and hope for the best possible outcome. Please let us know how it goes for you.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

17 (edited by Jim Wilde Fri, 24 Feb 2012 13:18:45)

Re: Pet Scans

Jhagopoian, nice to hear you have stayed clean.  I've had CT and PET/CT scans.  Over the past year, mostly PET/CT.  Glucose uptake causes cancerous area to light up or illuminate and is very useful in detecting recurrence of cc.  A PET/CT combines most of the benefits of CT with the added cancer illumination of a PET.  A CT only will have somewhat better resolution, however.   The sharp eyed radiologists at NY Presbyterian have been able to see growths as small as 4 mm in my right lung.  I'm having that little sucker removed 3/7/12 @ NY Presbyterian BC it grew to 9 mm as the lung surgeon's take was if it grew, it needs to come out.  These adventures are becoming all to frequent, however.

I live on the Eastern Shore, but had surgery at NY Presbyterian in NYC and all my onc followups are there also.  Let us know where you live, and I'm sure someone will recommend an onc with cc experience.  Mine is great, Abby Seigel at NY Presbyterian, but you may not want to travel to NY.  BTW, in my opinion, you should only see an onc with extensive cc experience for followups.  Too much at risk to do otherwise.

Good luck and welcome.

Cathy, good luck tomorrow!

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm