Should I only depend on this test

Polyana

Hi,

I met with my doctor for my follow up after the 1st 3 month are done. Upon physical examination all seemd good and fine, he ordered the blood test for CBC and CA 27.29. He told me if your CA is normal we wont need to do your PET/CT scan. My questions are:

1. Can I depend on this test for accuracy? I mean if it came normal does that mean I do not have desease progression, or it can not detect this at early stages?

2. What is PET/CT scan I use to hear PET or CT only but PET/CT what is it. If my blood work is normal can this scan show anything else?

3. I am thinking of doing an U/S instead for the abdomen, can it give indications of anything

4. My liver function test came normal. My doctors told me if you had any disease in the liver it would have shown in your LFT? From your experience what do you think.

My doctor is someone with great experience, very confident, and he has a strong reputaion. Yet my doctor at the radiation thinks the opposite that I MUST do a PET/CT scan and that blood work is not an indicator!! what are your comments here..

NancyD

I can only answer to the PET/CT question. As it sounds, it is a combination of both PET and CT scans. Because each one has a different level of sensitivity, and "sees" your body mass slightly differently, when then are run together they help diagnose more accurately.



A PET measures the uptake of sugar, which can be absorbed by organs for many reasons, but the one your dr is interested in is possible cancer leision or tumor. These wil "light up" on the film proportional to the sugar uptake and can be measured and compared to previous PET scans.



A CT scan takes special XRays and tomographic scans, and builds a more 3D picture of the body mass by imaging slices of the body. These allow the drs to see more internal structure of a suspicious area to determine if it is cancerous.



Combined, they give a better picture.

NancyD

I had several PET/CT scans during the course of my active treatment and reconstruction, but now that I'm just on hormonal-therapy, my onc just does bloodwork. However, if I report suspicious symptoms, we'll go to a PET/CT for clarification/verification.

Polyana

so does your onco do you the CA27.29? or other kind of test..

thanks for the note regarding PET/CT, I am thinking of doing one, but afraid of the procedure itself. I am clusterphobic and afraid from being in the intravenous room alone and going into the machine, let alone other fears tagged to this procedure

SpecialK

CA27/29 are notoriously unreliable and can be affected by inflammation anywhere in the body - cancer related or not.  Many MO do not use them for that reason.  I have had 2 PET scans - I was given an IV injection (IV did not stay in after the injection), drink something and wait for an hour or so, and my scan was done in an open scanner, claustrophobia not a problem.

karen4u

I have CT and Bones Scans done every 6 months.  I was 3 years out and she had decided after my next scans I would go to yearly scans.  That's when my liver mets were diagnosed.  I am not trying to alarm you by any means but my bloodwork NEVER correlated with my cancer either time my cancer was active.  My tumor markers were always normal and she doesn't even do them now and when my liver cancer was found, ALL my liver function tests were normal.  The only time I ever had a PET was when my mets was diagnosed.  From my understanding they are pretty pricey but I didn't have any problems with being claustrophobic.  MRIs are worse to me.  As I said, I'm not trying to scare you but I don't recommend just CBC and tumor marker tests alone however, I think that the norm is to wait 6 months after initial treatment is finished.      

SpecialK

I had a baseline (before beginning chemo, but after surgery) PET and then another when chemo was done.  I had a normal CA27/29 prior to chemo and an elevated one after!  MO chalked the abnormal result up to inflammation from chemo, repeated it 2 weeks later and it dropped but was slightly above high-normal.  He said clear scan trumps abnormal lab.

Polyana

Karen4u but did you have symptoms at all!!

I talked to my onco yesterday, and I told him that I don't want to have any regrets later on for not doing my PET/CT scan. He still believes that upon physical exam, blood work and my overall health there is no need to do it. He told me doctors do it when you have symptoms and complian. Truely I want to do them but scared they will hit me with an unexpected bad news...

karen4u

Polyana - No symptoms that alerted me to having a possible recurrence. 

NancyD

Polyana, I had my scans before, during, and after active treatment. My last one, almost two years ago, was in prep for my reconstruction. I wanted to make sure things were still NED.



All along, my onc has been doing CA27.29 bloodwork. It was slightly elevated once, but went back down. I've heard that tumor flare, as the chemo kills off the tumor, can make the numbers rise, so it wouldn't be terribly reliable at that time. But it's one of several tools the oncs have, and for some patients, it is reliable. They just never know which one until something shows up.

NancyD

P, I also want to say, I found the PET/CT much easier than an MRI. My radiologist's MRI has a narrow tube. The CT scanner was more open and not as long, so I had no claustro symptoms like I did with an MRI. And the noises from the PET/CT are not as bad as the ones from an MRI.



The hardest part was drinking the sucrose liquid. They try to flavor it, but it still is icky. They had me sit in a room with lowered lighting, wrapped in warm sheets, and silence, all to keep my metabolism down. In order to drink all the liquid, I daydreamed that I was resting on a Carribean island, with a rum punch drink. Next time, I will bring a little umbrella favor to make it seem more real, lol.

Oh, and having to hold your pee was hard. Because the shot they give is a radioactive isotope, if you have an "accident" they have to take your clothes. So if you have a tendancy towards a weak or small bladder, bring a change with you.

sflow

Oh, yuck--I forgot about that drink and bladder issue.  I have one scheduled for Sept 13th--last one was 4 1/2 yrs ago when I was diagnosed.  I will try to think about that tropical beach so I can get that lousy drink down LOL. 

Polyana

Thanks Nancy D, You know what the only worry I have is staying in that room all by myself...is there any chance I can ask for my husband to be with me...I fear being alone in strange places...

NancyD

P, different places have different policies. Basically, they want you to stay calm and relaxed, so if having your husband with you does that, then let them know. Thinking about that now, having someone there, giving me a foot massage, would have lowered my stress level to 0, lol.

sandilee

They allowed my husband to sit in the room with me when I had my bone scan. 

And yes, I think you're smart not to wait for symptoms before checking for mets or progression. I don't know if you need it this soon, but I would do it a year out, anyway.  Many people have no symptoms with their mets.  I wish I had insisted on a scan- either PET or MRI- every year after my diagnosis.