MRI or CT Scan: I'm in the process of qualify... - CLL Support

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MRI or CT Scan

CLLnewbie profile image
28 Replies

I'm in the process of qualify for a clinical trial, the schedule says CT scan or MRI. My oncologist told me MRIs are only used if a CT scan is contraindicated. This is in the U.S. and seems backwards to me. MRIs should be standard to reduce radiation exposure. Anyone know why it is this way?

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28 Replies
HailMary-USA profile image
HailMary-USA

Hi Newbie.

MRI’s are almost double the cost of CT scans;

take much longer to perform;

and have a longer wait time for appointments due to greater scarcity of equipment.

I’m no expert, just sharing what I’ve learned.

Best of luck to you,

Mary

CLLnewbie profile image
CLLnewbie in reply to HailMary-USA

Thank you Mary. Although when a pro athlete needs an MRI there's no hesitation or delay. Money talks....

CLLnewbie profile image
CLLnewbie in reply to CLLnewbie

The increased use of CT has also attracted interest in the risks of radiation-induced cancer that are associated with frequent CT scans [11,12]. Brenner et al. reported that 1.5–2.0% of all cancers in the United States may be attributable to CT-related radiation.

ncbi.nlm.nih.gov/pmc/articl....

AussieNeil profile image
AussieNeilAdministrator

This is what the relevant section of the iWCLL guidelines says:-

"In clinical trials where the treatment intent is to maximize the overall response rate, neck, chest, abdominal, and pelvic CT scans are recommended to evaluate the response to therapy.

One CT scan should be performed before the start of therapy and a second CT scan at the final response assessment (usually

3.5.2.3. Other imaging methods. Except in patients with proven or suspected Richter transformation, positron emission tomography (PET) scans do not provide information that is useful in the management of CLL.86Similarly, nuclear magnetic resonance imaging generally does not provide useful information beyond that of CT scanning in the management of CLL and therefore is not recommended outside of clinical trials.3.5.2.4. Ultrasound imaging. In some countries, ultrasound imaging is used to assess the extent of lymphadenopathy and organomegaly in CLL. Although ultrasound imaging may be very useful in the clinical management of individual patients, the results obtained by this methodology are investigator-dependent and difficult to centrally verify. Therefore, ultrasound imaging is currently not recommended for response evaluation in clinical trials."

There's an excellent article on the CLL Society site, which states with respect to MRIs, similarly to what HailMary-USA said:-

"Magnetic resonance imaging (MRI) poses no radiation risk and often provides invaluable diagnostic information for many disorders. In CLL however, added benefit as compared to CT alone is extremely limited. Some of the other major disadvantages include: being the most expensive; being less readily available; being contraindicated for individuals with certain metal implants; and for patients prone to claustrophobia, it requires the individual to remain still in a small tube chamber for an extended period time, potentially up to 30-45 mins."

cllsociety.org/2017/12/the-...

Neil

CLLnewbie profile image
CLLnewbie in reply to AussieNeil

Thanks AussieNell, Good, information. Kind of confirms my thoughts that MRIs aren't the first choice due cost even though there is no radiation exposure. I have no metal implants and I'm not claustrophobic.

CLLnewbie profile image
CLLnewbie in reply to CLLnewbie

The increased use of CT has also attracted interest in the risks of radiation-induced cancer that are associated with frequent CT scans [11,12]. Brenner et al. reported that 1.5–2.0% of all cancers in the United States may be attributable to CT-related radiation.

ncbi.nlm.nih.gov/pmc/articl....

AussieNeil profile image
AussieNeilAdministrator in reply to CLLnewbie

CLL specialists nowadays discourage the use of CT scans for monitoring of CLL progression:- choosingwisely.org/clinicia...

There's a place for them when you have the SLL expression of CLL/SLL, where it's difficult to otherwise assess the tumour burden, but they most tend to be used by oncologists who don't have much experience in managing CLL patients. Worryingly, I've seen such patients reporting annual or even more frequent CT scans!

With respect to your reference, do keep in mind that the risk of developing secondary cancers from CT scan radiation will be higher for those who have scans earlier in their lives.

Neil

PoisonDwarf profile image
PoisonDwarf in reply to AussieNeil

Hi Neil,

Not all CT scanners are equal. Chest CT’s whereI am, are low dose CT. I have an annual CT scan for lung cancer screening, the 3 nodules in my lungs are 2mm. Like grains of rice. The devil is in the detail, in more ways than one! The lymph node progression of my SLL is an incidental finding, with no palpable lymph nodes. The LDCT studies I have read and the accepted view here is they pose little to zero risk. A risk/ benefit analysis of early malignancy detection v risks of radiation come down in favour of regular screening for me. I have to accept that like the very nature of CLL/SLL it is very individualized.

AussieNeil profile image
AussieNeilAdministrator in reply to PoisonDwarf

Prof Terry Hamblin made a similar point in his address to the Canadian CLLPAG in 2009, noting that you need higher X-ray intensity for an abdominal vs a lung X-ray, because air filled lungs are much easier to penetrate than the abdominal organs. More specifically to CT scans, your radiation exposure is indeed less with more modern machines with updated firmware and software. ThreeWs exhaustively reviews this in his multipart posts on this topic, starting here:healthunlocked.com/cllsuppo...

Neil

PoisonDwarf profile image
PoisonDwarf in reply to AussieNeil

Thanks Neil, in more ways than one! My comfort level is good with the risk/benefit analysis of scans, given the ‘high risk’ labels I have for other cancers. This just confirms my belief that I need to ask my doctor for a referral to the Lymphoma clinic, and the SLL specialists rather than remain with my current hematologist. I’m lucky my bloods are good and while it shows progression, I’m a long way from treatment. I will have a clearer picture after my next CT. I don’t believe the lymph nodes are problematic size wise, but their locations feel like that tiny stone inside your shoe. I think I’ll have a T-shirt made: Dr. I’m not neurotic … 😂

janvog profile image
janvog in reply to AussieNeil

I just had both CT and MRI. CT after I had abdominal pain which showed in the CT at the hospital emergency as severe constipation: Caused by iron in FolivanPlusCap to normal my hgb. (Works perfectly for the hgb but requieres counter-measure with daily Colace and prune juice and psyllium fiber). But the CT also showed "fluid accumulation encapseled near liver". The MRI confirmed the fluid, plus found a cyst on the pancreas. From the start I suspected that a recent fall on my right back , after sliding out of the recliner, would cause an internal injury. I informed the gastro specialist and he also suspects both as result of the injury. This also appears quite clearly in the pertinent literature. The gastro specialist suspects that the fluid will disappear. But I have to repeat the MRI in six month. The MRI was a mobile unit attached to the building of the radiology center. This MRI was not too hard and easier then the space-flight tube MRI twenty years ago.

Poodle2 profile image
Poodle2

When I was diagnosed, I was 7 months pregnant and I guess that was the reason they wanted to make sure there wasn't anything sinister going on in my body apart from the blood. I had an MRI (because of the pregnancy) but the imaging wasn't sufficient (not sure why, don't remember, it was all a bit of a haze then) so I also had to have a CT up to my chest (because of the pregnancy, wore some protective stuff, don't remember much either)...so yes, you can have an MRI but it wouldn't have been the doctor's first choice if it wasn't for the fact that I was pregnant.

CLLnewbie profile image
CLLnewbie in reply to Poodle2

How did everything go Poodle2, how old is your child now?

My previous oncologist wanted me to get a CT scan and only gave "getting a baseline" as the reason. That's the reason he's my previous oncologist besides communicating nothing to me about my condition.

My new oncologist who is an actual CLL specialist says it's time to begin treatment and wants to rule out a Richter Transformation so also ordered a PET scan.

Aussie Niel, I'm pushing 70 so maybe I'm worrying too much about radiation. The CT scans are required for the clinical trial although the schedule does say CT or MRI scans

Poodle2 profile image
Poodle2 in reply to CLLnewbie

Well, the pregnancy was fine, you wouldn't know I was sick and I didn't feel sick then either. My little boy will be 3 in September (our third child).

I have just started treatment and I did have a baseline CT scan before I started so I'm assuming there will be one at the end as well.

I also had an ultrasound to check my enlarged spleen recently so there are lots of options available but it depends what and why you need to check.

Yalokin profile image
Yalokin

In addition to Neil, I will say that it really is an adventure to get an MRI if you are a little fuller.

I have had big problems. You might be interested to know if there is an open MRI in the area where you live. They are much less common, but they are the only solution for obese and claustrophobic people. They are also much quieter. (because they have a weaker magnetic field). This is the type of resonance for me, fat, with claustrophobia.

If you are going to make a scanner, it is good to inquire about a low-dose scanner. These scanners make 640 slices with one rotation, which separately allows them a resolution of the order of 0.4 mm.

I don't know if you have a choice though.

Debnurse profile image
Debnurse

Go with MRI, more indepth unless you have metal or a pacemaker. If you are Medicare, cost is not the issue unless you have an HMO. GOOD LUCK.

CLLnewbie profile image
CLLnewbie in reply to Debnurse

Thanks, I'll see if I have a choice. I am on Medicare with a supplemental plan so no HMO.

dandelup profile image
dandelup

In the Uk I was given a ct scan , they injected a fluid into me to make the images clearer , I can’t think what the fluid was but it made me really unwell, so I then had a mri scan which was ok unless you are claustrophobic , I am now back to ct scans but with no infusion . So might be advisable to ask if you need the infusion, also ct scans are much quicker to complete

AussieNeil profile image
AussieNeilAdministrator in reply to dandelup

The contrast die improves the scan image, but unfortunately some do react to it. As you found, the CT scan can be done without it.

Neil

thompsonellen profile image
thompsonellen

I am enrolled in a clinical trial (LP-168) that requires a huge amount of CT scanning. I had a CT monthly for the first three months (4 including pre-trial scan) and now quarterly. Needless to say, I am not thrilled by it, but at all stages of this game, you need to consider your options, and this trial was the best option for me (even though I feel like it's putting me at risk of having other problems). PS I did develop contract reactions, so now I need to pre-medicate with steroids and Benadryl.

CLLnewbie profile image
CLLnewbie in reply to thompsonellen

That's a lot of CT scans, I hope you're doing good now.

Dahlia7 profile image
Dahlia7

I opted for MRIs rather that CTs in my previous study. It required 3 MRIs to replace one CT. The MRIs had to be performed once daily with contrast on 3 consecutive days every 2 months. I had 27 MRIs on that study. It was a lot of catheters and time in a tube. I’m glad I did it and that they approved it but it was not an easy replacement for CT. Good Luck. Tony

Big_Dee profile image
Big_Dee

Hello CLLnewbie

I would do anything to eliminate CT scan exposure. I had complete blood workup for cardio angiogram which included a nuclear cardio stress test, rather than inclined treadmill test because the nurse thought I walked differently. Whereas I can not prove it, my blood workup did not show any signs of CLL, yet 6 months later I was diagnosed with CLL after having night sweats. I have asked on occasion of having CT scan that contrast die not be used. The CT scan operator refused to do scan without contrast die. Wish you best. Blessings.

CLLnewbie profile image
CLLnewbie in reply to Big_Dee

At this point I'm going to do a PET scan plus a CT scan. They want to make sure I qualify for a clinical trial and also to make sure my CLL hasn't transformed to a lymphoma. I'll try to force the issue for subsequent scans, so I'll have the option for MRIs. Thanks for your reply Big_Dee, how are you doing now?

Big_Dee profile image
Big_Dee in reply to CLLnewbie

Hello CLLnewbie

I am doing all right, starting to relapse, so looking at treatment options. Blessings.

Yalokin profile image
Yalokin

I want to point out that at least 48 hours before CT with iodine contrast, you should stop taking metformin (for those who take it).

This rule is not communicated in all places. They did not pay attention to me during the last scan either. And I take mertformin. Otherwise, they ask about allergic reactions and do a test on the hand with the contrast for a reaction.

I didn't even know about metformin. That's why I spent 1/4 of my life reading to protect myself from the mistakes and ignorance of doctors.

Everything is on a conveyor belt, there are many sick people.

After an examination with contrast, you should drink at least 2-3 liters of water to eliminate it through the kidneys. That's what they say.

CLLnewbie profile image
CLLnewbie in reply to Yalokin

Thanks for the information, I'm not currently on anything but they don't even mention mertformin in the so called "special instructions".

CLLnewbie profile image
CLLnewbie

I had a PET scan followed by a CT scan this morning. The barium solution for the PET wasn't bad, had a choice of artificial vanilla or artificial banana and I chose vanilla. Breakfast of champions.

The first attempt at the PET scan didn't go well. They had me in an arms above head position and it became painful after a few minutes. I called for help and had to start over which probably exposed me to more radiation. Next attempt with arms at my side, they lock you up in a straight jacket which is euphemistically call "support". Second attempt went better, then got contrast through an IV and fortunately have had no allergic reaction. Arms still locked at my side go the CT scan.

Drinking lots of water to flush the contrast. I have another CT scan Thursday and all these scans will help determine if I qualify for a clinical trial.

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