C T Scan

[Richie0619]

Should CLL patients with has been diagnosed with Stage 0 after Fish , Flow test ..should they be exposed to radiation like C T Scan , Pet Scan etc. to further diagnose at such a low Stage ?

[Cllcanada Top Poster CURE Hero]

PET scans have only one place in CLL...@ suspected transformation. CTscans generally early on are not recommended, but may prove useful prior to and perhaps after treatment...

~chris

[JoyfulJessica]

Good question. I've already had 1 CT scan on my neck, 1 ultrasound of my neck, and am having CT scans on my pelvis/abdomen and chest tomorrow morning and I'm not sure why I need any of it. I am in the process of being diagnosed, but the Flow Test seems pretty positive as far as I can tell.

[MsLockYourPosts Passed Volunteer in reply to JoyfulJessica]

The flow test should rule CLL in or out. Some doctors like baseline CT scans for new patients, especially if there are problem lymph nodes. As you've found a specialist I would work with him on ant further testing.

[JoyfulJessica in reply to MsLockYourPosts]

Thank you! Yes, one of the reasons I've sought out this specialist is because my current hem-onc isn't convinced of CLL even though the Flow Cytometry indicated CLL. She thinks I'm too young so is ordering more tests and aan excisional lymph node biopsy.

I'm not going to do the biopsy until I speak with the specialist to determine if it's really necessary.

[MsLockYourPosts Passed Volunteer in reply to JoyfulJessica]

Since you are changing doctors anyway, it makes sense to be able to take your scan results, and let him decide whether a biopsy is needed, and based on the scans, which node to use if the scans show others.

[JoyfulJessica in reply to MsLockYourPosts]

Yes, that is my plan exactly! I really appreciate that feedback and confirmation as I find these decisions overwhelming at times! I did have the pelvis/abdomen and chest scans this morning so that is done. I think I am getting a reprieve from appointments and tests until Sept 4th, which feels like a miracle after a month of constant hospital visits and doctor's exams.

[ladyprescott in reply to JoyfulJessica]

Hi Jessica,

I want to say that my reply was my opinion only. We are all at different stages in this disease and what I said should not be used for reference in all cases. Please take it as such. Thanks. Carole

[2004CLL in reply to JoyfulJessica]

A bone marrow biopsy is typical, and way less invasive then lymph node removal. I'm not aware of any CLL Specialist / hematologist that would order a lymph node removed for biopsy. My local Dr. was scheduling me for one when I was initially DX in 2004, on getting a second opinion from a CLL specialist at Scripps in San Diego he put a halt to that procedure. I went on for a another consultation at the Mayo in Minnesota where they ordered a BMB. The typical tests were performed, FISH, Zap 70 & CD38...etc.. In 2005 back in San Diego at UCSD, I received my first treatment with FCR. I have had many BMB's since prior too, during, and after various treatments over the years. The BMB is the proverbial gold standard for an extensive look at the results of treatment, and disease progression. If I had a choice of surgery to remove a node or a needle stuck in my back bone, I would pick the needle all day every day! Best of luck to you!

[MsLockYourPosts Passed Volunteer in reply to 2004CLL]

Hematologists do sometimes order a lymph node biopsy for an SLL presentation (lymph node) of CLL, but a Flow Cytometry done with blood is normally sufficient to make the diagnosis unless there are irregularities in the results. A BMB would not normally be needed.

[2004CLL in reply to JoyfulJessica]

I was remised to mention that flow cytometry from a simple blood draw is suffice to DX CLL. Best Regards!

[ladyprescott in reply to JoyfulJessica]

It's probably too late, but you don't need all that radiation and possible contrast material in your body. I have sworn off CT's and get MRI's without contrast now. When I look back at my med records, I've had 9 CT's since 2013 including three like you're having. No more.

[JoyfulJessica in reply to JoyfulJessica]

Thank you all for your comments. I really appreciate them, and I'm sorry for hijacking this thread a little! It's so comforting to hear from others' experiences!

[Hidden]

CT scans expose the patient to significant radiation. See FDA page radiologyinfo.org/en/info.c...

A full body CT with PET is about 27mSv exposure.

For comparison, the dose limit to an embryo/fetus during the entire pregnancy due to occupational exposure of a declared pregnant woman is 500 millirem (5 mSv).

I have elected to use MRI instead. Hard for oncologist to read, but is read by radiologist and I do not have the radiation exposure. There are PET/MRI scans available, I found a machine at UCSF for my pet scan.

[SeymourB]

I had an abdominal CT early on 7 years ago to establish a baseline for the size of lymph nodes the hemo/onc could not palpate. My blood numbers were pretty low, and the rate of change was slow.

Due to unusual blood results, I had another abdominal CT this spring. It showed that some of my nodes are now a little larger, but not abnormally so. But some thickening showed up in the jejunum, and I had a biopsy done later for that that was inconclusive for any specific diagnosis. I am not so afraid of contrasts. I've never had trouble with iodine, so I haven't had to try gadolinium. I've had barium without immediate problem, either. I think alternative medical practitioners overblow the risks of contrasts in general, but specific ones have specific issues. Often we don't get to find out until they give us the contrast to drink, or begin an infusion. So ask about it as far ahead as possible.

radiologyinfo.org/en/info.c...

en.wikipedia.org/wiki/Radio...

We should fear radiation. Certainly, annual, full body scans are a bad idea for us. But I think occasional, especially local CTs or X-rays are not so bad. If you live in a mountainous area with granite rock, you may be getting much more radiation from the rock around you over time:

epa.gov/radiation/radiation...

Also note that the safety figures for annual radiation exposure are intended for the general population that can repair cell damage at normal rates. It simply doesn't apply to us. But there's not yet good dosage advice for each kind of mutation and stage we have.

Also, remember that those most in danger from radiation are probably also most in need of imaging. So always ask if an MRI without contrast or an ultrasound would do instead.

=seymour=