Finally went for update on my CT Scan - CLL Support Assoc...

CLL Support Association
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Finally went for update on my CT Scan

For those who remember back in October I ran from my Doctors office prior yo receiving my CT Scan results.

Today I went back and found out all is perfect with spleen and lympnodes. My labs today were all excellent today. God is awesome.

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Glad you went Landwell and even more glad that the results are so good! All is looking positive for you which is excellent news!

Newdawn

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Positive news. Long may it last for you. Peggy

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Great news!!!!!!!!!,God bless!!!!!!

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Well done for picking up the courage to bite the bullet!

Just goes to show that fear of the unknown is a powerful negative affect yet the outcomes are normally never as bad as we fear!

As I said before we all have to live with this condition and learn that it should not define us as people!

Your results are fabulous and you can now get on with life building up the resilience needed to deal with cll.

Great news! I couldn't be more pleased for you!

Geoff

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Thank you Geoff. The craziest thing is what scared me the most about the ct scan is the tech performing the test stated they would see a tumor in your colon with this test. Then my mind wondered and I thought, "OMG, colon cancer, I can't deal with two cancers". Of course it was just a reference he was providing me and not referring to my case. So now at least a I know that my spleen and lymphodes are normal size and my white blood cell count is normal and has remained that way for 10 months. This is a scary deck to be dealt but it could be a lot worse. I am a thousands times different person than I was prior to this diagnosis and in every way a better person. I enjoy and appreciate life as I never have before. Wishing all on this site the best. I do not write often but I read this forum daily and love to read the positives.

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Pleased to hear this!

One thing I would say though ct scans are not recommend these days by many specialists in cll.

They believe that these are not necessary unless it is suspected that richters or other complications are present.

However, if you are being put on a trial they are given for baseline records during the trials and for records of progression as proof of trial data.

Top cll specialists in the States discussed this on video recently.

Onclive.com

Anyway keep the positive vibes going

Wishing you well.

Geoff

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I read this about the CT scan. I will not allow any more at this point. My Hemotolgist is very positive which is great but if things start to change or my CLL gets aggressive I will see about switching over to the CLL expert in the group prior to treatment. I am happy to know my starting levels on everything. I am anticipating great things in treatment over the next 5 years.

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Actually PET scans are used for Richter's... CTscans might be combined...

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Did you have any treatment? it looks like your new to cll, but you stated bloodwork normal, ct scan normal so why did they say you have cll. If im missing something please know im sorry. I was just wondering? I'm very happy for you...Be well.

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No treatment, found accidentally because elevated B count. I was being treated for other matter when discovered. My uncle passed away at 77 with CLL of other natural causes he had CLL for years and treatment was never Necassary.

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So pleased after anxiety there is a good outcome. I had a CT scan a couple of weeks ago and how your felt went through my thoughts, I experienced something of what you were possibly feeling. My results will be given to me next Thursday.

All the best

Seven6

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God luck with your results, I'm sure you will receive positive news.

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Thanks for your support. I'll keep in touch

Seven6

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Great news!! best wishes,Pumpkin

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Hello All,

I had CT's of my abdomen, chest, and neck this past Friday, March 11. Lymph nodes in neck are new; Dr. says they are small. Chest was done as I have not had a CT for over a year and being watched are two nodes. Abdomen CT to check to see if any nodes are large (so many in that area). I hate CT's and I do them without contrast. My thought is why put radioactive dye into blood that is already diseased. A little nervous and will get results in about three days. Still feeling good even though my lymph number is increasing slowly. Will let you know that all is well (my hope) as soon as I get results. Carole

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Carole,

Do the Doctors complain about the lack of contrast? I hate them too and especially the IV, as I am a bad stick. πŸ’‰

Jeff

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Hi Jeff,

Chris called my attention to some misinformation I posted about contrast. It is iodine and you probably saw her info to you on that. I haven't had any doctor tell me I absolutely had to have contrast.

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Sorry ladyprescott

You are misinformed... the contrasts used in CTscans are not radioactive. They are iodine which is infused and you drink the barium...

The scan itself is using ionizing radiation...so you get about 20 milliseverts in a full body CTscan... but it varies on the age of machine and software they run...

Gamma radioactive tracers are used in other scans, like a MUGA scan for the heart... they stay in the body for a few days and set off metal detectors at the airport... πŸ˜†

MUGA

hcahamilton.com/muga-scan

CTscans

fda.gov/Radiation-EmittingP...

MRI is a non-radioactive image technology, that is available to some, but it is poor at looking at nodes and you still have an IV contrast tracer...

~chris

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Chris,

Is the iodine essential to view the nodes?

Jeff

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Much higher detail, you can see the blood flow... veins, arteries etc... essential... I don't know...

They like to use a major vein in the arm for the infusion... sometimes after 4 attempts they use my hand... but last time it blew the vein and I was showered with contrast... 🚿🚿🚿

Lots of brusing..took weeks to dissipate...

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Hi Chris and thank you for calling attention to my misinformation. I feel it's bad enough that I have to have the CT's let alone anything being injected into my blood. To me, less is more and if they can get a good read without it I will keep doing it that way. Carole

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I would be far more concerned about the radiation exposure you receive from a CTscan, than the contrast, which is fairly benign...

Everything about various contrasts... can be found here

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

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Chris,

There is the πŸ’‰πŸ’‰πŸ’‰πŸ’‰πŸ’‰πŸ’‰πŸ’‰πŸ’‰πŸ’‰πŸ’‰πŸ’‰πŸ’‰πŸ’‰πŸ’‰ sticks to consider. I'm s coward.

Jeff

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Hello Chris,

Believe me, if I could have had a MRI to have the same results I would have. Seems CT is what shows the best images for what they're looking at in me. I also checked on contrast and found it to be something other than what I thought. Some people do have reactions to the dye, but for the most part is fine and leaves the body quickly. Thanks for the link. Carole

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I alway request Mucomyst...prevents kidney damage... think I'm up to 23 CTscans and a couple of PETs...

mskcc.org/cancer-care/patie...

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I think I've had three CT's since 2012. Haven't had a PET. My doctor seems to think every six months is okay. I don't, but then I never want them. Has been over a year this time. Seems there should be another way since it is radiation that we would like to avoid. Should get my results this week. What do you know about dental x-rays and x-rays on other parts of the body as with me with my rotator cuff issue where x-rays were done?

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The new Choosing Wisely guidelines for CTscans has been out over a year it recommened no routine CTscans in asymptomatic CLL, obviously if you have symptoms it is another matter...

I think you might need to mention it to your doctor...

American Society of Hematology

Released December 3, 2014

Don’t perform baseline or routine surveillance computed tomography (CT) scans in patients with asymptomatic, early-stage chronic lymphocytic leukemia (CLL).

In patients with asymptomatic, early-stage CLL, baseline and routine surveillance CT scans do not improve survival and are not necessary to stage or prognosticate patients. CT scans expose patients to small doses of radiation, can detect incidental findings that are not clinically relevant but lead to further investigations and are costly.

For asymptomatic patients with early-stage CLL, clinical staging and blood monitoring is recommended over CT scans.

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I did not know about this, however, I am being watched for a couple of nodes that are growing. What do you do in a situation like that? MRI would be my choice, but does not give info needed by my physician. Feel like I caught between a rock and, well, you know. Carole

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There is another way as espoused in the interview with top CLL specialists you replied to earlier: healthunlocked.com/cllsuppo...

As you can see, you are right to be concerned about excessive CT scans. I almost replied earlier and I'm glad Chris did, because he has the same concerns as me. (I thought from what you said that perhaps your oncologist may have concerns about the position of a couple of abdominal nodes. Do ask if this is the case and if so, can you avoid regular scans by being informed of what likely symptoms you should watch for that could be caused from those nodes of concern pressing on nerves or blood vessels.)

There's a multi-part series by WWW on CT scans that will tell you everything you want to know and more commencing with this post: healthunlocked.com/cllsuppo...

Perhaps you should also reconsider the value of seeing a CLL specialist occasionally that can provide guidance to your more accessible local oncologist?

Neil

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Hi Neil,

Is there a way to go private message with another (you) on this site. I would like to talk to you about your reply, however, some of what I have to say I don't want to be public. Thank you for your reply and please let me know on the private messaging. Carole

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How to View and Send Private Messages:

support.healthunlocked.com/...

support.healthunlocked.com/...

Neil

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Neil. Is there an option to send a photo with a private message? I know you can do it with a post. Peggy

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Unfortunately, you can't add attachments or include photos with Private Messages, Peggy. I'd like that feature too...

Neil

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Thanks Neil for taking the time to Answer. Hoping all's good with your health now. Peggy

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Carol, hoping for the best results you can get. Feeling well is great, but sometimes difficult with this very strange disease. You have a great attitude. Best wishes to you and all.

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