Should I have a baseline CT scan after a CLL diagnosis?

[mamajama]

Diagnosed with CLL 7 months ago. Oncologists told me I have a very good prognosis. Could live my life needing treatment. I have read on this site that a cat scan isn't necessary unless getting close to treatment. The last oncologist wants it done along with more blood work, he wants a baseline line to go on. Any one else have these tests with out needing treatment? Thank you.

[mamajama]

I meant to say live my live without treatment. I am a 64 women.

[Newdawn Administrator]

Hi mamajama,

Recommendations (which I'm sure others will post links to), suggest these scans aren't a totally necessity at this point plus there's the radiation risks to be factored in.

However, I had a CT scan shortly after diagnosis nearly 4 yrs ago and was not close to treatment at that stage. I'm still pre-treated and hope to be for some time. My haematologist also wanted to use it as a baseline and in honesty, I'm glad he did it. It reassured me that I wasn't starting this CLL journey with undiagnosed enlarged nodes, swollen spleen or problematic areas that wouldn't be obvious on physical examination. All was well and I felt the radiation exposure was worth it.

Glad you're doing so well and your prognosis is so good.

Newdawn

[mamajama in reply to Newdawn]

Thank you so much.

[dazed1 in reply to Newdawn]

So true. And for some, the visual evidence slams home the length and breadth of the battle at hand.

[Peggy4]

My oncologist is not keen on scans, fish tests etc...until treatment is looming BUT if I had the opportunity, I would like a base line to work from. Back to my usual chant... I would rather worry about what I know than what I don't know given the chance.

Peggy

[BeckyLUSA]

I too am newly diagnosed, pre treatment. I asked my oncologist at my last visit and he said his professional group (in the US) has come out against doing them in the early stages. Part of me would like to have a baseline done but part of me appreciates not being exposed to the radiation. I love my oncologist so I will not push for it. My only fear is that my dad had multiple cancers when he died. Only 3 years older than I am now. Bone cancer was the first to be discovered in April, found lung cancer in June and he died of a brain tumor in August, all in the same year. I'm glad this group is here to talk about this stuff. When I bring it up with people around me sometimes they say I'm being fatalistic. But I am not. It is just that you do think about these things more when you have been diagnosed. I might pressure him a little more n 3-4 years.

[mamajama in reply to BeckyLUSA]

This CLL is scary...Ive learned ea h case has its own profile....no two alike. I have learned so much from this cite....its put my mind at ease...Thank you for your post. I probably will get the scan. I am more nervous about it then what it may say.!

[BeckyLUSA in reply to mamajama]

Yes, hope it will be clear and will put your mind at ease!!

[AussieNeil Partner Administrator]

I too had a CT scan after diagnosis, but even then (7 years ago), they were rarely done in Australia. As you've read elsewhere, scan use is further reducing such that I think it is fair to say that the top CLL specialists would only do them on diagnosis where there are specific circumstances that warrant their use.

In my case I found having one reassuring - it showed that while I did have a swollen spleen it wasn't as bad as my specialist thought from the physical examination and I didn't have any very large internal nodes.

If you do go ahead and have one, when you discuss your results, do ask whether your specialist's policy is to have them regularly to monitor CLL progression. and state your preference after checking this series of posts:

healthunlocked.com/cllsuppo...

Neil

PS I've changed your title so others that have your question can easily find it and benefit from member's feedback.

[Hidden]

MD Anderson did both CT scan and bone marrow biopsy when I was first diagnosed back in 03. Next one was 2011 when I had both both before and shortly after starting treatment with ibrutinib. Have had both done once a year every since.

My general approach to all health problems is that I would rather know than speculate. I am not at all radiation-phobic. In my younger days I spent a few years crawing through the highly radioactive interiors of US nuclear submarine power plants turning radiatiion detection film badges black, so I have already had many times more radiation exposure than the average person will ever have.

[Hidden in reply to Hidden]

PS. If you have whole torso scans done like mine they also give you a world of information about your spine, heart, arteries, and various importatant internal organs. Good to know.

[MsCLL CLL CURE Hero]

I had my scan when first DX and glad I did. They found bi lateral Renal cell carcinoma. A baseline CT is preventive! Due to the fact we're at risk for secondary cancers. My CLL symptoms saved me from deadly dual DX of silent early stage RCC. Now that's a silver lining! That was six years ago. It was early 5cm and 1 cm. I'm RCC free for six years now with a good prognosis. It will give you piece of mind. I can say they can also show other interesting findings. I wish you the best!

[neurodervish]

You might want to check out CLL Society on the subject of ct scans cllsociety.org/beyond-the-b...

I found the info very useful and was able to call my radiology dept with questions provided on CLL Society site.

One thing to keep in mind is that, as a 64 yr old, your exposure to more ct scans over the next 20 years is likely to be less than it would if you were 30.

Here are questions they offer:

• Does the CT scanner use iterative image reconstruction software?

• Does the CT scanner I will be scanned on have kV modulation? kV stands for kilovolt. (yes, it uses smart MA) The older machines would set the same technique throughout. The newer machine uses the least amt of radiation to get the best picture.

• Does the CT scanner I will be scanned on have mA modulation? The mA stands for milliampere. Note: One of the basic parameters affecting radiation dose for a smaller patient is in the hands of the CT operator adjusting mAs.

• Does the CT scanner I will be scanned on have organ-based modulation? The organ-based modulation capability is particularly important if you are a younger patient or plan on living, secondary cancer free, more than 20 years after scanning. Not all organs are equally sensitive to radiation and the “organ-based modulation” feature insures lowest radiation to the most radiation-sensitive organs, i.e. breast, gonads, eyes, and thyroid.

[deveritt in reply to neurodervish]

Thanks for this detailed information. I'm due to have a scan later this year after pneumonia and - since I'm 13q and still w&w after 4 years - wonder if I should ask for a more complete scam, but only if the above criteria are met…

[Salohcin]

Hi Mamajama, I am also recently diagnosed and as part of that my oncologist recommended a CT scan. I was initially very nervous every about this but I'm glad that I had it done as it gave me reassurance regards the position and small size of my nodes nod as others have said that has given us a base line. It has also discovered that I have a small (as they describe it) abnormality in my right lung. My oncologist is of the opinion that this is nothing to be overly concerned about but has referred it to a chest specialist for a second opinion and I am just waiting his diagnosis. I suppose although it's not what I wanted to hear especially just getting by head around CLL it's better that we know of such things as early as possible.

[Quarry]

As others have said, practices very depending on geography and indeed consultant. I have a base-line CT scan on diagnosis 3.5 years ago. I think it was part of standard DX tests, but it might be that it was done because my spleen was swollen and consultant wanted a baseline for that (FISH in UK is not done until near treatment, mainly because mutations change over time and knowing what you have today does not help!)

Scary? well the procedure is not. Knowing the outcome? I always fell it is better to know what is going on (if helpful, so I am ok with no FISH yet) than living in the dark......but that is a personal decision!

[tekusa]

Hi Mamajama, I am scheduled for a CT Scan and Bone Marrow Biopsy in September 2016. It is for a study I enrolled at NIH. Study of B cell malignancies (shortened). I was diagnosed Nov 2014 and did not have either procedure performed till this study. They want a baseline as you stated. My local oncologist (who is a CLL specialist) didn't like the idea. My other doctor at OSU said the procedures weren't necessary for my condition, but may well contribute to the base of knowledge for the study I entered.

I am not looking forward to either procedure CT Scan with Contrast or the Bone Marrow Biopsy, but I entered the study, and from my involvement I collect better information on my personal condition. Lots of blood testing was done at first visit in March 2016. So getting a baseline is still done at the expert level (NIH).

Tom

[lexie]

Had CT immediately after diagnosis and glad I did as it brought several non CLL issues to light resulting in some surgery. I am watch and wait for CLL.

[kitcat49]

Interesting ! After 17yrs of w&w just getting my first ct scan today and yes ,they say I now need treatment.

[cllady01 Former Volunteer]

Hi Mammajamma:

Your diagnosis sounds very close to mine. I was diagnosed in 2001 @ age of 60 and have not had treatment to-date. I think i had a CT or MRI at the time of diagnosis.

I have had one since also, because of pain experienced on my left side around the spleen. I agree a baseline screening of the quality of a CT or MRI is invaluable.

I have puzzled over the Drs. doing the gross exam and saying my liver was enlarged, then having the MRI report saying it is not. But the pain I had was "most likely" from

one of the many lesions on my spleen. I hope you do well on this journey and can out last any treatment.

[Seven6]

Hi mamajama,

I was not offered a CT scan after diagnosis, over two years ago. I was classed as early CLL and in watch and wait. However, I lost quite a bit of weight so one was suggested recently. It was an easy process, my result were good, and yes they do show up other health issue that may or may not need treatment.

Like Peggy4 I am a person who prefers to know and the results have been a knowledgeable part of my journey.

All the best

Seven6

[NooNoo14]

Hi mamajama

I was diagnosed 6 years ago but a scan has never been suggested. I would have one done as I also prefer to know. I recently had one of my heart (other health issue). I actually appreciated that I had all the information I needed to receive the best treatment.

[AussieNeil Partner Administrator]

I notice that a number of respondents have mentioned that their CT scans have highlighted other possible health issues. This is definitely where having CT scans (or any other screening test) can be a double edged sword. They can highlight matters that many live with without consequence for their entire lives but once identified, may be followed up by the doctor. Because no medical procedure is without risk, the following investigation may actually cause problems later that would never have happened if it wasn't for that baseline scan. Plus there are the costs - financial, worry and inconvenience, etc.

Neil

[Cllcanada Top Poster CURE Hero]

Here is the 2014 ASH...Choosing Wisely advice to oncologists

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

choosingwisely.org/ash-rele...

[pdmw]

I was diagnosed almost four years ago at age 56 (but have probably had CLL closer to 9 years per my Dr.). It took me years to get a proper diagnosis. Once diagnosed, I transferred my care to Seattle Cancer Care Alliance where I had a baseline CT scan shortly after my first appointment with my oncologist. So far I'm still watch & wait and my Dr. said that at my next annual visit we can discuss whether I have a follow up CT this fall after my annual blood work. I have been Rai stage 0 because my counts have been consistently low but I have a high number of enlarged lymphnodes.

[donmelton]

I was diagnosed two months ago, but told they missed signals and that I have had it for a few years. Baylor College of Medicine is having me do a Contrast CT tomorrow to see where all cancer might be. Have been through all the blood test types and this will determine next course of action. We know my spleen is enlarged. This all has come quickly.

[Newdawn Administrator in reply to donmelton]

Welcome donmelton as I see this is your first post since you joined the site.

I hope your CT goes well and that you receive reassuring baseline information. So many of us know or suspect we had CLL for many years before actual diagnosis.

Try not to view it as ‘seeing where all the cancer might be’ as this isn’t like solid tumours where they’re looking for possible other sites. Enlarged nodes and spleen are simply manifestations of the CLL and where it migrates.

You may wish to start your own post to introduce yourself as this is an old post you’ve responded to and may not be picked up by members.

Please let us know how things go.

Best wishes,

Newdawn