I've been having some minor side pain in the last couple months, more of a discomfort than pain...I'd give it a 2 out a 1-10 scale. I thought it was a kidney stone but ultrasound ruled it out. I was diagnosed in Jan and did have a full CT scan in April which showed some swollen nodes in my abdomen, but nothing to be concerned about. My GP thinks my new side issues could be nodes or spleen he cant feel and wants me to get another CT scan. I understand CT scans can contribute to secondary cancers down the road so I want to be prudent. I've only had one so perhaps a second wont be too harmful. I am fairly certain my discomfort is from either a slightly swollen spleen or nodes...but who knows. Since I'm 11q del I'm guessing it's the nodes. My bloodwork is stable WBC 16.7 ALC at 10.6 so nothing to be too concerned about for now, but I am reluctant to get another scan. Then again my out of pocket max has been met for the year so it wont cost me anything, but if I wait till next year it will cost around $2,000. Also, I know when my time for treatment comes there will be more scans, more reason to be prudent.... perhaps I'm worrying too much. Your input is appreciated. Thanks.
CT scan or not : I've been having some minor... - CLL Support
CT scan or not
This is a good question.
I am down for a full body CT scan. There is little firm evidence about the impact of CT scan on cancer although as a general proposition there is a link between radiation exposure and cancer risk. This is because the base data sets (either servicemen from the early nuclear trials) or form people around the bomb sites in Japan, are both flawed.
My own impression is that there is no overwhelming link, CT scans have been i use for several decades and if there had been a big surge in cancer cases it would have been noticed (it is being looked at). SO it is a small and probably very small risk, with increasing age making this even smaller. This said we know there is a link between CLL and second cancers (be vigilant) . There is not and is not likely to be sufficient data to define this impact of CT scans (populations are too small).
I am going ahead with my full body scan since we need information not just about my nodes and spleen, but also generally to look for any other possible tumors. I have already had quite a lot of additional radiation (2 cardiac ablations, 2 scans using nuclear medicine, 2 CT scans) set against this I have lived near sea level in a low Radon zone for most of my life.
It might be worth noting that not all CT scans are equal and some centres are developing low dose scans. SO a good question to ask is 'How low a dose of radiation can we achieve on this?' 'Is the scan confined or are you having a good look around?'
I've probably had a dozen scans in the past 5.5 years. I really dread them and try to delay them as much as possible to reduce the overall number of them.
One of my big issues is that I get a nasty headache from "caffeine withdrawal" since you are now supposed to drink coffee on the day of the scan. (If I don't have a morning cup, I get a bad headache.) For this reason, I always try to schedule the earliest appointment available...and head straight for a coffee shop as soon as I bust outta prison (I mean the scan facility).
Right now I am 6 months into taking Imbruvica. My doctor wants me to get a scan asap, but I know that my body is undergoing so many changes in these first 6 months of Ibrutinib, that whatever the scan results are they will not have any significant effect of my treatment. I will still be Ibrutinib every day. I want to wait until my blood work settles down in a few months before getting another scan.
I am NOT, however, suggesting that anyone defy their doctor's suggestions -- but, as we all know, we have to take control of our CLL management with knowledge and dialogue. This site is a great place for sharing information.
How are you doing on Ibrutinib? I may have to start this treatment down the road. Any side effects? Sounds like you are doing well and working so it gives me hope.
BC
I just posted a 6-month Ibrutinib progress report a few hours ago. Here's a link!
There's plenty of reading in previous posts by ThreeWs on this subject here:
healthunlocked.com/cllsuppo...
and here:
healthunlocked.com/cllsuppo...
Leshere , happy reading!
Neil
If you need a scan have it. In my opinion you are worrying too much !
JUST BE CALM AND WAIT.... YOU WILL KNOW WHEN ITS TIME BY THE INTENSITY OF THE PAIN.
WORRIYNG MAKES THE PAIN MORE IMPORTANT
Could be lots of things including IBS. If you are feeling OK see how things pan out before committing to the scan. Have it if you need it.
An alternative chart that I like showing relative doses from various sources. Bottom line if you need one then you should have it but always worth getting the doctor to justify the need. Keep a record of all your scans as your doctor is unlikely to have all your scan history in his records.
You say your GP wants you to have another scan. Are you seeing a CLL specialist, or at least a hem/onc?
If your just seeing a GP I would get an oncologist who specializes in CLL or at least in blood cancers.
My CLL specialist does not use CT scans for diagnosis. He determines stage by exam and blood tests.
I also am 11q deleted, unmutated and I had a full scan at dx. But I also have mycobacterium avium complex (proud that I learned to say and spell this malady but MAC for short) and I see a pulmonologist once yearly for it since I am asymptomatic for that as well as CLL currently. He has me get a CT scan yearly to check on any progress. However I think from this point forward I will ask to avoid that yearly one until if/when symptoms do occur.
garrick
I know every one is different but my CLL Dr at OSU told me CT scans are not the best way to monitor Cll. One CT scan is equivalent to 100 chest x-rays worth of radiation. Unless large nodes start causing to many problems, blood work is the best way to monitor.
for what its worth
Ed
Couldn't you just have an ultrasound garrick? That's what I had for minor spleen area pain and it revealed a slight enlargement. I've had a full CT scan but intend to limit them to the absolutely necessary time.
Newdawn
I had an ultrasound in late Nov which in the report said my spleen was normal size. I wonder if it can still be slightly swollen but not so much that its picked up in the ultrasound. I'm still having some minor discomfort in my side flank area, just under my ribcage, sometimes it's more towards my back which seems to be the same type of discomfort people describe with a swollen spleen. It's not really painful just kind of something odd, kind of like a pulled muscle if that makes sense. Sometimes I don't notice anything at all, so it is puzzling. It doesn't seem like eating affects it which just adds to the mystery. Maybe it's nodes pushing against my stomach or left kidney...?? I meet with Dr. Sharman on the 22nd so I'm going to wait on the CT scan to see what he thinks....I have it scheduled for the 27th so if he thinks I should do it, I'm already scheduled. You mentioned he may have better machines with lower radiation which sounds more appealing. The again he might want a PET scan instead, who knows. I'm looking forward to seeing Dr. S especially just after ASH, but I've found my time is limited with him.....I've got about a 20 minute window to discuss stuff.....so time is short with so many questions and in between he will want to do a little poking around, literally. My bloodwork is still fairly low for now....WBC 16.7K and ALC 10.6 so I don't think it's treatment time yet but I'm worried if this discomfort were to become worse how that would affect my day to day life. If it stays as is, then I suppose I can tolerate it. My LDH was a little higher at 196 which has me a little worried up from around 175 earlier this year, I hope it's not early Richter's....Yikes! I've been reading that with Ibrutinib and other's they are re-thinking the concept of treating earlier....maybe the good Dr will tell me I should start IBR or perhaps get in on a trial for the acalabrutinib. I've read about some other inhibitors he has trials running with also so who knows...maybe....maybe not. Darn CLLL! it's always maybe this or maybe that.
Hi Garrick,
I think you are over thinking things. Unless a CT scan shows some very enlarged nodes and your platelets or haemoglobin drop below 100 (or your relevant units), then I'd be very surprised if treatment was recommended.
LD/LDH can vary considerably from test to test. It can be influenced by how well the blood draw is done - any difficulty taking the blood sample can raise it. Mine vary between 140 and 205 discounting difficult blood draws, which in my case have given results of 224 and 298. If Richters causes LD to rise, it jumps multiple times - I think 5X or more of the normal reading.
Neil
Thanks Neil, there is no question I am overthinking it.... that's just how my brain works. in fact I think that's exactly what Dr Sharman told me on my last visit after my list of 20 questions... he told me to quit overthinking this stuff and I was reading too much crap on the internet, well maybe not in those words but something like that. good info on the LDH that makes me feel better....I'm thinking it's just a slightly swollen spleen that is feeling odd to me, or maybe slightly swollen nodes. I did have a flu shot in October, then had a slight bug go through my house. I also had my immunizations updated a week or so ago....pneumonia, tetanus, t-dap and something else so perhaps my abdomen nodes are swollen because of all that stress on my immune system.... just another theory. I'm going to try to quit stressing and let the experts tell me what they think, I'm very grateful to live so close to Dr Sharman....it takes a lot of stress off having him in my corner.
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