For last 3-4 weeks I feel inflammation and some pain in my back bone and around shoulder bones. My doctor dismissed any chance of another cancer like bone cancer and told that it could be due to stress/tension. What I understand he discouraged CT scan and told it may trigger up cells which wre not very active right now.
I wonder isn't it possible for a CLL patient to have bone cancer as secondary? Also, CT scan is really dangerous for CLL patients?
We are fortunate to have a very detailed series of information relating to CT Scans from ThreeW on here but it is fairly technical with many updates;
healthunlocked.com/cllsuppo...
I would say AA that bone pain particularly in the shoulder/back area does seem to feature as an issue for a number of CLL'ers often with a variety of causes so I wouldn't immediately be jumping to conclusions about bone cancer. The obvious concern about swollen lymph nodes impacting and causing pain is one we should consider. I've recently had an ultrasound on my abdominal area which obviously doesn't carry the same radiation risks but in terms of detailed analysis, CT and MRI scans are usually necessary.
I had a CT scan at diagnosis which established a 'baseline' but certainly wouldn't want regular CT scans because of the radiation risk.
Are your calcium levels ok and do you have any history of arthritis? It could be that tension is increasing pain in the shoulder area but if it persists and you continue to be worried, see your physician again for further exploration. Gentle exercise and movement may help especially water based.
Newdawn
AAli, your doctor is most likely right in that it is probably nothing to worry about. You also need to remember that inflammation can take longer to subside when we have CLL, because inflammation is an immune response to tissue damage or infection and CLL affects our immune response. How an individual is affected depends on both the individual and their stage with CLL - we are all different.
I can appreciate that you are concerned that the inflammation and pain are still there after nearly a month. Remember that your back is a very complex structure and it is fairly common for recovery from injury to take some time. That recovery time will lengthen if you stay tensed too, (which is natural to do because you are trying to protect your self from more pain), because staying tensed reduces blood flow to the area and the inflammation needs to drain away via the blood and lymphatic systems.
There's a multipart series on CT scans on this site, commencing with this post:
healthunlocked.com/cllsuppo...
As you will read, because we are more at risk from secondary cancers, it is best to minimise our exposure to CT scans - just as your doctor suggested. That said, if your back pain worsens, or isn't getting better in a few more weeks, you should go back to your doctor and perhaps get a second opinion if you are really concerned.
Neil
Hi Neil, your urgent response requested.
Just a quick question that last night I felt sort of swelling at back of my skull (lower right close to ear). It is a bit painful hen I press it. I am not sure it is swollen lymph node? Should I wait for few days or immediately consult doctor? My weight is consistent and also no temperature or night sweat issue is there.
Regards
I agree with Chris - get it checked and ask your doctor if it could be a complication from your CLL.
Neil
Why not just go get an MRI. No radiation involved and it will show if you have significant internal swelling. Don't know about where you live but in the US they are expensive if your insurance pays for them but cheap if you pay personally in cash on day of service. I had 2 done that way a year or so ago when I was having knee and ankle trouble because the orthopedic docs -- one of whom is a nationally recognized knee specialist -- where just taking X-rays and were not getting the problems solved. Once I shoved the MRI disks under their noses they both said "Oh .... I missed that ....").
FWIW, I had CT scans every 3 months for a year plus when I started on ibrutinib, and whole torso CT scans once of year since then as part of the clinical trial I'm in. Have probably had 15~20 in my life. Before that in my younger days I spent 2 years as a nuclear engineer with the US Navy crawling around super hot reactor compartments turning film badges black. Hasn't killed me yet at age 72. Radiation exposure is a risk I'll gladly take if it helps solve some other health problem I have.
Thanks for guidance
I checked here MRI is available but they are asking MRI of which region/part is needed?
This is where you need assistance from a doctor or much better still, your CLL specialist. While you know you want the swelling at the back of your skull near your ear checked and possibly your back, what you don't know is what type of scan would be best to check the most likely causes and whether you need any contrasting dyes or other techniques with your scan to identify or discount the various possibilities.
Neil
I have had the same experience with my drug trial. I have ct scans every 3 months for two years and before that it was once a year for the past ten years. I expressed concern over the exposure risk, but if you want to participate in the trial you have to allow the scans.
The bumpy journey of a relapsed CLL with a weird and confusing chest CT scan
Bone loss, due to any CLL treatments?
CLL/SLL and bone pain was in both arms
chronic coughing and scaring lesion on lungs of CLL patients
