Sharp pains in Spleen

[umpireman]

I have been experiencing sharp pains in my spleen. These occur in the middle of the night after I roll over following a sound sleep. I see my oncologist on Monday. What questions to ask?

[Ironj]

I have a pain on my right side as well lower to mid back that radiates to my abdomen at about Low to mid section mostly at night when I’m bed. It’s more of a dull ache. I don’t think it’s in the area of my spleen but I’m not really sure where I would feel the pain

[Newdawn Administrator in reply to Ironj]

That sounds more gallbladder related J because the pain from the spleen is found more on the left side under the rib area. Pain from the gallbladder/pancreas can radiate to the back and particularly between the shoulder blades and is found on the right side usually. I’d thought you’d had scans which would have picked up spleen issues? Of course your diverticulitis may be to blame too.

Mention it to your doctor because of course only he/she can diagnose. Reducing fatty food helped me when I had gallbladder issues.

Newdawn

[Ironj in reply to Newdawn]

Hello Newdawn

Sorry I made a mistake the dull ache is on my left side. I had a Ct done about 5 weeks ago and nothing was abnormal. In fact the swollen lymph nodes that were on all my previous scans didn’t show up on this last scan. I had I believe 5 CT scans in 2018 and 1 Pet scan in October they all showers the 2 lymph nodes were stale in size. Now this last one showed no swollen nodes. I talked to local oncologist about this and explained to him that I thought once there swollen they don’t go down. He said yes they can go back to normal size , I was shocked to hear this, is that your understanding that they can go back to normal ? If so where or what happens to the cancer cells that caused the enlarged nodes ? I didn’t ask my Dr this as it was a quick phone call but I see him in about a week and a half.

[Newdawn Administrator in reply to Ironj]

My honest advice John is that’s an awful lot of CT scans to monitor what sounds like a pretty unremarkable presentation. I’ve had 3 CT scans over 7 yrs and the last one was necessary for the trial I’m on. I hate having to have them due to the radiation risk.

It’s not really necessary to be ‘chasing’ the progress of a couple of mildly enlarged internal nodes unless they’re impeding a major organ or function. They clearly do wax and wane and in your case return to normal.

I’d be more inclined towards ultrasound to keep an eye on the spleen but at the moment that’s not even a concern for you.

I’d honestly be insisting that CT scans and especially a Pet scan was reserved for strong identifiable clinical need.

Having 5 in one year plus a Pet Scan seems pretty excessive when you’re at such a low level on your CLL journey.

Best Wishes,

Newdawn

[Ironj in reply to Newdawn]

I agree with you a 100 %. The first 3 Cat scans were for the diverticulitis the the 2 others were for the nodes.

Then after my diagnosis I seen Dr Mato he said we will have to keep an eye on the pace of your SLL with scans because the Blood work won’t show us the whole picture. That’s when he said I want you to have a Pet Scan done. Like you and Neil said it’s to many scans and again I agree. But Dr Mato didn’t seem concerned at all. The one I had a month ago was to check for diverticulitis again. I’m so tired and fearing the Drs wanting scans to check my SLL or if I have pains in my abdomen check to see if my diverticulitis is an issue. The scan I had last month showed that everything was good and normal in size now I’m having this dull ache in my mid to lower back that I can feel in my mid to lower abdomen a few weeks after the scan. Could my spleen have no problem and in a few weeks have a problem? I’m afraid to tell my local oncologist when I see him that I have this ache because he will want a scan and if he does I will tell him I want an ultrasound. Thank you Newdawn and Neil.

John

[AussieNeil Administrator in reply to Ironj]

Hi John

CLL cells can redistribute to other nodes, the spleen, the bone marrow and of course into the blood circulation.

I agree with Newdawn about the number of scans you are having appearing excessive. I've had just one in 10 years and even that's more than is usual in Australia.

Neil

[Ironj in reply to AussieNeil]

Hello Neil thank you for your advice.

John

[ezabella in reply to AussieNeil]

It's worrying me to hear that a single scan in 10 years is more than usual in Australia 😓 as I've been having a CT every 8 months since 3 years (I am from Australia), diagnosed 4 yrs; still W&W. Number & frequency of scanning vary among patients; of course it depends on every CLL's patterns or behaviour, I feel my CLL is highly risky as it's inflirting in liver, spleen & lymph nodes. I got swollen nodes at the front and back of my neck and along the left shoulder (that's scary to me).

Ezabella

[AussieNeil Administrator in reply to ezabella]

Provided you are seeing a specialist who sees lots of CLL patients, perhaps your degree of scanning is appropriate, given your risk factors. I think it is fair to say that specialists who don't see many CLL patients tend to overuse CT scans. Specialists who have a large proportion of CLL patients have a better feel for how their patients are doing without resorting to CT scans and bone marrow biopsies other than in circumstances where it is not clear even to them what might be happening.

Neil

[Newdawn Administrator]

Ask for an ultrasound to assess the size and condition of your spleen umpireman. Your oncologist may not be able to palpate the spleen on examination but it still needs assessing if you’re experiencing pain. I suffered the same prior to treatment as my spleen was pretty enlarged.

Best wishes,

Newdawn

[umpireman in reply to Newdawn]

Thanks Newdawn: It is definitely my spleen. As you said, it is located on the left side under the rib cage. Thanks for the suggestion of an ultrasound. I am sure my oncologist will investigate with some palpate on the spleen which I am not looking forward to. John, the umpireman.

[AnneHill in reply to umpireman]

I am having an ultrasound on Thursday to look at my spleen. I had a ct scan last June and this is to avoid more radiation.

Dr can pulpate my spleen. Not painful. I get pain. Sometimes its just a short stabbing pain but at times it is more painful.

Anne

[umpireman in reply to AnneHill]

My symptoms exactly!! I know more after my doctor visit tomorrow and will let you know. John, the umpireman.

[umpireman in reply to AnneHill]

Wouldn't you know it, when I visited the doctors office on Monday, she could not identify any swelling in my spleen. I have not had an recurrence of pain in the spleen in a week, so I guess it was one of those unexplainable things that the body works up temporarily. John, the umpireman

[AnneHill in reply to umpireman]

Its hard to know what causes this pain. I know my spleen is enlarged but not by how much. We are always expecting to be told we need treatment and we go mentally prepared. When we are told numbers ok for now it is an anti climax.

I dont want treatment but neither do I want to be the way I am now.

I hope you stay pain free, Anne

[Ironj in reply to Newdawn]

Thank you for the advise Newdawn

[aussiemummy]

Hi John, I have a slightly enlarged spleen and have intermittent pain just as you described. Sometimes it is very painful and very annoying. However, my oncologist has stated that an enlarged does not cause pain. I will be interested to hear what your Dr. says.

[umpireman in reply to aussiemummy]

I am going to my oncologist office tomorrow, but I see his PA. Hope she will have the answer. Will let you know. John

[aussiemummy in reply to umpireman]

Great, thank you!

[Ironj in reply to aussiemummy]

I will definitely post once I see him. Thank you for sharing what you Dr has said and I hope you feel better.

John