1. < Blood Cancers & Disorders

Splenic Cyst

Posted by stew201 @stew201, Jul 15, 2011

After having a CT scan with contrast for a post op mass, an unrelated 11cm cyst was found incidentally on my spleen. This finding has perplexed my primary physician and the hematologist that I was going to be referred to (I have an HMO). I am awaiting bloodwork to determine if the cyst is parasitic, but beyond that, I'm just told to take a wait and see approach if it's not parasitic. Does anyone have any experience with a splenic cyst? Isn't a mass that large on such a small organ dangerous?

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Colleen Young, Connect Director | @colleenyoung | Sep 25, 2022
In reply to @julianamoon "Hi Everyone. I went to my PCP in May 2021 because I had 2 lumps on..." + (show)
@julianamoon

Hi Everyone.
I went to my PCP in May 2021 because I had 2 lumps on my upper left abdomen, and would get excruciating pain there. Felt like someone kicked me there with steel toed cowboy boots and burned me with a hot poker at the same time.
He sent me for an abdominal CT scan and other unrelated tests and told me to come back in 3 months. A week later, I called his office and talked to his nurse. I told her "This pain is awful. Can you find out what my CT scan showed?" So, she asked my PCP and he said the CT scan was normal. I said "Well what should I do? I can hardly walk?" She said to go to University of TN Emergency. Great! I had no way to get there as I live 1.5 hours away. I decided to just stay in bed. After a few days the pain subsided and I chalked it up to something I ate. I had the same pain on and off the last year and a half but kept chalking it up to something I ate.
Fast forward to July 2022. I am having terrible shortness of breath. I go to PCP and he orders a CT Scan for PE. I go back for results. He says lungs and heart are fine. Lungs are clear. Says I have a slight decrease in kidney function. Refers me to Pulmonary Specialist and Urologist. The lung Dr he referred me to is the same one I went to 4 years ago when I was trying to find out why, after a very severe bout with the flu/bronchitis, I could no longer get out of bed. I had a zillion symptoms and went to 2 cardiologists, ENT, Gastroenterologist, Pulmonary Specialist, and even a Psychiatrist, (because my PCP didn't think I was suffering from anything but being crazy I guess). Every test came back normal. I was eventually diagnosed with ME/CFS. Back to my spleen.
The lung Dr informed me that 4 years ago they found a 3-4 mm spot on my lung. I was flabbergasted!! He said we need to do another CT Scan of my lungs. Long story short...I had to go to the records dept. of the hospital my PCP had CT scan done 2 mos. earlier and get CD of scan and diagnostic report for lung Dr. My PCP forgot to send them with referral.
When I read the diagnostic report, I was shocked at what it said. Not only had part of my lower right lung lobe collapsed, but I had a 3 cm cyst on my spleen!!
He said everything was normal. 4 years ago the lung Dr. said everything was normal.
Now, years later, I find out I had a spot in my right lower lobe, a cyst on my spleen and a partially collapsed lung and neither Dr. mentioned it to me!!
So, while I wait for my Oct.4th appt at lung Dr, crying and convinced it's Stage 4 cancer by now, I decided to look up the spleen on my cyst, (I mean cyst on my spleen), and see what thats all about.
Boy...am I confused!! And it sounds like most Drs are confused as well after reading your stories.
I am shocked at the state of our healthcare systems and the lack of knowledge about spleen cysts. The communication issues between Drs, radiologists and patients as well.
How are we supposed to trust our Drs if they are clueless, or in my case, hide the truth from me?
So, in 5/2021 my spleen cyst was 3 cm. Any suggestions on the best way to handle this? I am guessing another abdominal CT scan is in order and than ask my PCP to refer me to whom??? A hematologist?? Gastroenterologist?? Oncologist??
Any suggestions or direction would be greatly appreciated. Thanks!!

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@julianamoon, you and your doctors have got things in motion now. That's good. I know that it's easy to leap to the worst case scenario. It may not be. And it's possible that the cyst on the spleen has not grown. Cysts of the spleen are often benign splenic masses. They are typically asymptomatic, but may enlarge and become painful. There are two types of cysts: true cysts and pseudocysts. Pseudocysts are much more common, representing 80% of all splenic cysts.

As you get ready for your upcoming appointment with the lung specialist, you might appreciate the tips members share in this discussion:
- Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

I might also suggest starting a file (electronic or paper) of all your test, reports, etc. Did your PCP suggest further imaging of the spleen or a referral?

REPLY
1 reply
julianamoon | @julianamoon | Sep 25, 2022
In reply to @colleenyoung "@julianamoon, you and your doctors have got things in motion now. That's good. I know that..." + (show)
@colleenyoung

@julianamoon, you and your doctors have got things in motion now. That's good. I know that it's easy to leap to the worst case scenario. It may not be. And it's possible that the cyst on the spleen has not grown. Cysts of the spleen are often benign splenic masses. They are typically asymptomatic, but may enlarge and become painful. There are two types of cysts: true cysts and pseudocysts. Pseudocysts are much more common, representing 80% of all splenic cysts.

As you get ready for your upcoming appointment with the lung specialist, you might appreciate the tips members share in this discussion:
- Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

I might also suggest starting a file (electronic or paper) of all your test, reports, etc. Did your PCP suggest further imaging of the spleen or a referral?

Jump to this post

Hi Colleen,

My PCP never mentioned the cyst on my spleen. It was in the diagnostic report from May 2021 and that's how I found out. They included those findings with the diagnostic tests we went and got 2 weeks ago. He never mentioned the partial collapse of my right lower lobe either, even though I asked a lot of questions about any scarring, bronchial airway obstruction, etc. My breathing is so bad I can't walk across the house without sitting down. I have a history of asthma. When I saw lung Dr. 4 years ago, he said he found no evidence of COPD. But he failed to mention the 3-4 mm spot in my lower right lobe.
From now on I will get copies of diagnostic tests and labs from any Drs I see.
I have been trying to move back to Michigan for 3.5 years to go to U of M Medical Ctr. because I felt my PCP was blowing off my concerns like I was a hysterical woman. He has made comments to me that humiliate me. I started bringing my companion in the exam room with me and my PCP still says humiliating things to me. But when you live in a rural area, there aren't many other providers around that are taking new patients. I'de prefer a woman but there just aren't any around here.
Thankyou so much. I appreciate your reply.

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