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!!