I had a CT Scan of abdomen and pelvis done on 11-1-19 after being sent to the hospital twice and Urgent Care 3 times for Pyelonephritis. I never looked at the results of the CT scan as on last visit with that primary care doctor for this only told to follow up for CT scan in 3 month and would discuss everything on follow visit after CT scan. In the mean time I have had to change providers (now seeing a primary PA) as my health insurance changed. I pulled my CT scan and notes from my last provider to follow up with this new provider when I noticed what I thought to be several very concerning things that literally freaked me out. 1.) Lung base: Small atelectatic changes to both lungs. 2.) Osseous structures: Faintly visualized calcific density 9.6 mm in the posterior right iliac bone of the pelvis which may represent benign bone island however patient has cancer history follow up with bone scan. 3.) Mild fatty infiltration adjacent to falciform ligament. 4.) Spleen unremarkable (good) 6.) Pancrease: Visualized aspect unremarkable. 7.) Adrenal glands: slightly nodular otherwise unremarkable 8.) Kidneys: Small cyst right size 5 mm and several likely cysts in left kidney largest one 3.2 cm. states to follow up for stability. 9.) Bladder. limited evaluation due to under distention. When I pulled last medical record from doctor showed diagnoses of pyelonephritis as primary, multiple renal cysts, bone lesion, pneumonits, PV, OSA. Here's the thing. the renal cysts, bone lision and pneumonits is what concerned me as they are new and it may appear from what I see that the cyst may have grown. Prior doctor scheduled CT scan but I cancelled due to insurance change. The new PA wants to refer to kidney doctor instead of CT scan. If needed will do an ultrasound instead but depends on what kidney doctor says. She also wants me to follow up with Oncologist for the posterior right iliac bone of the pelvis or I assume what is the bone lesion. I also noted that when I was originally diagnosed with PV in 2017 I had an Ultrasound of the abdomen to check my spleen in which it showed 'a simple left renal cyst measuring 28 mm but never mentioned follow up for stability. What I can see this one may have grown. I know we are not doctors but I know this site has given me a lot of information when needed asked or not asked so any information given would be greatly appreciated! Thanks and again so for being so long.
CT Scan of Abdomen cause for concern: I had a CT... - MPN Voice
CT Scan of Abdomen cause for concern
There is a lot of detail in your posting but little that is directly relevant to your PV.
It appears that the CT scan identified a number of issues/ concerns that you've not yet discussed with your doctors. That should be your next step.
Thanks for your reply
Wow Alex. So much jargon that I don’t understand. Like applesnpears suggested, there are many different things here. Please find a good doctor, educate yourself as much as possible regarding the info you’ve received and do not wait. I always push for appts. ASAP.
Make sure you write down everything you are learning. Especially important are your questions. Get yourself coached on internet. Ask ‘which questions should I ask my doctor when...” try to get a good website. Good information and knowledge are empowerment. Get clarity.
Also, I’ve learned to never wait for doctors to oversee my case, they are mostly overburdened and have little time. Follow up, as in your case may not have been ideal, mistakes can also happen. It’s important to form a good relationship, with a good line of communication with your practitioner
Go for it and let us know. Cheers and have a productive day.
Anag
Thanks for your post! I have pushed up my appointment with with hematologist for next week. I am also being referred to a kidney doctor in the next week or so. You are very correct in that my follow up was not ideal which I have learned from. I have a dear friend of mine that is going through the same thing in which I told them to make sure they got there CT report. Thanks again for the information!
Way to go Alex! You sound so much stronger than yesterday. I’m so glad. Anag 🙂
Thank you!
Please don’t forget to try to get your doctors communicating with one another. Really important in case you need an operation and to coordinate treatment! 👍
Hi Alex. That's the trouble with CD scans, they show everything up whether cause for concern or not. I had 2 recently and one showed gallstones (no symptons), and liver cysts which are normal. The 2nd one showed area of fatty liver which does need checking. So I shouldn't worry too much about kidney cyst although as you say it has grown. I have some as well.
I have ET jak 2+ and am waiting for bmb results.
Wishing you good health.
Hi Alex, you need to ask your doctor to explain all of this to you. Maz
That is a lot going on. I would suggest looking in to more information about the development of secondary cancers that is known to accompany PV. Also look into the link between disruption of the JAK-STAT pathway and inflammation in the body. Sometimes there is a link between seemingly unrelated conditions. Sometimes the conditions are truly unrelated. Sometimes unrelated conditions can still impact each other as it is all happening inside of one body.
Hope you get it all sorted out ASAP.
Thank you for your post and the information given especially between the disruption of the JAK-STAT pathway and inflammation as it seems like everywhere I turn inflammation may be involved. I would never have even considered secondary cancers to PV. I am definitely aware that these may be unrelated. Thanks again!!
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