Any experience with multiple cysts in multiple locations?

@kawred: hi! I wish I would have found answers sooner. I don’t mean to alarm you, but feel you should learn my story to help you be persistent in your medical decisions. Your symptoms of multiple cysts are similar to my medical journey. I’ve been seen by many specialists and oncology consultants seeking a reasonable resolution to these cysts (liver, kidney, gallbladder, etc) which result in MD reply to me “some people are suspect for multiple cysts. All the MD’s said “There is no cure. Just live your life”.
Then when I started to have uncontrollable diarrhea for two years I sought solution! After multiple normal tests and unsuccessful medications, I finally got CT scan revealing abnormalities that led me to a good gastroenterologist. He performed endoscopy and took several biopsies. One of the biopsy locations near the small intestine/duodenum was suspicious and the biopsy revealed Neuroendocrine Carcinoma Tumor Cancer (NET); even 2nd opinion from Pathologists revealed same diagnosis! The formations thought to be cysts in my liver were also identified to be NET that had metastasized from the small intestine primary tumor. This was three years ago.
I have successfully received treatments that have reduced tumor size and I have a pretty good quality of life today. NET has usually very slow progression and there are many treatments available to relieve symptoms. Oncologists specializing in NET have some remarkable treatment solutions to control tumor stability.
I tell you my saga so you won’t be satisfied with the “not to worry” medical suggestion about cysts. If I would have gone to gastroenterologist for endoscopy sooner perhaps I could have alleviated liver metastasis and been able to have the primary tumor successfully surgically removed.
Too late for me… but you can be smarter and more informed than me. I wish you a long, healthy life! I hope your cysts are just fluid filled sacs that resolve on their own and cause you no trouble.
If I can be of help in future please reach out to me. Bette (dbamos1945)

Sounds like a difficult situation. I would be calling GI office to be put on cancellation list for NP or MD at their office. If there is particularly bad weather in your area, call the office the next day to see if last minute cancellation. I assume you are weighing yourself, if you begin to lose to much weight this could bump you up in the necessity to be seen. Also if you get scheduled for testing with biopsies, be sure to ask about getting moved up if cancellations. In this scenario I would strongly consider contacting a major center that does this research, like Mayo or MD Anderson. There are research nurses at these major centers that might be willing to look at your online records, see the necessity of getting a comprehensive approach sooner rather than later, and get you in. I would start with the neuroendocrine cancer research department. These large best practice centers tend to have a much more streamlined approach. If the large hospital systems are out of reach, then you have to have evidence enough of a reason to be admitted to hospital which could be electrolyte imbalance if there is enough vomiting, diarrhea or lack of ability to eat(typically decided in ER). Other reasons ER may agree to admit is significant intractable pain, weakness to point of a fall, other labs that are way out of whack, any report of change in mental status gets their attention. ERs follow what insurance will allow, insurance is in charge of healthcare, make no mistake there. Once you get into hospital, they will add on testing which is what you need for diagnosis, consult specialists, perhaps a surgery while there. I hope this makes sense. Am retired RN of 40 years. Here is one more idea but expensive- there are "concierge" PCPs out there. You pay $3000-7000 per year but their practice is smaller and they can be wonderful advocates, perhaps smooth your way into the large treatment center. Maybe only need them for 1 year so you can get through the system to diagnosis, plan of treatment and hopefully feel better sooner. I have told friends the hardest situation in your health is when they don't know what is wrong. I have been there before with a cyst in my pancreatic duct and I worked at a hospital. Best of luck to you if this seems overwhelming, perhaps a family member or friend can help get phone numbers or be there on speaker when you reach out. If have any RN friends, call them. One other thing and this is more information gathering but go to clinical trials.gov to see what centers are very active for (suspected) neuroendocrine cancer. I am a cancer survivor, too. Wish I could reach out and give you a hug.

Tagging @rvan8890 @selene43 @amywood20 @webby149 @iowachica @drdolen @peggysheppard @pachab00 @erikaclark who have mentioned cysts in the abdominal area in themselves or a loved one. They may have input for you on the multiple cysts in multiple locations you mentioned you have, @kawred. Please also meet @jawmeyer.

@part thank you for all the suggestions! Excellent points that are so helpful. I called today and leaned the gastro office I was referred to does not have a cancellation list but they were kind to tell me what time of day they tend to get the most cancellation calls and to call every day. I was bad enough to be screened for appendicitis and have that CT but then was told that only if it got worse, to go the the ER - but it isn’t exactly worse. It’s just not better after 3 weeks. I think I will call back and talk to them about that in the morning and ask for guidance. I have tried calling a few places to see who has experience with splenic cysts/masses or multiple cysts in many locations and keep being told “we can’t say unless we get a referral and see your information.” So maybe a wider net or maybe I need to get better at my approach/questions.
Thank you so much for the tips on navigating all of this. I am going to work on getting organized and make some more calls. I’m not aware of concierge PCPs in my area but will see what’s out there.
Again, thank you for the care and time in responding.

@kawred: hi! I wish I would have found answers sooner. I don’t mean to alarm you, but feel you should learn my story to help you be persistent in your medical decisions. Your symptoms of multiple cysts are similar to my medical journey. I’ve been seen by many specialists and oncology consultants seeking a reasonable resolution to these cysts (liver, kidney, gallbladder, etc) which result in MD reply to me “some people are suspect for multiple cysts. All the MD’s said “There is no cure. Just live your life”.
Then when I started to have uncontrollable diarrhea for two years I sought solution! After multiple normal tests and unsuccessful medications, I finally got CT scan revealing abnormalities that led me to a good gastroenterologist. He performed endoscopy and took several biopsies. One of the biopsy locations near the small intestine/duodenum was suspicious and the biopsy revealed Neuroendocrine Carcinoma Tumor Cancer (NET); even 2nd opinion from Pathologists revealed same diagnosis! The formations thought to be cysts in my liver were also identified to be NET that had metastasized from the small intestine primary tumor. This was three years ago.
I have successfully received treatments that have reduced tumor size and I have a pretty good quality of life today. NET has usually very slow progression and there are many treatments available to relieve symptoms. Oncologists specializing in NET have some remarkable treatment solutions to control tumor stability.
I tell you my saga so you won’t be satisfied with the “not to worry” medical suggestion about cysts. If I would have gone to gastroenterologist for endoscopy sooner perhaps I could have alleviated liver metastasis and been able to have the primary tumor successfully surgically removed.
Too late for me… but you can be smarter and more informed than me. I wish you a long, healthy life! I hope your cysts are just fluid filled sacs that resolve on their own and cause you no trouble.
If I can be of help in future please reach out to me. Bette (dbamos1945)

This is beyond frustrating and I know from personal experience. As others have suggested stay vigilant, seek medical care from a major medical teaching hospital if possible, call daily to whatever MD office you need to and remind them you'll take any cancellation appointment and just become like a dog with a bone, as I describe myself. If you have the finances pay for a concierge doctor. After 5 Er visits and 2 hospital stays I finally got a diagnosis. I would not leave the MD office until I was confident that no other diagnostic tests were available to me. Luckily this nice MD listened to me, told me there was one additional test that could be done and that is when I received my diagnosis. Unfortunately we really need to be stewards for our care and keep pushing the practitioners for answers. Good luck to you!