1. < Digestive Health

Any experience with multiple cysts in multiple locations?

Posted by kawred @kawred, 3 days ago

Hi,

I recently had a CT scan with contrast to check for appendicitis (which they couldn’t rule out due to it not being fully visualized and the distal end possibly being inflamed) and learned that I have multiple cysts on my liver (which I first learned about a year ago) but the largest is now 6.5 cm (it was about 5.5 cm a year ago), and I also have multiple “subcentimeter cysts or hemangiomas” on my spleen. The CT scan also showed ovarian cysts and cervical cysts. The splenic cysts/hemangiomas is new info to me - I also already knew about the ovarian and cervical cysts, but they seem to be growing. I had also been diagnosed within the last year with tarlov cysts in my lumbar spinal area and multiple spinal hemangiomas. I have a long history of ganglion cysts that I had removed in my hands.

I am a little freaked out and trying hard not to be since I have been reassured everything is benign. I have been told by my doctor - either my primary care, gyn or orthopedic doctors that these cysts are no big deal, but now with cysts or hemangiomas on my spleen also, I am really wondering what is going on! Part of me feels like since they are all different systems, that no one but me is wondering if it’s all connected in some way or what. Do some people just grow benign cysts all over?

After the CT scan, my doctor referred me to a gastroenterologist for the liver and spleen cysts and to go back to my gyn (mine just retired so waiting to see someone new.) My appointments aren’t for a couple of months. And the gastroenterologist appointment is with a NP since the only doctor there they would have matched me with just retired. The NP is going to meet with me to figure out a plan of who I could maybe see (there aren’t a lot of specialists in my area).

Meanwhile, I continue to feel nauseous just about all the time, sometimes it’s worse and I can’t eat, sometimes it’s not so bad and I can eat fine and I just feel nauseous while eating. I am not one to get nauseous historically. I feel pressure in my the upper right of my abdomen - all of the time. I feel a weird pinching often in that area. Sometimes I have sharper pain (take your breath away pain). I also have an ache and sometimes sharp pain on the right side of my upper back. And sometimes sharp pain in the lower right, near where the appendix is - which is what led to that CT scan 2 weeks ago. I have had these pains/pressure/ache off and on to a milder degree for a long time but I always dismissed it. I had a bad spell with sciatica and back pain last year which is how these other cysts were discovered.

But now the pain and discomfort can’t be dismissed any more as it is constant and wakes me up at night. I am exhausted. I just don’t feel right.

So - at this point, I am trying to take it day by day and take care of myself. No one seems to think any of this is urgent as the scans don’t indicate cancer. And I am grateful for that and I do take comfort in the lack of urgency. But then l, no one really seems to know what to do with me or what doctor I should see. Are there any specialists or teams that look at all these systems together?

Any suggestions on who to see? What to do? What to read? I don’t want to wait months to see someone for them to say, “eh, I can’t help you, maybe try that doctor next.”

It may help to share that I am 51 years old, and have always been in very good health.

Thanks for any input or insight. And especially thanks for reading all of this.

Interested in more discussions like this? Go to the Digestive Health Support Group.

dbamos1945 | @dbamos1945 | 2 days ago

@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)

REPLY
2 replies
part | @part | 2 days ago

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.

REPLY
1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | 2 days ago

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.

REPLY
1 reply
kawred | @kawred | 1 day ago
In reply to @dbamos1945 "@kawred: hi! I wish I would have found answers sooner. I don’t mean to alarm you,..." + (show)
@dbamos1945

@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)

Jump to this post

@dbamos1945 Thank you! I really appreciate you sharing your journey with me! And I truly appreciate the encouragement to not be satisfied with the “not to worry” attitude. I needed to hear that. I have felt so dismissed lately, even when just asking questions to understand what is being shared with me, and also being shot down when I asked for a referral to a teaching hospital an hour away from my home. I will keep reading and learning and asking and advocating. Thank you so much for your time and supportive response. I wish you all the best with your ongoing healing and healthy living!

REPLY
kawred | @kawred | 1 day ago
In reply to @part "Sounds like a difficult situation. I would be calling GI office to be put on cancellation..." + (show)
@part

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.

Jump to this post

@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.

REPLY
1 reply
kawred | @kawred | 1 day ago
In reply to @lisalucier "Tagging @rvan8890 @selene43 @amywood20 @webby149 @iowachica @drdolen @peggysheppard @pachab00 @erikaclark who have mentioned cysts in the..." + (show)
@lisalucier

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.

Jump to this post

@lisalucier Thank you so much!

REPLY
part | @part | 1 day ago
In reply to @kawred "@part thank you for all the suggestions! Excellent points that are so helpful. I called today..." + (show)
@kawred

@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.

Jump to this post

Glad it was helpful. It was a lot of information so glad it wasn't too overwhelming. The answer from every MD office is to go to ER if it gets worse. I find it very disingenuous. I don't check this board daily but hope you get some answers sooner rather than later. Also I retired 5 years ago so I hope I am still up-to-date enough to give right advice to navigate crazy health care

REPLY
sunshine29 | @sunshine29 | 1 day ago
In reply to @dbamos1945 "@kawred: hi! I wish I would have found answers sooner. I don’t mean to alarm you,..." + (show)
@dbamos1945

@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)

Jump to this post

I just had ultrasound & MRI of my kidneys & liver & have small cysts on both. However, can’t meet w hepatologust to discuss options until May 15. I guess they think it isn’t urgent, but I already have a total colectomy, so would like to have info sooner rather than later. Can’t believe it takes so long to get an appt w specialists these days!

REPLY
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