Liver cyst refilling: What questions should I ask?

@tessa152 yes, ALWAYS advocate for yourself. It's OK to get multiple opinions, something many are uncomfortable with. I do so much research whenever I have an issue. My liver doctor here isn't very helpful and doesn't really know much about the disease I have. My kidney doctor is a bit better. I had no idea Mayo had solutions that I couldn't get here. Granted, there is no cure but they can do things to help with comfort and quality of life. I really hope you get the outcome you are hoping for!

@amywood20, Is your polycystic kidney and liver disease under control after this sclerotherapy procedure? I have only met member with polycystic kidney or liver diseases in the transplant discussion group. Do you need any follow-up care or treatment?

@tessa152, You can get your records from the hospital or clinic that performed them. You might even get them from your doctor. A phone call should be enough to find out who or where to go. You will need to sign a release form for them.
As I read your posts, I have a sense that you are being treated for a variety of issues. If so, are the different doctors working in cooperation with each other. And are there any follow-up tests or check-ups for labs, blood pressure, anemia?

@rosemarya the sclerotherapy can only be done in the liver, to my knowledge anyway, and I believe the max they will do at one time are three cysts (and they have to meet a size requirement and be in an appropriate spot). I believe the sclerotherapy is part of a research study at Mayo. I am lucky in that I don't have PKD/PLD as bad as some. It is genetic and nobody in my family has it, not even my twin. They think I have a mutation of it. But, my liver is large and I can't eat large meals without discomfort since the liver and kidneys take up more space than usual and they can crowd things. Hurts when my midsection is pushed on. Locally, I am supposed to see a kidney doc once a year to have blood work checked. The liver doc here doesn't have me come in annually though. Said there's not much he can do and to come back when it starts affecting my quality of life. I actually had two locally liver docs say this. Then I started going to Mayo, which I decided to do once I learned of the sclerotherapy. I've been there for an annual twice now. First time that treatment was done. This past year it was not, as the CT scan didn't show any cysts large enough, which I believe has to do with the study being done. Had I been in a lot of pain I have to wonder if they would have done it on a few cysts anyway. I have an innumerable amount of cysts in the liver and kidneys so there is no way to treat all of them. They could remove part of the liver but I'm not to that point where it's needed. There are medications in clinical trials right now to slow the progression of the disease. There is also one that is being used off-label. It's a monthly injection into each glute that has shown to slow down the growth and even shrink some cysts in the liver. The studies on it were for those with a more severe form of it compared to what I have. The medication can cost approx $10,000 a month and is not covered by insurance since it's not FDA approved for this use. I was able to qualify to get it for free but decided not to take it. Once you stop the injections, the cysts start growing again. There are trials going on right now for a pill version but according to my local kidney doc, I don't qualify for it since I'm not sick enough. The big picture with this disease is that 50% of those with PKD end up on dialysis or needing a kidney transplant by the age of 60.

Mayo is a option I am considering. I need to know what to expect. Traveling for an appointment and getting treatment is that possible for this type of procedure in the Sam strip?

@tessa152 they weren't able to get me in for the sclerotherapy during the first trip. I had to go back a few weeks later. In the Facebook group for polycystic liver disease I believe there is a lady who was able to get it done in the same trip. So much depends on scheduling and how busy they are.

Tessa, here is the contact information for Mayo Clinic and more info about appointments in general. http://mayocl.in/1mtmR63

You'll also find helpful information in the group Visiting Mayo Clinic, in particular these discussions:
- What can I expect at an Evaluation Appointment at Mayo Clinic https://connect.mayoclinic.org/discussion/evaluation-appts/
- Tips for your first Mayo Clinic visit and tests/appt schedules https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/

Often evaluation, testing and even some treatments can be done in the same trip. Another option that may be offered in some instances is an initial virtual visit following by an in-person visit for procedures.

@amywood20, I cannot imagine why your liver or kidney docs are hesitant to keep tabs on you. Why would they even want to wait until the PKD or LKD act up?
I have a liver and a kidney transplant, not from PKD or LKD. But I do know that changes can come quickly, and it is better to be proactive rather that reactive with treatment. I received my liver and kidney in one surgery (simultaneous liver/kidney transplant in 2009, at age of 60)

I am happy for you that you took you went for the sclerotherapy treatment at Mayo. Did Mayo give you any suggested follow-up information for the local doctors?

@rosemarya there's not a lot of proactive things they can do on the medical side since there isn't a treatment that will fix the problem per se. They aren't going to do a resection or transplant until I get to the point that it's needed. There are small things that the medical community knows about the disease that the patient can do, like not taking estrogen, as it can make the cysts grow. I didn't know this before I read about it in a FB group and then had it confirmed during my first trip to Mayo. My PCM, OB/GYN, kidney doc and liver doc never said anything about it and I was on hormone replacement therapy for three years which had estrogen in it. As soon as I learned about it, I stopped taking it. There are other things like keeping blood pressure in check, which mine is always low anyway. There are studies going on to test the theory of eating slightly lower than maintenance to help with cyst growth. Lots of little lifestyle things I guess. It's a rare disease so it just doesn't get the same amount of funding as others. In terms of Mayo and follow up with my local docs, they really didn't. I shared all the lab work, etc., with them myself though. I plan to continue going to Mayo once a year. I will also see my local kidney doc. Sometimes with her I will get my lab work done and then if it looks good, I skip a year since I know I have Mayo.

An MRI of my spine also stated "two subcentimeter T2 hyperintense lesions on liver, most likely cysts".
Radiologist findings just said "herpetic cysts".

Doesn't the word "subcentimeter" refer to possible malignancy?
I recall about 15 years ago I was told about a few herpetic cysts on my liver but doctors back then did not seem concerned.

Yet MRI this week they were called "subcentimeter T2 hyperintense lesions" and radiologist said most likely cysts.

You would think if these cysts-lesions even remotely looked like cancer this radiologist would relay that in his "Conclusion of findings" but he only said "herpetic cysts".

Very confusing as one word, subcentimeter, has serious implications, yet radiologist does not indicate further tests should take place.