Liver Cysts

[Liz1944]

I've had a large Liver simple Cyst for 10 years with no septations inside it, and have Ultrasounds every 6 months to watch it since it has been growing thru the years.  In 12/2011 it was 6x6.5 and minimally complicated with one internal septation.  Now 7/2012 (6 mos later it grew to 7x7.5) still minimally complicated but now has more septations.  They want me to have an MRI with contrast to diagnois the septations. I read they can be malignant or benign.
I'm a 5 year survivor of Breast Cancer - Early Stage 1  (clean nodes), no metastizes, No radiation, no chemo, had a single Mastectomy.  I guess that's why they are concerned, but I didn't think cancer can metastize with Stage 1, clean nodes, & mastectomy after this long.  I had a PetScan a year ago 7/2011 with contrast - was Normal.  MRI of Breast /Normal, US Breast/ Normal, Cancer Markers all Normal, and Liver Enzymes all Normal.  I've been reading that Septations can also be benign.  I would love hearing from anyone that can give me more information.  Thank you

[I_amadoctor]

Also I do have a cyst which is inflaming my liver and in the past I have had cancer of my liver
At the age 3

[I_amadoctor]

Hi I am puking bile and am not eating my doctor says I'm fine... What should I do?

[Liz1944]

Hi Hector,

I just spoke to a doctor who has been a Radiologist for 35/40 years and developed a wonderful machine called a SonoCine (3D ultrasound only for the breasts).  It sees through Dense Tissue in the breast which the others can miss. That's why the mammogram missed mine.  He's a wonderful caring man.  He said I don't think this is maglignant, but you definitely should be under the care of a Liver Specialist (as you recommended) especially due to the size of it.  My husband's heart surgery is at UCLA and I think I'll ask his Surgeon to recommend someone there for me.  

Thank you again Hector and God Bless you

[HectorSF]

No I am not a medical professional although I have worked in the R&D side of Pharma. I am a patient with End-Stage Liver Disease and liver cancer (HCC). I have had two HCC tumors and had T.A.C.E. (Transarterial Chemoembolization) treatment twice. So I have done a lot of research on liver tumors and lesions. I have been involved with the support of people with advanced liver disease for many years now and have a number of friends who are either pre or post liver transplant patients. I am hoping to get a transplant in the next 5-9 months before my liver cancer becomes unmanageable and becomes terminal.

I have also had cancer in my foot three years ago so I am aware of how brutal cancer can be. So my opinion is to always err on the side of caution when it comes to cancers. I have known a number of people who have died of cancer because it had advanced to far and spread and it is not the way I want to die if I can help it.

You are correct. Growth of a cyst is not necessarily a sign of neoplastic or malignant features. But when a complex cyst is seen on ultrasound, the next step would likely be to obtain a CT scan to better localize the lesion and rule out other associated findings that might suggest a malignant process. But even if there is only a 5% chance of it a neoplasm I personally would need to know that it is definitively not cancerous.

Like I said before, any cyst over 5 cm in diameter should be carefully evaluated for any kind of septation, thickened or irregular wall, or internal debris, which suggests the possibility of a biliary cystadenoma or cystadenocarcinoma.

Maybe I am paranoid but I wouldn't depend on one doctor's opinion when it comes to cancer. I had one doctor that missed my cancer in my foot. Thought it was a benign growth so when she operated she didn't take out all the cancer. So I had to have a second operation to remove all the other parts of the cancer she had missed. At a transplant center, you have the best and the brightest in liver disease with all specialists giving their opinion and coming to an agreement and planning for the future. I have HCC, which is primary liver cancer if I wasn't being treated there my time would be about up by now. So maybe I am over cautious. But I have enough experience with liver disease to know that only a hepatologist the their colleges in other specialties at a transplant center has the deep knowledge and experience to tell the difference between a lesion that is cancer and one that is not. They do this on a daily basis. At a transplant center they would have known exactly what your status is long ago. It wouldn't take months or years.  

No doctor is an expert in liver disease, radiology, and oncology. That is why transplant centers have a team approach to liver lesions and tumors.

It is your life and your decision. I would just hate for you to have wasted valuable time that can never be recovered. As there is no going back when cancer is involved as you already know.

Here in sources to learn more about cysts....
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Cystic Lesions of the Liver - from the American Journal of Imaging

"Complex Cysts"

"Complex cysts are fluid-containing hepatic lesions with one or more of the following complex features: wall thickening or irregularity, septation, internal nodularity, enhancement, calcification, and hemorrhagic or proteinaceous contents. Because a broad range of disease processes can result in complex cystic liver lesions, they may be further grouped as neoplastic, inflammatory or infectious, and other miscellaneous entities. A careful evaluation of particular imaging features as well as associated radiologic and clinical and laboratory findings is necessary to suggest a specific diagnosis."

http://www.ajronline.org/content/196/4/W355.full
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"Cystic Tumors

Unlike simple liver cysts, cystic tumors are actually growths that may become malignant over the course of many years. The benign cystic tumor seen most frequently is called a cystadenoma; its malignant counterpart is a cystadenocarcinoma. The symptoms caused by cystic tumors are the same as those seen with simple cysts; fullness, discomfort, and pain. The liver blood tests usually remain normal, unless a cancer has developed. US and CT scans are the best imaging studies to show the cystic tumors, which contain both liquid and solid areas. Because of the possibility of malignancy, cystic tumors must be completely removed surgically with an open (not laparoscopic) operation. The recurrence rate after surgery is very low and the long-term prognosis is excellent."

http://my.clevelandclinic.org/disorders/gs_liver_disease/gs_liver_cysts_tumors.aspx

Best of luck to you!

Hector

[Liz1944]

I just read one of your other replies to someone also having problems and you told her about your serious illness that you are facing.  I am very sorry to hear what you have been going through.  God Bless you and stay well.
Again, thank you for your advice which I can now understand why you were being so forceful with me on getting a diagnosis and/or treatment.  My problem right now is my husband is going for open heart surgery on Monday and I don't want to upset him anymore than he is already.  After his recovery I definitely will go further with myself, but right now I have to care for him.
I keep thinking about the positive sides - my Pet/CT  NORMAL, Cancer Markers  NORMAL, Liver Enzymes  NORMAL.

[Liz1944]

Thank you for your reply.  You sound very informed on this subject of liver Cysts.  Are you a radiologist? or other medical field?  Just interested in where you are getting your info from.  My doctor never mentioned a transplant center or liver specialist.  They just said it's a simple cyst until now calling it a minically complicated cyst with septations.  They said cyst either stay the same size or grow larger.  It doesn't bother me so they only have been sending me for Ultrasounds every 6 months.  

[HectorSF]

Hi.

It is difficult to tell what is going on with your cyst we don't have the US reports.

First I would forget about any connection between your breast cancer and this cyst. You say you have had the cyst for ten years and breast cancer for about 5. How can there be a connection?

Are you going to a liver transplant center for your care? You should be. They are the only place that has the people and resources to diagnose and treat complex cysts.

Whoever your doctor is they should have taken steps already to determine definitively  if the cyst is benign or not when it was 5 cm. Hopefully it is benign but with continual growth even if it is benign it can grow into your bile ducts or blood vessels of your liver which would could be very dangerous.

If I were you, I would want answers and action ASAP. If the cyst is a neoplasm even more so, as you don't want to have cancer in you any longer than absolutely necessarily. I would demand a diagnosis now and have them surgically remove it if need be. As it gets bigger, if it is a neoplasm, than they are going to have to cut out more of your liver to be sure they get all the cancer. Since you have had breast cancer you understand that catching a cancer when it is early and small leads to the best prognosis.

Of course I am on going by the little information you provided but from what you said your doctor is not treating your cyst aggressively. If they can't determine what it is then they should first rule out a parasite infection. Second, the cystic fluid can be aspirated to look for mucin, which is highly suggestive of neoplasia. Third, they should perform surgery and biopsy the cyst. Only highly experienced radiologist and a surgeon at a transplant center should do this type of surgery.

Surgical removal and histologic sectioning are the only way to definitively establish whether or not a complex cyst is neoplastic.


Good luck!
Demand answers and action now for your own sake.

Hector