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cysts on my liver

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

 I have had a few scans over the past 3 years since my dx. A couple of scans ago they mention that there are cysts on my liver. The last scan I had it says that there are now 3 cysts on my liver but the others were unchanged. I have been researching this, of course! It sounds like it is normal and no big deal. The upsetting part is my dr has never talked to me about it. Even if it is no big deal why wouldn't you go over a scan with your patient and explain everything? My onc is making me so frustrated!!! He doesn't give me copies of the report on my scans, so I requested a copy of them so I could go over them and that is when I found out about all of this. Why would you not have a patient come in after a scan and go over the whole thing with them!!!! Is there a point that these cysts could turn and become cancerous? Is that something I need to check once in awhile? I have a spot on my rib that we are watching too. Thoughts?  Marianne 

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

I've learned that even though I love, love, love my surgeon and oncologist, if I want something, I have to ask.  So I get copies of test reports--scans, MRIs, CTs, PETs, labs.  If I see something that says anything other than "normal", I ask.  Sometimes there are changes or variations that are not significant, so I think the docs just don't want to heap more onto your plate of worries.

 

My doctors are always willing to go over the results with me and explain things.  I just have to ask.  Get your copies, read them and if there's anything you don't understand or question, ask your docs.  If, at that point, they seem unwilling to give you adequate answers and explanations, then maybe I'd consider changing physicians.

 

Hugs, Renee

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

My docs are like Renee's.  I can get any information I want, I just have to ask.  I prefer that to scheduling an appt to go over test results...I save the copay and my time, less waiting for results.  But I still get all the info and all the answers I need.  I actually get lots accomplished with my onc via email.  I'm betting if you told your onc you want an appt to review test results, or to get questions answered they would be happy to oblige.

I hope those spots you are watching mysteriously go away, never to return.

Hugs,

Linda

smalldoggroomer's picture
smalldoggroomer
Posts: 1181
Joined: May 2010

My Dr office has a web site that patents can go to and see all of their reports, Blood test, Dx, Rx's, Everything is there to see. They let you pick a user name and pass word. I can see everything anytime. Maybe they could incorporate some thing like that. I love it. You can also print it anytime you want it. You can even e-mail your Dr or text them,

 I do think your Dr should tell you everything that has to do with your health. I know I want to know everything.

Take care Kay, 

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Requesting reports may be a double edge sword for some.  It may produce alot of undo anxiety.  I have 23 years in survivoship so I've seen alot of test results.  I have so many possible cysts, lumps, nodules, protusions etc, etc.  Wording in reports often sound like there is a problem area until you google and find its just defining an area of normal anatomy. If you trust your doc, you may have the personality to just want to know all is ok.  Otherwise, you may obsess about these lumps and bumps greatly effecting your quality of life.  We all just need to find our own comfort zone with this issue.

Cathy

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I'm so sorry to read about this.  I guess I am lucky because whenever I am scheduled for any test, that doctor automatically sets up a consultation for the results with me too.  Your doctor's should tell you what all of your test results are.

 

Good luck to you,

 

Leeza

eihtak
Posts: 929
Joined: Oct 2011

First let me say that I hope these cysts are nothing for you to worry about, please let us know. I am lucky in that so far my onc always schedules a visit 1wk after a scan to go over things. What is a little difficult, is that I also get a copy of results and like to take my time going over it myself and do need to google every other word it seems. Then, sometimes I do have questions and either wait for the next appointment, or call the nurse. (she can usually give me an answer). Keep in mind when comparing from scan to scan that it is not always the same person that read the scan, and often a difference in wording or just how they read it can cause unnessary alarm. I will say that one time my report said that, when describing an area of my abdomen, my gahlbladder was surgically absent.....yet to my best knowledge it was never removed! My onc did immediately check, and said it appeared to be collapsed at the time of the scan ( I had colostomy surgery ). Still, made me wonder, if that was mis-read, what else may be????? We do at times need to be our own advocate. I have a great deal of faith in my medical team, they work "for" me, but they are human, and if I have a question I expect an answer. Luckily, so far I have gotten them! I will have you (and all) in my prayers for good test results!

VickiSam's picture
VickiSam
Posts: 8611
Joined: Aug 2009

Please post when you are able.

Strength, Courage and HOPE for a Cure.

Vicki Sam

 

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

I had cysts report on my liver, my ovaries and thyroid.  They turned out to be just cysts.  I hope yours are that way too.

I do pay attention to everything the test results report.  Some are not going anywhere, some do.  I had a stone near the kidney reported on several scans and then I had the stone go down the route.  It was very painful.  The only nice thing about it, I knew what was happening and what to expect.

We need an update if you have one.

Best,

Doris

 

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Looking for an update also.  I hope you post one soon.

Hugs, Leeza

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

I see my onc next month and I will talk to him about a follow up scan.  It was suggested that I have another one in 3 months, which in March it will be 3 months.  I talked to my PCP and he felt I should look at a 2nd opinion.  The last 3 scans I have had it has talked about an up tick in my ribs, so the PCP would like to see another scan for both of those reasons.  At this point I don't have a lot of trust in my current onc, but I could be over reacting too.  So I am trying to be patience and wait.  I will let you all know what I find out when I go in later in March.  Thank you for taking the time to respond! You are all the best!!! Marianne

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

I see my onc next month and I will talk to him about a follow up scan.  It was suggested that I have another one in 3 months, which in March it will be 3 months.  I talked to my PCP and he felt I should look at a 2nd opinion.  The last 3 scans I have had it has talked about an up tick in my ribs, so the PCP would like to see another scan for both of those reasons.  At this point I don't have a lot of trust in my current onc, but I could be over reacting too.  So I am trying to be patience and wait.  I will let you all know what I find out when I go in later in March.  Thank you for taking the time to respond! You are all the best!!! Marianne

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

March is almost here Marianne and then you can have the scan.  I pray it will be better news for you.  Keep posting to update us and we'll all keep praying for you.

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Perhaps have your PCP do the ordering of MRI, PET scans for the bones and Ct scan for the cysts.  Ultra sound work good on cyst too.   If it is a cyst the sound will go through and if it isn't it won't.  

This way you can have your PCP find you and oncologist for a second opinion.  Since you don't have a lot of trust in your present one, you should find another one or at least see how you might go better with another oncologist.  My PCP found  the oncollogist I have now and have been with her for 13 years.  The other one had 3 strikes against him:  he forgot to order raditation at my initial diagnose and admitted it.  2), couldn't think why I was bleeding (Tamoxifen and thickening endometrium lining) and kept ordering endometrial biopsy though they were all negative.    I kept bleeding (turns out all I needed was a D&C but the cells were changing by the time I located a proper gynecologist).  3)  Ignored the pain I was having which were lesions in the ribs.  Was I ever upset with him.  Don't wait like I did, find a new oncologist that you can see eye to eye on serious issues.

Sending positive thoughts your way,

Doris

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

Thank you so much for that pep talk!!! Just a couple more weeks and I will see the doctor.  I see my plastic surgeon on Monday, there maybe a 2nd opinion on my horizon with that doctor too. He wants me to do another surgery for the scar tissue I keep developing.  That would be the 5th surgery on my breasts!  I love my rad doctor, she and I connect. The last time I saw her I sat in her office crying about how these other two doctors just aren't listening to me. So she knows I am concerned about my care. That is totally not like me to break down like that, but it has been so frustrating. Yesterday I went into the demotalogist for a routine check up and left there having a biopsy and stiches.  I have been having pain on my scalp for quite sometime, I have talked to him about it before. This time I told him I still have the pain and now losing some hair. Looked at the area and he decided he wanted to check into it. I loose it when I leave and get in the car to drive back to work. Crazy! Always something isn't it?! Hugs Marianne 

survivorbc09
Posts: 4378
Joined: Jun 2009

How did your appointment go?

Hugs, Jan

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

I see my radiation dr tomorrow and my onc on Monday, so not too much longer and I will get that appt!!!

 

Thank you for checking!

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

Post when you know something more Marianne!  Hugs and prayers!

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Good luck tomorrow and update us when you have the chance!

Hugs, Leeza

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

I had my scan on Friday and I see the dr on Monday!  I hope he has the results!  Lots riding on this scan.  I will have you all in my heart on Monday morning!  Marianne

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Good luck today Marianne!  Praying for good news!

Hugs, Megan

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Marianne, be sure and post when you get back! 

 

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

You're in my thoughts today Marianne!

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

Wishing you good results!

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

Results Marianne?

survivorbc09
Posts: 4378
Joined: Jun 2009

Thought there might be a new update.  Marianne?  Where are you and how are you?  Test results?

Jan

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

When I saw my rad dr she was really sick, so it was a half hearted appt.  I was disappointed!  So I went and saw my onc this last week.  He told me that they can't tell if the cycts are cancerous or not.  But when he feels my liver it feels normal.  The next step would be to have an ultra-sound, which sounds simple and I said then can we do one.  He doesn't fell I need one, he thinks all is okay.  So I need to decide if I am "okay" with his decision.  I have obtained all my scans both films and written reports.  I have begun resreaching a new onc in a larger city then were I live.  There is only one clinic in my town to go to for onc.  I am going to make sure I pick a dr who will be aggressive and will listen to me.  I have spoken to a few people in the medical world that I know really well and they all say it is time for me to switch.  Why is it so hard to do?  I have made these steps, I have narrowed done the doctors and now I need to make a plan!  Thank you all for your thoughts, I will keep you posted on what I will do next.  All my best, Marianne

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Marianne,

For my 2 cents worth.   I would go with your new plan to settle on a new oncologist or even a 2nd opinion is worth seeing another.   I would rather know if the cysts are cysts or if they are tumors.  You don't want to be sorry later but wishing you did.  

One thing about an ultra sound, though it is good to discover if sound travels through a spot, and it does if it is a cysts.  What if the rib bone is blocking the area which might be a consideration of doing or asking for a ct scan instead.

While we have a certain rapport with our doctors, after we leave they go to the next patient.  The person who has the most invested and most interest in your situation is YOU.

Wishing you well,

Doris

 

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

You are so right, I am the one who have the most vested!!  I have an appointment with my PCP and it has been a year since we have done any blood work.  I was going to ask him to do some blood work and talk to him about the ultra-sound too. I don't want to do more than I need to do but it all seems so easy to do and to find out why don't I?!  Marianne

Pink Rose
Posts: 495
Joined: Nov 2012

Do the ultra sound Marianne.  You really need to know, don't you?  It might be time to seek a 2nd opinion with another onco also.  You have to find out.

Hugs, Rose

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Marianne,

Have you had blood work lately that most likely included a liver panel?  Where there any abnormalities in it and did your doctors review the results with you?  It is understandable that you want to know for sure if the cysts are cysts but I do have to urge you to read my original post! Sometimes these findings lead to unnecessary anxiety and additional testing that subjects you body to radiation it can do without.  Have you discussed this with your PCP?  Often times they could gather the results, sit down with you and determine the next step.

Good luck getting to the bottom of it. 

Cathy

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

It's always hard to change doctors Marianne as we just settle in with the one that we have and are used to them.  I guess it brings us some comfort or safety knowing we've been treated by them for awhile.  Something or someone new is always scary.

I hope you do get a new onco and get the ultrasound. 

Big hugs,

Debby

Double Whammy's picture
Double Whammy
Posts: 2389
Joined: Jun 2010

Because (drumroll), I've put myself through it many many times and probably will continue to do so.  I'm currently obsessing about "several areas of enhancement" on my December MRI.  The bottom line was no evidence of malignant disease, but gee whiz, they mentioned something else . . . My current philosophy (today) is if the cancer comes back, it will, and whether it is treated today or next month probably isn't going to make a hill of difference unless it's something really really impressive and that would be obvious.  But wait - remember I had 2 cancers so I have twice as many follow-ups as most so things like my nodes are checked more often and I'm asked similar questions by everyone.  I know it's awful to feel your concerns have been dismissed, but your oncologist probably truly believes they're just cysts.

Having said all that, we each know our bodies best and each have established a comfort level with our health care team.  If you're uncomfortable with the feedback you've received, by all means follow up with someone else.   Many of us (me included) had no symptoms of breast cancer (i.e., palpable lump) but we still had it.  "They" watched a small mass in my beast for several years - and then it changed.  You've grown another "cyst" in your liver, so this is a change, and that would be what concerned me - the change.  

I hope you can put your mind at ease about this and get that second opinion or switch oncs.  While I feel my oncs have very intact egos, I don't think they would take the least bit of offense to me either getting a second opinion or switching.  Good luck and let us know.

Suzanne

Pink Rose
Posts: 495
Joined: Nov 2012

I hope you get a 2nd opinion too.  I don't think any doctor would mind that you would do that, and if they do, too bad.  You need to find out what's going on.

Good luck, Rose

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Marianne, did  you see your PCP yet?  What did they say? 

Leeza

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Looking to see if you've posted anything new inre to seeing your doctor or seeking a 2nd opinion.  Wishing you the best!

Lex

Lynn Smith
Posts: 1265
Joined: Mar 2011

I'm late with this but I had a breast cyst for years.Also benign tumors since 20.The breast cyst was watched. I never missed but one appt in all the years since 20.BUT one year I missed. When I went to the doctor he found the cyst was bigger after quite a few years and from my 2 year check up.He went around the room as to Pray.He said he had to take  a sample and have it tested.It came back non cancerous.The cyst was no longer there after the aspiration.

Cysts are fluid filled and not solid from what I was told and only if they grow do they check them.This was my case for the breast.

With the liver and harder to detect I see your concerns.Hope you have good news.Please let us know.

Lynn Smith

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