cysts on my liver

Mariannemm
Mariannemm Member Posts: 136

 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 

«1

Comments

  • missrenee
    missrenee Member Posts: 2,136 Member
    I know how you feel, Marianne

    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

  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    My Dr office has a web site

    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, 

  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    missrenee said:

    I know how you feel, Marianne

    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

    My docs are like Renee's.  I

    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

  • cathyp
    cathyp Member Posts: 376 Member

    My Dr office has a web site

    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, 

    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

  • eihtak
    eihtak Member Posts: 1,473 Member
    Test results...

    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!

  • jnl
    jnl Member Posts: 3,869 Member

    My Dr office has a web site

    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, 

    I'm so sorry to read about

    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

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    eihtak said:

    Test results...

    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!

    ... any updates ?

    Please post when you are able.

    Strength, Courage and HOPE for a Cure.

    Vicki Sam

     

  • SIROD
    SIROD Member Posts: 2,194 Member
    Test Reports

    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
    jnl Member Posts: 3,869 Member
    SIROD said:

    Test Reports

    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

     

    Looking for an update also. 

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

    Hugs, Leeza

  • Mariannemm
    Mariannemm Member Posts: 136
    Not really an update...

    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
    Mariannemm Member Posts: 136
    Double post...Sorry!

    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
    Kristin N Member Posts: 1,968 Member

    Double post...Sorry!

    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

    March is almost here Marianne

    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
    SIROD Member Posts: 2,194 Member

    Double post...Sorry!

    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

    Seek Out A Second Opinion Oncologist

    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
    Mariannemm Member Posts: 136
    SIROD said:

    Seek Out A Second Opinion Oncologist

    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

    Doris

    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
    survivorbc09 Member Posts: 4,374 Member

    Doris

    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 

    Good luck! 

    How did your appointment go?

    Hugs, Jan

  • Mariannemm
    Mariannemm Member Posts: 136

    Good luck! 

    How did your appointment go?

    Hugs, Jan

    Tomorrow and Monday

    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
    DebbyM Member Posts: 3,289 Member

    Tomorrow and Monday

    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!

    Post when you know something

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

  • jnl
    jnl Member Posts: 3,869 Member
    DebbyM said:

    Post when you know something

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

    Good luck tomorrow and update

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

    Hugs, Leeza

  • Mariannemm
    Mariannemm Member Posts: 136
    jnl said:

    Good luck tomorrow and update

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

    Hugs, Leeza

    Thank you!!!

    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
    Megan M Member Posts: 3,000

    Thank you!!!

    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

    Good luck today Marianne! 

    Good luck today Marianne!  Praying for good news!

    Hugs, Megan