10 year survivor and mass found in liver....Scared to death

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Hello, need a place to vent ..went for ultrasound three weeks ago and two days afterwards the nurse called and said "you have gallstones and a mass in your liver ! " told me a surgeon would be calling me. After the initial shock I called back to ask if my oncologist should be involved. Was told she would check with doctor and let me know. In meantime I never hear from surgeons office so I call myself, they tell me they haven't received any orders from my doctors and asked what was going on, then made me my appt. which has been delayed due to doctor had emergency and had to cancel..so again I wait, while suffering from gallstones the last four weeks,,,pain, weight loss and no appetite.two days later no word from doctor office about my question then says to me " oh yea doctor said to contact oncologist!!! So now I'm freaking out and worried sick, all hiding this from my kids,family & friends. Don't want to get everyone scared. My husband and BFF know and I feel bad worrying them. Oncologist out of town for that week so delay again..lheard from his nurse today requesting my results from ultrasound. Which again were suppose to have been sent a week ago. Call primary doctor again and the nurse tells me the doctor is questioning some shadows in the ultrasound pictures and is going to contact the radiologist,,,and will call me....that doesn't happen, three days later I got a call from primary doctors nurse and she says..." um yes I'm calling to tell you that the Doctor is referring you to oncology, I proceed to tell her I've already set that up, she says oh you have a oncologist ??? And then tells me the doctor is on my case !!! I respond with seriously it's been 2 1/2 weeks since ultrasound and now she's on my case !!!!!!!! Furious now...then of course never hear about the shadows and radiologist, so I call the next day and says oh yea the doctor got confirmation and final report. You do have a mass along with gallstones...today onco calls and says they want me in for cat scan as soon as possible , scheduled have to wait four days, as long as insurance approves it tommorrow..otherwise will have to changed it later...1/2 hour later primary doc calls and says Did you schedule MRI...I said no how and why would I...she says well doctor wants me to order one...I tell her onco already has me scheduled for catscan on Monday...then rudely says...well do you want a MRI or not !! I tell her " I have my oncologist on my case and I will stay under his care. So now I'm a wreck worrying and also upset how a doctors office can have no concerns for their patients...like three weeks later she decides to be on my case ! I wanted to tell them..first of all calling and telling a former cancer patient that you have a mass and a surgeon will call..and hang up., no compassion . And the doctor can't even call and maybe give a little compassion was telling me or insight. And why am I calling to ask if oncologist should be involved, she knows my history..just so frustrated and scared. I just feel like I'm pushed to the back burner and the ball was dropped. It should have been flagged when she seen mass and a cancer patient. So now I wait patiently until Monday ,tuesday ...whenever I hear something. No one can understand and it's making me crazy waiting. I'm so upset with the doctors treatment . Just praying everyday I'll be fine. they tell me I have a healthy heart but after all this they may need to recheck.

Comments

  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2012

    Hi Kar5bear and welcome to BCO.  I'm so sorry that you are having this worry after 10 years and I can quite understand yourt anger and frustration with your doc.  Amazing! and not in a good way.

    BCO is a great place to have a rant and get it out of your system as we all understand the fears and frustration only too well.

    You don't say what your original diagnosis was ie ER/PR + or - etc.  Here's hoping that what they see is actually something to do with the gall bladder and nothing else but I do hear you on the what if.

    Please let us know how you get on.

    Love n hugs.  Chrissy 

  • Kar5bear
    Kar5bear Member Posts: 5
    edited July 2012

    Diagnosed with Infiltrating Carcinoma,Stage 3b ,Grade 3, 1/10 positive lymph nodes,..had horrible chemo side effects, Tamoxifen .5years, breast implant problems, had it removed after body rejected it and DIEP four years ago...best decision ever Wished I would have gone that way originally. silicone implant made me very sick for years and was told it was all in my head pretty much by plastic surgeon, after removal felt 95% better. Made the decision at that time to remove other breast because there were some concerned spots that were worrying me . Felt as it would give me less risk of reoccurance. So praying now I'm not having to deal with the big C again. So hard when I hear don't worry, how can I not ? They don't understand...obviously oncologist is worried to do further testing, then again I tell myself he's being cautious,which is what I want..I've always seen him every 6 months still and he's definately a Doctor I trust. Was just at my appt in Feb. and blood work was fine. So hoping its all linked to gallbladder, so ready for answers. Thank you for understanding and listening.

  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2012

    You have done very well so far and heres hoping you continue to do so.  Sounds like your onc is a good man to have working for you and one that is sure keeping a close eye on you.  Having him do further testing I would say is being very cautious which is a really good thing.

    I know having people tell you not to worry doesn't go down well at all ......... as you say, how can you not.........but I'm sure it's more for them than you.  Hopefully you will get some positive news once those tests are complete.  If not, please don't panic as there is life after a stage IV diagnosis.

    Love n hugs.  Chrissy 

  • barsco1963
    barsco1963 Member Posts: 2,119
    edited July 2012

    Kar5bear - sorry that you are going through all of this. I can certainly understand your frustration with the dr. and nurse. I know that waiting to find out what is going on is the hardest part. I hope that you get some answers soon and pray that everything turns out well. Although I don't usually wish gall bladder issues on anyone (I know how painful they are), I do hope that is all that is going on with you.

    But as Chrissy mentioned - there is life after a stage IV dx. I have liver mets and am doing very well. Hang in there.

    Keep us posted - we will wait with you.

    ((hugs))

  • Kar5bear
    Kar5bear Member Posts: 5
    edited July 2012

    Thank you for listening and responding. It's going to be a long weekend again and just pray today the insurance company gives approval for my ct scan so that it happens Monday and I can have some answers.

  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2012

    Keeping everything crossed that you get the approval and the results are good.



    Love n hugs. Chrissy

  • dreaming
    dreaming Member Posts: 473
    edited July 2012

    I will put my advocate cap, write a letter with dates and information to each of the doctors and places where they work, with a signature when then receive them, make sure to let them know that any delay on communication , treatment is influencing not only on your physical well being and a good outcome but to your emotional also.

    When something in on writing they move fast, there is prove of poor care. As patients one has to be aggressive and demand, and keep the eye on your medical team.

  • Kar5bear
    Kar5bear Member Posts: 5
    edited July 2012

    Thank you all for your support and kind words. Yesterday had my CT scan and they found two masse in my liver. One 4.5 cm and the other 2 cm. Ih and 9 large gallstones ! Panic sets in..while reminding myself not too, hard thing to do . So met with surgeon and Great news is they are benign !!! Said that they will keep an eye on them ..you cant imagine the relief !!! The tears just flowed after hearing that word " benign" no one truly understands unless youve been there..Its been a long few weeks. Keeping it from family & friends and trying to act as if everything is ok...when deep down I was falling apart from fear. But in the back of my mind thinking of my five beautiful children and how I had to be strong and if I had to deal with the big C I would kick its butt again. Then the surgeon told me I had 9 large gallstones and needed to have it removed...this news seems so petty after what I could have heard...I'll take it:) Again thanks ladies for your kind words and support.

  • vballmom
    vballmom Member Posts: 426
    edited July 2012
  • chrissyb
    chrissyb Member Posts: 16,818
    edited July 2012

    Wonderful news!  Have your gall bladder surgery and get well soon.

    Love n hugs.  Chrissy 

  • barsco1963
    barsco1963 Member Posts: 2,119
    edited July 2012

    Awsome news! So very happy for you.

  • sweetbean
    sweetbean Member Posts: 1,931
    edited July 2012
  • cp418
    cp418 Member Posts: 7,079
    edited July 2012

    "Benign" has become one my favorite words!!!!  Excellent News!!!!

  • Onelife2012
    Onelife2012 Member Posts: 26
    edited July 2012

    I am praying you are right. I am thinking that if the bloodwork was good back in Feb then it is probably nothing, But...like you say, how can you not worry? You can't. I feel for you and I am praying you are going to be ok.

    I was just diagnosed after being 11 years cancer free. I was also Stage 3b grade 3 but I had 4 nodes positive. I have had a wonderful 11 years full of ups and downs and now I am back in Cancerland. I am trying to deal with it one step at a time.

    I found this site and it is wonderful, full of amazing people with tons of advice. It means so much to me to be able to talk to someone that has been through the same thing, has had the same fears. I hope you find the same help. 

    Good luck and God Bless xx 

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