My dance with NED may be over too

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cindy0519
cindy0519 Member Posts: 173

I am undergoing some pre-surgical testing for a reconstruction procedure (DEIP) for my left breast as the surgery is currently scheduled for April 26, 2017.  I had an abdominal CT angiography a couple weeks ago to ensure that the vessels needed for the DEIP procedure are healthy and to determine exactly where they are.  Today the written report from this CT showed up in "my chart" so I of course opened it and read it.  This is at the very top of the report:

Abnormal left periaortic retroperitoneal lymph node, having developed compared to prior studies, highly suspicious for/compatible with metastatic disease from the endometrial cancer

And a bit more detail is found withn the text in the body of the report:

There is a left periaortic retroperitoneal lymph node that is abnormal, measuring 1.3 x 1.6 cm on axial image 145; this was more normal appearing in October of 2016, abnormally enlarged 01/24/2017. This was also normal on the study on 06/20/2016 and is suspicious for metastatic disease, given patient's history of endometrial cancer. (On 10/07/2016, this measured 1.2 x 0.5cm).

Called my onco and waiting on a call back from her.   Anyone have any advice on what I should ask her or what next steps might be?

 

Comments

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited March 2017 #2
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    I hate that

    I hate that they post these things to our charts before we talk to our docs. I have to force myself to NOT look at them until my doctor visit for interpretation.  It's a struggle between wanting to be prepared for visit and upset because I have just enough knowledge to be dangerous. Good luck. I'm sorry you are going through this. 

  • Soup52
    Soup52 Member Posts: 908 Member
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    Wow I'm shocked. I also have

    Wow I'm shocked. I also have my chart, but nothing like this is every presented on it. I have to request certain reports if I want them and I mean after surgery or a scan. I now understand exactly why. I'm so sorry that you are going through this. I hope you hear from your doctor quickly. 

  • cindy0519
    cindy0519 Member Posts: 173
    edited March 2017 #4
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    I hate that

    I hate that they post these things to our charts before we talk to our docs. I have to force myself to NOT look at them until my doctor visit for interpretation.  It's a struggle between wanting to be prepared for visit and upset because I have just enough knowledge to be dangerous. Good luck. I'm sorry you are going through this. 

    Boy, you hit the nail on the

    Boy, you hit the nail on the head.  I normally can't see mine until after Dr. either. I'm not sure if I can just see this one because the doctor  Who ordered the scan is a plastic surgeon or what the deal is. No call back from my Oncology as of yet.  Trying not to be too anxious and hoping that it is something that is not a big deal but the verbiage on the report sure makes it sound like it is a big deal. 

  • beccabtown
    beccabtown Member Posts: 234
    edited March 2017 #5
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    I hope you get more

    I hope you get more information soon and that whatever it is can be dealt with. Sorry you had to learn this way.

  • Nellasing
    Nellasing Member Posts: 528 Member
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    oh Cindy

    Dang- that is just a bummer that you are going through that and that you had to see a report without information!!!  Ugh!  I hope you got a call today and aren't still in limbo.  I too have to wait FOREVER before they release my results- so weird- someone must of pushed the Dr. reviewd button by mistake?!  Keep us posted!  Hang in there <3  (((HUGS)))

  • cindy0519
    cindy0519 Member Posts: 173
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    No call back from the GYN Onco yet

    Still no call from my GYN Onco as of this morning.  I call her office first thing this morning and was told "a message was sent to her yesterday.  She is seeing patients today.  She sees patients on Mondays and Tuesdays and will call you when she has time to review the report."  I wanted to scream! I asked if I needed to make an appointment to see her to be important enough to discuss this.  Got told she would call me to discuss but it may be tomorrow at the earliest.   I too am a patient...a patient who has been waiting over 24 hours for a return call on what I believe is a serious issue...an issue that impacts my life! So frustrated and angry...between breast cancer, USPC, and my primary care - I have what is supposed to be a team of 8 doctors and NONE of them, not a single one, has taken the time to read this report and call me to discuss it. This scan was performed on Feb. 24 so there has been plenty of time for this to have been read.  And not calling me back for over 24hrs and having staff tell me it may still be 24hrs or more is NOT acceptable.  She is in for a piece of my mind when she does finally call me back!

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    Cindy, that stinks and you

    Cindy, that stinks and you have every right to read that doctor the riot act when you finally do talk to her. In the meantime, have you been researching the different treatment options that may be offered, if it is mets? It sounds like your doctor may not have a lot of time to talk (once she finally calls you) so having all of your research completed and at your fingertips may prove useful to start moving the process forward starting with that first call. Good luck to you and fingers-crossed that you hear from her today.

  • oldbeauty
    oldbeauty Member Posts: 368 Member
    edited March 2017 #9
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    Treatment possibility

    Just to say I achieved a 5-year remission with radiation to a tumorous lymph node in same area followed by high-dose progesterone therapy.  Best wishes for a productive conversation and treatment decision.  Oldbeauty

  • cindy0519
    cindy0519 Member Posts: 173
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    Talked to Onco's PA this morning

    She finally had her PA call me back this morning.  The PA said "don't panic.  We don't know that it is cancer and the only way to know is to get the node biopsied." She was fairly concerned that this report just showed up in my chart. She asked a lot of questions about that, perhaps more than about anything else.  She is going to have a nurse call me today or tomorrow (guessing tomorrow now) about scheduling the biopsy for this week or next.  

    I will admit I haven't done any research for potential treatment. I am out of town for work (fly home tonight) and have just been busy with work so I really haven't had time.  I will have to do so between now and the biopsy for sure. 

    Thanks for your replies ladies I appreciate them more than you know.  Hoping to have a definate answer in the next week or so.

  • MoeKay
    MoeKay Member Posts: 478 Member
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    Waiting is the Pits

    Cindy, I'm glad that you heard back from someone in your gyn-onc's office.  These test and other non-definitive results can drive you crazy.  I remember the results of one CT I got in the ER in the middle of the night that stated "discrete tiny pulmonary nodules within both lungs, suspicious for metastatic disease."  Turned out to be something weird and rare that took 3 or 4 months to diagnose and properly treat.  I also remember reading my gyn/onc's operative report that mentioned my "palpably enlarged lymph notes" on the left and large, but not overly large nodes on the right."  When I got the pathology report a week or so later, all the nodes were benign.  Very hard not to panic when you read this stuff. 

    Best of luck in getting a relatively quick answer and I am hoping that the biopsy results are benign!!

     

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    Where is Marcus Welby?

    Oh, Cindy, I know how frustrated you must be!  I NEVER got calls back from the oncologists themselves, always a nurse or assistant and never in a reasonable amount of time as far as I was concerned.  And this was when I thought I was having serious side effects from chemotherapy.  And it turns out, I WAS having some serious side effects, but probably not life threatening.  But what if they had been?  I finally resorted to calling my pcp who always always saw me - often that very same day (and she was closer geographically).  In hindsight, I sort of understand, but having just recently gone through a different but equally frustrating experience with my son in obtaining appropriate medical care, I just plain do NOT like the way we are treated as patients/humans and when you see all the staff in our physicians' offices you can't help but wonder who does what and why it takes so doggone long for anything.   Our docs don't even see us when we're in the hospital (unless it's for surgery) - a "hospitalist" does.  They don't even appear to think about us until about 2 minutes before they walk in the room to see us.  If they do, doggone it, I sure don't know about what goes on behind the scenes.  I thank my lucky stars that I remain well and really anticipate that I will, but initially I sure didn't know or feel at all confident.  I am glad you finally got a call from the PA and of course, s/he is correct.  They need to do a biopsy.  But you knew that.  I guess the good news is no one is acting crazy urgent about this, but it does not help YOU in the meantime emotionally.    It just makes me so emotional and angry to feel dismissed.  Now, none of this solves your problem, does it?   Women typically post here after seeing their gyn/onc or oncologist and keeping us informed.  Also note that a lot of the posts are women waiting and worrying. And just because this seems to be a common problem, that does not make it any better.   So I'll wait and worry with you.  Hope you get the biopsy scheduled soon, but then there is the wait for the results . . ..Marcus Welby would have held your hand all the way along, but you've got us and we'll hold your hand.

    Suzanne

  • cindy0519
    cindy0519 Member Posts: 173
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    Biopsy is scheduled for in the morning!

    Thanks everyone for your comments.  It truely is frustrating on so many levels however the PA was very apologetic and assured me they did not know how or why the CT results were put on my chart without a call first.  She assured me they would handle this promptly and get the biopsy done and that is exactly what has happened (which has calmed my anxiety).  I'm a get it done kinda gal so all this sit and wait stuff just makes me anxious ;)

    The PA also mentioned that the lymph node is in an area where they may find that it is to dangerous to try to biopsy tomorrow. She said they will make this determination while looking at the CT during the procedure tomorrow morning.   She didn't make any suggestions on next steps if this is the case and I didn't think to ask.  I guess we will just see what happens and go from there.  

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    edited March 2017 #14
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    Cindy, just thinking of you

    Cindy, just thinking of you and hoping that all went well for you today. Let us know how you are doing. 

  • cindy0519
    cindy0519 Member Posts: 173
    edited March 2017 #15
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    Biopsy done

    Thanks Kvdyson! The biopsy of the left paraerotic lymph node is done. Despite some initial concerns about the location and if it could be safely biopsied they were are to get four tissue samples.  The procedure was not bad and I have been home resting the remainder of the day.  We should have pathology results in 3-4 business days.  

     

  • Nellasing
    Nellasing Member Posts: 528 Member
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    That's a relief Cindy!

    Thank you for coming back on and letting us know!  So glad they could get good samples.  Prayers as you rest and wait for results- we're with you, sending prayers and (((HUGS)))

  • SandyD
    SandyD Member Posts: 130
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    cindy0519 said:

    Biopsy done

    Thanks Kvdyson! The biopsy of the left paraerotic lymph node is done. Despite some initial concerns about the location and if it could be safely biopsied they were are to get four tissue samples.  The procedure was not bad and I have been home resting the remainder of the day.  We should have pathology results in 3-4 business days.  

     

    Will be thinking of you

    Cindy, will be thinking of you as you wait to get the results. Glad to hear the procedure went well. The waiting may be the toughest part but you've already had lots of stress leading up to the biopsy. 

  • Editgrl
    Editgrl Member Posts: 903 Member
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    Waiting is so hard.

    Like the others said, I am glad they were able to get good samples. Hoping there was a non-cancerous reason for the enlargement.

  • Big Sister 5
    Big Sister 5 Member Posts: 18
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    Praying

    Cindy, I am praying for you. It's an awful waiting and I am the most impatient person! God be with you.

    Lynn