News from the onc-it never ends

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dmc_emmy
dmc_emmy Member Posts: 549
edited March 2014 in Breast Cancer #1
Well, my friends--it seems that I should repeat my mantra of "Life's isn't fair, but life is good" daily.

I went to the onc today. It's interesting what goes into your chart, but no one seems to think it's important enough to tell you about it!

I had another blood draw today, the 3rd one in less than 1 and 1/2 months, because the CA count was still slightly elevated (though lower than the last one).

And, remember that bulge I told you about a few days ago? Well, it was seen on my last CAT Scan! Yes, this past Feb! But, I guess they didn't think it anything to worry me about-because they DIDN'T tell me! Who's body is this, anyway?

Now, the "thing" growing inside of me is pushing out my left rib, is larger than my one remaining breast, and is so large that I have to buy a size larger to accommodate this "thing." I look fat, in spite of the fact that I lost 5 pounds, or pregnant, except for the fact that this "thing" is in the wrong place.

I just want to cry.

Back to the Feb scan; this mass showed-up and was described as: "appears as though it's an organ". Hello, I have no organ there, my spleen was removed over 10 years ago. The onc today told me: it could be an auxiliary spleen (I guess I'm a med'l freak now), a vascular hernia (caused by surgery, something else they didn't tell me could happen)or, God-forbid, cancer.

I'm suppose to start work in less than 3 weeks. Don't these drs think that maybe some of us work for a living?

Okay, repeat to myself, "Life isn't fair, but life is good, Life etc...
dmc

Comments

  • dyaneb123
    dyaneb123 Member Posts: 950
    #2
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    I am so flabergasted by this
    I am so flabergasted by this "could be" attitude of your docs , dmc, what the hey?
    I want to know what this "thing" of yours is is RIGHT NOW!!!! I had an 8lb fibroid tumor once but it was growing on an ovary. I did look pregnant! But it was a harmless thing, just gross to think about. Are they going to go in and look at it at least?
    Dee
  • outdoorgirl
    outdoorgirl Member Posts: 1,565
    #3
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    Wow
    can't believe they didn't tell you what they saw on the CAT scan! I wonder why?
    I am sorry that this is yet another crisis. Here's hoping that they can find whatever is wrong and treat it so that you can get on with your life!
    Please keep us posted-we do care!
    Patty
  • mimivac
    mimivac Member Posts: 2,143 Member
    #4
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    oh my god
    I'm so sorry, dmc. That really, really sucks. Especially the part about your docs knowing this for months. I think it's time for you to take charge of things and tell those docs. what's up. That includes getting the needed testing to determine what this mass is and requesting all of your test results and reports so you can read them yourself. Having a huge mass, while very unpleasant indeed, can be totally benign, and this is what I wish for you. But a honest heart-to-heart with your onc. seems to be in order. Please let us know.

    Mimi
  • 1surfermom
    1surfermom Member Posts: 396 Member
    #5
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    mimivac said:

    oh my god
    I'm so sorry, dmc. That really, really sucks. Especially the part about your docs knowing this for months. I think it's time for you to take charge of things and tell those docs. what's up. That includes getting the needed testing to determine what this mass is and requesting all of your test results and reports so you can read them yourself. Having a huge mass, while very unpleasant indeed, can be totally benign, and this is what I wish for you. But a honest heart-to-heart with your onc. seems to be in order. Please let us know.

    Mimi

    I agree with Mimi
    Dmc,
    I'm so sorry, it must have come as quite a shock that something that was discovered 6 months ago, is now being brought to your attention. Sometimes you have to step out of the role of compliant patient and really be a B***CH. It is difficult to do, in my opinion because I assume that my Dr. has my best interest in mind. I hope that the mass is benign and you can put all of this behind you. Love Surf
  • lanie940
    lanie940 Member Posts: 490 Member
    #6
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    Your're kidding me, it was
    Your're kidding me, it was on your last CAT scan and they did't tell you? My Oncology nurse read my whole CT scan report to me over the phone, then when I went today for my follow-up after the lumpectomy, I got copies of ALL my reports. Actually, they burned a CD of my reports to send to the Radiologist I'm going to use because he is at a different hospital. I would be furious. So, what are they going to do about the "thing"??
  • fauxma
    fauxma Member Posts: 3,577 Member
    #7
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    lanie940 said:

    Your're kidding me, it was
    Your're kidding me, it was on your last CAT scan and they did't tell you? My Oncology nurse read my whole CT scan report to me over the phone, then when I went today for my follow-up after the lumpectomy, I got copies of ALL my reports. Actually, they burned a CD of my reports to send to the Radiologist I'm going to use because he is at a different hospital. I would be furious. So, what are they going to do about the "thing"??

    Time to get in their faces.
    Time to get in their faces. Tell them to schedule whatever tests need to be done to determine exactly what the hell this is. It is unacceptable to have them see this 6 months ago and not tell you or do more to find out what it is. Yes, time to jump on the broom and be a witch. You are every right to be upset about this and you need to tell them that as well.
    Stef
  • rjjj
    rjjj Member Posts: 1,822 Member
    #8
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    fauxma said:

    Time to get in their faces.
    Time to get in their faces. Tell them to schedule whatever tests need to be done to determine exactly what the hell this is. It is unacceptable to have them see this 6 months ago and not tell you or do more to find out what it is. Yes, time to jump on the broom and be a witch. You are every right to be upset about this and you need to tell them that as well.
    Stef

    You need answers
    Like Steff said, it IS time to get in their faces, I would insist to have tests done immediately! I would also be upset. I hope you get something done very soon so at least you can ease your mind.

    Keep us posted and I will be praying that it is nothing to be worried about.

    hugs, Jackie
  • creampuff91344
    creampuff91344 Member Posts: 988
    #9
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    rjjj said:

    You need answers
    Like Steff said, it IS time to get in their faces, I would insist to have tests done immediately! I would also be upset. I hope you get something done very soon so at least you can ease your mind.

    Keep us posted and I will be praying that it is nothing to be worried about.

    hugs, Jackie

    dmc, I am totally appalled
    dmc, I am totally appalled at how your onc didn't feel the need to tell you about the results from the CAT scan before now, and that he seems oblivious to the fact that delay could mean serious consequences for you in the long run. Sometimes I really don't understand what is in the minds of these medical professionals....surely it is not that they are trying to spare you the worry. Something of that size growing would alarm anyone, no matter what your prior circumstances, and especially if your history of cancer is there. I think I would be looking for another onc and medical facility, if that is possible. You are in my thoughts and prayers, and hopefully things will be good for you. You're right, life is sometimes not fair, but life is good.

    Hugs,

    Judy
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #10
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    News from onc .. OMC R Dr's insane???
    dmc ..

    Call a meeting between doctors and onc ..I think we have the right, to ?? right... Ask for a clear understanding to what is going on. It's your BODY, and your life. Okay, so I am a little sassy, being a new cancer victim.

    Have yourself a good cry, and let's get ready to FIGHT!!!

    Office meeting: doctor (s) .. onc staff, plus .. films, results, charts, all medical information. I would then request that my 'cancer treatment team' explain what happened, what the plans are to fix me..

    Cancer is in US, but it does not HAVE US!!!! Damn these doctors and onc staff!!

    Hugs from New cancer victim in Corona, CA
  • Akiss4me
    Akiss4me Member Posts: 2,188
    #11
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    Bottom line....
    I can't believe they neglected to tell you they saw an abnormality on your scan! But what is done, is done. What is going to happen now? Will they biopsy this? Will they run another type test? What, what , what!!?? & hearts; Pammy
  • Calleen
    Calleen Member Posts: 411
    #12
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    Akiss4me said:

    Bottom line....
    I can't believe they neglected to tell you they saw an abnormality on your scan! But what is done, is done. What is going to happen now? Will they biopsy this? Will they run another type test? What, what , what!!?? & hearts; Pammy

    Everyone has said it all
    I want to know too!!I feel so bad for you!!! I hope you get on the phone first thing in the AM and get to the bottom of this!!!

    We will be waiting!!!

    HUGZ...Calleen
  • dmc_emmy
    dmc_emmy Member Posts: 549
    #13
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    Calleen said:

    Everyone has said it all
    I want to know too!!I feel so bad for you!!! I hope you get on the phone first thing in the AM and get to the bottom of this!!!

    We will be waiting!!!

    HUGZ...Calleen

    All I know---
    I have another CAT scan on Thursday, the day before my romantic get-away. I will get results from this test in about two weeks. Then more surgery to remove whatever is there, unless it's this "auxiliary spleen" and, in that case, they will leave alone. I was in too much shock to ask, "And if it keeps growing, what do I do?"

    ******************************************************************************************
    Every time I think about what happened today, my eyes just well-up with tears. After my CAT scan, I plan to ask more questions and, this time, I want a copy of my report. Until my romantic week-end is over, I'm trying not to think about any of this...like that dang pink elephant.

    If I had just been told, then I know I would not have waited until my next visit to show them how much it (whatever "it" is) has grown. I was told it was lymphodema.

    It's soooo ugly and I have to return to work looking like this! I hope I can hide it well enough so that others will not notice it. I bought some "fat" clothes today in hopes that no one will notice, because I know I will be so self-conscious about it. This cancer, and all that has come as a result from it, makes me feel so ugly.

    I've had so many surgeries: mastectomy, hip re-built, spleen removed, partial thyroidectomy, apendixdectomy, biopsy, port in and out, and minor dental surgery. Now, possibly, one more? If the growth came about because of my many abdominal surgeries, then what happens with more surgery? It goes away and, because of surgery it happens again?

    Sometimes, I just feel like throwing in the towel...but I have a daughter, husband, and beloved pets who still need me. I am really getting sick of the roller coaster ride that I seem to on, continually.

    I know that each of us have our own set of challenges and I appreciate the time you've taken to respond to mine. It means so much to me.
    dmc
  • lynn1950
    lynn1950 Member Posts: 2,570
    #14
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    Life Isn't Fair!
    dmc, I am so sorry to hear your news. It double sucks! You've taught us all the important lesson of keeping tabs of one's medical and test results. It's hard to believe they didn't tell you about the growth! I would be angry, too. Then, again, you don't want this thing, whatever it is, to steal your joy. Best wishes to you. xoxoxo Lynn
  • djteach
    djteach Member Posts: 273
    #15
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    Oh, DMC, I am so sorry to
    Oh, DMC, I am so sorry to hear this. There is no betrayal worse than that of the medical community. You are right to be angry. They had no right to keep that information from you.
    Have you thought about getting a 2nd opinion? I can't tell you what to do, so please let us know what you decide. Please know that whatever you decide, you have my support and prayers 100%

    Love and very gentle hugs,
    Donna
  • rjjj
    rjjj Member Posts: 1,822 Member
    #16
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    dmc_emmy said:

    All I know---
    I have another CAT scan on Thursday, the day before my romantic get-away. I will get results from this test in about two weeks. Then more surgery to remove whatever is there, unless it's this "auxiliary spleen" and, in that case, they will leave alone. I was in too much shock to ask, "And if it keeps growing, what do I do?"

    ******************************************************************************************
    Every time I think about what happened today, my eyes just well-up with tears. After my CAT scan, I plan to ask more questions and, this time, I want a copy of my report. Until my romantic week-end is over, I'm trying not to think about any of this...like that dang pink elephant.

    If I had just been told, then I know I would not have waited until my next visit to show them how much it (whatever "it" is) has grown. I was told it was lymphodema.

    It's soooo ugly and I have to return to work looking like this! I hope I can hide it well enough so that others will not notice it. I bought some "fat" clothes today in hopes that no one will notice, because I know I will be so self-conscious about it. This cancer, and all that has come as a result from it, makes me feel so ugly.

    I've had so many surgeries: mastectomy, hip re-built, spleen removed, partial thyroidectomy, apendixdectomy, biopsy, port in and out, and minor dental surgery. Now, possibly, one more? If the growth came about because of my many abdominal surgeries, then what happens with more surgery? It goes away and, because of surgery it happens again?

    Sometimes, I just feel like throwing in the towel...but I have a daughter, husband, and beloved pets who still need me. I am really getting sick of the roller coaster ride that I seem to on, continually.

    I know that each of us have our own set of challenges and I appreciate the time you've taken to respond to mine. It means so much to me.
    dmc

    dmc_emmy
    Hi Hun, OMG I wish I could come and help you. I have had the same lump (thing) and No one thinks I should worry. I know your frustration...and I am so hoping this is something simple

    You go on your romantic get-away and I hope you have the most wonderful time. You deserve it so much.

    I am going to keep you in my prayers every night and hope you will post back the best of news,

    Love, Jackie
  • chenheart
    chenheart Member Posts: 5,159
    #17
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    Sheesh! Of it's course
    Sheesh! Of it's course "something"!! Even we uneducated ( ha) ones knew that just by reading your original post about it. You knew it was "something" because it was growing where nothing should be...so yeah, you had a right to have it diagnosed! And being that they knew it was "something", it wasn't treated because???? Seems you are going to have to have to raise Cain, as it were. It doesn't matter if its a tennis ball, a second spleen, or Jimmy Hoffa~it doesn't belong there! Let us know how they plan on taking care of this; and if you need us, we are really a big group of hell-raisers...we'll get on them! GRRRRRRR

    Hugs,
    Chen♥
  • Marcia527
    Marcia527 Member Posts: 2,729
    #18
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    It happened to me too. I had
    It happened to me too. I had a brain scan when my hand started with the tremors and my onc never sent me the results. So I assumed it was fine. I just asked for them to be sent down to me because we moved and find the scan found a small meningioma. They couldn't do anything for it so I guess she thought it wasn't important to tell me. From now on I'm asking for copies of all tests.

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