2 lesions on pelvic bone, one year after diagnosis

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beckstar18
beckstar18 Member Posts: 253
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Posting here to see if anyone can give advice, words of encouragement or share their personal experience.....

I was in the ER Friday night for bad abdominal pain. They did an abdominal/pelvic CT scan thinking maybe appendicitis and unrelated to the stomach pain they found 2 lesions on my pelvic bone. One is a 4.5cm ovoid (egg-shaped) heterogenous mass. The ER doc said it was suspicious, especially considering my history of BC. He told me to follow up with my oncologist first thing Monday morning. The radiology report said a bone scan or MRI is needed for further evaluation.

I just had my last Herceptin Dec 2, port came out three days later. Here I am thinking I'm finished with everything after chemo, BMX, hysterectomy (thanks to tamoxifen), and oopherectomy since I was ER/PR+. I am seriously on pins and needles. Trying to be hopeful for good news that it's benign but also trying to prepare myself for the worst so I don't lose it should it be mets. 

Any words of wisdom from you ladies?

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  • belleeast
    belleeast Member Posts: 653
    edited December 2013

    I don't really have any advice or experience,just wanted to give some encouragement.

    Until you have further evaluation,there is always hope it is benign maybe something caused by the tamoxifen? If it turns out to be mets,bone mets are very treatable and ladies here have lived a healthy life for years in remission. 

    I know the waiting is hard,good luck,hoping for good news for you (((hugs)))

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited December 2013

    I am so sorry that you are having to go through this. I can only say this - if it turns out that this is mets, the stage IV women here have a very close and loving network, and many of them have lived for a long time with mets. I often read the stage IV threads because I feel that it is a way of preparing myself 'in case'. It is somehow comforting for me to hear about their lives. I only wish I could give them the same comfort back. I wish I knew a way of making this easier for you - I can only send ((hugs)) and prayers for the best result. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    Just waiting with you, B, and trusting in speedy good news. Love you!

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited December 2013

    Steiner18 , thinking of you, sending positive thoughts for a b9 outcome....arrrrgg, never ends....I keep telling myself, my DH, that next week, I will get back to " normal",   Then something else pops up....

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  • beckstar18
    beckstar18 Member Posts: 253
    edited December 2013

    Thank you all. I'm trying to avoid Google and just keep my mind focused on other things today. I'm really glad my husband is off work through the New Year holiday so he can go with me to my appointment Monday. He burned a lot of his leave from work when I went through chemo earlier in the year, so he hasn't been to many appointments since. My mom and some friends have come along with me since then, but it will be nice to have him there this time.

    I still have the stitches in from my port removal. It's way too soon to be having to think about this! Holeinone, I think we all have a new "normal" now.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    That's SO GREAT that he is home and can take you!! Plus he can crack some heads if needed to get you answers faster! ;-)

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  • pajim
    pajim Member Posts: 2,785
    edited December 2013

    Steiner, I hope it all goes well.  Sounds like you need more tests to confirm anything.  CT scans do indeed pickup what they call "incidentalomas" -- weird things that require lots of other testing.

    Did they do a CT scan at your initial diagnosis?  Was there anything there at the time or is this new?  Herceptin usually knocks out the cancer cells--no reason to believe this is a tumor.

    Pam

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  • beckstar18
    beckstar18 Member Posts: 253
    edited December 2013

    I had a full body PET and CT scan at diagnosis and there was nothing on my pelvis at that time. There was a small 7mm nodule on my lung but that has not changed at all, as of my last CT scan results in August. So they think that one is scar tissue. But the pelvic lesions are new as far as I know, unless they were missed on the initial scans at diagnosis.

    And yes, dulcigirl (funny calling you that! :), my hubby will not have any problems insisting on seeing the dr and getting these tests done ASAP. He's the one who pushed me so hard to get in when I was first diagnosed. He lost both of his parents to cancer, poor guy--he's had enough of the big C in his life. I seriously prayed yesterday that God just give him a break.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    Praying for the same!! 

    I love that word: "incidentaloma." That's great!!! We have SO MANY of those and we always assume the worst! 

    B, you better wear something with big pockets today, cuz we're all going with you!! 

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  • pajim
    pajim Member Posts: 2,785
    edited December 2013

    New, huh? Well I hope it's nothing.  Good luck at the onc!

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited December 2013

    steiner - just wanted to let you know I'm thinking about you today and hoping your appointment went well. 

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  • beckstar18
    beckstar18 Member Posts: 253
    edited December 2013

    thanks ladies. I actually didn't get in today. Had to get insurance to authorize the scan so I have an appointment tomorrow for the bone scan. Hopefully it won't take too long to get results. Thanks for all the positive thoughts and encouragement!

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  • beckstar18
    beckstar18 Member Posts: 253
    edited January 2014

    Well bone scan came back all clear, but I do have a follow up with my oncologist today to discuss the CT scan results and see if we can figure out what exactly it was that showed up. I feel much better now that the bone scan came back okay, but still want to know what it is on my hip bone. I can see it clearly in the CT films, so there's something there just don't know what! This is the crappy part, always finding those abnormalities that are in most cases nothing to worry about but still worrying because we were unlucky enough to get cancer in the first place.

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  • lekker
    lekker Member Posts: 594
    edited January 2014

    Unless they can definitively tell from the CT what those lesions are, you might consider asking for an MRI with and without contrast or a PET - or both!  There are benign things that can show up on scans but with your history, you deserve to investigate it until you're sure what they are.

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  • jenjenl
    jenjenl Member Posts: 948
    edited January 2014

    Yay to the clean bone scan.

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  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited January 2014

    I have an osteochondroma (benign bone tumor) on my iliac crest that showed up on a CT scan. One radiologist mentioned it on one of my CT scans, another radiologist didn't (I just happened to be reviewing my before-and-after chemo scan reports). It was probably there, too, when I had a bone scan, but neither the radiologist nor my oncologist mentioned it. I've found that some doctors document every little abnormality you have, while others just list the more pertinent facts.

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  • beckstar18
    beckstar18 Member Posts: 253
    edited January 2014

    Jenjenl, how are you?? Long time no talk. I see you're having a DIEP in a couple weeks. Are you ready?? 

    Met with my oncologist today. She sat down with me and opened up the file of my CT films on her computer. Had another oncologist review them with us too and neither seemed concerned at all about what they saw. In fact, they both said they had no idea what the radiologist had marked up on the CT images because they looked perfectly textbook. Since my tumor markers are good, bone scan is clean, and I'm not having any pain, she recommended no further evaluation at this time.

    It's so strange that one week ago I literally was a sobbing, emotional mess thinking I was doomed to die because my cancer had spread, and now all is normal. Oh the ups and downs we go through! My goodness, I have some great material for the book I'm writing.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited January 2014

    Steiner, happy for you....

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  • shoppygirl
    shoppygirl Member Posts: 694
    edited January 2014

    Very happy for you!  What an emotional roller coaster !!

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  • flimsical
    flimsical Member Posts: 42
    edited January 2014

    Steiner18 -

    I just read this thread -- I am going through a scare right now. I am so glad you are out of the woods! I was diagnosed last December and I have yet to be "out of treatment" and all I want to hear is "no evidence of disease!!" However, my rad onc just had me get a CT to see if there was anything lurking in my clavicle and axillary area as I'm nearing the end of radiation (I had quite a few positive nodes that were were removed) -- and he came back saying that was all clear, but there was an "area of concern" on my spine. Cue panic mode. I mean, I may sound like I'm taking this lightly by what I'm saying, but I am totally shitting myself. I was practically comatose for 24 hours after he told me this and that he was ordering an MRI to rule anything out. The next day, the nurse noticed I was silent and she attempted to talk me off the ledge... but it was talking to my rad onc again that really helped me. He sat down with me, explained everything, and even said "Normally I would pass something like this over, but with your history we have to follow up." Now I'm not saying I'm 100% relieved, but I have at least poked my head out from that dark place I was in. I have an MRI next Wednesday...

    What I'm curious about, if you have these answers, is what exactly did they see on your pelvic bone that was of concern? Did you actually see the images, or did they explain them? I realize everyone is different, but I am honestly just curious because there is a LOT of information out there about bone lesions and things, and as much as I'd like to say I'm staying off the internet, well, I'm not.

    I would really appreciate your input.

    Thanks!

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  • beckstar18
    beckstar18 Member Posts: 253
    edited January 2014

    Flimsical, I'm so sorry I'm just now seeing your post! Have you gotten any more information about what they saw on your spine? I think what your radiation oncologist said hit the nail on the head, "normally I'd have passed this over but with your history...." I believe that is what happened with the radiologist who read my CT scan. He saw some things and based on my history recommended they be looked into further. I saw the images because they sent me home with a disk, and he had it all marked up and measured on one of the images. But I figured I'm not trained to know how to read those so I was glad when my oncologist also took a look at them and she said she didn't see anything concerning. She felt the radiologist was being overly cautious because of my history. I hope that is the case for you! Although, it sure makes for an emotional roller coaster for us every time an abnormality pops up on a screening and it has to be investigated further. And like you, I have a hard time staying off the internet but we really have to so we can keep some level of sanity. 

    Please let me know how you're doing. I will pray for good news!

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  • flimsical
    flimsical Member Posts: 42
    edited January 2014

    My MRI was cancelled when while inside the tube they realized I have tissue expanders...with metal!! I guess no one thought to ask. Or they did, but maybe not all expanders have metal? Anyhow, no further scans were ordered at this time, by way of my rad onc and onc. Honestly I was relieved... I know, it's like digging my head in the sand, but the lack of concern is what eased me for a little while, because my rad onc doesn't mess around. I mean I am not fully calm... I am still freaking out and everything, just not quite as much.

    So, I'm going to see my onc tomorrow - hopefully just to hear "here's some xeloda, start taking it." I admit I am a little nervous. My oncologist usually is like "Oh it's nothing." SO, we'll see. I honestly don't even know if he saw the films. I will post an update when I get one! Deep breaths!!!!!!!

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  • beckstar18
    beckstar18 Member Posts: 253
    edited January 2014

    Flimsical...Oh dear, how stressful! I understand why you're nervous. Please keep me (us) updated. I'm curious to hear what your oncologist says.

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