Possible bone met

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I was diagnosed with IDC on 9/19. After, I had a PET scan done, and my BS told me it was clear. I read the scan results and it said mild uptake on L2 vertebrate with SUVmax of 2.6. No CT correlate. He doubts metastatic cancer, but cannot difinitively rule it out. My MO called me yesterday and said he is 99% sure it is a Hemangioma and to not worry. Today he calls me again and says he consulted with a few other radiologists, and now he’s 90% sure it’s not cancer. What about that 10%!? He says I can have an MRI done but that’s may not give a complete answer either. I’ve already started chemo.

Do I hold onto the hope that I’m the 90% that’s not cancer? How am I supposed to continue on fighting with this cloud of uncertainty?

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Comments

  • RandyRat1
    RandyRat1 Member Posts: 26
    edited October 2018

    Hi Fritz,

    My “2 cents” would be to have every scan available, my 6/2011 dx was IDC Stage 1, after lumpectomy, I was told I didn't need Chemo, I had rads & 5 yrs of Tamoxifen, which ended 8/2016; my back and hip began hurting 8/2018 . . . X-rays normal, 3 wks of PT and the pain was still there. Had an a Lumbar MRI 10/11 . . . the darn thing must of lit up like a Christmas tree cuz they were calling w/ my results while I was still in the dressing room :( Multiple & Extensive Suspicious for Metastatic Disease :( If a scan is offered and available do it. My PET/CT is tomorrow morning

    Best of Luck and my fingers are crossed youare in that 90% it's a benign hemangioma.

  • Denise-G
    Denise-G Member Posts: 1,777
    edited October 2018

    So sorry - it is a heavy cloud. I had a "growth" on my leg that showed up on bone scan after diagnosis of Stage 3 Her 2 Pos BC. They sent me for an MRI which was inconclusive showing as "mild uptake". In the interim, I started chemo. Finally, an old fashioned regular x-ray gave them a better view and my MO and Radiologist determined it was benign and to keep watch. I'm now 7 years out. It was benign, but since it was inconclusive at that time it terrified me for years. Everyone forgot about it but me!

    Do what you need to do to give you peace of mind.


  • xxyzed
    xxyzed Member Posts: 230
    edited October 2018

    If you are doing chemo anyway couldn’t you just ask for a rescan at the conclusion of chemo. That is what they suggested for me when my adrenal gland was slightly outside their normal parameters but they didn’t believe it to be anything suspicious

  • Fritzmylove
    Fritzmylove Member Posts: 330
    edited October 2018

    Yes, I will have another PET at the end of chemo. I just can’t imagine living with the “what if” for the next several months.

  • Newfromny
    Newfromny Member Posts: 139
    edited October 2018

    It seems you went quickly from dx to chemo, how is your chemo so far? I am still going through tests, I have a PET scan tomorrow that I am so nervous about. I’m so glad we can all be here for each other. These days are so emotional, as I’m writing this I just had 2 calls from doctors to follow up with cardiologist for more testing before chemo

  • KBeee
    KBeee Member Posts: 5,109
    edited October 2018

    If it will not alter treatment, assume the best until proven otherwise.

    The uncertainty is hard. Even once treatment is done, the uncertainty is hard; every time you have a new pain, etc. we all find ways to cope, but for now, assume it is benign. An MRI is reasonable, and you can ask for that, but every PET or CT adds more radiation which increases cancer risk. I hope you are tolerating chemo well.

  • wenweb
    wenweb Member Posts: 1,107
    edited October 2018

    Hi everyone, I haven't been on the site for a while. I celebrated 9 years out at the beginning of September, just prior to my yearly mammogram. shortly after my annual onc visit. I began to have pain on (what seemed to be) a rib on the right side, same side as my original IDC stage 1 in 2009. I reported it when I checked in for my mammogram, and they changed the code to a diagnostic mammogram rather than a routine yearly screening. It was normal, but I was told I should have an MRI since I was complaining of pain. The MRI was also normal. I saw my oncologist today who ordered a bone scan, after determining for certain that the pain was on a rib, not my breast. I asked her if I should be worried, and she said "maybe a little". I asked her what is the percent of recurrence for those who were stage 1 with negative nodes. Right off the bat, she said 2%, and laughed because she said she only knew that because she is currently writing a paper... After that, she spoke openly and honestly with me about what if it turns out that I have bone mets. She said there is a specific type of bone mets with BC, which involves only one location, and even though you are considered stage 4 at that point, that it is completely curable. Of course if there are more spots, thats a different story...I haven't shared any of this with anyone. I have been divorced for just over 4 years, and don't want to concern anyone in my family prematurely. I am concerned, but not overly worried, but that's why I'm here...Anyone with a similar story or situation?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2018

    Best of luck with the bone scan wenweb...it's great that you are armed with good information now, and thanks for sharing it with us. I wonder why a bone met might show on a bone scan if not an MRI...but then I shouldn't because we have ample stories of weird misses or false negs or false positives...arggghhh!! Let's hope the bone scan backs up the MRI finding. Thinking of you.

  • wenweb
    wenweb Member Posts: 1,107
    edited October 2018

    Astrid, Thanks for your reply and the thoughts :>) You've got me thinking as to why a rib/bone met might not show up on an MRI. The only thing I can think of is that they weren't specifically looking for anything other than what might be in my breast...

  • RandyRat1
    RandyRat1 Member Posts: 26
    edited October 2018

    hey wenweb,

    I just celebrated 7 years NED when bone pain hit me in August, as posted above. My PETScan made me appear like the Little PolkaDot Elephant on the Island of MisFit Toys. Bone Biopsy is next to confirm what's it is and if it remains HR+/HER2- this is not a road that I or my medical team thought that I would be traveling; but apparently spread with Stage1a/Grade 1 no nodes happens. Sorry, that probably Wasn't the story outcome you wanted to hear, so I'm Sending you 'clear & negative' scan vibes.

  • wenweb
    wenweb Member Posts: 1,107
    edited October 2018

    Hey Randyrat1, I really did want to hear this, which is one of the reasons why I posted. I am so sorry for your bone mets after 7 years of NED. Who knows how long this stuff is going on before it's discovered. Perhaps longer than I care to think about. At times it irks me that they don't routinely check certain things to look for recurrence, but it would probably be the patients like us that they wouldn't check because our risk is so low. Did you have the Oncotype test? It's been so long now that I don't know if that's exactly what the name of the test is. I call that my recurrence number was pretty low, maybe 14, I don't know if that sounds right or not. Thanks for the "clear and negative vibes". I'll let you know about my outcome, but I'd like to stay in touch regardless. Best...

  • leenso52
    leenso52 Member Posts: 31
    edited October 2018

    To Fritz and all. Was recently diagnosed with IDC high grade same breast as DCIS 4 years ago. When I went to hear of the biopsy results I told my Surgeon I'd had what felt like bone pain in my right lower back and hip for 6 months. He ordered and I had a bone scan. Negative on the hip but spots lit up lumbar region especially the disc at L 1 and 2. I am 66 with some arthritis but since they could not rule out mets I had an MRI which showed no mets! "Just" nasty degenerative changes, herniated disk L 1, 2 and narrowing through out most of my spine with scoliosis. So yes, relieved, but now dealing with this painful issue. And my date of surgery and node dissection is not until November 29th! Doctors are going on, or already are on vacation. My tumor is estimated at 1.6 cm. Scared. Thanks

  • pupmom
    pupmom Member Posts: 5,068
    edited October 2018

    Lee, first you said no mets, then you talked about having a 1.6 cm tumor. I'm confused!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2018

    To all in the thread waiting for clarity and resolution...

    Thinking of you this morning and hoping for the best outcome with your scans and Newfromny with your cardiologist.

    I hope you do get an MRI Fritz m.l. especially if the PET shows same again or instead of PET.

    Randyrat...I so hope your biopsy comes back free of cancer dx.

    Leenso, thatwas a reassuring story but so sorry for your pain.

    Wenweb... do let us know how the bone scan goes.

    Me...had a bone scan 1st for months of deep aching leg pain...nada for bone mets but both hips lit up for probable bursitis. I am asymptomatic for that though....after my lovely GP with sports interest tested and tested...he agreed that this ache and peripheral foot burning too, is not bursitis related. He sent me to the Sherlock Holmes of sports physicians...or should I say Dr. G. House..() who was so lovely and painstaking in examining. So nice to be listened to isn't it!!

    MRI for me tonight..but not on leg... on lumbar region as his hunch is something there causing both leg ache and peripheral foot burn sensation. Hmmmm...

    Would a pinched nerve cause prolonged ache?

    Anyway...you are all in my prayers today. Xx

  • HersheyKiss
    HersheyKiss Member Posts: 550
    edited October 2018

    Astrid, yes. An impinged nerve can cause prolonged pain and other sensations. Spinal stenosis causes similar sensations. An MRI will detect stenosis straight away. Prayers to you tonight.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2018

    Thamkyou H.K!

    I so appreciate that.

    Now I am off to google 'stenosis' (lol).

  • leenso52
    leenso52 Member Posts: 31
    edited October 2018

    My best to you Astrid. Please let us know the results of your MRI tonight.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2018

    will do leenso, thankyou.

  • RandyRat1
    RandyRat1 Member Posts: 26
    edited November 2018

    Good Morning All,

    Yesterday's biopsy wasn't as bad as I feared, I was able to trick or treat with my little Ghouls :), I thought I might regret that this morning but I'm not feeling any worse then I have been so yay! Now just waiting for the results, I meet with Med/Rads Oncs first thing Tuesday to go over the plan to Kick cancer's A$ again, cuz I'm not done with all the nagging & yelling I've got to do ;)

    Pup- I think the tumor Lee referred to is the recurrence in the Breast

    Astrid- thanks for the well wishes, sending you the best as well

    Wen- I do not believe that the OncType Text was performed, I don't recall that ever being mentioned, I will ask my current Onc on Tuesday if she came across it in my file, it's my plan that she consults/confers with my original Medical Onc. The more Brains working on this the better for everybody! Id be more then happy to be the Poster Boobs for the 1st 'Cured Boney Mets'.

    Fritz - hope you are feeling well and handling the chemo w/o too many SE's

    (((HUGS))) TO ALL, I might have to 'move' boards/topic but I'll keep the thread posted


  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    so glad the biopsy didn't hurt too much randyrat. Hoping and praying for a good result from it for you.

  • wenweb
    wenweb Member Posts: 1,107
    edited November 2018

    RandyRat1, Yay that your biopsy went well for you. Now lets hope that the results do to! Thinking of you!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    sports physician called re MRI- not much to see he said, so another MRI very early wed. morning...this time hip, buttock hamstring. The ache is ever-present and I hope something shows so that I can start some sort of Tx or therapy asap. the search continues! :-D Thinking of all in this thread.

  • KBeee
    KBeee Member Posts: 5,109
    edited November 2018

    Hoping you get answers!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    Thanks kbee...me too.

    Ever grateful it is does not seem to be BC related but a bit bewildered. :)

  • RandyRat1
    RandyRat1 Member Posts: 26
    edited November 2018

    well Looks like I'm moving Forums! Path report is in and Positive for Maligant cells; Metastatic Adenocarcinoma, consistent w/breast primary (Gata-3 Positive, appropriate reactive control).

    ER+ (80% of tumor cells w/intermediate to strong nuclear staining) [OT * was >95% ALLRED 8]

    PR- (<1% of tumor cells w/weak nuclear staining) [OT was 75% ALLRED 7]

    HER2- by IHC 1+, not over expressed [OT was also <1%, score of 1+ by IHC]

    *Original Tumor


    Best Wishes and Outcomes to Al

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    Oh no R.R.

    I am so sorry for your news.

    Will keep up with your journey in the thread you re-locate to.

    gentle hug.


  • wenweb
    wenweb Member Posts: 1,107
    edited November 2018

    RandyRat1, I am so sorry to hear your new I wish you the best on this difficult journey.

  • wenweb
    wenweb Member Posts: 1,107
    edited November 2018

    I would like to thank everyone for their thought's and support. My bone scan came back negative, including the fact that my thumb arthritis didn't even show up. I was too surprised by the results to question why I'm having pain on my ribs. I will follow up when I "get it together".

  • KBeee
    KBeee Member Posts: 5,109
    edited November 2018

    wenweb, great news!

    Randyrat, I am sorry for the devastating news. Hoping the treatment plan gets you to NED for years and years.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    wenweb, that is just such wonderful news!

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