PET scan shows recurrence that doctor forgot to tell me about

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mslrg
mslrg Member Posts: 293
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

I am just about as scared and angry as anyone could be! I had a dx of stage 2 iDC back in September of 09. Had bilateral mx, chemo, and recon. All test results were coming back fine. I lost 100 pounds, established a work out routine, changed all my eating habits, and thought I was doing great. Then insurance got changed over the summer and I had to change all my doctors. I got a referral to an oncologist I did not like. He ordered a PET scan, which I had on October 1st. The radiologist told me my doctor would call with results. He never did. Maybe I shouldn't have expected that the doctor would call me if My test showed a malignancy, but doctors have always told me they will only call if it's something that needs a follow up. Anyway, I decided to change oncologists, and because of medical groups holding onto my records I didn't see my new oncologist until today, February 7th. She told me my PET scan showed cancer in two lymph nodes! wTF? You mean, there was evidence of a recurrence for the past 4 plus months and no one thought to inform me? So now I have to get another PET scan, biopsies, probably surgery and radiation. I just cannot believe I am going to go on this journey again! And I do feel members of my medical team dropped the ball as well.

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited February 2014

    I am so sorry this has happened to you. You are right, someone dropped the ball but I don't know how much harm was caused by the four month delay. Maybe some, maybe none...you probably will never know for sure. You have every right to be upset and you should get an explanation from the previous onc at the very least. But the worst is having to go through all the treatments again. I do hope you get everything back under control and for a long time.  I'll be thinking  and praying for you during these next few days as you get retested and retreated. Good luck!

    Amy

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  • bevin
    bevin Member Posts: 1,902
    edited February 2014

    Dear MSLRG, do you know why the first On ordered the PET, did symptoms or blood tests lead him /her to order it? I'm glad he was at least proactive in getting you a scan, its horrible to know the office and doctor didn't follow-up with you.  I'd ask for copies of all of you records , tests and  including doctor notes from that office. They are required to give them to you, theymay charge you a.10 cent per page copy price or something nominal. This way by getting copies, you'll se what they knew and were thinkkinh.

    That being said, its good you're with  a new doctor and ensure its someone you feel comfortable with. You may them, they work for you so don't be afraid to find a doctor that you get along with and trust.

    I wish you strength as you go through this and pray you'll be okay. Keep us posted.

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  • mslrg
    mslrg Member Posts: 293
    edited February 2014

    Thank you,, AmyQ. & bevin. There were no tests that the previous onc gave me for ordering the PET, except that I was a new patient. All my blood tests were fine up until then. I am glad I had the PET, but don't see the point if he wasn't going to bother to call me with the results. This is obviously a case of a failed communication system--each doctor thinking the next guy would make the call, and no back-up system to make sure the call was made. My family and friends are all livid and telling me I need a medical malpractice lawyer. Right now, I just want to get those tests done so that I can get my treatment started, if necessary. Time to get affairs in order so I can focus on me. Oy! Thanks for your kind responses and prayedrs.

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited February 2014

    No-one can tell you that you have cancer in those nodes until they are tested. The fact that your oncologist said you have cancer in these nodes without the biopsy means you should find a new one! It might NOT even be cancer.  There is still hope! And yes, it is rediculous that no-one called you! 

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  • mslrg
    mslrg Member Posts: 293
    edited February 2014

    follow-up. After much waiting on hold and effort on my part, I am scheduled for a new PET on Tuesday the 18th, and follow-up with onc for the results on the 21st. I found out today that the radiology company that I have been going to for years for everything from X-rays to mammograms, MRIs and PETs just merged  a bunch of it's facilities with one major medical group ( who I got my first cancer treatment with) and a bunch with another major medical group ( who I'm with now). The merger became official on February 10th. No wonder they lost my records. I bet I'm not the only one this happened to!

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited February 2014

    mslrg, sounds like the merger could have been a problem, but if i was your doc, and ordered the test, and saw the result, i would have called you, either to come in, or right then, and the radiologist would have seen it right then and shot him the results immediately. a persons life could be hanging in the balance, and anyway, basic diagnostic tests were not done, the main resaon insurance companies just sign the check when there is a question of malpractice. i am sorry that this has happened to you, i am still going to keep my fingers crossed for you, but i am just going to go ahead and be pissed at that doc, for you, too! 

    Kathleen1996 is ABSOLUTELY CORRECT in what she said too.  Good for you for being so good at taking care of yourself in '09.

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  • mslrg
    mslrg Member Posts: 293
    edited February 2014

    thanks everyone. I had my redo PET yesterday.i get full results on Friday,but my onc. called yesterday to tell me the tumors have "improved", which I guess is good news. This has helped me exhale a little, but not entirely.been doing this cancer thing long enough to know that scary surprises are around every corner.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited February 2014

    Ms.LRG, so happy that the tumors have improved. i wish for you for them to keep going in that direction till they completely dissapear! such good news. Glad that you came back to tell us.

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  • CajunQueen
    CajunQueen Member Posts: 63
    edited March 2014

    Hi Mslrg, I was just reading this thread and was curious how you are doing?  I was very recently surprised with mets to my spine on a PET CT scan that I only had bc I flat out insisted that they prove to me that the cancer was gone from initial Stage 3c diagnosis from 10 months ago.  I am currently in the panic & wait phase... Biopsy in a week or so.  Hope to hear the lymph nodes weren't cancer!

    ~Amy

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