Recurrence.......or maybe not?!

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peculiargirl
peculiargirl Member Posts: 68
edited April 2018 in Just Diagnosed With a Recurrence or Metastasis

Hi,

My GP insisted on a CT scan for pain in my rib cage that comes and goes since November. I thought it was silly because I had just had my cancer bloodwork done 2 weeks prior, and all was good. He called with results on Friday, 5 cm tumor which has caused two fractures in left lateral 9th rib. Of course, MO office closed on Fridays, so I called RO, the director of the cancer center. Met with him yesterday - advanced metastatic breast cancer. He marked me for rads right away, planning on 10 rad treatments starting as soon as insurance approves them, sending me for a PET and Brain MRI. THEN I met with the MO this morning. He says he doesn't think it's cancer. Wait, WHAT?? Yesterday, the RO - IN THE SAME CENTER - just across the hall, was telling me the worst. Today maybe, maybe not. Waiting on insurance approval for a PET scan, and then MO would like a biopsy as well.

I wish I was better at waiting. I know the two of them will talk about me at their weekly meeting - I just wish the roller coaster would even out!!

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

    Sorry about this roller coaster you've been thrown on. What does MO think is responsible for the imaging finding? Hoping he is correct, but I can see how frustrating it must be to have such diverging opinions. I hope they can get you in for the PET scan soon, and that you get more information SOON!!!!!

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  • peculiargirl
    peculiargirl Member Posts: 68
    edited March 2018

    He thinks it might be a plasmacytoma - I googled it.

    A plasmacytoma is a discrete, solitary mass of neoplastic monoclonal plasma cells in either bone or soft tissue (extramedullary). The types of plasmacytomas are as follows: Soft-tissue or nonosseous extramedullary plasmacytoma (EMP) Solitary bone plasmacytoma (SBP) Multifocal form of multiple myeloma.

    It can be present as a discreet solitary mass of abnormal plasma cells, in which case it is termed a "solitary" plasmacytoma or it can be present as part of a systemic disorder - called multiple myeloma. Multiple myeloma is a type of blood cancer of the plasma cells which are found in the bone marrow. He thinks it's solitary.


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

    Well it is annoying to any "oma", but a solitary plasmacytoma sounds better than mets. I hope you can get a PET and a biopsy soon.

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  • peculiargirl
    peculiargirl Member Posts: 68
    edited April 2018

    argh!!! Now the insurance company has DENIED my PET scan!! What? I have a head MRI scheduled for Wednesday, and it's been approved, but how can they deny my PET scan?? How frustrating! I'm so bad at waiting.......

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  • Emily2008
    Emily2008 Member Posts: 605
    edited April 2018

    Ugh, how infuriating!

    I'm sure your docs will call insurance and given them clinical reasons for ordering the PET. If not, make sure you rattle their cages to get it done.

    It's not unusual to have a denial as the initial response, especially when they've approved imaging so close together (CT and MRI). I'm wondering why the PET scan as opposed to a needle biopsy of the area. Unless the spot on the ribs is really hard to get to?

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  • peculiargirl
    peculiargirl Member Posts: 68
    edited April 2018

    Good Question, Emily2008 - RO ordered the head MRI, MO ordered PET scan and said we'd think about a biopsy after getting the test results. I didn't think to ask why PET scan first -- but I'll be asking tomorrow for sure!

    Kathy


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  • Emily2008
    Emily2008 Member Posts: 605
    edited April 2018

    Any update from your appointment?

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  • peculiargirl
    peculiargirl Member Posts: 68
    edited April 2018

    Thanks for asking, Emily2008!

    Had the MRI yesterday - RO says I DO have a brain! He said there's nothing in the brain that shouldn't be, but there is a suspicious area on my skull bone. He also said that the radiation simulation revealed 4 tumors - no, tumors is MY word. He said something different - spots? areas? My head is spinning so much I can't remember exactly, and of course I didn't write anything down. My husband was with me, and he doesn't remember either. After we left, and we were trying to remember everything the RO said, I VERY GENTLY suggested that maybe I should have a good friend (a retired nurse) go with me to appointments to help me navigate the sea of medical jargon, and my husband was hurt. So I guess I need to write things down - and maybe ask for permission to voice record with my phone. Anyway, spine and both sides of my ribcage are involved. RO's original plan was 10 fractures radiation, but now he's saying 10 on each side, 20 total to shrink the areas of concern. STILL WAITING for PET scan approval - then I'll go back to the MO for his plan. When I checked yesterday, the nurse was on the phone with the insurance company. If I don't hear anything by early afternoon, I'll be calling them back.

    So RADS start Tuesday - We're going to Florida tomorrow for a long weekend with my sister, to celebrate her husband's 50th birthday, flying home Monday night. I haven't told her yet because I don't want to ruin the weekend. I'm thinking maybe I'll talk to her Monday before we come home - a conversation that I'm really dreading, but I also NEED her prayers and support.

    And why the PET scan before biopsy? Well...........I forgot to ask. SO frustrating! I'm sure glad the RO says I have a brain - I'm beginning to wonder.......

    Kathy

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

    So sorry you have to go through this. I would ask your hubby if you can have him there in addition to a friend. He can be there for emotional support and to ask questions, and your friend can scribe.

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  • peculiargirl
    peculiargirl Member Posts: 68
    edited April 2018

    KBeee, I should ask the Dr. if that would be OK. I can't imagine he'd have a problem with it. And my friend is a friend of my husband's, too.

    I'm so blessed to have great friends and prayer warriors, a wonderful nurse and a great social worker at the cancer center who make sure nobody falls through the cracks, a cancer center 10 miles from home and 2 miles from my job. There truly are a lot of positives........AND in 25 hours, I'll be on a plane headed for Florida. It was 28 degrees when I came to work this morning, and I think they're calling for snow tonight. I'll be SO GLAD to spend the weekend in the sun with my sister and her family, and that will help me be ready to start round 2 vs. cancer on Tuesday.

    Kathy

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