Having a scan? Waiting on results? The waiting room is open!

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  • steelrose
    steelrose Member Posts: 3,798
    edited July 2015

    Wishing you "status quo," T.T:) Nothing to look at there, move right along!

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  • sandilee
    sandilee Member Posts: 1,843
    edited July 2015

    I get it, Tina. I always drive down to the imaging center to pick up a copy so I can see it before I see my onc. I like to be prepared and have questions.


    I want to keep up with you even though I'm no longer in the Fanny Pack! Good luck and let us know how it goes.
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  • sueopp
    sueopp Member Posts: 1,541
    edited July 2015

    Completely with you on this Tina. I think you deserve the very small courtesy of a report or call, whichever you choose, and promptly (you are Absolutely reasonable). Make the call, buddy, celebrate and let the poor practice of the Center roll off your back - it's them not you. SUE

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2015

    Called my onc's office and left a message. Getting a scan during a pre-holiday week was probably not one of my brighter moves!

    Tina

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2015

    Dodo here--the one who scheduled a scan before a holiday.

    Not hearing from my oncologist and following the suggestion of wise Sandilee, I picked up the report this morning. It indicates the lungs haven't changed since last year's PET-CT, which is great. There are a couple of new cysts in my liver and a couple of old cysts in my kidneys.

    An unfinished sentence in the report begins "No significant bony..." I'm annoyed by the sloppiness of this error, but since whatever it is is not "significant," I won't get too worked up.

    Oh, and I have " a hip prosthesis." Now there's a surprise!

    The radiologist's concluding "impression" is "No definite metastatic deposits are seen."

    I realize that these reports are often written with CYA firmly in mind, but was that qualifier "definite" really necessary? And what's with "deposits?" Have any of you encountered this terminology?

    Tina




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  • sandilee
    sandilee Member Posts: 1,843
    edited July 2015

    Tina- I think congrats are in order! That sounds like a stable scan, if not NED even! Of course you need to see your doctor and he may have something more to add, but overall, this is good news, right? Yes the terminology is a bit odd, but it sounds like the radiologist is covering his butt a bit is all. When they think it's new mets, mine will say "suspicious for metastasis" if they aren't sure but think it might be. Yours sounds much more positive with a big "NO ....mets are seen!"

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  • steelrose
    steelrose Member Posts: 3,798
    edited July 2015

    Tinaโ€ฆ Yay! So happy to read some good news today. I've had the no "significant" blah-blah-blah on my reports. Take it and run!

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2015

    Okay, ladies, thanks. You're right. I will take my good news and run.

    Sorry to seem more disgruntled than grateful. I am relieved, of course. But that damned "definite" continues to bug me.

    I'll stop fussing and be happier tomorrow. Promise.

    Tina


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  • annieoakley
    annieoakley Member Posts: 870
    edited July 2015

    Tina, sounds like good news to me, very happy for you. And yes one of my reports says suspicious for metastatic deposit in sternum so I have heard that terminology.

    Modum, any results? Thinking of you, please check in when you can.


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  • steelrose
    steelrose Member Posts: 3,798
    edited July 2015

    "Disgruntled" and stage IV go hand-in-hand, as far as I'm concerned. "Definite" wasn't necessary, but they're always suspicious of us at this stage, aren't they? I would ask your oncologist about that, Tina. Bwahhhahahhaโ€ฆ Be afraid, very afraid.

    I'm in a mood tonight, and I'm blaming the chemo:)

    Go celebrate!

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2015

    Steelrose, you are funny. Go ahead and blame the chemo. I've taken to blaming everything on Faslodex.

    Tremulous Trembling Tina (not)


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  • pajim
    pajim Member Posts: 2,785
    edited July 2015

    Tina, I get language like that.ย  It always sounds like they are CYA.ย  "No definite evidence of metabolically active disease."ย  Hedge their bets much?

    Tomorrow I go in for PET/CT.ย  I had oneย four months ago which showed "two somethings" [at the top and bottom of the spine]ย where previously there had been nothing.ย  So we waited.ย  This will be the definitive word on whether we (a) do nothing (please! please!), (b) radiate, (c) change treatments.

    Appointment with the doc on Monday.ย  What I haven't decided is whether to just wait or ping him for the results right away.ย  His previous NP would just send them along as soon as she got them, but he has a new one.ย  We'll see.ย  I also have the worry of being "that patient" even though he won't mind.ย  It's hard to know when to work within the system and when to buck it.ย  And believe me, they have a system.ย  A brand new one that they're all b---ching about.

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited July 2015

    I keeping trying to jump back into this thread and back track not miss anyone but I keep giving up, so I am just going to comment on the latest news:

    Mrs. M. and Tina, Sounds like awesome news!

    Pajim, Good Luckย to you!

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  • Modum
    Modum Member Posts: 59
    edited July 2015

    Hi everyone,


    I have been reading up on everyone and cheering silently for the successes and praying for the setbacks, but Musiclover has it right- it is hard to jump back in to the conversations sometimes! I do care about you all and really appreciate your support and care. (Hugs to you all!)

    Annie- thanks for asking re results ; ) I got a "8.5 out 10" on my results from my MO. 2 spots in liver grew, 3 shrunk- seriously?!?! Everything else the same. In his on-line notes he said he was calling me stable, but I sure didn't leave his office feeling that way! First stable for me, but with two spots that grew- it feels like a cheat to me! Sigh. He also said they had my old report in the system for the biopsy and they actually did get tissue, it confirmed breast cancer and receptors are the same. He is going to send me to a clinic for profiling- should be interesting.

    Next scans for me will be in the fall. I will continue on taxol until then. I am in a conflicted mood I think- annoyed I have to keep arranging my life around all of this, grateful it's all working to keep the stupid cancer at bay for now.

    Hope everyone continues to be ok, you are all in my thoughts.
    Maureen
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  • hansaim
    hansaim Member Posts: 278
    edited July 2015

    just wanted to share the ct results. Some lung mets have disappeared, and the largest one 8mm has shrunk. Bones show signs of healing. 4 cycles of Abraxane did well. Thanks for your wishes and prayers

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  • Bosco19
    Bosco19 Member Posts: 221
    edited July 2015

    that's good news Hansaim - praying you will get even better news next time


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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited July 2015

    Hansaim...yahoo for shrinkage...may it continue! ย  Divine & Tina...happy dancing for you! ย Divine...I was perfectly happy w/stable...and when my onc popped the R word, it kinda made me nervous! ย Won't have scans here til Oct, so I hope we aren't jumping the gun (I never used to have a negative nelly attitude...gotta work on that!). ย Anyhoo...good thoughts to all.

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  • Bosco19
    Bosco19 Member Posts: 221
    edited July 2015

    blood test results today - platelets dropped to 8 from 178 so back in hospital again. Same treatment as before - immunoglobulin and platelets infusions. More tests tomorrow on blood and bone marrow . Hoping for a quick result as our big wedding anniversary parties next week ... Any ideas welcome

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  • pajim
    pajim Member Posts: 2,785
    edited July 2015

    Results are in. I'm proud of my onc -- I didn't have to ping him. Maybe their new EHR system did the pinging for me.

    Report indicates cancer is slowly-slowly growing in the bones. The two new spots are definite, and one maybe additional spot. It's kinda equivocal. One could read it as "stable" as one of the lesions they saw four months ago isn't there any more and a new spot they see isn't on the CT scan.

    The rad onc just e-mailed that "in the absence of pain there's not much of a case for RT". Guess he doesn't feel you use RT as a "stave-it-off" mechanism. Strategy discussion on Monday.

    Well, my first real progression/treatment switch. I guess it was inevitable. Time to cry a little, then read the palbociclib label and thread

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  • sueopp
    sueopp Member Posts: 1,541
    edited July 2015

    Pajim, I surely am thinking of you this morning. I believe that you are going to switch treatments (?). So disappointing, I know and maybe scary too. When I have had to switch, I try to focus on the new and Better treatment - and getting better all the time. True, but hard just the same. Sending understanding and care your way. SUE

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  • Tina2
    Tina2 Member Posts: 2,943
    edited July 2015

    Pam,

    Rough stuff. Sorry to learn this.

    Is any kind of growth ("kinda equivocal") always a reason to change treatments? Do you know for certain you'll be switching to/adding Ibrance? No matter how we believe we've prepared ourselves, progression of any kind--slow growing or not--is a shock.

    I'm looking forward to learning the outcome of your strategy session. In the meantime, know that I'm hanging in with you.

    Tina

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2015

    pajim,

    Sorry to hear about progression. I do think you should have that discussion regarding rads. I have been, and am still, unclear about why some ro's use rads to "kill" bone mets, even eithout pain and other will use it only to alleviate pain. I realize that at stage IV, the little bugger cells are out and about in our systems, but I can't help but think that blasting existing bone mets can't hurt. Just my unscientific thoughts...
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  • 208sandy
    208sandy Member Posts: 2,610
    edited July 2015

    Pam - sorry to read this, hope the Ibrance is kind to you. Keeping you in my thoughts.

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  • pajim
    pajim Member Posts: 2,785
    edited July 2015

    Thanks for all your kind words.

    Rad Onc says "no rads" (via e-mail). He seems to be a "pain only" guy. I'm writing to ask his rationale. I also plan to ask my onc his rationale for changing (or not changing) treatments. I know some docs believe in changing treatments at the first sign of growth, but I know he doesn't feel that way, else we would have changed four months ago. So what does he believe constitutes a reason to change? I don't know. This has never come up. Like I said it's my first time.

    It doesn't feel like the cancer is exploding, if you know what I mean. My husband wonders if it's possible we shouldn't do anything. I wonder if my onc is suggesting switching because he thinks I want to (based on our last discussion).

    Still its all quite unsettling.

    I'll report back on Monday.

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  • Bosco19
    Bosco19 Member Posts: 221
    edited July 2015

    pajim

    Sorry to hear about this. I had one bone met and was told same thing about rads only for pain. As my leg ached with it, I was given rads. No pain now and no sign of others. I was also given Zometa as an additional treatment. I changed treatment from Xeloda to Gemcitabine and Cisplatin and Keytruda only on the next progression to lymph nodes. Now all subsiding.


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  • MusicLover
    MusicLover Member Posts: 4,225
    edited July 2015

    Pajim, Your scan results do sound confusing, I wonder if you know the SUV's for these lesions and if they are high or low numbers. I wonder if your tumor markers have changed much? Have your tm's been a good indicator of your cancer? I do hope that things get better for you and quickly.

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  • pajim
    pajim Member Posts: 2,785
    edited July 2015

    The SUVs are the 6.9 and 5, up from 4.2 and 5.2. The newest ditzel measures 2.7. It may or may not be there next time they scan. The third mention from last time is gone.

    I don't know the standard error or variation in SUVs (another question for Monday). Is 5-7 high or low? I saw the PET from four months ago and it sure looks bright on the computer screen. Flashes right out at you.

    We don't measure my tumor markers. Well, we did once or twice but they were in the normal range. My onc is a "symptoms" kinda guy.

    I've read both reports several times and there's simply nothing directive. Does anyone else get results like this? So equivocal?

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  • Bosco19
    Bosco19 Member Posts: 221
    edited July 2015

    just had bone marrow biopsy to see if they can work out why my pesky platelets keep dropping (down to 13 now). Preliminary results this evening

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  • Momonana6
    Momonana6 Member Posts: 186
    edited July 2015
    Hi Bosco..."sending prayers that it all is within a reasonable fix. It Is so hard to wait and chase those "dark corner critters away". Hugs for a good result and plan. Peggy
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  • diana50
    diana50 Member Posts: 2,134
    edited July 2015

    having spinal tap this morning at the hospital. Looking ๐Ÿ‘€๐Ÿ‘€ for nasty cAncer cells. Praying fluid is clear and I can put the brain lesion (they believe to be mennigoma b9) to bed for ever. ๐Ÿ‘๐Ÿ‘ Yep

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