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Thread: Scan Today

  1. #1
    Top User mccindy's Avatar
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    Scan Today

    Hello everyone.
    Had my usual 6-month scan today. I was hoping for the usual "all-clear", but that was not the case. Doc says she sees a 'small smudge', and showed it to me. It looks like a white blurry edge on the black hole where my tumor was removed originally, and where it has been dark before this.
    She says it isn't tumor mass, per se, but does indicate the cancer cells are growing again to the point where they can be seen on the scan. So at this point, not enough for treatment because she doesn't want to use up my lifetime limit too early (she says studies show treating it early hasn't lengthened survival) but would rather scan again in six months and treat once there is a larger mass to aim for. She doesn't think surgery will be an option because of the location - that I will lose either my ability to speak and/or use of my right side. Prepare for radiation in the next six months to year, depending on growth rate.
    The good news is that there is no sign of upgrading. They did two types of contrast - one is the usual type that checks for upgrading, the other is a new one that looks for new sources of increased blood flow in the brain. Neither was positive on my scans.
    4 years in May since my original diagnosis.
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

  2. #2
    Oh that sucks. Crazy news. Would the dr order a scan in 3 months ? 6 months seems like a long time. I am not sure I'd be comfortable with that. The uncertainty of these brain tumors makes for such anxiety. I wish you only the very best and that it doesn't grow further

  3. #3
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    I'll be thinking of you and hope for the best on your next scan. I agree I'm not sure I could wait 6 months knowing there is something questionable going on, but if its slow growing, or anticipated to be slow growing I'm not sure a 3 month scan would shed much more light on the situation. Would Proton Therapy be an option, or cyber knife? Just something to keep the radiation much more pinpointed to where it needs to go especially if you are starting to get in or near more sensitive areas like speech function would be my big concern. IMRT is ok but def if available I'd check into other options like Proton therapy or cyber knife for more precision. Best of luck to you, will be keeping you in thoughts and prayers.

  4. #4
    Top User David52's Avatar
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    Quote Originally Posted by mccindy View Post
    Hello everyone.
    Had my usual 6-month scan today. I was hoping for the usual "all-clear", but that was not the case. Doc says she sees a 'small smudge', and showed it to me. It looks like a white blurry edge on the black hole where my tumor was removed originally, and where it has been dark before this.
    She says it isn't tumor mass, per se, but does indicate the cancer cells are growing again to the point where they can be seen on the scan. So at this point, not enough for treatment because she doesn't want to use up my lifetime limit too early (she says studies show treating it early hasn't lengthened survival) but would rather scan again in six months and treat once there is a larger mass to aim for. She doesn't think surgery will be an option because of the location - that I will lose either my ability to speak and/or use of my right side. Prepare for radiation in the next six months to year, depending on growth rate.
    The good news is that there is no sign of upgrading. They did two types of contrast - one is the usual type that checks for upgrading, the other is a new one that looks for new sources of increased blood flow in the brain. Neither was positive on my scans.
    4 years in May since my original diagnosis.
    Cindy,

    You remain one of my major heroes......hang in there.......Here's a hug.....Much love

    David
    65 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
    Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED. Scanziety still sucks.
    5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
    Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    1 yr. post transplant blood work fine; clean scan. No GvHD so far.

  5. #5
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    Oh dear. That's too bad. A clean scan would have been better, but at the same time, it sounds like she's not panicking. There are at least the good indications about no angiogenesis (if I'm understanding that correctly) and no sign of an upgrade.

    Allysheedy, the six month scan interval is not unusual for a grade II astrocytoma, and the fact that the doctor didn't order an earlier scan suggests that she's not regarding the situation as particularly dire.
    Last edited by GBMsibling; 03-21-2017 at 04:02 PM.

  6. #6
    Top User mccindy's Avatar
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    Quote Originally Posted by GBMsibling View Post
    Oh dear. That's too bad. A clean scan would have been better, but at the same time, it sounds like she's not panicking. There are at least the good indications about no angiogenesis (if I'm understanding that correctly) and no sign of an upgrade.

    Allysheedy, the six month scan interval is not unusual for a grade II astrocytoma, and the fact that the doctor didn't order an earlier scan suggests that she's not regarding the situation as particularly dire.
    This is definitely the case. Since it was on the last scan, but barely visible, and now again on this one, she felt she could see some rate of growth. and with no sign of upgrade and no angiogenesis (that is what she said), she said she feels confident about the slow rate of growth and not needing to have an additional scan.
    She did mention it's possible I won't need radiation after that next scan, but might even be able to wait until the further scan, but it didn't sound like she was very confident of that. Either way, I know it's coming.
    As far as cyberknife and other possibilities, she did say she wants me to consult with the surgeon first to be positive he doesn't have options she's not thinking of, so I'll ask about those. I do know that he was very aggressive with my first surgery and had worries about causing damage to my motor cortex then, since my tumor was right alongside it. I am starting to have some problems with dropping things and weakness in my right hand, and with forgetting more words and mixing up words when talking, so she thinks that is from the growth and surgery would cause more harm.
    She did mention she doesn't think chemo would do any good at all with my kind of tumor.
    She's very forthright, I love that about her. She said "don't forget about all the studies proving 5 year survival, even after recurrence".
    Thank you all for your love and support, it means so much to me.
    ((David))
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

  7. #7
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    Neuroblate sounds really interesting too as far as treatments go. I work for an insurance company and pre-authorized one recently I'm thinking it was at Cleveland Clinic in Ohio. by surgery. I'm a huge believer in quality of life and what will give me the best treatment with the fewest side effects/deficits, but that is me. I hope you don't need any interventions any time soon and if you do can find the best option possible with the least potential for problems.

    Here is an article on neuroblate from Cleveland Clinic. Looks like it has primarily been used for GBM but article states it could potentially treat other malignant/benign tumors

    http://my.clevelandclinic.org/ccf/me...ient-Guide.pdf

  8. #8
    Top User mccindy's Avatar
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    Quote Originally Posted by catwoman View Post
    Neuroblate sounds really interesting too as far as treatments go. I work for an insurance company and pre-authorized one recently I'm thinking it was at Cleveland Clinic in Ohio. by surgery. I'm a huge believer in quality of life and what will give me the best treatment with the fewest side effects/deficits, but that is me. I hope you don't need any interventions any time soon and if you do can find the best option possible with the least potential for problems.

    Here is an article on neuroblate from Cleveland Clinic. Looks like it has primarily been used for GBM but article states it could potentially treat other malignant/benign tumors

    http://my.clevelandclinic.org/ccf/me...ient-Guide.pdf
    this is quite interesting. my doc had mentioned our surgeons are using MRI in surgery sometimes, so maybe this is something they are utilizing - I'll be sure to ask when the time comes. Thank you for the information.
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

  9. #9
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    Eugene, OR
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    Oh so sorry to hear there is growth. I'm glad to hear it hasn't upgraded. Will be thinking of you. Interesting about the two types of contrast too, didn't know they had that.
    Had surgery 10/21/14 to remove Grade II Astrocytoma in right temporal lobe. 95% or more resection. Undergoing Clinical trial through UCSF taking Temodar and Everolimus for two years total.

    1500mg Keppra, 600 mg Gabapentin daily

    I write a blog about my experiences at Lindseyroderick.blogspot.com

  10. #10
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    McC,

    Sorry to hear this news - it sucks when you are so used to hearing the 'all-clear'. I would also lean towards having the follow-up scan in less than 6 months if possible. But that's just me.

    There likely wasn't too different types of contrast - they would both be gadalinium. Normally they give it as a slow push then do the second set of scans 'with contrast'. It sounds like this time you had a scan 'with perfusion' - where they either give two doses of contrast - one slow and one fast (while scanning) - this is what they used to do at the NIH with me. The fast one (while scanning) shows the uptake of blood in the area being scanned. Rapid and messy uptake indicates likelihood of tumor (vascularity). Some hospitals just give the one fast push (while you are in the MRI) and measure the perfusion and then once it is in the bloodstream do the regular 'with contrast' sequences. I prefer the latter method - more cost effective, and less contrast agent exposure - gadalinium is not great for the kidneys.

    Good luck and I hope the follow-up is good news.
    Nikos

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

 

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