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Can't decide to MRI or not

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Allison View Drop Down
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    Posted: Sep 17 2009 at 5:21pm
Hello all - I have been reading posts on the website regularly for about a year and a half and feel that I could use some direction from those of you with a little more experience. I am 45 years old and was dx in sept 2007 with trip neg IDC tumor; BRAC-. Had lumpectomy with snb (all clear), FEC, and Taxotere, as well as 32 rads. Treament and all went fairly well except for some residual neuropathy and a few other things that I find a little annoying. Anyway, I am currently experiencing an increase in neuropathy symptoms - BIG Time! In addition, I get dizzy and I can't seem to get to a place where my eyes work consistently and I am having a resurgence of cluster headaches. Overall, I think I just feel like crap. I was at the neurologists today and he doesn't feel that it all amounts to much of anything but agreed to brain MRI if it would eleviate some anxiety (The last brain MRI I had was almost a year ago). I guess I'm just having a difficult time not feeling like I'm being hysterical and wasting $ and insurance that I may need later. I had a big scare several months ago and was so relieved that my pain and weakness were the result of severe arthritis in my spine and not a met - I'm just now getting over that.

I have really taken this experience to heart and have tried to re-focus my energy on my family and my health since my treatment was completed. But when I get these crazy feelings that no one can explain it just really freaks me out! I don't want to live like this thing is lurking around every corner. I want to embrace the day and smell the roses and smile. I do not want to curl up and cry. However, there are times when I just feel like I'm smothering.I think the anxiety is just getting the best of me this evening.

Anyway, do I keep my MRI appointment and put my mind at ease even if it may be over kill? or do I cancel and chat with my oncologist at my next appt in Oct. Any thoughts?? Any advice would be appreciated.

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GRANNY View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote GRANNY Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2009 at 6:23pm
Allison,  I would have the MRI.  The stress of not knowing could make you sick.  We all handle things differently.  Maybe talking to a counselor would help with the anxiety if you feel it is a problem.  I wish I had some advice that would help you.  Best of luck and God bless.  Julia
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2009 at 7:08pm
Go for it Allison.  Once you get the all clear you'll feel much better.  (Your symptoms are probably just more spine arthritis).

Love,
Denise W
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ChrissieD Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2009 at 2:37am

Hi Allison,   I would speak with your oncologist and get the MRI.  It is likely when you describe your symptoms to your onc he/she would likely recommend a MRI anyway. 

Your piece of mind is very important and you will be able to let go of your anxieties once the MRI is complete and you get the all clear. 
 
Best of luck to you!
Chrissie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2009 at 2:45am
Allison:

I'd definitely get the MRI, otherwise you'll continue to worry.  Wishing you the best and let us know how the test results turn out.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Allison View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Allison Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2009 at 4:23am
Thanks to all of you late night owls and early birds. It's great to have a place to go when you feel that everyone else in your life has heard enough. I will keep my appt for Sunday morning and will let you know how it goes. I should get results tuesday from the neurologist's office.

Bless you all for being there!
9/07 IDC, trip neg, BRAC-, Lumpectomy with SNB (all clear) 10/07, FEC & Taxatere 11/07 - 2/08, 32 rads, 3/08 - 5/08.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote thenewme Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2009 at 6:31am
Although I absolutely understand your hesitation, I'm so glad you've decided to get the MRI!!!  As far as insurance, it shouldn't be a now-or-later thing.  When you're having definite symptoms, it should be covered, I would think.  Anyway, good luck with the MRI and definitely let us know how it goes!
DX: IDC/TNBC 11/08 5-cm Stage IIb Grade 3. Age 39. Double Mast 12/08 (prophy right) with tissue expanders . ACx4-Tx3. Suspicious IM node. 25 Rads. BRCA NEG.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vdq7015 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2009 at 8:37am

Allison, get your mri. I am almost 6 years out and still have painfull neuropathy. Neuropathy gets worse with fatigue so do not overdue it. I know it is hard because I try to be super mom but the body just won't  let me. I power walked 5 miles 3 x week before chemo now I am lucky if I can do 1 mile every 2 weeks. But I am getting older thank goodness. I tried neurontin and lyrica, vit B6 and nothing helped the neuropathy except made me gain weight. Good luck with your mri and hang in there. 

tnbc 0.5cm mass. 3+ lymph nodes. 4 rounds a/c, 4 rounds taxatere. left mastectomy11/2003. tram flap 6/2006
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmayes Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2009 at 11:48am
Hi there,
 
Glad you got hte MRI - any results yet?  Hope they are good for you.
I would have got the MRI - you cnat make decisions without data and results.
 
Good luck and healing thoughts your way,
Debs
Debs | Laugh every day, Love every minute.
Dx Mar09 - LB IDC 4.5cm - 0 nodes. BRCA -
Cytoxin/Taxotere x4 end Jul09.
ReCon surgery March10.
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Allison View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Allison Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2009 at 7:13pm
I felt so much better today after making the decision and accepting it. I'm scheduled for the MRI Sunday morning and with any luck next week I will be able to uncurl myself and approach life the way I want to.

Thanks again for the sounding board and the support It has made all the difference in the last 24 hours.
9/07 IDC, trip neg, BRAC-, Lumpectomy with SNB (all clear) 10/07, FEC & Taxatere 11/07 - 2/08, 32 rads, 3/08 - 5/08.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 19 2009 at 12:23pm
Hi Allison,
 
Sorry to hear you are having concerns, I agree with the others, get the mri.
Amazing you will have the results so soon, let us know, our fingers are crossed.Smile
 
As for the Neuropathy some do find help thru Neurontin and/or Lyrica but of course not all.
 
I have been using Neurontin for probably over a year, 2400 mgs a day and it sure helps with my leg pain.
They started me at a lower dosage but over time it has been increased and holding pretty good.
 
Hope you get some help. 
Sometimes we have issues come up after treatment and they can be irritating to say the least.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Allison View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Allison Quote  Post ReplyReply Direct Link To This Post Posted: Sep 19 2009 at 2:08pm
Pam,

I have been on Neurontin for quite a while now - a much lower dose than you and it has worked remarkably well until the past 3-4 weeks. I am currently coming off the Neurontin to try another agent. I have been having terrible memory issues and my neurologist said that that could be attributed to the nerontin. It would be great to get a functioning brain back!

9/07 IDC, trip neg, BRAC-, Lumpectomy with SNB (all clear) 10/07, FEC & Taxatere 11/07 - 2/08, 32 rads, 3/08 - 5/08.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 19 2009 at 2:58pm
That is interesting about the memory issues with your Neurontin but sorry to hear it didn't work.
 
I know my memory is terrible, never thought of Neurontin possibly being the cause, thanks for sharing.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HolliBeri Quote  Post ReplyReply Direct Link To This Post Posted: Sep 19 2009 at 5:16pm
Have the MRI! THere is no overkill with TNBC!
DX age 45:12/08 IDC & DCIS TNBC. 2/09:lumpectomy, 2 cm, grade 3, -nodes, stage IIa, BRCA- Chemo:Taxotere/Cytoxan x4.Double mastectomy 6/09. Zometa   http://www.caringbridge.org/visit/hollisimpsongough
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Sep 19 2009 at 5:34pm
Allison,
 
You might want to click on this link from here on the site, as Neuontin was discussed at length by a few of the women, and alene in particular.
Nancy
 
 
 
and a link for the drug..
 


Edited by Nancy - Sep 19 2009 at 5:37pm
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Allison Quote  Post ReplyReply Direct Link To This Post Posted: Sep 22 2009 at 6:42pm
Just wanted to let you all know that Brain MRI was clean and neurologist reassured me that there is nothing major going on. What a relief! I think I may just sleep tonight! Thanks again for the feedback and support.
9/07 IDC, trip neg, BRAC-, Lumpectomy with SNB (all clear) 10/07, FEC & Taxatere 11/07 - 2/08, 32 rads, 3/08 - 5/08.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 22 2009 at 7:23pm
Congratulations, Allison! 
Sleep well,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2009 at 4:43am
Allison,

Great news and what a relief for you!

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2009 at 5:37am
Wonderful news Allison, thanks so much for letting us know.
Stage 2 2003
Stage 1 2007
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