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07-15-2008, 04:50 PM
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#1
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Senior Member
Join Date: Jun 2006
Location: Rockwall, Texas
Posts: 26
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MRI right or wrong?
How many people have either heard or had an MRI come back clean but in reality there was something there? My brain MRI came back clear even with a reread by a facility member and my onc talked to the reading radiologist.
I saw my eye doc today and he had to dialate my eyes to further observe, but in short he said my nerves are swollen and it is coming from pressure in my brain??? I have been so upset and crying and just plain mad. He said I need to see my onc right away and I needed another MRI because it could be wrong. I talked to my nurse and that is where the reread came in and the next step for me is to see a neurologist. However I do have a triangle blind spot in my left eye that has been there for several days which has gone along with some really bad headaches. I did have an adj from my chiropractor this morning and my neck was in a big mess. My ONC did give me pain meds, I tried tylenol, Ibu 800mg. Nothing would touch the headache, but I tried yesterday Excederin Migrain and it worked perfect. So any advise anyone? I know we are all scared out there. I am usually stronger than this but tonight I am a whipped noodle!!!
Hugs,
Shonda
__________________
Shonda Gaylord
36 M 5 children 16,12,9,7 yr old twins
DX 2-06 at 33 yrs old
4-06 Bi lateral mastectomyw/ recon
5-06 Taxol/Carbo Herceptain weekly
Have Mets in bone dx'd 1 week after surgery
5-07 Implant exchange
Chemo Holiday about 1 year
started Tykerb/Xeloda 6 days (Very sick)
Started Gemzar did 2 rounds (got very sick) In hospital 3 months w/ ARDS and TTP and CMV.
1-09 Started Navelbine/Herceptain weekly
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07-15-2008, 05:57 PM
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#2
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Hi Shonda,
I'm praying that you do not have a brain met and that these symptoms are related to migraine headaches. Although mistakes are made, your scan was read twice so I think it would be hard to miss something.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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07-15-2008, 10:28 PM
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#3
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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It's okay to be scared. As you say, we all experience it.
But maybe something else is going on that is not related to cancer. I have been having alot of shoulder pain and my onc did an MRI . Turns out to be a torn rotator cuff. Nothing to do with cancer. Of course, you would rather not have anything new to cope with, I understand.
Keep us posted. And keep the faith.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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07-15-2008, 10:45 PM
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#4
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Senior Member
Join Date: Jul 2008
Posts: 96
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hi shonda
yes i am going through the same thing as you. My MRI was clean, but my vision is not too clear after the surgery last month. my eye specialist and neurosurgeon saw something called rest pressure in my brain
and also they are suspecting meningitis, i am overwhelmed, but all of a sudden miraclously the head aches have stopped, i dont know what steps they will take, i am going to India just to do some test on this so called "rest pressure" in my brain.
take care. hope you will feel better soon.
love
christie
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07-16-2008, 08:07 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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Shonda
You are not a whipped noodle. You are strong and the unknown is scary. Joan is right, it could be migraines or something else. Take a deep breath and keep taking Excedrin Migraine to keep the pain at bay.
Please keep us posted and I'm sending my prayers that things will turn out better.
__________________
Diagnosed 4/03/03, age 50
3.5 cm, 0/19 positive nodes
Stage IIA
Her2++, ER & PR++
RB Mastectomy, 4 AC,
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07-16-2008, 11:42 AM
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#6
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Shonda,
MRI is pretty good in detecting brain abnormalities. I would take the doctor's diagnosis - especially if the medicine for migrain works.
When I had my first diagnosis of breast cancer, the mitotic rate was unbelivably high (very, very fast growing) and the doctor thought it might have taken the cancer to grow to 1.2 cm in 2 1/2 years.
My point is, it will take quite a while before the cancer spread to the brain. and it will take even longer to have symptoms from it. I would take the medicine and see if it works for the next 3 months.
Take care, I know how headaches feel like.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 07-17-2008 at 09:17 AM..
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07-16-2008, 01:57 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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I wonder if a different type of contrast agent would be better with the MRI.
I don't know if its offered, but it seems that it would not hurt to ask.
maria
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07-16-2008, 04:25 PM
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#8
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Senior Member
Join Date: Jun 2006
Location: Rockwall, Texas
Posts: 26
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I want to thank all of you for your kind words of encouragement!!! I did yesterday take my BP and it was high. This morning when I woke I took it again and it was 161/110. Hello???? So I found an amazing PCP here where I live since my normal one was on vacation until Monday. He did start me on Benzapril 10mg. We will see if this is the situation for the swelling of the optic nerves and the vision issue. He did say the HBP can cause that. So again thank you so much! I am so exhausted right now I can not wait to go to sleep!!!
__________________
Shonda Gaylord
36 M 5 children 16,12,9,7 yr old twins
DX 2-06 at 33 yrs old
4-06 Bi lateral mastectomyw/ recon
5-06 Taxol/Carbo Herceptain weekly
Have Mets in bone dx'd 1 week after surgery
5-07 Implant exchange
Chemo Holiday about 1 year
started Tykerb/Xeloda 6 days (Very sick)
Started Gemzar did 2 rounds (got very sick) In hospital 3 months w/ ARDS and TTP and CMV.
1-09 Started Navelbine/Herceptain weekly
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07-19-2008, 10:05 PM
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#9
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Senior Member
Join Date: Apr 2007
Posts: 292
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Hey, Shonda!
I just wanted to let you know that I had my husband read your post. He works for the largest group of neurologists in Atlanta, and he has been managing the imaging department for 10 years (10 before that, with the same doctors at another facility). Now that you have his resume (LOL), here is what he said...
It would be very, very, very rare for your MRI to have been misread. If there was something large enough to be causing problems, it would have shown up on MRI. He also said that it is possible that your optic nerves are swollen (optic neuritis, I think). I am a little upset that your eye doctor made comments to know that would worry you with regard to a brain met.
Now, my husband shouldn't be dispensing opinions online, but I could feel your worry, and wanted to give you some sort of stress relief.
Keep us updated,
__________________
Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA
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07-20-2008, 10:35 AM
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#10
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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................and this is why I love this site so much. We all pull together to help one another through each crisis and rejoice with one another over every joy.
You guys are fantastic and I love you dearly.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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07-20-2008, 11:26 AM
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#11
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Hi Shonda - I am so glad that you posted this here and that you are trying to get to the heart of the matter...
Where do you go for treatment? Austin? Georgetown? Where did you get your MRI? I am just curious as I live in Austin and can help you identify other locals docs if you need further evaluation!
Have a good restful weekend.
Brenda
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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07-20-2008, 01:24 PM
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#12
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Hi Shonda, it's good to see you hear again but sorry you're still so stressed about these headaches. It sounds like the other ladies have given you some very reassuring replies and I'm sure Krista's reply will have helped enormously.
I'll be keeping my fingers crossed this is something not too serious and you get some answers and peace of mind soon.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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