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08-21-2010, 02:14 PM
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#1
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Senior Member
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
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brain mri
I was diagnosed stage 4 about a month ago with mets to my liver. I had a brain mri and a pet scan that was clear, other than the liver. Yea!
Now, I am wondering, absent any symptoms, how often do stage 4 women have routine brain mris? Every 6 months, every year?
thanks,
Laurie
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08-21-2010, 02:49 PM
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#2
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Senior Member
Join Date: Oct 2007
Posts: 203
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Re: brain mri
Good question, Laurie, and you will get good advice here. I think def more often than 1x/yr, because I do that, and I was stage 3.
__________________
Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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08-21-2010, 03:09 PM
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#3
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: brain mri
Laurie,
Look up 'Brain mets' and check on other members' signature. I think you can request for an MRI whenever you are experiencing symptoms such as headaches or dizziness.
Christine, the support group founder, was treated for brain mets during her cancer treatment. I have annual MRI because of Central Neurocytoma which was not related to the breast cancer.
__________________
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
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08-21-2010, 03:31 PM
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#4
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: brain mri
Laurie,
I think once a year would be good for a brain MRI.
After I advanced to stage 4 with a lung met, my onc agreed to a brain MRI, which turned out okay. We agreed to repeat it a year later.
I repeated the brain MRI 16 months later, and as it turned out it showed a 2.6 cm metastatic brain tumor. The neurosurgeon was joking with me saying that she heard I found my own brain tumor. That was because I had not yet developed any symptoms. After the surgery, I had stereotactic radiotherapy. This was in October 2008, and so far my brain has been good.
Sorry to hear your cancer advanced. Also, if you have only one or a small number of liver mets you might be able to use a local treatment like ablation to try to eradicate them (see the recent excellent posts by Rich and on cryoablation). Then you might be able to take only Herceptin. That's what I've been doing, and so far it seems to be working.
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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08-21-2010, 10:22 PM
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#5
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Senior Member
Join Date: Jul 2010
Posts: 34
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Re: brain mri
delete message
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08-21-2010, 10:50 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: brain mri
Most onc's only want to do scans when there are symptoms. (I rather scan before any symptoms pop up.) I would like a brain MRI every six months if I had my way. Normally over the last five yrs I've been getting them any where from six to ten months apart. Since I was orignally dx stage III...and now stage IV...I just bring up having a headache and my onc will order one. I'm not sure of any standard protocol they go by for stage IV's? If there is one...someone jump in here.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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08-22-2010, 06:07 AM
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#7
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Senior Member
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
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Re: brain mri
Thanks for all the replies. I think I will have a brain mri every 6 -12 months. My onc is pretty good about letting me have scans when I ask, but I will also complain of headaches, if that what it takes.
Joan, I am very interested in the targeted therapies, but my liver tumor was 11 cm, so for now I am on Taxotere, with Herceptin. I will have another ct at the end of Sept, and if it has shrunk considerably, I will start looking at my options. It would be wonderful to be only on Herceptin. Do you take it weekly, or are you able to do it every three weeks?
Thanks again for everyone's help,
Laurie
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08-22-2010, 06:11 AM
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#8
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: brain mri
Laurie,
My onc is supportive of an annual MRI. I do try to balance my anxiety and constant desire for tests with the potential impacts of so many weird chemicals being injected into my body.
As Chelee indicated, some oncs aren't supportive and require us to speak of symptoms in order to receive the MRI. I am glad that I have not had to do that. But...I would recommend at least an annual MRI and encourage to "get dizzy" if you need to.
So sorry that you are dealing with a liver met...hopefully it will remain contained to the liver and with the right one/two punch you'll be able to knock it out of the ring.
My lengthy (sorry team...can't figure out how to get it to wrap horizontally) signature details my battle with a pesky met. I've been very active, leading a very full life while continuing to manage this problematic spot. So...all is not lost.
Keep the faith....Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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08-22-2010, 05:34 PM
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#9
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: brain mri
Lori,
I have a Herceptin infusion every three weeks.
If the tumor shrinks down to 3.5 cm or less, I believe you can look into these other options.
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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