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08-25-2011, 07:44 PM
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#1
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Senior Member
Join Date: Apr 2008
Location: Indianapolis
Posts: 46
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brain surgery and Gamma Knife
Hello All,
After having a regularly scheduled MRI it showed that some of the previously treated tumors are growing back. There is a new 5 mm growth too. The growths are on or near the cerebellum.
I guess I'm posting to see if anyone has had brain surgery. How did it go? It is kind of scary. I have great faith in Jesus, but brain surgery? Yuck.
As you can see, I have had Gamma Knife before. So I kind of know what that's like. Jealous?
Thanks,
D.W.
__________________
4/06 diagnosed metastatic breast cancer stage III her2nu
4/06-7/06 taxol, carboplatin, herceptin 4/06-4/08 herceptin
8/06 mastectomy, lymph nodes removed
08/06-12/06 taxotere
28 radiation treatments
4/08 mets in brain, spine & hip
4/08 whole brain radiation 10 times
5/08-6/08 spinal radiation 12 times
4/08-9/08 tykerb, xeloda
9/08-present navelbine, herceptin
10/08 MRI shows brain mets just about gone!
4/09-blah more brain mets
6/09-Gamma Knife Radiation to the brain
9/09-three small brain tumors gone, big one shrunk almost in half
3/10 NED (nice)
8/11-more brain mets; shrunken are growing; new one found
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08-26-2011, 05:11 AM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: brain surgery and Gamma Knife
DW
hoping some of the brain mets experts on the board will jump in and offer their experience. Is it the location of the tumor/mets that require the surgical intervention rather than gamma knife?
Sending positive thoughts to you.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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08-26-2011, 12:49 PM
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#3
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: brain surgery and Gamma Knife
D.W.,
It's probably better to keep zapping the mets as long as possible.
I had a brain met in Oct. 2008. A radiation oncologist and a neurosurgeon recommended surgery due to the size of the lesion (2.6 cm) and the fact that it was deep. They said I would get better control with surgery followed by radiation. The lesion was in the left frontal lobe.
The surgery went okay. The worst part was my head being wrapped very tightly with wide surgical gauze for the first 2 days in the hospital, which hurt somewhat. I was hospitalized for 4 days.
I took Decadron for a month, and because the drug is a steroid it started driving me nuts by making me hyper and also gaving me insomnia. Fortunately, I was not given the drug when I had the radiation. I returned to work in a month.
Six weeks after the surgery I had 5 dosages of targeted radiation (IMRT) over a week.
The side effects were minimal other than it seemed at first that my legs were weak (I would go out walking every day), and I had a sense of loosing my balance sometimes. For example, when in a drug store, I would hold on to the end of an aisle when I was going from aisle to aisle.
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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08-27-2011, 08:32 AM
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#4
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Senior Member
Join Date: Apr 2008
Location: Indianapolis
Posts: 46
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Re: brain surgery and Gamma Knife
Thanks for responding, ladies. I sure appreciate your input and kind words. This is quite a journey, isn't it? If anyone else has some thoughts or experiences feel free to respond.
D.W.
__________________
4/06 diagnosed metastatic breast cancer stage III her2nu
4/06-7/06 taxol, carboplatin, herceptin 4/06-4/08 herceptin
8/06 mastectomy, lymph nodes removed
08/06-12/06 taxotere
28 radiation treatments
4/08 mets in brain, spine & hip
4/08 whole brain radiation 10 times
5/08-6/08 spinal radiation 12 times
4/08-9/08 tykerb, xeloda
9/08-present navelbine, herceptin
10/08 MRI shows brain mets just about gone!
4/09-blah more brain mets
6/09-Gamma Knife Radiation to the brain
9/09-three small brain tumors gone, big one shrunk almost in half
3/10 NED (nice)
8/11-more brain mets; shrunken are growing; new one found
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08-27-2011, 08:34 AM
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#5
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Senior Member
Join Date: Apr 2008
Location: Indianapolis
Posts: 46
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Re: brain surgery and Gamma Knife
Joan,
Did you have symptoms before your surgery? My onc. has expressed surprise that I haven't.
D.W.
__________________
4/06 diagnosed metastatic breast cancer stage III her2nu
4/06-7/06 taxol, carboplatin, herceptin 4/06-4/08 herceptin
8/06 mastectomy, lymph nodes removed
08/06-12/06 taxotere
28 radiation treatments
4/08 mets in brain, spine & hip
4/08 whole brain radiation 10 times
5/08-6/08 spinal radiation 12 times
4/08-9/08 tykerb, xeloda
9/08-present navelbine, herceptin
10/08 MRI shows brain mets just about gone!
4/09-blah more brain mets
6/09-Gamma Knife Radiation to the brain
9/09-three small brain tumors gone, big one shrunk almost in half
3/10 NED (nice)
8/11-more brain mets; shrunken are growing; new one found
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08-28-2011, 12:19 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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Re: brain surgery and Gamma Knife
D.W.
It's a scary feeling just thinking about someone's going to cut into our head. That's exactly how I felt when I began to 'tremble' while waiting for my craniotomy.
If it is of any help, I'd like to share that I'd come back from a 23-hour brain surgery (a single, huge tumor located in the center of my brain) without too much 'deficit' 21 years ago. The Gamma-knife radiosurgery in 2001 helped curb the (slow-growing)tumors grown out of the residue cells.
These tumors (Grade II Central Neurocytomas) are unrelated to breast cancer (though it could be caused by similar genetic mistakes). But I did go through the same process and thought I'd share with you.
A couple of our members seems to have had brain mets in the same area. Hopefully they will chime in soon.
__________________
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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08-28-2011, 02:45 PM
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#7
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: brain surgery and Gamma Knife
D.W.,
I did not have any symptoms but my oncologist started annual MRIs after the breast cancer spread to my lung. I asked her, and she agreed. The tumor was spotted on the second MRI, 16 months after the first one.
The idea of the surgery was very frightening. I was upset about their recommendation. I thought the tumor would be zapped.
Jackie, Love the photo of your father. God bless him!!
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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