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Old 08-09-2015, 04:34 AM   #1
sarah
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brian tumor surgery, what's best?

Hello,
My best friend, like me had bc, but 10 years ago her daughter had a brain tumor that luckily wasn't cancer, now it's come back. It was near the front so even last time effected some social skills.
They mentioned doing a surgery where the patient remains conscious so that they can tell how things are being effected so as to be able to stop??? Not sure what they're talking about or what is the best solution. We are all in France which may or may not have the most advanced knowledge about this. the daughter was a nurse but had to give it up after first tumor.
I've only heard about cyberknife on this site and I'm not too sure what that means. Naturally I am worried even if it isn't cancerous although a recurrence to me sounds like cancer.
any thoughts, suggestions, what's the best way to proceed???
thanks
hugs
sarah
co-founder of CSG06 a cancer support group for cancer patients, caregivers in the south of France
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Old 08-09-2015, 06:30 AM   #2
Carol Ann
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Re: brian tumor surgery, what's best?

Hi Sarah, I have no experience with brain tumors, but just wanted to say I am sorry about your friend's daughter. There are women here who do have experience with the cyberknife treatment; I am sure someone will be along soon to give some advice.

Carol Ann
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July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 08-09-2015, 07:30 AM   #3
lkc Gumby
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Re: brian tumor surgery, what's best?

Hi Sarah. Yes, a non cancerous brain tumor can recur. Menigiomas typically are found in the frontal lobe, and are slow growing, and not cancer.
It would be most unusual for a cancerous brain tumor to be deemed non cancerous.
In any event, she needs to speak with her neurosurgeon and find out her original diagnosis and what options they are presenting.
Perhaps a family member or friend can accompany her during the discussions. That would be most beneficial.
Good luck, and wishing her well
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Dxed Stage IIIC May 05, 12 pos nodes
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Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
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metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
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Old 08-09-2015, 08:43 AM   #4
sarah
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Re: brian tumor surgery, what's best?

thanks for your good wishes and advice.
I am hoping someone with experience could tell me something about the procedures now available.
I read a good short description for the cyberknife:

http://www.cyberknife.com/cyberknife...at-cancer.aspx

looks and sounds good.

thanks
sarah
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Last edited by sarah; 08-09-2015 at 09:43 AM..
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Old 08-10-2015, 02:59 PM   #5
StephN
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Re: brian tumor surgery, what's best?

Hello Sarah,
Very sorry to hear that the tumor has returned. I also have heard of non-cancerous tumors coming back after years.

The type of semi-conscious surgery you mention is done here often and quite successfully. How it works is that the area of surgery is completely numbed, the patient does not go under general anesthesia. This way the surgery team can get verbal feedback from the patient as they operate.

If the tumor is rather deep or hard to reach in a tricky position, they may want to use this method for the best safety of the patient.

Let us know the next steps.
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Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 08-11-2015, 08:51 AM   #6
sarah
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Re: brian tumor surgery, what's best?

Thanks Stephanie.
love sarah
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Old 08-12-2015, 01:55 AM   #7
Freakzilla
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Re: brian tumor surgery, what's best?

Sorry to jump on the thread but does anyone know if SRS can be done on the Motor Cortex region?

Thanks
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