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Old 08-20-2011, 07:16 PM   #1
Julie2
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Need a referral to a good cyberknife/radiation oncologist at UCSF

Hi,

One of my internal mammary node is pressing the sternum. My oncologist wants to deal it with chemo but I would like to get it treated with a focal radiation or cyberknife. Can anybody give a good radiation oncologist name at UCSF?

Thanks,
Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 08-20-2011, 09:55 PM   #2
hutchibk
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Re: Need a referral to a good cyberknife/radiation oncologist at UCSF

Message Chrisy and Courtney... they are both connected to UCSF I think, or they may know the name of a good recommendation.
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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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Old 08-21-2011, 03:23 AM   #3
Lani
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Re: Need a referral to a good cyberknife/radiation oncologist at UCSF

No personal experience here, but I understand Penny Sneed is a radiation oncologist at UCSF who specializes in treatment of breast cancer brain mets and is kind and caring.
I think she mainly uses gamma knife rather than Cyberknife

Why not go to Stanford? A Stanford neurosurgeon invented the Cyberknife. They are I believe the only facility in the country to have two Cyberknives and they have more experience than any facility in the world in using the Cyberknife for treatment of tumors and metastases in sites other than the brain.

Try Googling Cyberknife Stanford.

Good luck
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Old 08-21-2011, 07:29 PM   #4
Julie2
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Re: Need a referral to a good cyberknife/radiation oncologist at UCSF

Lani,

Could you give me a good referral at Stanford?

Thanks,
Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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Old 08-21-2011, 11:15 PM   #5
Lani
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Re: Need a referral to a good cyberknife/radiation oncologist at UCSF

from Stanford Cyberknife website:
our team



Steve Chang, MD
Neurosurgeon
Co-Medical Director, Cyberknife Radiosurgery Program



Iris Gibbs, MD
Radiation Oncologist
Co-Medical Director, Cyberknife Radiosurgery Program





John Adler, MD
Neurosurgeon


Nikolas Blevins, MD
Head and Neck Surgeon


Daniel Chang, MD
Radiation Oncologist

Maximilian Diehn, MD, PhD
Radiation Oncologist

Robert Dodd, MD, PhD
Neurosurgeon

Sarah Donaldson, MD
Radiation Oncologist

Mike Edwards, MD
Neurosurgeon (Pediatrics)

Steven Hancock, MD
Radiation Oncologist

Griff Harsh, MD
Neurosurgeon

Kate Horst, MD
Radiation Oncologist

Robert Jackler, MD
Head and Neck Surgeon

Albert Koong, MD, PhD
Radiation Oncologist

Quynh-Thu Le, MD
Radiation Oncologist


Billy Loo, MD, PhD
Radiation Oncologist

Stefan Mindea, MD
Neurosurgeon

Jon Park, MD
Neurosurgeon

Joseph Shrager, MD
Thoracic Surgeon

Scott Soltys, MD
Radiation Oncologist

Robert Lieberson, MD
Neurosurgeon

^^^^

I have heard Iris Gibbs speak, I have gone (almost 15 years ago) with someone to their initial appointment to learn about Cyberknife treatment of a recurrent acoustic neuroma with Dr Adler (who invented the Cyberknife), and
over the years I have met (at meetings and lectures and otherwise) Drs. Donaldson, Hancock and Horst. All have seemed knowledgeable and caring.

If I had known who to recommend I would have done so.

Don't think you can go too wrong.

Esther had treatment (I think of her liver mets) at Stanford if I recall. Perhaps others have and can chime in.
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Old 08-21-2011, 11:32 PM   #6
bejuce
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Re: Need a referral to a good cyberknife/radiation oncologist at UCSF

Dr. Horst was my radiation oncologist and she is outstanding. Dr. Adler was one of the inventors of Cyberknife I think.
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 08-25-2011, 09:33 AM   #7
CourtneyL
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Re: Need a referral to a good cyberknife/radiation oncologist at UCSF

Dr. Penny Sneed at UCSF is the best. I highly recommend her. Right now she is doing a month of research so I don't know if she is seeing patients. I saw her briefly on Monday when I went in for Gamma Knife. Her associate, Dr. Shannon Fogh is also great. You really can't go wrong with the UCSF rad onc team - they are all fantastic. Good luck!
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4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.

Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial

Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED

Send me a PM if you'd like to follow my journey on Caringbridge.
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