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Old 04-21-2008, 04:55 PM   #1
micheleu
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Location: Nebraska
Posts: 154
talked with my onc about PET scan

He wants me to have a mammo and ultrasound of that breast and see him. I will probably do a bx of that nipple to see if there is changes. (My opposite nipple lit up on my PET scan) I'm just worried about Paget's disease or inflammatory breast cancer. I'm hoping for the best. Not a good BDay present. I know it could be worse, just was hoping for NORMAL PET scan on the report (don't we all)
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Michele Ulmer

Dx.2003 Stage 3b 35 pos nodes

Dx August 2003 Stage 3B with 35/35 nodes IDC age 39
Lumpectomy
A/C x4 Taxol x12
35 radiation tx
1Year Herceptin in trial
HER2 vaccine trial Seattle
3 months Tykerb off label
NED

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Old 04-21-2008, 07:16 PM   #2
Mary Jo
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Hi Michele,

First of all let me say, "happy birthday!" Then let me say I'm sorry your birthday had to be celebrated with this on your plate. I know you say "it could be worse" and yes, I suppose it could be but it's still stressful and not what you wanted to have to go through. So, for that I'm sorry.

I'm praying for the best for you. All normal...nothing wrong.....just one of those things - a false positive.

Sending hugs and love to you AND I love your new pic. You're beautiful.

Mary Jo
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"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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Old 04-21-2008, 07:29 PM   #3
Becky
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Have a happy birthday Michelle. Its scary when tests don't come out the way they are supposed to. It seems all of mine have something weird that is easy to eventually explain away and yours is probably one of those too.

Remember a LONG time ago I wrote you and told you that you were my hero and you still are!
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 04-21-2008, 10:28 PM   #4
StephN
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Thumbs up

Dear Michele -
Hope you had a good time on your birthday in spite of your worries. Bet the kids had a good surprise for you.

I must have missed a post about the PET scan - could not keep up with all the posts while I was away in San Diego and running pretty nonstop since returning home. (Son visiting, family celebration, etc ...)

You have done SO well up to now that I am having a hard time believing that there is anything wrong with you. BUT - we do have to remain vigilant and check and double check.

Positive energy of all kinds coming your way for an easy explanation.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
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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