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Old 11-21-2011, 05:47 PM   #1
mimi1952
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Join Date: Apr 2011
Location: Sarasota,FL
Posts: 20
Re: support for foregoing radiation?

You need to wait at least one year after radiation to have reconstruction with tissue expanders and implants. Even then, no guarantee. I had 37 rounds of radiation because margin was less than 1mm to chest wall. If not for that, knowing what I know now, I never would have had radiation. The permanent damage that was done caused my lung issues(still dealing with) and having failed expander/implant reconstruction and had to do tram flap. I had hysterectomy scar too and dr. could still do a fabulous job with flap. I opted for bilateral mastecomies and bilateral reconstruction. Glad I did, looks good and can purchase normal bras!!!
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Diagnosed July 2008
Stage 3A
Her 2+ grade 3 erpr-
5cm plus dcis left breast
2+nodes of 11
bilateral mastectomy
ACT herceptin 1 year
37 rads
immediate reconstruction w/implants but failed due to radiated side
2009 CT shows 4mm ground glass left lung and developed sarcoidosis.
2010 CT shows 5 mm ground glass left lung
delayed reconstruction bilateral tram
2011 CT shows 5 mm ground glass left lung
NED Sept 2011
2011 PET shows 2 new ground glass opacities in left lung. Will run new scans in 6 months
2012 PET is stable: 4 years NED
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Old 11-21-2011, 06:08 PM   #2
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: support for foregoing radiation?

Hi Nora -
I can't give advice on recon as I did not need it, but I did take taxanes and had to keep my tum under control.

Taking a stomach acid blocker from the start did help. I drank a lot of herbal teas that are good for your digestion and other innerds. Also, watched the citrus. Could not drink orange juice or eat grapefruit. Small amounts of cran raspberry juice a bit watered down were good for a pick up and hydration.

I ate a lot of bananas, and chicken broth with rice.

I had 30 rads with boost. Burn was not bad for me and I am quite fair skinned. Only the last few days did I get something like a rather bad sunburn, but without blisters.

Good luck.
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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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Old 11-22-2011, 06:04 AM   #3
Jackie07
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Location: "Love never fails."
Posts: 5,808
Re: support for foregoing radiation?

Nora,

Wondered if the LBBC recording might help you make your decision on reconstruction?

New Podcasts on Reconstruction, Lymphedema, Menopausal Symptoms

Many LBBC programs are recorded and posted on our website so you can listen to them when your schedule permits. These recordings from our annual fall conference this past October are now available: Visit the lbbc.org event archive for a list of past programs.



Jaime’s Story: It’s a Celebration




“Usually when you talk about celebrating you think about birthdays, holidays, graduations, weddings, and so on. You think about the dancing, the balloons, the food, and the people you are spending your time with. You think about celebrating things that make you smile.
You don’t think about celebrating your battle with cancer. My husband has been telling me over the past few months he wants to throw me a party to celebrate my accomplishments over the past year. I keep putting him off on the back burner.”
Read the rest of Jaime’s story.

Take A Survey, Support LBBC




Find A Cure Panel is looking for people with metastatic breast cancer and caregivers of people with metastatic breast cancer to participate in qualitative research that will take about 60 minutes of your time. This is open to U.S.-based participants only. To qualify, you or the person you care for needs to:
  • Have a diagnosis of metastatic (stage IV) breast cancer
  • Have HER2-positive breast cancer
  • Currently be in treatment
If you participate, FACP will donate $100 to Living Beyond Breast Cancer. If you are interested in participating, please contact FACP at info@findacurepanel.com.

Upcoming Programs and Events





12/1 Understanding Lymphedema (teleconference)
2/24-26 C4YW – Annual Conference for Young Women(New Orleans, LA)

Warmly,
Jean
Jean A. Sachs, MSS, MLSP
LBBC Chief Executive Officer
Toll-free Survivors’ Helpline: (888) 753-LBBC (5222)
354 West Lancaster Ave, Suite 224
Haverford , PA 19041
(610) 645-4567
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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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