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10-15-2007, 11:31 AM
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#1
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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BRCA Results in - I'm negative!
Had my meeting with the genetics councellor this morning and got the very happy news that I am negative for both BRCA 1 & 2. There is virtually no direct family history on either side of the family, but they tested me because I was 48, premenopausal at dx and Ashkenazi Jewish background.
Needless to say I am relieved, mostly for my 2 beautiful DDs age 18 and 21. I saw my onc. afterwards, who had told me I would be negative, and of course he was very happy for me. But he also reminded me that my DDs, mother and any sister I have (only brothers, he said they would not be at risk now) still have 2x the risk of the general population. Well, we'll be vigilant, but I am so thankful that I am negative for these genes.
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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10-15-2007, 12:14 PM
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#2
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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That is wonderful Caya. I'm sure being the mother of daughter's it is a huge relief to you. I was never tested because I was told that the odd's of me having the brca 1 or 2 gene was very slight. I do not have daughter's so decided to not do it.
Once again, that is wonderful news for you. Thanks for sharing.
Mary Jo
__________________
"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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10-15-2007, 02:13 PM
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#3
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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ongratulations Caya! That's wonderful news and it must be such a relief. I have arranged a referral to do the same - just waiting for the appt now. Best wishes - BElindax
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Belinda
- Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
- Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
- May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
- March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
- Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
- January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
- Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
- Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
- ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
- Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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10-15-2007, 02:33 PM
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#4
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Senior Member
Join Date: Nov 2006
Posts: 42
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Great news!!! Thank you for sharing!
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Susie Q - North San Diego
Diagnosis at Age 41 on 10/6/06
~3cm Invasive Ductal Carcinoma Left Breast Stage II
~ER+ 45% Moderate ~ PR+ 62% Strong
~HER2/neu +++
~Sentinel Node Biopsy - Negative Four Nodes
~BRAC1/BRAC2 Negative
~Neo-adjuvant Chemo:6 rounds-every Three
Weeks of Taxotere & Carboplatin & Herceptin
Weekly Completed on 2/7/2007
~Lumpectomy (after chemo) 3/12/2007
~Switched to Every 3-week Herceptin 3/21/2007 for nine more months.
~Radiation May through June 2007 (35 rads total)
~Hormone therapy Lupron Injections + Arimidex
~Lymphedema Challenged!
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10-15-2007, 09:05 PM
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#5
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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What a relief, especially since you have daughters. Best wishes.
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10-16-2007, 06:03 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Yea! It is a relief to find out the news. Congratulations.
__________________
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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10-16-2007, 06:20 PM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Yippee Caya! I was relieved when I learned I was brac neg! Good going.
__________________
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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10-18-2007, 11:00 AM
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#8
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Senior Member
Join Date: Dec 2006
Posts: 136
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Caya -
Great news! I am having my blood drawn next week for the same thing so I hope I receive the same news as you! Yes---mainly for my kids as well.
__________________
Debra
Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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10-18-2007, 11:37 AM
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#9
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Senior Member
Join Date: Oct 2007
Location: Columbia, S.C.
Posts: 31
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I'm not sure what this means, I'm sorry to ask so many questions.
My grandmother had breast cancer twice....I don't know what kind it was, but is there some kind of test I need to take? Or my daughter needs to take?
I'm seeing a new gyn next week about a few issues I've been having due to my hysterectomy and some bladder work. I also have some calcifications the doc is keeping watch on, a chip was inserted there and they do a mammogram each year. So far, no changes. The only thing I'll bring up with my new gyn doc is that I do have a sore lump that appears and disappears under my arm. I've asked my family doc and my former gyn doc about it, as well as mentioned it to the mammogram technician. All have said it's nothing to worry about. I hope they're right!
Anyway, back to the original question, I'm not sure what kind of breast cancer my Grandmother had. HER2 is a fairly new finding, as all breast cancers were treated the same until the past few years. She was treated 30 years ago. She had 2 radical mastectomies and remained cancer free until her death from heart problems. My mammo tech. said my calcifications are in a "tea cup" pattern and she is watching them very closely as they tend to lead to cancer, but one that is easily treated.....again, not sure what I'm talking about yet really.
Forgive me for rambling so much!!
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10-18-2007, 02:45 PM
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#10
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Caya, congrats on being negative for gene test. I know that is a good feeling as I too found that out not that long ago.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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10-18-2007, 03:43 PM
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#11
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Dear Caya,
WONDERFUL news! I share your Ashkenasi backround and was BRCA negative as well despite a significant family history . I have a 14 yo DD that will still have to be vigilant anyway... BUT BRCA negative is something to celebrate!
Congratulations!
Marcia
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