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03-20-2014, 08:17 AM
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#1
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Senior Member
Join Date: Aug 2013
Location: Texas
Posts: 61
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Early stage and recurrence ??
Hi All,
As I move along in my treatment and start to feel more and more at ease with this disease I also start to feel more confused on some studies. I have read in numerous places that women with early stage Her2+ breast cancer have a much higher rate of recurrence. Does anyone know why that is? It seems so odd, since we always hear that finding cancer early is very important and you would think that if it hasn't spread the rate would be even better. But that doesn't seem to be the case. Is it because many doctors in the past would not treat early stage Her2+ cancer like they do now. With chemo and Herceptin? Or is there another reason that someone can help explain to me. As you can see below, I am young and my cancer was caught at an early stage so you can see why I am so interested in this.
Thank you!
__________________
Lovemyboy3
6/27/2013 - Diagnostic Mammogram due to a tiny lesion found.
6/27/13 - Diagnosed with Breast Cancer at age 33 :'(
07/11/2013 - Surgical needle biopsy
07/15/2013 - Path report results from biopsy - DCIS with micro invasion, Pagents disease - ER/PR- Her2+++
7/26/13 - PET Scan CLEAR!!
8/19/13 - B/L Mastectomy w/DIEP Flap reconstructive surgery. Nodes removed clear!! Stage 1A. Positive Margins remaining
8/23/13 - Finally HOME from the hospital
9/10/13 - All drains out. YEAH!!
9/6/13 - 2nd Surgery to try and remove remaining positive margins. Port placed.
9/11/13 - Path report shows all tissue samples are neg. Clear Margins!!
10/3/13 First TCH treatment - Horrible amount of side effects.
11/10/11 - First weekly Herceptin treatment.
10/11/13 - Late night ER visit due to Neutropenic fever - WBC at 0 in the hospital.
11/17/13 - Ultrasound on left breast due to pain. Benign findings: Oil cysts and possible Fat Neurosis from reconstructive surgery.
11/24/13 - Round 2 TCH treatment.
11/25/13 - Neulasta Shot given. Side effects minimal. Woo Hoo!
11/27/13 - Said goodbye to my hair. :-(
01/14 - Mammogram and Ultra sound - CLEAR!
01/23/14 - Last scheduled Chemo! WOO HOO!
03/04/14 - Phase 2&3 reconstructive surgery DONE!
03/06/14 - 2 days after surgery and 1st Herceptin only treatment. Minimal side affects.
03/14 - Began having pain and weakness in my feet and legs. Doc thinks it is delayed side affects of chemo possibly Neuropathy. Could even be the Herceptin (what ever it is I would appreciate it if it went away :/)
03/14 - A little over 8 wks post chemo and hair is about 1/2in long. :) Not a whole lot but its getting there. Eyebrows are taking there time but are coming in nicely.
04/14 - Where did my eyelashes go? :/
16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18
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03-20-2014, 01:36 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Early stage and recurrence ??
Well - you kinda have some answers. It depends on what the statistics are based on and what the treatment for each subgroup was. For example, when comparing Stage I people - were they all treated with chemo and those that were Her2+ also treated with Herceptin too? Or, was there a wide variety of treatments, some chemo, some chemo with Herceptin, some just masectomy or lumpectomy with radiation.
Herceptin changed the statistics enormously. They used to be worse stage by stage when comparing to those who are just (highly) hormone positive only. Triple negative stats are also poorer. Herceptin with chemo is almost better than just chemo for highly positive only patients. So... if you look up statistics, you do need to know what the treatment was to make good comparisons. You did it all and your outcome should be excellent!!!
__________________
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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03-21-2014, 08:03 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Early stage and recurrence ??
becky's right. I was early and had a recurrence but I was diagnosed in 1999 and Herceptin was only given to a few metatastic women back then. I also had no chemo or radiation.
Herceptin changed everything. people with bc are now better off if they are HER2+!!!! amazing, isn't it,
If I'd been given Herceptin, I would not have had a recurrence,
You're very new and young to this disease, that makes it very scary, Talk to your onc and nurses, I;m sure they will tell you that you're going to live a normal life and die of something completely different, I hope you can believe this soon so you can free yourself from the anxiety.
it's too bad they don't make the stats from a certain date on and also as Becky said, give the full picture, it's very misleading and upsets patients needlessly,
Enjoy you boys, enjoy life,
hugs sarah
__________________
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03-21-2014, 11:40 AM
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#4
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Senior Member
Join Date: Aug 2013
Location: Texas
Posts: 61
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Re: Early stage and recurrence ??
Thank you both! I have my days where it all comes flooding and fear and anxiety take over. Then I have other days where I am at piece with all that has happened. Its certainly a roller coaster ride. My Faith, friends, family and certainly all on this site keep my spirits high and remind me that all will be ok. Trusting in the Lord!!
I was in tears reading your replies as you are right Sarah, enjoying my boys, my family and my life is the best thing I can do.
Thank you again!!!!
__________________
Lovemyboy3
6/27/2013 - Diagnostic Mammogram due to a tiny lesion found.
6/27/13 - Diagnosed with Breast Cancer at age 33 :'(
07/11/2013 - Surgical needle biopsy
07/15/2013 - Path report results from biopsy - DCIS with micro invasion, Pagents disease - ER/PR- Her2+++
7/26/13 - PET Scan CLEAR!!
8/19/13 - B/L Mastectomy w/DIEP Flap reconstructive surgery. Nodes removed clear!! Stage 1A. Positive Margins remaining
8/23/13 - Finally HOME from the hospital
9/10/13 - All drains out. YEAH!!
9/6/13 - 2nd Surgery to try and remove remaining positive margins. Port placed.
9/11/13 - Path report shows all tissue samples are neg. Clear Margins!!
10/3/13 First TCH treatment - Horrible amount of side effects.
11/10/11 - First weekly Herceptin treatment.
10/11/13 - Late night ER visit due to Neutropenic fever - WBC at 0 in the hospital.
11/17/13 - Ultrasound on left breast due to pain. Benign findings: Oil cysts and possible Fat Neurosis from reconstructive surgery.
11/24/13 - Round 2 TCH treatment.
11/25/13 - Neulasta Shot given. Side effects minimal. Woo Hoo!
11/27/13 - Said goodbye to my hair. :-(
01/14 - Mammogram and Ultra sound - CLEAR!
01/23/14 - Last scheduled Chemo! WOO HOO!
03/04/14 - Phase 2&3 reconstructive surgery DONE!
03/06/14 - 2 days after surgery and 1st Herceptin only treatment. Minimal side affects.
03/14 - Began having pain and weakness in my feet and legs. Doc thinks it is delayed side affects of chemo possibly Neuropathy. Could even be the Herceptin (what ever it is I would appreciate it if it went away :/)
03/14 - A little over 8 wks post chemo and hair is about 1/2in long. :) Not a whole lot but its getting there. Eyebrows are taking there time but are coming in nicely.
04/14 - Where did my eyelashes go? :/
16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18
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03-21-2014, 08:20 PM
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#5
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Senior Member
Join Date: Jan 2014
Location: South Florida
Posts: 97
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Re: Early stage and recurrence ??
When I first heard I was Her2+, of course, I ran home and googled it....and cried for days! Then the scientific part of my brain kicked in and I went back and looked at some studies and the actual date of them - most of which were at least 10-15 years old! My assumption at that point, was that I was looking at outdated stats, prior to Herceptin, and definitely prior to Perjetta pre-surgery.
My friend that went through this 6 months ago, told me "we have the worst type of cancer with the best treatment for it"!
__________________
1/17/14 Day after 44th b-day, Got dx of 2 malignancies Rt breast; ER/PgR- HER2+
1/21/14 Biopsy of spot on left; normal
1/28/14 PET scan - CLEAR!
1/29/14 BRCA normal!
1/31/14 Sentinel node biopsy
2/5/14 Nodes are CLEAR! Stage I/IIa, N0, M0
2/13/14 Start Chemo, 6 rounds for 18 weeks prior to surgery
2/28/14 Port placed
3/6/14 Chemo Round 2
3/27/14 Chemo Round 3 (halfway done!)
4/11/14 u/s shows 2cm tumor about 2x5mm now!
4/17/14 Chemo Round 4
5/8/14 Chemo Round 5 and Daughter's Birthday :)
5/27/14 Last Chemo Party - Round 6
6/17 14 Herceptin only until next Feb.
6/20/14 BMX/Immediate reconstruction DONE
6/30/14 Path report back...NED!
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03-22-2014, 05:35 AM
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#6
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Early stage and recurrence ??
I was in early stage when first diagnosed in 2003. Herceptin was not approved yet and I was given FEC after a lumpectomy.
I ended up with a recurrence that was not found for 4 years because everyone thought the shadow on the film was scar tissue! Finally I went to the original surgeon and insisted on a double mastectomy (totally lost confidence ... ) after the recurrence was confirmed (stage IIb). Herceptin was approved then, but my heart couldn't take it and ended up having just 22 weeks (including the 18 weeks of TCH) of treatment.
I will be celebrating 11 years in July from the initial BC diagnosis and 7 years from the recurrence in June.
__________________
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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03-22-2014, 10:49 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Early stage and recurrence ??
Glad you're enjoying your boys. the treatments are getting better and better every year. We are so lucky we are living now and not 20 years ago.
take care
love sarah
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