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Old 12-27-2007, 05:53 PM   #1
Patty F
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Mastectomy Question - Repost

I have a question for all you ladies. I am scheduled for my 4th A/C on January 10th. After that I was told that I have to wait for 3 weeks before I have my mastectomy. How many of you have had both breast removed as a precaution? Will I be able to have the tissue expanders inserted at that time also? I know that I have to have 4 rounds of Taxol and then rads. Will they be able to place the tissue expanders in before the rads? I have so many questions and no answers here.
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Old 12-27-2007, 06:30 PM   #2
Mary Anne in TX
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Hey Patty! I asked my surgeon to do both sides and he told me that this kind of BC didn't usually go to the other side and he didn't want to do that. He was so charming about it, I gave in though I thought it would make life so much easier. I haven't had reconstruction yet so have no advice to offer, but keep moving this up til everyone is back on track after their Holiday break. You'll get some great answers from this bunch!
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Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!

Last edited by Mary Anne in TX; 12-28-2007 at 05:43 AM.. Reason: add info
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Old 12-27-2007, 08:15 PM   #3
PinkGirl
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Just bumping this up for you Patty.
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 12-27-2007, 11:34 PM   #4
Chelee
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Patty, I'm not much help in that area especially since I was never even offered reconstruction. But until all the ladies return here from the holidays...you might want to check the breastcancer.org board out for that topic. It might be very helpful. They have different forums there and one of them is just for *reconstruction*. That forum is pretty busy so you might want to check it out. It will hold you over until everyone returns here.

http://community.breastcancer.org/

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 12-28-2007, 09:09 AM   #5
dlaxague
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Hi Patty,

Do you have a plastic surgeon on your team? That would be the person to ask your questions about reconstruction. Second opinions are always a good idea, and that rule applies for the plastic surgeon also (it will give you something to do while you wait for surgery).

I had both breasts removed, though there was only evidence of cancer in one. I had no reconstruction, so cannot address your questions about that.

I'd be glad to answer any more-specific questions that you have.

Debbie Laxague
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3/01 ~ Age 49, occult primary announced by large axillary node found by my husband. Multiple CBE's, mammogram, U/S could not find anything in the breast. Axillary node biopsy - pathology said + for "mets above diaphragm, probably breast".
4/01 ~ Bilateral mastectomies (LMRM, R simple) - 1.2cm IDC was found at pathology.
5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP B-31's adjuvant Herceptin trial (no Herceptin): A/C x 4 and Taxol x 4 q3weeks, then rads. Arimidex for two years, stopped after second patholgy opinion.
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Old 12-28-2007, 12:08 PM   #6
Sheila
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Patty
I waited to have reconstruction for 1 1/2 years...I wasn't sure I wanted to do it. These are questions to asl your surgeon/plastic surgeon and oncologist...I do know that sometimes radiated skin followed by reconstruction does not give as good of results as the skin does not want to stretch after radiation....I would think that they would put the tissue expander(s) in when they do the mastectomy...I would definately get this all settled beforehand with all the docs...including the radiation oncologist!
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 12-28-2007, 07:12 PM   #7
Joannie
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Patty:
I had a mastectomy on the left breast when I found the lump. The plastic surgeon immediately inserted an expander and I had weekly fills. This was in May when I had the first mastectomy. After going through chemo, I decided to take the other breast off as a pre-caustion. I then had to have another expander placed in that breast and started the entire process over again. After both expanders were in place and filled, I had both removed at the same time and had saline implants inserted. It was a decision that was difficult to make but one that I'm glad I did. I have never looked back. The implants are quite comfortable. Good luck to you on making a decision. It's all about personal choice.
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Diagnosed April 2003
3.3 cm tumor left breast
HER2 positive 3++
ER/PR negative
Masectomy April 2003
4 Rounds of AC - dose dense
4 Rounds of Taxol - dose dense
Removed right breast prophalactically
Full reconstruction with implants/nipples
No Late Herceptin Received
Started Tykerb TEACH Trial in May 2007
Completed Tykerb TEACH Trial in May 2008
5 year NED August 27, 2008!!!
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Old 12-29-2007, 01:03 PM   #8
suzan w
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I had a prophylactic bilateral because the type of cancer I had, invasive lobular, has a higher rate of recurrence to the other breast. I have had no reconstruction.
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 12-29-2007, 01:17 PM   #9
KellyA
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Hi Patty,

I had a double mast. when I was dx'd even though the cancer was in only on one side. I did choose to have reconstruction at the time, and we were unsure if I would wake up with expanders in or if they would be able to get the implants in at the time of surgery. My doc did get the implants in- I was very happy, but couldn't stand up straight for a couple of weeks! :-) Anyways I did have radiation down the line and we all kept our fingers crossed as there is a very high failure rate with implants and radiation. My doc said they can harden, become very painful, or even MOVE to a new location. He had one patient whose moved to the center of her chest and she became the proud owner of three breasts. GREAT, I thought! But he said she took it in stride and even laughed about it and they were able to fix it. Luckily, I had no problems at all. Looking back, I am very happy I went with the decision I did, but hve to admit it was all luck, because I had no idea what I was doing, and relied on others advice. Good luck to you.

Love, Kelly
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dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

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Old 12-29-2007, 08:44 PM   #10
Joanne S
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Patty, I had a double masectomy and immediate reconstruction. After full expansion over several weeks, I had radiation. I have had numerous problems with the radiated side, including extreme, severe pain for months.

Radiation damages skin and muscle tissue as well as squeezing/contracting the expander. The radiation caused my expander to move into my armpit and high up on my chest.
http://her2support.org/vbulletin/sho...34059#poststop

My left expander was as hard as steel---I had severe capsular contracture --a common complication. http://www.implantforum.com/capsular-contracture/<!-- / message --><!-- sig -->

I had my expanders removed, capsulectomy, and gel implants five weeks ago. I feel very fortunate that my pain has diminished about 75%---Yeah---what a relief.

I honestly would not have gone this route if I had known then what I know now. Although I didn't have the best reconstruction experience (had infections too) and the radiated breast is smaller and not shaped as nicely as the other breast, I'm very happy now that I did it and that the worst is over and I have soft breasts.

Here's my story: http://her2support.org/vbulletin/showthread.php?t=30075
If I had it to do over again. although it would entail an additional surgery, I would wait until after radiation to get the tissue expanders implanted.

Make sure you explore all the different options for reconstruction, including tram flap, diep, etc. before making your final reconstruction decision. If you have any further questions, please don't hesitate to contact me.

Best to you!
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 12-30-2007, 09:44 PM   #11
Cannon
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Hi Patty F,

I can only share my experience.

I had pre-surgery A/C also, and then had 3 or 4 weeks til surgery. I had cancer throughout the right breast, so there was no question at all that I would need a mastectomy on that. I immediately requested that they also remove the left, and my surgeon discouraged me. He said there was only a 1% chance of recurrence in the other breast, but that is not correct, I have read it is 1% per year for up to 20 years, so perhaps a 20% recurrence. In the end, I insisted that I wanted both removed, and had my ovaries removed for good measure (tested negative for BRCA1 and 2, but premenopausal and all aggressive features).

My surgeon also told me NOT to have any plastic done at time of surgery, as I would need radiation and the expanders could cause problems. I did insist on a referral to a plastic surgeon, who I saw before my surgery - I wanted him to know what I looked like "before." He would have been happy to do the expanders at the time of the surgery, but my surgeon seriously advised me against it.

I decided I would do the most aggressive treatment I could, so that I would be alive long enough for reconstruction to be a problem. After radiation, you must wait usually 1 year to do any reconstruction. I am not in any hurry, at this time I am not planning any reconsruction, but I've learned never to say "never."

Also as a result of my consult with the plastic surgeon, I learned I am not a candidate for any of the surgeries that use your own tissue (due to previous abdominal surgery and scarring), so I would have to have implants, and implants are supposed to be replaced EVERY 10 YEARS. I cannot imagine doing that once, never mind every 10 years.

I am divorced and had not started dating again when I was dx, so no one else is interested in my breasts at the moment. If I were lucky enough to find a great guy, I know he would love me for me and not be concerned about breasts.

Best,
Rebecca
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Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 12-31-2007, 08:29 AM   #12
tousled1
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Hi Patty,

I opted for a bilateral mastectomy. I was told at that time that reconstruction could not be done immediately since we knew that I would be having radiation due to positive nodes. I had the radiation and as of today I still have not had reconstruction done. I'm happy with my decision. The most important thing is to gather as much information as you can and then make your decision.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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