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Old 10-07-2014, 08:15 PM   #1
rinaina
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8yrs later I am gearing up for double Mastectomy

It has been 8 1/2 years since my Her2 + diagnosis. I always looked back and questioned if I should have had a mastectomy. Due to the damage from radiation to my cancer breast and the fact that for the last 1 1/2 years I have been walking around with an implanted marker in my "healthy" breast I have made the decision to have a double mastectomy with immediate reconstruction using the diep tram flap method on October 17. I did not come by my decision lightly. I deliberated over this decision for many years. I am finally well enough to finally do this huge surgery. I had so many other health issues and surgeries over the past 8 years that took priority over this. I'm happy I had the extra time to devote to educating myself enough to make a good decision for me. It also gave me time to pick a team I feel very confident in trusting with my care. I am at peace with my decision as I feel it was the best option for me. Please keep me in your thoughts and prayers on October 17 as well as during my long recovery. I will be in the hospital for 4 nights 2 of which will be in the ICU and then will be recuperating at home with help from family and friends. The surgery will be at Evanston Hospital in Evanston Illinois and both my breast surgeon, Dr Yao and plastic surgeon, Dr Geoffrey Fenner will be doing their respective parts of the surgery. Thank you for your support and please feel free to give your input and/or share your experiences with the same surgery. Hope to hear from as many of you as possible. Will be in touch after the surgery as soon as I can. Sure hope my body can handle this and being under anesthesia for 9 hours.
__________________
~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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Old 10-07-2014, 08:23 PM   #2
caya
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Re: 8yrs later I am gearing up for double Mastectomy

I will be thinking of you Rina on Oct. 17th - that is my 32nd wedding anniversary, and the day after I reach 8 years "out" status. A mazeldic (lucky) day!

Good luck and best wishes for a speedy and complete recovery.

all the best
caya
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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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Old 10-07-2014, 08:30 PM   #3
SusanN
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Re: 8yrs later I am gearing up for double Mastectomy

Praying already for you Rina, strength for you, quick healing...no complications/infections...wisdom for the doctors...all the details to God!!
I've REALLY been interested in this surgery...just not sure IF I have enough fat to give...I'm 5'3, usually weigh 120. I live in Nebraska...can have have it done at the UNMC, University of Nebraska Medical Center...yet have had a few problems with prior reconstruction with my PS, yet he feels I can do this...I have yet to have the CT of my abdomen, etc...
Anyhow...will look forward to your updates...so happy you've come this far...GOOD FOR YOU!!
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 10-20-2014, 02:47 PM   #4
Lien
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Re: 8yrs later I am gearing up for double Mastectomy

Hope everything went well! Best wishes for a speedy recovery.

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 10-22-2014, 12:43 PM   #5
Becky
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Re: 8yrs later I am gearing up for double Mastectomy

I am sure all went well. I ponder the same decision as you all the time.

Gain your strength back and we will "see" you here again soon.
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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 10-22-2014, 05:52 PM   #6
'lizbeth
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Re: 8yrs later I am gearing up for double Mastectomy

Wishing you an easy time with the surgery and recovery.

I had the TRAM, and walked bent over for a month until it stretched!

Sure is nice to have a flat tummy.

I'm sure you will look and feel beautiful when it is healed.
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Old 12-28-2014, 12:35 AM   #7
rinaina
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Re: 8yrs later I am gearing up for double Mastectomy

On 10/17/14 I underwent a double mastectomy with immediate reconstruction using the diep flap skin and nipple sparing surgery. It failed and about a week later I was back in the OR for debridement surgery and was left with open wounds and loss of the flap on the right side only. The left side suffered less but the reconstructed breast is too large, too stiff and spread in width due to the wound which has healed well. My options on the right when healing is done which should be soon, are to let wound close and just not try any further reconstruction, take from back and try expander for future implant. The left breast needs further work as well, a lift and reduction. I'm not totally sorry I started this entire process as the biopsies showed a lot of atypical cells and a small neoplasm, however this has been an ongoing nightmare since surgery and I am still healing on the right. I feel so blind-sided by all of this and was so sick for the first 6 weeks. Finally feeling like myself again after suffering with wound healing, temperatures and emotional issues dealing with the horrible way I looked. Chose a highly reputable plastic surgeon in Chicago suburbs based on drs recommendations and patient and friend referrals. He assures me he will get me looking good again but I am so fearful of failure. Struggling with I let this happen to me. If you read my past history on here, I have been through a lot and always did well but I feel I dropped the ball on this one as did the drs because they should have advised me against skin and nipple sparing especially because I had radiation. I am not feeling very confident about a better outcome and so worried. Wondering if I can deal with just no breasts at all. Feeling like I can't. Any thoughts out there or others who have experienced similar poor experiences? So undecided what route to follow.
__________________
~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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Old 12-28-2014, 07:44 AM   #8
Lucy
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Re: 8yrs later I am gearing up for double Mastectomy

Rina - I'm so sorry for the experience you've had. It was a year ago that I was told that I had abnormal cells in my breast and needed a biopsy to determine whether I had cancer or not. I made the decision right then that if I did have cancer, I wanted a double mastectomy without reconstruction. When I was told I did in fact have cancer, that's what I told anyone who would listen to me. And that's what I did. I did listen to doctors who discussed the possibility of reconstruction but I never saw a plastic surgeon because it would've meant delaying the mastectomy and that was my number one priority from being told I had cancer. Plus, at no time was I giving serious consideration to reconstruction. Now, while I don't regret my decision (nor do I have second thoughts about it), there are things that come into play that some times get me down about it. For example, I'm single and would like to date again some day. On what date do you bring up the fact that you don't have breasts? It's going to scare off some fellas and I don't want to be too attached if they're going to react badly but I don't think it's necessarily first date conversation either. Then, a few months ago I was watching a talk show when some celebrity came out in this beautiful dress. I was imagining making a much cheaper version of the dress for myself when I realized that my prosthetics would probably be showing in the dress because it was a little low cut. It bothered me, not for long but it did bother me. One aspect of not having breasts that I like is that I have the choice of what size I will be on a given day. Right now I only have one set of prosthetics but I envision having many pairs in various sizes and having some fun with them. I know the decision I made isn't for everyone and ultimately you're the one that has to live with whatever decision you make but for me I feel that having no breasts gives me more options. The bottom line is you don't have to rush a decision here, take your time and decide what it is you want and what you can live with. Once you know what that is, then you can act on it.
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Old 12-28-2014, 10:04 AM   #9
Catia
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Re: 8yrs later I am gearing up for double Mastectomy

Rina, I am so sorry you had to experience this. I too researched forever what to do after my mastectomy and had decided on the BRAVA procedure which is done by Dr. Khouri, but now also by many other doctors who have trained with him throughout the States. It is a fat grafting procedure that is especially recommended for radiated breast as they are more difficult to operate on and to heal. He will do lipo on you and take that fat and inject it in your breast with two to three procedures. He prepares the breast for this fat cell transplant with the BRAVA device to assure the fat will live. You will have sensation in it and it will be "jiggly" like it used to be (lol).
Good luck on whatever you decide to do!
__________________
Dx: April1st (yes April Fool's Day!), 2011
ER-/PR-/HER2+++ Tumor grade 3 size:1.6mmx1.2mm
Micromet to sentinel node, 5 auxiliary nodes were clear, stage 1B
April 13th, 2011 Double Mastectomy, no immediate reconstruction
May 2011 to Nov, 2011 chemo AC-TH plus
Herceptin until Sep 2012
11/2012 Began GP-2 vaccine at MD Anderson in Houston (monthly shots until April 2013), now receiving booster shots every six months

Began natural breast reconstruction with BRAVA procedure in Oct 2012
With Dr. Khouri at the Miami Breast Center.

Oct 2012 First fat graft
Jan 2013 Second fat graft
March 2013 Third fat graft
July 2013 Final touch-up with nipple reconstruction
November 2013: Vaccine Booster #1
January 2014 Nipple tatooing
April 2014: Vaccine Booster #2
October 2014: Vaccine Booster #3
April 2015: Vaccine Booster #4 (trial finished)
Dec 2015: Scar treatment with Kenalog and laser

Update: 2022 still in the clear and the GP-2 vaccine trial I participated in is moving to 3rd and final phase. None of the women that are in it have relapsed!!!
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Old 12-30-2014, 12:27 AM   #10
BonnieR
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Re: 8yrs later I am gearing up for double Mastectomy

Tina, one thing that struck me about your post was your feeling "how did I let this happen to me?" If I read it correctly. I identified with you because after I had part of my lung removed after a misdiagnosis of Cancer, I spent an inordinate amount if time berating myself for letting this get by me. For not handling it differently (although I don't know how I coukd have prevented a pathologist's error!). I felt it had gotten out of my control. I cried a lot. In retrospect I realize my reaction was largely driven by the narcotics I was on and by my sense of vulnerability We try so hard during this cancer experience to do the right thing and make fact based decisions. Then everything goes sideways!
I don't know how to help you make your next decisions. I can say that I opted to not have any reconstruction and have never regretted that decision. I am older than you and that may have been a factor. I just knew I didn't want anymore surgery or procedures I'm very comfortable I don't even use heavy prosthesis anymore but prefer slightly padded bras like Coobie
I wish you the best in figuring out your path. Stay open to "signs" from others. Keep the faithBonnie
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 02-13-2015, 11:37 PM   #11
rinaina
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Re: 8yrs later I am gearing up for double Mastectomy

Thanks Bonnie for sharing your experience with me. I am glad you have found a comfortable place for yourself. At this point I feel I must try to fix this but not until I am completely healed. One breast is completely healed and the other is almost completely healed. I am crying more then usual too but not on narcotics and haven't been for months. I'm just so overwhelmed with this ongoing nightmare. The latest is I am seeing a PT who specializes in lymphadema because I still have so much pain in my arms shoulders and chest. No one has told me I have lymphadema and I plan on confronting my PS next visit. The problems just keep on coming as a result of me feeling I dropped the ball on this one. I do blame myself for what happened to me because I feel unlike other times I have had surgery, I rushed into it before I had all the self education and facts. Still very upset with myself over this. Also upset I didn't get better guidance from my PS.
__________________
~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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Old 02-14-2015, 08:31 PM   #12
Mary Jo
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Re: 8yrs later I am gearing up for double Mastectomy

Hi Rinaina - I just wanted to say that I'm sorry you've had to go through all this. Please try to not be so hard on yourself. You did what you thought was best, unfortunately, it didn't go well for you. For that I am sorry. I am praying for you. Hugs and love.
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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 02-15-2015, 11:31 AM   #13
rinaina
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Re: 8yrs later I am gearing up for double Mastectomy

Thank you for all the replies and support. It feels so good to have so many caring sisters during this most difficult and unfortunate times in my life. I haven't been coping well and with each set back my coping skills have dwindled but I do have the faith that this will somehow get resolved. I plan on getting 2 other opinions which should boost my confidence when in comes time to make a decision. This has been an ongoing nightmare since Oct 17 with no end in site but I know that there will be. Thank you everyone for your continued support and help. You are so valued.
__________________
~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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