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06-19-2014, 07:25 AM
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#1
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Senior Member
Join Date: Jan 2014
Location: South Florida
Posts: 97
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Double mastectomy tomorrow...starting to stress :(
Tomorrow is the day and I'm really starting to freak out. I don't know why - everyone says the sx is easier than the chemo, and I managed that pretty well (didn't miss a day of work, went on 2 road trips, and 2 out of state trips).
I am second guessing the double decision and second guessing the PS. Tues she started talking about expanders and radiation, when I have never been scheduled for radiation and we had an hour long conversation about immediate reconstruction at our first visit. I just don't like not knowing exactly what to expect and worrying about getting a surprise when I wake up (ie expanders)...
I also have a list a mile long of things I wanted to get done ahead of time and I have a full day at work. Not sure how to shake this uneasiness, sadness, and anxiety I'm feeling right now 
__________________
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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06-19-2014, 07:49 AM
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#2
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Senior Member
Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
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Re: Double mastectomy tomorrow...starting to stress :(
Have faith everything will work out. My PS would make mistakes like that even would call me late at night to correct himself. His medical assistant is the one that keeps him on schedule with what he is doing. During the pre-op she should go over everything that is going to be done so you can get on the same page. Look forward to getting on the road to recovery and getting past one more stage in this journey. Hope all goes well.
Suzanne
__________________
 dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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06-19-2014, 08:57 AM
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#3
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Senior Member
Join Date: Feb 2014
Location: California
Posts: 439
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Re: Double mastectomy tomorrow...starting to stress :(
Crb,
I agree with Suzanne in the sense that some times these doctors mis speak and it makes us nervous. Prior to my surgery my plastic surgeons PA said to me after phase 1 of this reconstruction ( ie expanders) phase 2 will be easy! I looked at him and said what do you mean by phase 2 ? He said when we do your exchange for implants. I said ummm No DR. Bates at Stanford is doing the Diep.
So yes they do get mixed up. And you will meet with all the Doctors in pre op and ask ask ask all questions . As for doing the double mastectomy I'm not going to lie after I woke up it wasn't to bad but 4 hours later they tried to sit me up and it was the worse pain of my life, I was in sobbing tears. They then set me up on a morphine drip and I was fine. I am post mastectomy 8 days and although still on some pain Meds I am doing much better. My left breast had a small 8 mm cancer left and the good breast right no cancer. I am very happy I did both. Any questions feel free to message me.
Tammy
__________________
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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06-19-2014, 02:44 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Double mastectomy tomorrow...starting to stress :(
If you're not certain don't go ahead unless you feel at ease with your decision, once done it cannot be undone and a few weeks delay while researching won't make any difference but don't be rail roaded into something you're not sure of.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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06-19-2014, 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: Double mastectomy tomorrow...starting to stress :(
Thanks Suzanne & Tammy - I'm comfortable that the breast surgeon has it all together! I love her and know I'm in good hands. I'm thinking the PS just didn't look at her notes...and they did mention the morphine drip right off the bat, along with other pain meds to take until they are OK with me taking Ibuprofen.
Tricia- not really second guessing everything, just really nervous. Can't believe that the day is actually here and it is really ME that is going under the knife. All along it has seemed like it was happening to someone else in my mind. I have kept myself super busy over the last 6 months so I haven't had time to stop and think about what is happening.
Just wish I could ease my upset tummy - I was planning on eating until midnight 
__________________
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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06-19-2014, 09:32 PM
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#6
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Double mastectomy tomorrow...starting to stress :(
I am not comfortable with all this talk of doctors making inaccurate statements! You need to be absolutely sure everyone is on the same page before you get into pre op and the ball starts rolling. Have someone with you. Be sure your decisions are in writing and the doctors have signed off on it. Never, ever take anything for granted!
You are in charge of this show and you should take as long as you need to be sure it's running as planned
Why are you having second thoughts about the double mastectomy? Try to look at the reasons you came to that decision. Remember the logic that went into it. I doubt it was spur of the moment! I expect you are very stressed right now. I remember the feeling well. And I am really good at second guessing myself. So I just had to keep remembering WHY I chose the options I did. The ones I could live with, without regret
But please be sure you and your docs, especially the PS, are on the same page
Keep the fsith
__________________
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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06-20-2014, 12:24 PM
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#7
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Junior Member
Join Date: May 2014
Posts: 4
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Re: Double mastectomy tomorrow...starting to stress :(
I am 42yrs...went in for routine mammo...and found Microcalcifications on 4/12/14...had biopsy and MRI...and all came back as High Grade 3 DCIS. I decided for a bilateral mastectomy with reconstruction on 5/20/14. Well, I will say my experience was VERY painful. According to my docs the amount of pain was unusual. However, my right breast (either tissue expander or port..culture showed contaminants) was infected...and was on antibiotics for over 3 weeks. Also my tissue expander were expanded when I awoke...so not much shock. I was very flat chested, so actually woke up bigger than what I went in with...
I am not going to sugar coat it....tissue expanders are not comfortable...but I there isnt any other option for me....I want breasts when this is all done. I will finally have my first expansion since surgery next week.
Oh...and as you can guess since I am on this site...my final pathology indicated IDC .6cm as well as DCIS. I am ER+ (90%), PR+ (60%) and HER2 + (was equivocal with 1st test,then positive on FISH). So next up after my Egg Retrieval is at least 6 yrs of treatment...TCH....then Tamoxifen...to think I went into surgery thinking...that was it for me....HA!!!!
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06-20-2014, 02:07 PM
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#8
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Senior Member
Join Date: Feb 2014
Location: California
Posts: 439
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Re: Double mastectomy tomorrow...starting to stress :(
My biggest problem is the fear of these ports getting pulled out. It makes me afraid to do much of anything . But yea there is no doubt some pain. Im trying to decrease how many times a day I take the pain meds( 9 days post op mastectomy with expanders) . Down to Percocet 5/325 two tabs twice daily. And lots of naps lol. Never slept this much during chemo
__________________
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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06-23-2014, 07:14 AM
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#9
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Senior Member
Join Date: Jan 2014
Location: South Florida
Posts: 97
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Re: Double mastectomy tomorrow...starting to stress :(
Thanks for the responses ladies! I got home from hospital last night and I am so relieved and happy this is all over  Feeling pretty good and I assume that resting and taking it easy is going to be the hardest part of all this....aside from the darn drains
__________________
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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06-23-2014, 11:47 AM
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#10
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Senior Member
Join Date: Feb 2014
Location: Minnesota
Posts: 184
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Re: Double mastectomy tomorrow...starting to stress :(
Glad to hear you are home and surgery went well. Yes take it easy! I had increased fluid from doing too much, because I felt pretty good, drains aside. So be gentle and let people wait on you! Happy Healing!
__________________
[SIGPIC]Lisa
Routine mammogram 12/20/2013
Call back with repeat films on12/31/2013 Ultrasound with core needle biopsy same day
Dx 1/2/2014 IDC ER/PR+
1/10/14 HER2 +
2/14/14 BRCA results negative
2/17/2014 skin & nipple sparing BMX with reconstruction Tissue expanders placed
IDC Stage 2A left breast. 9mm tumor no other CA 1/4 nodes positive
ER + PR + Her2 +(by FISH)
Right breast no cancer, sclerosing adenosis
3/13/14 Round 1 AC minimal side effects
3/27/14 Round 2 AC
4/10/14 Round 3 a little more nausea
4/24/14 round 4 hurray! Done with phase 1!
5/8/14 THP ( taxol weekly x12, Herceptin & perjeta every 3 weeks x 4)
7/24/14 done with chemo
Continue of Herceptin every 3 wks x 1 yr
5/14 start Tamoxifen x 5 years
8/18/14 removal of TEs silicone implants placed
9/14/14 Cellulitis Right Breast, suspect infected implant. Managed with Oral antibiotics, avoided surgery to remove implant. Whew!
12/17/14 nip & tuck revision of Left breast
We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face. The danger lies in refusing to face the fear, not in daring to come to grips with it. We must do that which we think we cannot do. -Eleanor Roosevelt
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