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Old 01-24-2006, 04:32 PM   #1
Monique M
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Questions about Reconstruction

I have been a visitor to this board for the last 6 months and have been inspired and informed by your posts. I finally decided to become a member and this is my first post.



The short and long end of my story is that I was diagnosed at the age of 39 (in August of 2004) and I am HER2 positive. I had a bilateral mastectomy, followed by 8 rounds of adjuvant dose dense chemotherapy (4 a/c and 4 taxol with herceptin). Fortunately, my oncologist was ahead of the curve with the herceptin and I have never had an issue with my insurance company paying for it. I have since been on Herceptin, every three weeks for one year and expect to complete a second year through December of 2006 (as long as my heart function remains good). When I had my surgery, my surgeon did not want me to have immediate reconstruction. I am now ready to proceed and I have so many questions. I would love to hear anyone’s comments on any or all of the following:



1. I still have my port in (located underneath my collar bone). Did anyone have reconstruction with the port in this place? Since I am going to get herceptin for another year, I would like to keep my port but I do not want any complications with the reconstruction.



2. I do not think the tram flap will be an option for me, so I am choosing between saline and silicone implants. I am leaning toward the silicone. I would love to hear from anyone with either silicone or saline implants and why they love or hate them.



3. I have my first consult with a plastic surgeon this Friday—any suggestions on what to ask the doctor would be appreciated.



4. Finally, we have just moved to the BirminghamAlabama area. I continue to go back to MemphisTN to see my oncologist (he is just too good to give up and the 8 hour round trip ride is worth it). If there is anyone in the Birmingham area that has had reconstructive surgery from a local plastic surgeon and would be willing to share their experience, please email me (mkmeadows@hotmail.com).



Thanks for taking the time to respond.

Peace and Blessings,

Monique

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Old 01-24-2006, 04:51 PM   #2
CherylS
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my short term experience

Hi Monique,

I just had my tissue expanders replaced by impants yesterday. I already feel 100 times better! Can't give you much long term, but I did want to mention that I was given the new cohesive gel implant. It is being used all over Europe and women there rave about it. Here you are in clinical trial for it, but you are with any silicone implant. The difference from what I understand with the cohesive gel is that if and when the shell wears out the cohesive gel doesn't leak causing cysts and lumps, and heaven knows, none of us need those! Also, women who have them seem to be very happy with their shape and feel. Any plastic surgeon can get these, and being in the clinical trial for them just means you have to see him three times over the next five years. They are expected to last the same 10-20 years as earlier types, but no leakage when they go. It is said to take 2-6 weeks for them to shape and size themselves, so being bandaged up right now and just one day in to it I can't say much except what I have read about others being very happy with them.

Best wishes!
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Old 01-24-2006, 06:30 PM   #3
Sheila
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Hi Monique

I also underwent reconstruction with the silicone implant, also the new type made by Mentor, and I am also in a study where I must be checked yearly. I waited 1 1/2 years after my mastectomy to have reconstruction done. I was stage 1 when they put the tissue expander in, and Stage 4 when it was removed. Don't know why, but I developed mets to the nodes, and the onc. feels it may have been the surgery....anyway, I wish I had never done it, I have more pain now than I did after the mastectomy, seems I developed adhesive capulitis, which is very common second to infection after reconstruction. My advice is get a highly skilled surgeon, ask for pictures, talk to others who he has done reconstruction on. If you decide to go ahead, be vigilent about checking for any abnormal lumps or bumps....FOREVER! I found mine....made me wonder going to the surgeon 2x a week for saline in the tissue expander, and then all the pre op and post op checks and it was never found. I am at the point where if I felt it would not cause more mets to develop, I would have it removed. Everyone is different, I hope yours is perfect...I thought mine would be, but I've had nothing but problems.
Good Luck
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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 01-24-2006, 10:11 PM   #4
jsattaw
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Hi Monique:

I had expanders placed in July following my mast and will have the replacement surgery on Feb. 15th. My PS is still planning to use saline implants although this new gel implant sounds interesting.

I have a 5-year-old son and also did not want to pursue the tram as it would have a much longer recovery time. So far...so good on the reconstruction.

I found the surgery to be pretty easy and had a quick recovery time.

You might also want to post on the young survivor coalition board as there is a thread for reconstruction issues.

I wish you the best and hope you can identify a local surgeon who's experienced and qualified to assist you.

All the best,

Jill
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Old 01-24-2006, 10:31 PM   #5
Cheryl E
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I did have immediate reconstruction (single mastectomy) 3 years ago. Absolutely no problems!! I stretch my arm daily so that scar tissue does not build. Although silicone feels more natural than saline, I chose saline. I felt more comfortable knowing that if it ruptured, it would be saline instead of silicone going though my body. Apparently if saline ruptures it goes flat real quick and you know it ruptured where as silicone can be leaking and you are unaware.

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Old 01-25-2006, 08:32 AM   #6
Kim
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I had a Left mast with tissue expander placed in 2003, I also had my port put in on the right side at that time.

A year later I had a proph mast done on the right side with tissue expander placed---I kept my port on that side with no problem.

Then in Feb 2005 I had my expanders exchanged for implants, also no trouble with the port.

I opted for inameds cohesive gel implants. I am part of a study and at least at the time I got mine there was a limited number of surgeons doing them and the study was periodically opening enrolling more people. I have been happy with them.

I hope this helps,
Kim
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Old 01-26-2006, 09:19 AM   #7
Esther
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Monique, I had immediate reconstruction done in July 02, with a expanders placed, then they were replaced with silicone implants in Nov 02. I have been very happy with them. No problems at all.

I have a completely natural look,even with low cut tops or tank tops, and no problems wearing bathing suits.

Another plus is that I am back to looking like a perky 20 yr old and can choose to go braless in the summer if I want to. How cool is that! Oh...I would never have had breast enlargement done just for the heck of it, but if I had to go through all this, hey! I rewarded myself by going up a cup size. I love it!
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Old 01-26-2006, 09:23 PM   #8
Monique M
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Smile Thank you!

Thank you all for your replies. Like everyone on this board, I like to get as much information before I do something that will affect my health and hearing from others who have been through it is a great resource.

After going through a hot southern summer with my protheses (sp?), I want to get this done before summer of 2006 is upon us.

Thanks again,
Monique
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