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Need help on reconstruction decision

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BevC View Drop Down
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    Posted: Mar 15 2012 at 4:04pm
Hi. I am struggling with whether or not to get implants, any advice would be greatly appreciated! I am 49, BRAC1+, stage IIB, 2.5 cn, w/ 2 positive lymph nodes. Diagnosed in late Nov. 2011. Finished 4 rounds of AC w/ no problems, 2 rounds of Taxotere. Having really bad reactions to the Tax (fever, infection, etc ). Last 2 treatments will be Taxol related that is given for metastic breast cancer. Dr. says it has less side effects, good reults, but hasn't been widely studied in neo adjuvant therapies. I'll be getting 5-6 weeks of radiation.

After the chemo, I will be having a double masectomy and hysterectomy. Met w/ the reconstruction dr. yesterday. He suggests extenders & then another surgery for the implants. Is that too much surgery at one time two hrs. for the mas., two for the implants, 1 1/2 for the hys.?

I'm very active w/ tennis, biking, & working out. I work at home. I have fairly small breasts & I don't generlly wear tight fitting clothes. I will stay small if I get implants. I was leaning towards not having them, but I'm not sure.

Would love to hear if anyone has had them or not had them and any suggestions or recommendations in making the implant decision. Silicone or saline? Thanks - I am really torn on which way to go.     
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Mar 15 2012 at 5:12pm
You could do one-step small silicon implants with alloderm.  That's just one surgery, and pretty easy recovery if the implants are small.  I did this, healed quickly, and have had no problem with running, biking, yoga, and so forth.    Anyways, I just wanted to let you know that this is an option.
Still, I understand the impulse to do no reconstruction.  It is a little weird to have plastic in your body.  I sometimes wish I had skipped it.
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Mar 15 2012 at 5:14pm
Also, two hours for each breast surgery sounds like a lot.  More like two for both, from what I remember. 
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 15 2012 at 6:18pm
My bi-mx with tissue expanders took about 4 1/2 hours for the surgery.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 15 2012 at 6:58pm
Dear BevC,

I think it is extremely important that you consult a BRCA savvy, TNBC savvy 

-Breast Surgical Oncologist 
-Breast Medical Oncologist 
-Breast Radiation Oncologist 
-Plastic Surgeon

If you have active disease you may need to make that your top priority and if you have radiation therapy that can compromise your cosmetic result but in my view your life comes first. Please make sure to check with experienced professionals.

There is a website called FORCE www.facingourrisk.org that is primarily geared for women with the BRCA mutation and there is a lot written and discussed about breast reconstruction because many women with the BRCA mutation have prophylactic bi-lateral mastectomies but please beware having prophylactic surgery, with no cancer, is a different situation, in my opinion, then when you have TNBC with +nodes.
But, if you post your question there you will probably get a good response.

I would also suggest you pick up a copy if The Breast Reconstruction Handbook by Kathy Steigo. Kathy is a friend but I have no financial interest in her book. I just feel it is a good resource and there are many, many other reconstructive procedures.

My daughter faced the same dilemma as you do re: silicon vs saline. She went to a support group for young survivors and told the young women her problem and almost all of them asked her if she would like to feel’ their implants and she did. Although she is very modest she does the same now.

warmly,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 15 2012 at 7:40pm
I went to see a reconstruction surgeon being I started any type of treatment.  Basically he said, if I am to have radiation, I need to have rads first and allow time for healing before any plastic surgery is to be done. By that time you may feel differently.  For me, after the surgeon finished describing the types of reconstruction that he would recommend (implants with all their problems or a latissimus dorsi flap) I pretty much decided against any kind of reconstruction.
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 15 2012 at 8:41pm
Lee,
It is a very personal decision, and one you must feel comfortable with. I chose not to have radiation. I am still have the expanders in from my surgery in December. I didn't go with any flap surgery, because of the added recovery time and possible problems. I have met a number of women that have gone with it and were so happy with the results.
 
 
I went with the regular implant surgery.Both of the surgeries unfortunately you wind up with drains, for me this was the annoying part. All drains out after about 3 weeks. I do have extra fluid in my left breast that we are waiting to go absorb, in the mean time she keeps increasing the fluid to get to the size that is correct. When I get the next surgery it will be silicone and day surgery then I am done. The silicone these days does NOT free flow like it did years ago. A couple of wonderful girls that I have met have let me feel there breasts (we are a very open bunch arent we? hahaha). So I have felt both Saline and Silicone. Silicone feels more natural, that is the way I am going.
Both of these types of implants have been know to rupture and sometimes needs to be replaced after 10-15 years.
 
On the note of no reconstruction? Mt next door neighbor chose this route, and she is very happy with it. Prothesis for everything. Bathing suits with them already in it, and she has a bra type that has them already in place. So she gets lighter in weight each night when she dresses for bed hahaha.
 
I am sure someone will be along shortly to add additional insight.
I wish you the best, make the decision that is comfortable for YOU.
 
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 15 2012 at 9:42pm
Bev,

I know this is a tough decision and always a personal one.  You are the same age I was when first diagnosed.  When I met with my PS she had a silicone and saline implant and let me hold and feel them.  I thought the silicone was more natural and the saline reminded me more of a water balloon.  I was afraid I'd feel them sloshing around.  I didn't care for the tissue expanders and had the exchange surgery as soon as I could.  To me, the implants don't feel like your natural breasts and I realize they wouldn't.  I don't care for the feeling of the implants under the pectoral muscle but gotten used to them and I guess they feel normal now.  I'm happy with the finished look and from the outside, you wouldn't know I had surgery.

The first time I just had chemo and no radiation.  Then with the recurrence in late 2010, I had chemo again and radiation.  The radiated side isn't as elastic and the skin and implant feels as if it's shrunk a little and harder.  I personally don't know if I'd want to go through more surgery if I had to replace the implants.  I might just opt out and decide on no reconstruction the next time.  

Donna


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Grateful for today View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 16 2012 at 1:01am
Hi Bev,

As said so well already, reconstruction is a very personal decision made in
consultation with one's providers.
With the same clinical status and options and same information, the best decision can be
different ..........how well we know we are individuals with both similarities and differences.
Bev, you are researching and getting info......you will make the best decision for you.

There have been prior forum threads on the reconstruction/implant considerations.
There may be something in them that you will find helpful.
Here's some of them:

http://forum.tnbcfoundation.org/tug-flap-procedure_topic9557.html?KW=reconstruction

http://forum.tnbcfoundation.org/silicone-vs-saline-implants_topic9220.html

http://forum.tnbcfoundation.org/newbie-to-reconstruct-or-not-implant-issues_topic9345.html?KW=reconstruction

http://forum.tnbcfoundation.org/reconstruction_topic9217.html?KW=reconstruction

http://forum.tnbcfoundation.org/expanders_topic9229.html?KW=reconstruction

http://forum.tnbcfoundation.org/right-implant-replaced_topic9119.html?KW=reconstruction


More info at these additional sites:
http://www.hopkinsmedicine.org/avon_foundation_breast_center/
On left of website: click on "choosing reconstructive surgery"
Learn About Reconstructive Breast Surgeries
Pre-operative blood vessel mapping
Tissue expanders (staged reconstruction)
Implants
Deep inferior epigastric artery perforator (DIEP) flap
Superior gluteal artery perforator (SGAP) flap
Lateral septal gluteal artery perforator (LSGAP) flap
Superficial inferior epigastric artery (SIEA) flap
Transverse upper glacilis (TUG) flap
Transverse rectus abdominis myocutaneous (TRAM) flap
Oncoplastic surgery
Also comparisons of reconstruction options at: http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/reconstructive_breast_surgery/options.html
Note: Disclaimer.   I could not delete the last column re: why to choose Johns Hopkins. I included this
        site as the columns that explained the advantages and disadvantages of each type of reconstruction
        had good info.   I am not recommending one facility over another facility.   Facility choice is
        yours and your physician's.

LBBC/ Living Beyond Breast Cancer Ask the expert. Questions and answers form 8/2011.
http://www.lbbc.org/Learning-From-Others/Ask-the-Expert/2011-08-Breast-Reconstruction/(language)/eng-US

http://www.lbbc.org/Events/2011-08-24-Breast-Reconstruction/(language)/eng-US
Click on   "download podcast and slides from this program"

Information if one is considering not having reconstruction.
http://breastfree.org/


With caring and positive thoughts,

Grateful for today...........Judy
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BevC View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BevC Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2012 at 9:56am
Thank you so much for your responses. Everyone is so knowledgable and compassionate. I checked out the websites and links. I apologize for the late thank you. I had a bad allergic reaction to the taxotere.
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