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Old 12-23-2009, 11:19 PM   #1
DianneS
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Bilateral mastectomy support group

I had bilateral mastectomies in Sept. 2008. Though only one breast had DCIS/IDC, I did not trust either one anymore. I feel I made the right decision for me. But it was a difficult decision.

I would like to hear from other women who have had bilateral mastectomies. I am finding that I can't wear some of the blouses or dresses that I used to wear. I wear prosthetic breasts and am kind of getting used to it, but they are a hassle and hot in the summer, but I will not go braless!

Do any of you have ideas, suggestions, or particular brands of bras that you like?

For those of you who have prosthetic breasts, are you considering implants or are you ok with what you have now?

Are the saline implants better than silicone? Are implants painful?

I don't have a cancer breast support group in my area or anyone to talk to who knows how this feels, emotionally and physically.

Would love to hear from you, thanks,

Dianne
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 12-23-2009, 11:33 PM   #2
Jackie07
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Re: Bilateral mastectomy support group

Dianne,

I also had chosen a bilateral mastectomy - same reason as the one you just stated above. I had always been very 'flat', so I am still wearing all my previous 'padded' bras. I know mine is not the answer you are seeking. Hopefully others will see this thread and reply soon.

There might also be some discussion posted previously. You might want to try Searching the old threads with the key words while waiting for new inputs.
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Old 12-24-2009, 05:13 AM   #3
Laurel
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Re: Bilateral mastectomy support group

Dianne,

I chose to go the bilat mastectomy route for the same reason you did. For me there was never a moment that I did not desire reconstruction. My young, skilled plastic surgeon fashioned new "girls" for me with retention of my breast skin and silicone implants to fill in for the lost breast tissue. He fashioned nipples, too! Nice kid, that pc! They are soft and look pretty, darned good. The nice thing for me is that they are comfortable. Rarely am I conscious of them at all! I will tell you the expanders are not much fun, but once you have the exchange surgery you are really nearly normal!

I suggest you visit BreastCancer.org. They have threads there that deal with all types of breast reconstruction and non-recon issues such as prosthetics. They discuss various types of nipple recon and if you send a PM to "tintam" after visiting the site for a bit (so she knows you are not a lurker) you will be given a password to a private site where women post before and after photos of their recon. I found that site to be very help to me in my decision to proceed with reconstruction and really encourage you to visit it.
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

13 Years NED
I think I just might hang around awhile....

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Old 12-24-2009, 09:21 AM   #4
Margerie
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Re: Bilateral mastectomy support group

Dianne,

I also chose to have a bilateral for similar reasons. I had DIEP reconstruction a year after my mastectomies. I am VERY happy with my reconstructed breasts. I too hated the prosthesis. I am very active and it was a pain (I had one mast at diagnosis and one was done at reconstruction)

There is a breast reconstruction site with lots of info and patient testimonials:

http://breastreconstruction.org/

Wishing you the best in your decisions, they are never easy.
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Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
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Old 12-24-2009, 01:53 PM   #5
BonnieR
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Re: Bilateral mastectomy support group

I am in the same situation. STILL have not found a comfortable solution. It is annoying. By day's end I often have pain just from the pressure of undergarments. I would not consider reconstruction but really want a solution. Currently wear Softees alot.....
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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 12-24-2009, 09:47 PM   #6
DianneS
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Re: Bilateral mastectomy support group

Thank you, ladies, for your responses. I don't feel quite so alone now!

I can't have reconstruction where tissue is taken from another part of my body, usually the abdomen, because I have a vertical scar from ovarian surgery and surgeons won't make a horizontal cut because of post surgery healing issues, etc. So my options are to stay with the prosthetics or have silicone implants.

I guess I'm interested in what the expanders are like - sounds like not much fun.

I'd also like to know if lumps can be found as easily after implants? Seems they can be felt easier w/o silicone boobs in the way. What do your docs say about that?

Also....the emotional impact of losing both breasts is overwhelming sometimes, like today when I saw a beautiful nightgown that I considered buying until I realized I didn't have anything to fill out the top part anymore. I almost cried. The influence this is having on my sex life is terrible and the doctors don't discuss this! I don't feel sexy in a nightgown with no boobs. My husband says it doesn't bother him (yeah, right) and that's sweet of him, but it bothers me. That is one of the biggest reasons I am considering in a few years the possibility of implants.

Laurel, you said you had breast reconstruction? You aren't talking about implants, right? How did they do the nipples - I mean, what tissue did they use to make them look realistic? I have heard that the nipple tatoos look pretty good, too....but I don't know.

Anyway thanks for the input and I hope you have a healthy 2010 and a relaxing Christmas season.

Dianne
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 12-25-2009, 10:52 AM   #7
freyja
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Re: Bilateral mastectomy support group

I had the bilateral (same reasons) and I don't wear prosthesis and will not have reconstruction. I love going braless! Of course, I'm a dancer, and I live in Eugene, Oregon...a very liberal town, so it's quite acceptable for me to be flat. Most people don't even notice unless they know me or I say something about it. My C/D cups weren't very comfortable for dancing anyway. I did try wearing prosthetics for a little while when I went to my job. They were uncomfortable and embarrassing when they'd get out of position. I just used lightweight foam ones instead of silicone and I liked that. I also got a bra that was cotton lined, not synthetic. That helped too. I've seen swimming prosthetics that have a curved inner surface so there's water or air flow and they're lighter.
I just personally feel that for me reconstruction is too much pain and suffering for not enough reward. It's complicated, and I like to keep things as simple as possible in this complicated life. True, there are some types of clothes I can't wear, but there are a lot that look great, too. I'm proud of what I've accomplished facing this disease, and therefor am proud of my scars, too. I'm still a sexual being and sexyness isn't about what you've got or not got, it's about how you use what you have! Let your spirit shine and those who are paying attention to what really matters will see how beautiful you are.
Best wishes to you, Celeste
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Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
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Old 12-26-2009, 05:06 PM   #8
Laurel
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Re: Bilateral mastectomy support group

Dianne,

I did have my reconstruction with silicone implants (mentor high profile if I recall correctly). They are very comfortable and never bother me. The only discomfort I have post mastectomy is my axillary scar remains tender.

Again, I strongly urge you to visit BreastCancer.org, another support site where they have several threads ongoing regarding all aspects of breast reconstruction. You will learn a great deal just reading old posts on the site. Very worthwhile, I assure you.

My nipples were recreated with an incision that lifted a flap of skin that was then twirled into a nipple-like ball and sutured down. Last week I had my annual physical with my G.P. She asked if she might see my reconstruction to which I obliged. My G.P. thought my nipples were the real deal and I have not yet gotten them tattooed! She said she just thought I had pale areolas as so many women do. This goes to show you they can make them look pretty dog-goned real looking! I can wear any type of blouse I wish from a low-cut V-neck, to low scoop neck. I've got nice cleavage. No one can tell the difference if you do not share. Seriously.
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Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

13 Years NED
I think I just might hang around awhile....

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Old 12-26-2009, 08:32 PM   #9
suzan w
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Re: Bilateral mastectomy support group

I had a bilateral and had no reconstruction. I, like Freyja, did not want to complicate an already complicated time with more surgeries, etc. I am very happy with my body and also look at my scars as battle-wounds of the fight for my life. Good luck with your decisions, Dianne~! xo Suzan
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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
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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
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Old 12-26-2009, 09:44 PM   #10
DianneS
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Re: Bilateral mastectomy support group

Celeste,

I am amazed at your panache! When you say you are a dancer, what kind of dancer are you? My daughter is an exotic dancer, until she finishes her RN degree. I think it's wonderful that you have a self image and self esteem that allows you to get up in front of people, braless....and not care what they think. You definitely have the right attitude. I think I just need time to come to terms with my 'new' body after having the old one for 55 years I don't want reconstruction either - too much pain & I can't have one anyway due to ovarian surgery. I don't think I want implants either, which is much less surgery than recon but still painful. Thank you for your post...you're right about being a sexual being. It's all in how one projects. I'm still trying to figure that out...and not be embarrassed in front of my husband.
Dianne
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 12-26-2009, 09:47 PM   #11
DianneS
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Re: Bilateral mastectomy support group

Suzan,

You just look like a very happy person from your picture! If implants were needed I'd do it, but for vanity I don't think so. My thinking is that my body has undergone enough, what with the bilats and then chemo. Why stress my immune system more?
I agree, why complicate things - and you look great!
Dianne
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 12-26-2009, 09:49 PM   #12
DianneS
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Re: Bilateral mastectomy support group

Laurel,

Well, reconstruction won't work for me and I don't want to put myself thru surgery anymore. I am noticing so many women who are so flatchested and they don't seem to care.

I'm glad your surgery was a success - one question about recon breasts - do you have to have mammos now?
Dianne
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 12-27-2009, 04:33 PM   #13
cafe1084
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Re: Bilateral mastectomy support group

I had bilateral mastectomies over 3 years ago and have not had reconstructive surgery. I throw it around in my head every now and then, and I may sometime in the future have something done. For now, I wear silicone prosthetics only when I wear clothes that require boobs. The rest of the time, I have gotten comfortable being flat chested, after alot of self-doubt and frustration. I miss my breasts and the sensuality I felt when I had them, but I have come to realize they didn't define me as a woman or as a human being. I enjoy the freedom to wear them or not wear them. Now, when I do wear them, I am uncomfortable and they get in my way. Im not saying it hasnt been difficult to get to this point. The first year was excruciatingly emotional and the loss of my nipples impacted my sex life tremendously, but if there's a will, there's a way. Adapt and overcome!

I have watched blogs/videos , etc about expanders and they look horribly painful. My best friend also has bilat mast. with expanders that were done wrong (not placed properly) and migrated to her shoulders, so be sure to go to a respectable, experienced surgeon should expanders be a choice for you. Can you not have the TRAM reconstruction? Looks a bit morfe painful, but none of it will be a walk in the park, Im sure

Good luck and best wishes
Stephanie
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Old 12-27-2009, 06:44 PM   #14
DianneS
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Re: Bilateral mastectomy support group

Hi Stephanie,

My sister in law's sister had implants done 8 years after her mastectomy, but she was in her early 40's. I guess I feel a bit of a crunch because I am 56. Surgery is hard on the old bod. I don't want to incur more pain and am leaning towards doing nothing at this point. I have heard horror stories, too, of implants gone wrong, even by experienced surgeons. I guess some implants can slip sideways or the body just rejects them.

No, I cannot have TRAM surgery because I have a vertical scar from belly button on down from ovarian surgery. A TRAM would require taking tissue from the belly area, requiring a transverse incision and surgeons don't like to make 'x' type incisions over an existing scar because healing can be a big issue. As well, a TRAM does sound horribly painful. I guess I am not that vain that it's worth the pain.

My sex life has taken a nose dive as well....because I'm not comfortable with this body and miss my nipples, too. My hubby says it doesn't bother him, but what he says and what he is really thinking are two different things. I know he misses them. One thing doctors don't discuss is sexual intimacy after this type of thing. We have been married 17 years now, and I have to be honest - I DO feel like less of a woman. Certainly, breasts don't define me, but they were a big part of being and feeling like a woman. I still have sensation on my chest but scars aren't sexy to me! The thing is, even with implants the scars will still be there. Possibly even a few more to insert the implants.

Thanks for your input. I really appreciate it. I'm still working through all of this, having only been dx in Aug 08.

Dianne
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 12-28-2009, 12:13 PM   #15
Marilyn
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Re: Bilateral mastectomy support group

I had bilateral mastectomies when I was diagnosed in 2000. I did visit a plastic surgeon once but didn't end up having reconstruction. I didn't want to give up the time to surgery, healing etc. I do miss my breasts at times but I knew I wouldn't be getting my breasts back through surgery. I wear prosthetics and a mastectomy bra and get along fine. I have hair that never quite came completely back and have to wear hair pieces and that is more drama for me than the prosthetics. I am used to them after all these years. I own several swim suits that are mastectomy and found them through searching on the internet. I also have a set of swim prosthetics that work quite well.

I don't know if I'm supposed to mention brands on the site so I won't but I have very lightweight prosthetics and they are a major step up from my original ones back in 2000. They seem to be cooler too. I wear a bra that the prosthetic slips into so I have some fabric between my chest wall and the prosthetic as well so that makes it more comfortable. It does take getting used to though. At first it felt so unnatural.

The decisions we have to make aren't always easy that's for sure!
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Old 12-28-2009, 04:58 PM   #16
BonnieR
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Re: Bilateral mastectomy support group

Marilyn, one of the problems with lightweight prosthetics for me is that they ride up in a bra. Not heavy enough. And the whole thing migrates towards my shoulders! lol. And I find that bras cut into my chest and under my arms. I have not yet found a comfortable solution.
__________________
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 12-28-2009, 05:16 PM   #17
freyja
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Re: Bilateral mastectomy support group

I do all sorts of performance and ballroom dance, mostly modern dance and improvisation (if I was an exotic dancer I might feel differently about the reconstruction issue) and I'm now beginning a career teaching dance improv to people with and without disabilities, with an organization call Danceability International. It's all about embracing our physical differences...so I'm well qualified! I'm glad you're getting so many helpful responses to the thread. There are a lot of us out there, and we all handle it our own way.
Celeste
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"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.

"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)

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Old 01-02-2010, 05:18 PM   #18
Cal-Gal
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Join Date: Jun 2009
Location: Los Angeles, CA
Posts: 309
Re: Bilateral mastectomy support group

Hi Dianne-

Thanks for starting this post--I was out of town and saw it and waited to get home to reply. I do not meet many bilat no recon women--

I also chose to have a bilat-same reasons as you-

I was a DDD-in the bc breast and a DDDD in the 'ok for now' breast I was a DD since age 13 and honestly I am ok with my now flat chest. Honestly for me if it was socially acceptable I would go flat all the time--I do go flat when I am alone or around more liberal people--I live in LA--

I wear prosthesis and yes, they are sometimes a pain and do not look like my natural girls--I chose a D cup and am now much smaller-clothes still look funky but also could be my chemo weight gain--

I do not plan on having reconstruction--I also was concerned that should I get a reoccur I didnt want anything in the way of finding it right away this time--

This is me--this is who I am now--and my breasts never defined me--(as far as I was concerned!!!)--

I am single and yes, this whole issue has occurred to me as something that when I start dating again that will have to be dealt with---all I can say is that it will certainly help me weed out the no-goodknicks---and I will truly find someone interested in the 'inner' me--as there won't be a choice--again--I will deal with that when I start dating--and I get it probably won't be easy--but for now, I have so much other 'stuff' on my plate that I am not thinking about it right now.

There is a website that may interest you

http://breastfree.org/


found it on the wwwbreastcancer.org website

Be well---
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED

12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line

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Old 01-13-2010, 09:43 PM   #19
gumoore
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Join Date: Oct 2006
Location: Victoria, BC - Canada
Posts: 21
Re: Bilateral mastectomy support group

Hi Diane,

I too chose the prophylactic option with my other breast. I chose not to do any reconstruction immediately because I wanted to be sure of my choices ~ and what if I was comfortable with being breastless? Unfortunately I did develop a chest wall abscess after surgery and do have a ridge scar. Prosthetics would probably not fit well or comfortably, and so I've never been bothered with those either.

So, here I am 2 1/2 years later and I'm still breastless. I went from a double D to a flat chest. And guess what? I'm comfortable being naked around my husband and being in public, at work, etc. I do struggle with tops and I do sometimes have moments where some lingerie looks really good - on the hanger, not on me.

Recently I began to explore what reconstruction would mean for me and the fact is, any surgery at this point would be one to three procedures: tissue expanders, surgery for the build and possibly surgery for final touch ups. Not the least of my problems would be the adherence to the chest wall at this point. The truth is, I should have done it a lot earlier than now. And I wasn't surprised or disappointed. More importantly, I decided it wasn't worth any more surgeries. I've had enough.

On the other issue of sex, my sex life has toileted but I don't believe that's because of my chest, it's because of the drugs I've been on and the fact that I am now menopausal (had a full hysterectomy too). I will say that I had an opportunity to attend a workshop in at the World Conference on Breast Cancer in 2008 with Dr. Anne Katz. I shed many tears there. But I came away with a game plan. My husband and I began with touching - getting to know my new body and being comfortable and we progressed from there. It's mostly about his release.

All the best.
__________________
Gayle
_____________
Live Strong
IBC dx August 9/06
ER/PR +2

HER2/neu +

chemo August 11/06 - January 8/07

herceptin - 17 treatments, every 3 wks - end Jan 2008

IMRT rads 5 weeks

surgery May 1/07 bilateral mastectomy (left modified radical, right simple)
prophylactic bilateral salpingo-oophorectomy March 2008
letrozole, 2.5 mg daily, start June 2008
lymphedema, left arm, April 2008
osteoporosis, lower spine, August 2010 - fosamax 70 mg

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Old 01-14-2010, 09:51 AM   #20
Jaimieh
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Join Date: Mar 2009
Posts: 126
Re: Bilateral mastectomy support group

I chose a bilaterial Mast. with immediate reconstruction (haha...what a joke). The TE pressure was very hard to live with and I finally got comfortable about a month before my exchange. After my exchange it was immediate relief and while I healed at 7 weeks the seroma's started until and holes were formed until I had to exchange my implants to a smaller size. Then 3 weeks after with implants that were 1/3 smaller I developed more seromas. After having the holes stitched 3 times I had them removed. There was something wrong though and while it was painful I would have done it again.

Now after reviewing my options with my PS who I just think is wonderful I am having either lower lumbar gap or Sgap in 12 days in NOLA.

I want to ditch the prostetics. I have found finding clothes almost impossible and then I am worried the entire time about my prostetic showing. I am getting more comfortable with my concave chest but I really liked having breast better than without. So when I come back from NOLA I will come back and update
__________________
Diag. 12/24/08-
IDC 1.3 er-/pr- HER2+
Grade 3 0/2 lymph nodes
no angiolympathic invasion

Bi-Lat. Mast. 1/8/09
Exchange scheduled for 6/17/09
Lost implants due to unknown reason :(

Hip Flap 1/26/2010 in NOLA :) LOVE EM'

TCH x6 (6 done and I am hoping to never do it again )

Well so much for never...
Local recurrence May 25,2014 is left over breast tissue.
April 2 , 2014 lumpectomy
April 28, 2014- June 9, 2014 start AC x 4
Taxol x12
Perjeta x 6
Herceptin x 18
And 33 rads just for fun. NOT!!!
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