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Anyone opt out of reconstruction?

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Warriorkat View Drop Down
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    Posted: Apr 23 2018 at 12:36pm
Dx in Jan 2018 and this week will be #4 of 12 Taxol after finishing the 4 rounds of AC. I've talked with many survivors and only 1 person has been happy with her reconstruction (implants at the time of mastectomy) with no revisions needed. Every other person I've spoken with has needed multiple surgeries and many still aren't happy. 

I'm 51 and I'm thinking I'll just have the mastectomy and call it a day. Maybe wear a prosthesis. I really don't want to waste my body's energy on reconstruction - I'd rather rebuild my health and immune system to fight off cancer. I just want to be sure. Looking for experiences/opinions. 
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2018 at 3:44pm
My reconstruction surgery is scheduled for May 9, 2018.  I will post back and let you know how things are going.  Best of luck to you my friend and sister in this dx mess!

Penny  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2018 at 5:19pm
I lived thru a reconstruction fail last year, 2 more surgeries and 9 months of wound care. And my chest is quite damaged, starting physical therapy again soon, for the 3rd time. I had damage from radiation, but still. Prosthetics are great, I have 3 kinds, all different sizes and weights, I would be quite happy if my chest wasn't screwed up!
And the thing is, I was always thinking i
I'd not do reconstruction. I was talked into it by my doctors. My husband was against it, but supportive to whatever my decision was. Boy do I regret not just going with my gut.
If you choose to go flat permanently, have a very firm talk with your surgeon. Tell them you want the surgery done to give you the best flat outcome possible without any concessions that you "might" change your mind. No flabby sides, extra skin left for possible reconstruction, no dog ears, etc. Ask your surgeon if you need a plastic surgeon to do the close to give you the best permanently flat chest? Fight for it!
My husband likes saying, "put on your big boobs baby we're going out!" , lol.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Warriorkat View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorkat Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2018 at 5:28pm
Thanks Kelly. I’m a licensed PT and through my years only saw the reconstructions that had complications so I’m very wary! I had a surgical consultation before chemo and he did mention the option of either leaving room or making a beautifully flat close so I’ll definitely be revisiting that conversation. And request a plastic surgery consult maybe. Very helpful! I wish you the best going forward💕
Gratefully,
Kat
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2018 at 5:35pm
Warriorkat,
Same feelings here. I was 51-52 with my first primary. I had a mastectomy of my left breast. I looked at the options for reconstruction and did not like any of them. Since this new primary and mastectomy of my right breast at 61, I may, at some point, do something but definitely not anytime soon and only IF it requires very little...maybe expanders and implants.
Reconstruction can be done anytime. A friend did hers 20 years later. Do not rush. Let your body heal is my advise. We have already been through so much.

Blair
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2018 at 6:00pm
Even with my chest being a "sh!tshow", now that I've got months of healing it doesn't look that bad. The left side is the super screwed up side, but it's the right flabby dog ears thing that's physically unappealing. so "beautifully flat" sounds totally achievable.
Quick story: e bought a new house we are doing major renovations on before we move into. We stay there now sometimes. It's got a 3/4 acre backyard that is completed private, with a pool. it was super overgrown, so I've been doing hours and hours of yard work. My husbands away on business for a week, so my dog and I have been going back and forth. Saturday afternoon I was pulling weeds and sweating my butt off..... So I ditched my shirt. I don't have breasts, so it's hardly indecent, so I thought why not? it was incredibly liberating. I decided I wouldn't freak out of someone came in the gate or popped their head over the fence. I'll be swimming topless whenever I feel like it now, my husband is all for it. Probably not intentionally in front of people, but not going to sweat it if someone other than the hubs catches me.
I was this way with my bald head this time as well. The first time I wore hats and scarves all the time, this time did not care at all. I got more compliments on my naked head than I ever got on my hair! Anyhoo, it's all in how you think about it. I've given up being stressed, worrying or being upset about So MUCH now - it is serving me very well. I feel like I learned the life lesson this time, that I just didn't get the first time.

Edited by Kellyless - Apr 23 2018 at 6:01pm
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Beth TNBC Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2018 at 9:16pm
First off I want to say Kellyless, I love love love your attitude!!!

I am 6 weeks post R side mastectomy. I am strongly leaning toward not having reconstruction. I'm 63, my husband passed away 8 years ago and no prospect of a 'gentleman friend' in sight, so no need for vanity.

Questions:

Has anyone considered no reconstruction but a breast reduction on the non affected breast? Have always had huge boobs and after my 30's gravity took over and they were not very attractive. The thought of a smaller boob, maybe a full B and same size prosthesis is very appealing.

What is your experience with swimming while wearing a prosthesis. My Breast Clinic has a wonderful boutique and I found cute suits with prosthesis pocket but I wonder what chlorine and/or salt water might do to the device.

Beth
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 12:27am
These are my newest boobs http://www.radiantimpressions.com/pages/products_page_1.html
The individual ones, not the whole chest thing. They laser measure your chest, so they fit better and you don't have to use a pocket bra. In theory, we've sent them back once, and I'm going to go back again because they ride up. Insurance paid for them. The nipples are a nice touch - You choose the size, projection, color, etc. And they're fine for swimming - ocean, lake, pool, it's all supposed to be fine.
Last summer we did a houseboat vacation on a lake with a bunch of people. I'd just been released from wound care finally so I'd not gotten any prosthetics. I got a bathing suit with the stiff cups and just swam with them empty. Jet skied and everything with no issues. Next time I'll use the new waterproof boobs though. I was a D cup before, so it's more natural around my friends and family in a group setting, ya know? But at home... Nope, probably will skip them. The only close person it bothers is my mother in law, so for her sake I wear them if I know I'll be around her. I've gotten used to putting them on when I leave the house, but I usually shuck them when I get home. They're great for the shoulder strap on the car! I've always hated shoulder straps, but all 3 pairs of them protect me from the annoyance of those things! #bonus
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (1) Thanks(1)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 10:37am
Kelly,
I got the same thing from the same company for my left side right before my new diagnosis. I haven't been quite satisfied with it. It looks good, but I find the material a little sticky and have problems keeping it in place side to side and up and down even with the tab. Maybe I just need different bras to keep it in place better. Of course, right now I am not using anything until my chest heals. I would probably have both sides made this time...the left again for a good fit with both of them. I am just not quite sure if I love them like I thought I would. Time for that later.
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorkat Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 10:46am
Thanks all! Just saw my onc and insurance will cover a double mastectomy. Only have CA on one side. How tough would that be? Would you have done a double? Something to consider now for me.
Gratefully,
Kat
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 11:29am
Warriorkat,

If I had known. It is certainly something to consider. I think, and I may be wrong that what has happened with Kelly and myself is unusual for women who are not BRCA positive. My doctors now believe it is something genetic although I do not test positive for anything known at this time. My original tumor did not recur or metastasize. This is a new primary.
What were your doctor's thoughts ?



Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Warriorkat View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorkat Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 11:51am
She thought is was a personal choice. It would give me piece of mind to not have to go through annual screening and it may help me feel symmetrical. Just concerned about recovery after a bilateral
Gratefully,
Kat
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 12:43pm
I understand. There are quite a few women here that did both at the same time and I would ask them what it is like and what to expect.
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Beth TNBC Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 4:47pm
WarriorKat,

I also had TNBC in only 1 breast and asked my surgical oncologist about having a double mastectomy. In a nutshell, he said he would if I insisted but he advised against it and here is his reasoning:

-chance of it showing up in other breast is statistically slim
-surgery will be longer, recovery more difficult, longer recovery time & increased chance of infection (my tumor was quite large plus I had 25 lymph nodes removed
-it would not be a cosmetic type surgery ie: fat rolls, side boob etc would not be addressed

Based on all this plus my anxiety about the surgery in general, I decided on the single mastectomy.

Hope this is helpful for you.
Beth
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 5:52pm
I had a dbl mast, no reconstructive surgery. When things healed I had a bra burning party. Every day I celebrate going hiking with no sweat under my breasts that make a bra uncomfortable, I love going horseback riding with no bounce...

It just worked for me, partly because I live a great distance from my onc and surgeon and the idea of having to go back and forth if things didn't work out bore heavily on my decision. It was bad enough to have to drive 350 miles a day to get radiation and then arrive home to a pile of work to be done. There's just always a lot to consider.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 6:11pm
M,

I think she would like to know what recuperating is like when you have a dbl. I know there are lots of old threads talking about it and hints and helps for afterwards. I just do not remember how to post a link.

Blair
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorkat Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 7:08pm
Thank you all for sharing. I do wonder what recovery looks like with a double mastectomy. Will I be able to manage the pain? Will I be able to properly rehab when both sides are effected? Will I be able to find a position to sleep in? I’ll also look back in the archives and see what others have said.

I’m fairly active and do not have a corporate type career nor do I typically wear tight fitting clothing or cocktail dresses and I’m 51 and married. If I were 29 or dating I might have a different view. I just want to put this all behind me (well, as much as one can) and get back to living.
Gratefully,
Kat
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2018 at 10:53pm
Hi Kat, I can tell you that both my sister and I had dbl's about 6 months apart. She came home same day as surgery and a nurse came out to help her the next morning with getting used to the drains that they put in. She did not experience much pain at all. Her doctor told her to wait a week to 10 days before she took a shower. Every day the nurse came out and emptied the drains.

My experience was much different. I had surgery and was kept in the hospital over night. They kept me on a saline drip overnight (which made me pee endlessly and thank gawd for my girlfriend who got me to the loo over and over again). My doc sent me home in am, told me I could take a shower the next day and then showed me how to take care of the drains myself. The drains are a bulky pain in the rear and also messy so I suggest buying some really cheap tank tops to wear for a few days. The scar can ooze as well as the drains (the drains go into a plastic bottle that's the size of a grenade...)

I had zero pain. The next day I took off most of the bandages (like the surgeon told me to do) and then put a long necklace on that I could clip the grenades onto and dragged myself into the shower. Worked like a charm.

A couple of days later I went back to the surgeon, he took out some of the 'staples' and left the bandage off. As it was healing it was starting to get itchy so I asked the surgeon if I could put ointment on the area. We settled on bag balm and that worked well, but again it makes a mess of a tank top. Over the tank top I wore a hoody and that seemed to be a good choice because I could zip it up, I used an oversized one to give plenty of room to the 'grenades'.

My surgeon saw me every few days for the first week, then 1x a week for the next 3 weeks. It was up to him, he told me, to make the judgment call when I would be healed enough to start radiation. I think it was about 4 weeks.

During the 4 weeks I slept mostly on my back, I hiked about an hour a day, was careful not to overdo or reach up high and pull anything heavy down from a cupboard. The nerves in my arm on the tumor side stung but they quieted down after about a month.

Comparing my experience with my sister's I think I had a better journey and I'd recommend a surgeon who wants to keep you overnight after surgery. Hope this helps.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2018 at 8:09am
Hi Kat,

I found an old thread where members gave some advice on recovery after a bilateral mastectomy.



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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorkat Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2018 at 8:27am
Thanks! I’ll check it out!
Gratefully,
Kat
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