Go To Main TNBC Website


  New Posts New Posts RSS Feed - Anyone opt out of reconstruction?
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Anyone opt out of reconstruction?

 Post Reply Post Reply Page  <12
Author
Warriorkat View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 22 2018
Location: Atlanta
Status: Offline
Points: 32
Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorkat Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2018 at 8:32am
Thanks

Edited by Warriorkat - Apr 25 2018 at 8:44am
Gratefully,
Kat
Back to Top
Warriorkat View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 22 2018
Location: Atlanta
Status: Offline
Points: 32
Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorkat Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2018 at 8:43am
Mainsailset
Thanks for sharing your experiences. It helps so much to hear from you and to know generally what to expect!. I’m a physical therapist by training so I’ll be requesting PT to help restore motion but the idea of the drains does freak me out a bit - that’s why I didn’t go into nursing😜 But we do what we have to and I’ll get through this just like so many before me. I’m leaning towards a double mastectomy. One and done hopefully.

I also hate taking medication- ironic isn’t it?! - but I assume I’ll need something post op. Do you remember what they give after surgery? I get Benadryl now as a premed with Taxol and I immediately feel drugged and then sleep for hours when I get home! The only major surgery I’ve had previously is my c-section and after a week was feeling much better....of course that was 15 years ago!
Gratefully,
Kat
Back to Top
cheeks View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 14 2011
Location: North Carolina
Status: Offline
Points: 652
Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2018 at 11:43am
Thank you Donna. I was going to message you last night. You are so good at finding the links !

Kat,
Even though I had my mastectomies separately I did not notice too much difference other than things my surgeon would and would not allow. Specifically, I was allowed to shower 2 -3 days after my first surgery and he hung my drain line on a lanyard around my neck. This time I was covered in bandages on top of the steri strips and not allowed to fully shower until the bandages were removed and the drain line was removed. My husband washed my hair for me. I spot bathed other parts and did get in the shower with the removable shower head to bathe from the waist down. My husband helped with that part as well for the first two weeks until I had a little more mobility. Having the right side done this time and being right handed was more of a challenge. Getting in and out of our big truck using my left foot and arm. They have such good nerve blocks for the entire area I experienced very little pain. Mostly the port and drain line insertion point. I think it was aggravated by the surgical bra. I got them to order a surgical camisole that did not put any pressure on that area and felt much better. Not being able to raise my arms above waist level was a challenge but doable with help.
My very best thoughts for you while you are going through everything and making so many big decisions.

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.
Back to Top
Warriorkat View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 22 2018
Location: Atlanta
Status: Offline
Points: 32
Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorkat Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2018 at 6:11pm
Blair,
Thanks for sharing and for your thoughts! So many life changing decisions in such s short time😜
Gratefully,
Kat
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 4946
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2018 at 8:52pm
Kat, I remember after surgery they gave me a script for oxy. I still have the bottle after all these years as I never used it. Honestly, the nerve pain annoyed me more than it hurt and the stitches weren't painful, well they did get itchy. Most of the issues I had were just the inconvenience of the grenades. I did figure out a trick of how to drain them using a ball point pen and rolling it over the tubes. It may sound icky but really wasn't that bad.
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
Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 929
Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2018 at 1:14pm
It's true that the odds of recurrence in the other breast is rare, or in the same breast under ideal circumstances with lumpectomy. Blair and I are proof of that, we are treated like unicorns with our very rare recurrences. Both of us are told we probably have some as yet undiscovered mutation. My surgical complications all stem from radiation damage from my first time, plus a bad decision by my plastic surgeon to cram expanders under my badly damaged pec muscle anyway. It was a perfect storm of awful. My ongoing pain issues now are scar tissue and severe nerve damage which I think are mostly from all of that. It's like I'm wearing a way too tight corset 24/7 on the whole left side of my torso.
If I was making a decision now, and I could feel safe only having one breast removed I'd most definitely choose that, especially if the afflicted breast was on my non-dominate hand side. But of course I really don't care at all about how they look, I've got no vanity left when it comes to my murderous boobs.
Despite all of my damage and issues I'm doing a lot with my arms and hands these days! I've not gone back to work, so my "hobbies" are what I do full time. We're doing a historical restoration on a Victorian built in 1895, it and the 3/4 of an acre it sits on have been neglected for over 15 years. I'm restoring antique furniture, light fixtures, and house hardware - stripping, sanding, finishing and painting is a lot of physical work! And yard work - we started with a freaking jungle - I pulled weeds this week til I thought my arms would fall off. My point is, even with a pretty worst case scenario of surgical complications I'm able to do extremely physical stuff now day in and day out. I was released from wound care the end of August last year, bailed on my second round of physical therapy late November. Occasionally I need muscle relaxers (muscle spasms and cramps), pain meds, Lunesta for sleeping, and I'm currently a month in taking gabapenton(sp?) For nerve problems. Edibles can help with all these issues except the neuropathy,but I only use those when I'm for sure staying home and for sure not doing anything tricky because they make me......stupid, lol. Lots of folks say they don't like taking pills, but I think, and my many doctors agree with me, selectively taking these meds when the issues at hand arise has kept my quality of life high and kept me able to do what I want every single day. Less suffering + being constantly active has greatly improved my mental state, the anxiety, depression and general sad dark state I think everyone experiences thru this process we are forced to do. Don't set yourself up to fail by deciding at the outset that success to you is not taking medication no matter what. These are extreme treatments and surgeries, listen to your doctors, do not force yourself to live in pain, high anxiety and sad dark depression. Quality of life is always important, especially when you are fighting your way thru life threatening disease!
PS: I started yoga. I can tell already it's something I need to do and eventually it will help. But for now.... I'm hating that bendy beotch forcing me thru this torturous process #NoPainNoGain
PSS: the gabapentin is doing zero for me. My hands fall painfully asleep constantly. I'm giving it a week more max to work, then I'm done with it. The only side effect is heartburn at night.
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!
Back to Top
Warriorkat View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 22 2018
Location: Atlanta
Status: Offline
Points: 32
Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorkat Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2018 at 2:13pm
Thanks Kelly for all. So happy to hear even with all your challenges you are able to do physical work- even if it’s not paid work😉 All the different professional hats I wear require movement- physical therapist/massage therapist and naturalist/teacher (hiking). I’ve always loved old Victorians and appreciate your passion for restoration. And am a little envious!

Though I hate taking meds, I certainly take what I need to function and appreciate that they’re available. Pain meds can be helpful I just hate the way they make me feel. I had an Rx for something post c-section that I didn’t take once I got home and thankfully didn’t need. BRAC - but there’s an extensive cancer history- mostly melanoma- in my family so who knows if it’s a yet to be determined genetic factor or not. I have a few months to decide and I’ll see the surgeon in a few weeks to get more info. I guess my thought/hope is that if I choose a double mastectomy now maybe I can just be done.
Gratefully,
Kat
Back to Top
cheeks View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 14 2011
Location: North Carolina
Status: Offline
Points: 652
Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2018 at 9:17am
Good morning Warriorkat,

I just re read some of your posts and saw you mentioned concern with dealing with the drain(s).
Vanderbilt gave me very detailed written and verbal instructions on what to do and when.
Several times a day you have to "strip" the tubing. What that involves is holding the tubing securely close to the insertion point with the fingers of one hand. Taking an alcohol pad in the fingers of the other hand and running it firmly all the way down the tubing to the bulb. This gets extra fluids down into the bulb. Do use an alcohol pad because it helps the downward movement on the tubing glide easily.You do this with the cap open on the bulb. Then you compress the bulb, close the cap and put it back in the pocket(s) of your camisole.
Twice a day you empty the contents of the bulb into a measuring cup they should provide. Record how many cc's were in it each time. Vanderbilt provided me with a notebook and forms to complete.
My surgeon stressed the importance of writing it down so she could determine when to remove the drain.
This did require my husband's help. I held the tubing secure to my body (felt pretty protective about that...did not want it accidentally pulled out) He used the alcohol pad to strip the tubing.

One of the things I am learning this time around is to let him help more. Neither of us have much control in this situation. He is affected by all of this because he loves me. Doing these things and helping me helps him feel less helpless.

I hope this helps alleviate some of your worry about the drains.


Blair

Edited by cheeks - May 02 2018 at 9:24am
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.
Back to Top
Warriorkat View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 22 2018
Location: Atlanta
Status: Offline
Points: 32
Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorkat Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2018 at 12:11pm
Blair thank you! Yes this helps me a great deal. I am one who likes to understand every aspect of what I’m signing up for. Thanks for reminding me too that I could let my husband help more, not just with the drains but in general. He really tries and often I insist on going it alone... the stubborn independent woman that I am. I’m learning slowly to accept help😘
Gratefully,
Kat
Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 929
Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2018 at 2:27pm
My husband takes great pride in his drain care skillz #TrueLove
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!
Back to Top
cheeks View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 14 2011
Location: North Carolina
Status: Offline
Points: 652
Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2018 at 3:03pm
Kelly,
   
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.
Back to Top
Penny View Drop Down
Senior Member
Senior Member
Avatar

Joined: Dec 28 2016
Location: Sacramento
Status: Offline
Points: 123
Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2018 at 7:05pm
Hello!  

I have completed my reconstructive surgery on the non affected breast.  Surgery was much easier than I thought it would be.  I am symmetrical now and doing very well.  Only needed the pain meds for the first few days.  I am so incredibly lucky that my insurance felt it important to authorize full coverage for this procedure (I probably wouldn't have had it otherwise).  Somehow I feel lighter in step and relieved.  Like this "correction" surgery solidified I am on the other side of this journey.  You never know if there will be a recurrence but I am choosing to live "as if".  Putting worry and anxiety behind me.  I hope each one of you reading this feels that the same since of peace and calm that I do at this moment.  I will always return to this site to read and support my sister's in this battle.  Thank God I found this site and formed wonderful relationships with many of you.  

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.

Back to Top
Warriorkat View Drop Down
Newbie
Newbie
Avatar

Joined: Feb 22 2018
Location: Atlanta
Status: Offline
Points: 32
Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorkat Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2018 at 8:05pm
Penny I’m so happy to hear you are able to feel at peace with it all now! I still have 5 more weeks of Taxol but I’m seeing my surgeon tomorrow to discuss my options. I’m hanging in there but am experiencing neuropathic changes in my fingertips and toes despite icing during infusions. Hopefully that will reverse with time. I will be grateful when this chemo wraps up and my appetite returns.

My greatest concern now is the recovery process from surgery. I’m glad you didn’t need pain meds for very long. Hoping I manage as well.
Gratefully,
Kat
Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 929
Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2018 at 8:41pm
Congratulations Penny! Just in time for summer, you should celebrate being done with treatment ALL summer long :)

There are laws requiring most insurance providers cover reconstruction including surgery to make them even. They also have to cover prosthetics. There's no time frame either, you can do it immediately or anytime in the future. See more info HERE
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!
Back to Top
 Post Reply Post Reply Page  <12
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.