Anyone NOT recommend reconstruction?

Judemo
Judemo Member Posts: 146 **

Hello to all reading my post!  I hope you are all well and getting through your struggles.  I recently found out my BC is more advanced and will be getting surgery in a couple of weeks.  I am on the fence about reconstruction or just going "flat".  I will be undergoing a double mastectomy.  I have read where a lot of women wish they hadn't undergone reconstruction, whether it was flap/autogulous/expanders-implants.  I would love to hear from those who have done these procedures and what do you think about your results?  

 

I think I might be ok with just living with double mastectomy and being "flat" with no boobs, but how do I know!?  What guided your decision?  My husband is supportive no matter what I decide.  Quite frankly, no one is using "these things" (my boobs) anymore! ???

I've always been large busted and desired a breast reduction but due to cost, just never did.  I've told myself several times in my life that I'd be fine without boobs!  But, I want to make a clear headed decision with all the information I can glean.

Does anyone have any advice? 

 

Thanks so much for reading my post.

«1

Comments

  • Phoebesnow
    Phoebesnow Member Posts: 600

    hi,  I underwent instant reconstruction and I am very pleased with the results.  They are not perfect due to radiation but they never were.  I woke up from surgery had the same cleavage and skin as I did before and it was like nothing ever happened.  I am currently 60 and had the surgery at 59.  I did a lot of research used special creams and potions to minimize radiation damage and followed my doctors orders to the T.  Good luck!  

  • Judemo
    Judemo Member Posts: 146 **
    edited August 2021 #3

    hi,  I underwent instant reconstruction and I am very pleased with the results.  They are not perfect due to radiation but they never were.  I woke up from surgery had the same cleavage and skin as I did before and it was like nothing ever happened.  I am currently 60 and had the surgery at 59.  I did a lot of research used special creams and potions to minimize radiation damage and followed my doctors orders to the T.  Good luck!  

    Thank you so much Phoebesnow

    Thank you so much Phoebesnow for your reply!  That's great you had a good experience! Congrats on your new girls!  I'm sure it gave you confidence?  I decided I am just going to live "flat" and go with double mastectomy w/out reconstruction.  I would might still have to have radiation but will find out after surgery.  I guess I made my decision based on what all could go wrong and NOT what could go right.  That's probably not the best way to decide.  I have one last visit with my oncologist surgeon today to discuss.  Thanks again for taking the time to reply.  I'm surprised there aren't that many people who respond on the site.  I see there are lots of people who read these but don't comment.  Thanks again and the best to you !!

     

     

  • ajfunstuff
    ajfunstuff Member Posts: 8 **
    Feels great to be flat

    I went the way of an implant and then removal of it. Only one breast was said to have Stage zero throughout it so I had the one mastectory but when the pathology report stated a Stage One tumor was found when pathology raked through the tissue, I was upset they missed it after having the diagnostics and two biopsies on that side. I was a 40DD. So I questioned that they may have missed something in the other breast since they missed the tumor in the one side. Well when I questioned them, they did find out that the other breast had a Stage One tumor they missed. That's when I decided to get the implant OUT and to have the other breast removed with NO RECONSTRUCTION. I am very happy to be flat. As I say in my book, "Boob in a Box" I used to sing on key but now I'm a little flat. Life is better flat.

  • Judemo
    Judemo Member Posts: 146 **

    Feels great to be flat

    I went the way of an implant and then removal of it. Only one breast was said to have Stage zero throughout it so I had the one mastectory but when the pathology report stated a Stage One tumor was found when pathology raked through the tissue, I was upset they missed it after having the diagnostics and two biopsies on that side. I was a 40DD. So I questioned that they may have missed something in the other breast since they missed the tumor in the one side. Well when I questioned them, they did find out that the other breast had a Stage One tumor they missed. That's when I decided to get the implant OUT and to have the other breast removed with NO RECONSTRUCTION. I am very happy to be flat. As I say in my book, "Boob in a Box" I used to sing on key but now I'm a little flat. Life is better flat.

    Hi aifunstuff!

    Hi aifunstuff!  Thanks so much for your reply!  You made me giggle with your last sentence!  Thanks for that!  I am sorry you had to go through all that you did and that they found extra cancer. I'm sure it was challening with all the procedures and surgeries you had!  I am so happy to hear you are happy with living flat!!  You have a great attitude.

    I have officially decided to go flat!!  I feel so relieved.  I had my last appointment with my DR before surgery this morning and let her know my decision.  She was very supportive and considering there was another type of cancer found, she agreed it's a good choice.  I've been trying to find websites for women who choose to live flat...there are a few.  I might start my own website.  Such brave women who reveal their chest in pics and share with the world.  I love it!  I really admire them as I admire you!!      I have DCIS and IDC.  There is also a strong family HX of breast CA. My DR supports patients who choose to not have reconstruction.  She still encouraged me to see the plastic surgeon (which I did do) just so I knew about all my options.  I have an aunt who is knitting me Knitted Knockers!  Have you heard of Knitted Knockers?  It's an organization of women who volunteer and knit all different breast sized knitted knockers:  different colors, shapes and sizes that you fit in your bra and you can take some of the stuffing out or add some in if needed.  Apparently they are super comfy and very light weight.  

    Thanks again for your reply!

     

  • ajfunstuff
    ajfunstuff Member Posts: 8 **
    Judemo said:

    Hi aifunstuff!

    Hi aifunstuff!  Thanks so much for your reply!  You made me giggle with your last sentence!  Thanks for that!  I am sorry you had to go through all that you did and that they found extra cancer. I'm sure it was challening with all the procedures and surgeries you had!  I am so happy to hear you are happy with living flat!!  You have a great attitude.

    I have officially decided to go flat!!  I feel so relieved.  I had my last appointment with my DR before surgery this morning and let her know my decision.  She was very supportive and considering there was another type of cancer found, she agreed it's a good choice.  I've been trying to find websites for women who choose to live flat...there are a few.  I might start my own website.  Such brave women who reveal their chest in pics and share with the world.  I love it!  I really admire them as I admire you!!      I have DCIS and IDC.  There is also a strong family HX of breast CA. My DR supports patients who choose to not have reconstruction.  She still encouraged me to see the plastic surgeon (which I did do) just so I knew about all my options.  I have an aunt who is knitting me Knitted Knockers!  Have you heard of Knitted Knockers?  It's an organization of women who volunteer and knit all different breast sized knitted knockers:  different colors, shapes and sizes that you fit in your bra and you can take some of the stuffing out or add some in if needed.  Apparently they are super comfy and very light weight.  

    Thanks again for your reply!

     

    Good attitude is essential and the word "tit" is right in there

    Yes, Judemo, I have heard of knitted knockers. Never had a need for them and found it liberating to put all the bras in the trash. My boob in the box is in the closet and I bring it out when I give talks at area libraries (pre-COVID) to show people who are curious about whether to go with any prosthetics or not. I have a very talented seamstress I went to who took all the darts out of dresses and blouses to go with my flat chest because I love my wardrobe and it is not always easy to find clothes when you use prosthetics because the bra is not anchored to anything and the knitted knockers or silicone prosthetcs can ride up. That's embarassing! I know they make them for swimsuits but in my book I make fun of that since they could slip out and either become a pool toy or a flotation device.

  • Judemo
    Judemo Member Posts: 146 **
    edited September 2021 #7

    Good attitude is essential and the word "tit" is right in there

    Yes, Judemo, I have heard of knitted knockers. Never had a need for them and found it liberating to put all the bras in the trash. My boob in the box is in the closet and I bring it out when I give talks at area libraries (pre-COVID) to show people who are curious about whether to go with any prosthetics or not. I have a very talented seamstress I went to who took all the darts out of dresses and blouses to go with my flat chest because I love my wardrobe and it is not always easy to find clothes when you use prosthetics because the bra is not anchored to anything and the knitted knockers or silicone prosthetcs can ride up. That's embarassing! I know they make them for swimsuits but in my book I make fun of that since they could slip out and either become a pool toy or a flotation device.

    Hi ajfunstuff!  I love your

    Hi ajfunstuff!  I love your humor!  Thanks for making me giggle!  I am healing at home after a bilateral mastectomy.  I can't tell you how wonderful it was to throw away my bras!  I don't give a damn about what others will think when they see me now as "flat".  I've gone through a lot to get to "flat" and i'm NOT going to be ashamed of it.  My Aunt volunteers for Knitted Knockers and actually knitted my "knockers" so I think i'll give them a try sometime since she went through all that trouble.  The double mastectomy surgery so far has proven to be a bit challenging, the recovery that is.  While I was in the hospital they had to take me back into surgery to evacuate a hematoma that developed in my right chest after the double mastectomy.  I stayed in the hospital a couple of days.  Initially I was told that I probably could go home the same day, but that proved not to be the case.  How did you deal with the drains?  I still have three drains and had one taken out last week during my follow up appt.  I can't wait to get them all out!!  I found out that I am early stage IDC and DCIS.  They want to start me on Tamoxifen.  

    I think it's pretty awesome that you give talks to the public that can help them reach a decision that is best for them.  That peaked my interest in doing the same.  Not sure how I would go about that, but I guess I could contact my local library.  Thanks for volunteering to do that, which in turn, encourages me to do the same.  

  • anniemshe
    anniemshe Member Posts: 91 **
    Hi. I had my surgery in 2008

    Hi. I had my surgery in 2008 and went for reconstruction but really regret it. Perhaps the surgery at that time wasnt done well or perhaps it's just my body. I found after radiation my implants hardened and the breast is no longer comfortable. I have been through a number of surgeries so have decided to just leave it w the hard implants. But sleeping has been especially uncomfortable. But I just don't want to go through more surgery. 
    So on hindsight I wish I never had the implants. But that's just me. 

  • Judemo
    Judemo Member Posts: 146 **
    edited October 2021 #9
    Hi Anniemshe,

    Hi Anniemshe,

    Thank you for your reply.  I am so sorry to hear about what you have gone through.  That must be really difficult and the fact that it interferes with your sleep is even more stressful.  I completely understand about NOT wanting anymore surgery.  That is why I chose not to get reconstruction.  I am so glad I didn't now.  I am however having issues with seromas and axillary cording and incision problems, but i hope it will all heal soon.  I wish you the best of luck and more comfort and sleep!!  

  • anniemshe
    anniemshe Member Posts: 91 **
    Hi Judemo

    Thanks for your kind wishes. Good for you - I think you made a great decision!! All the best and stay positive.

  • Tracyjo1970
    Tracyjo1970 Member Posts: 4 **

    I had a double Mastectomy 2 weeks ago and choose to wear my scars proudly. I will NOT have implants nor reconstructive surgery. I am happy to be flat... and alive ❤

  • gmamac
    gmamac Member Posts: 16 **

    It was very affirming to read these comments and see how other heroic survivors think and feel. I was first diagnosed in 1991 and had a lumpectomy with no further treatment other than ultrasounds for 5 years with normal mammograms until 2013. I was diagnosed with stage 3 HR+/HER- breast cancer and had chemo, radiation, and a double mastectomy over that year with 7 of 11 lymph nodes positive. I do not regret forgoing reconstructive surgery as I was told then that the double radical further decreased the chance of recurrence by 3% and I enjoyed good years between those dates and still truly enjoy life despite a stage 4 diagnosis this last January. My cancer has metastasized to my hip and chest cavity. I am currently taking Ibrance and an aromatase inhibitor and staying pretty stable. I chose not to have reconstruction surgery and really rarely feel self-conscious. In fact, I got prosthetic breasts after surgery as I was still working and did not want any more attention on my chest. I am now retired and keep my boobs in a box in the closet. Several years ago, I was tasked with explaining to my then 4-year-old granddaughter what happen to my boobies which ended up letting her play with my "pretends"- I have great memories of playing catch with them and watching her carry them around the house and patting them fondly at the dinner table. Best wishes to a healthy recovery to you.

  • ajfunstuff
    ajfunstuff Member Posts: 8 **

    Thanks for liking my humor. You can do the Library talk but it may have to wait until COVID is in the rear view mirror. My talks were a little bit from my book, "Boob in a Box," to help guide decision-making concerning therapies and reconstruction, but my talks focused mainly on how women were made to wear corsets and bustles to appeal to men in our grandmother's and great-grandmother's era. As youngsters, females are encouraged to look like Barbie. Women's self-esteem is eroded by the fashion and cosmetics industry that we need to look better, i.e. more appealing for men to look at. This encourages men to view women as objects. Reconstruction is pushed by the medical profession, partially as a money-maker for the health system and partially for the benefit of men who encourage women to look "complete" if you have breasts (rather than just to be healthy.) I am flat and encourage women in my talk to learn about "aesthetic flat closure" from www.notputtingonashirt.org

  • gmamac
    gmamac Member Posts: 16 **

    I am sure you will help many women make better decisions for themselves and, hopefully, avoid dangerous and painful procedures that may result from reconstruction and implants- not even factoring in the slight, but very real increased risk of recurrence. Bless you.

  • Judemo
    Judemo Member Posts: 146 **

    Good for you Tracyjo! Although I am sorry to hear about what all you have had to endure to get to that point. I am happy you are alive as well! I hope your healing well and feeling better today! I hope you rest and take it easy for a while.

  • Judemo
    Judemo Member Posts: 146 **

    Thanks gmamac. We'll see, so far I'm back to work and it's been brutal getting back into the swing of things after healing. I still feel like I'm healing. I have a physical job that requires a lot of energy. It also feels as if my brain is not the same as it was....I just don't feel as "sharp" as I used to be. 😒Oh well....I press on. I am sending you positive and healing vibes your way. How are you feeling these days?

    gammac!! I just read your comment from Jan 8th! I am so sorry to hear about your current diagnosis. I can't imagine how devastating that was to hear. Please accept my virtual hug from afar. How are you feeling these days? Your humor is something I bet helps get you through some days! Your description of your granddaughter playing with your "boobs-in-the-box made me laugh and made me realize that your a pretty spectacular woman. Were you having pain in the hip and chest that clued you in to getting it checked out? My prayer is for you to stay very comfortable and that those around you can learn from your example.

  • Judemo
    Judemo Member Posts: 146 **

    Did you hear me applauding your statement about the PRESSURE woman have to "look complete" or to look "more appealing for men to look at" and the fact that YOU encourage women to learn about "aesthetic flat closure" !!?! You are my new hero. As soon as I put a period at the end of this sentence I will be going to www.notputtingonashirt.org AND to find your book BOOB in a BOX!! Thank you ajfunstuff.

  • ajfunstuff
    ajfunstuff Member Posts: 8 **

    Thank you for sharing your comment. If you have not seen the film, "Pink Ribbons Inc.," that is an eye-opener about the merchandising of all those items advertised in October, about the money Susan G. Komen raises and how much really goes to research, and opinions from women living with Stage 4 BC. Google it and you will find a trailer on YouTube and info on Wikipedia.

  • RoopyC
    RoopyC Member Posts: 2 **

    I just had right breast lumpectomy on Dec 10th and go tomorrow for treatment consult. I am a nervous wreck not knowing what to expect.....I have read a lot about it and already know I have to have radiation treatments every week, five days a week for 6 weeks and take a pill every day for the next 5 years. Does that sound familiar to anyone?? I would love to hear how others have handled this. Does it hurt? Bad side effects? Hair fallout? I am just so anxious! Oh, yeah, I have had colon cancer,stage 4 in 2008, colon cancer stage 3 in 2019, breast cancer in 2021(also basal cell cancer on my right shoulder removed.) So, this is not new to me, just the radiation and pill part. Any comments will be appreciated, thanks!

  • Judemo
    Judemo Member Posts: 146 **

    Roopy! Wow you sure have been through “it”!! Really sorry to hear about all you’ve been through. I completely understand how your feeling: just the uncertainty of it and haven’t had that experience before. I would have had to have radiation if I didn’t have my double mastectomy. I was told I needed to take a pill (Tamoxifen) for 5 years. My Dr told me I didn’t need radiation since they “got it all” with the mastectomy. I chose not to take the pill. Has your Dr explained everything to you in a way you understand? Do you have support at home? Do you have people you can talk to about what your going through? I wasn’t lucky with having people I could talk to about what I was going through, so I chose to come here to this website to talk to you lovely people. I wish you the best of luck with everything and I will keep you in my prayers. I hope more people will respond. Sometimes it just takes some time for people to reply.