What's wrong with NOT having reconstruction?

Sdawells

I feel the need to vent a little and this seems to be a safe place to do so.  I had a double mastectomy backing in /september with expanders placed for reconstruction.  It was trouble from the start and about 8 weeks later I had to have emergency surgery to have them removed due to a severe infection. I never even got to have any fills.  I was told that I could revisit recon at a later date.  My priority has been getting through chemo, (less than half way done). My problem seems to be that everyone, including all my doctors seem to think that I should start reconstruction again as soon as my chemo is done.  They make me feel ugly! What is the matter with me staying like this.  Yes, I am very aware that the feminine form is usually a lot more curvy than mine, I can wear my prothesesis when I chose to, I find them heavy and not too comfortable. My husband seems to feel the same as the doctors and I'm beginning to feel that my breasts are for everyone but me.  I should mention that I am 55 years young and in otherwise excellent health. I have had a total of 12 different surgerys in my life for everything from fibroids to gall bladder and the thought of another time under the knife terrifies me.

I would love to hear from some of you who did not have reconstruction on how you dealt with it, your own feels as well as the treatment you get from others.

thanks all

Fairemewell

No reconstruction for me

I am sorry that you are having trouble with everyone regarding this, espically your husband.

I am lucky that my wife understands that I have not wanted reconstruction from the start and she is accepting of my decision.

This really is your decision. It is your body and you are the one who has to be okay with this. I guess I am lucky that my onc. and my surgeon were both supportive of my decision to skip the reconstruction. As for your husband, hopefully he will come to realize that fake breasts do not make the woman. How you see yourself is the most important.

Personally I am glad for my decision as I had to have chemo first and my healing is really slow, and I have had trouble with having parts of the incision opening up creating "holes" in my skin.

I hope your skin has healed/sealed up well.

The most inportant thing is how you view yourself. I may joke about being re-clasified as I no longer have most parts that are the standard clasification for female (I had a complete hysterectomy two years ago with my first cancer) but I am just as female now as I was before this all started. Anyway, I am sure there are others here who can give better advise, but know I am rooting for you no matter what you decide.

Tyler

McMarty

Hey girl!  You quiet the

Hey girl!  You quiet the whole world and see what's in YOUR heart!  I did have reconstruction (DIEP Flap) at the same time as my mastectomy and I have kind of a love/hate relationship with that thing.  Imagine having a prosthesis you can't take off!  I made MANY wrong decisions based on what was best for my family, what my husband wanted.  I also made A LOT OF GREAT decisions when I shut the world out, did my research and figured out what was right for me.  NO ONE knows what you are going through but you! 

The Dr's are under some pressure to make sure you are aware that reconstruction is available.  Just because the majority of women may be frantic to get their 'form' back doesn't mean YOU have to rush!  You may have 'bigger fish to fry' right now.  I bet you are well aware of the options available to you.  If I were you, even if I were me ~ I would tell my people (especially my Dr) NOT to speak of reconstruction anymore.  Tell them they are making you feel ugly and unaccepted and if/when the time is right you will know it and bring it up. 

Relax, you don't have to make that decision right now.  Right decisions take TIME!  You are beautiful and unique and important - if you are happy and making decisions at your own pace you will have more to give.

PEACE to you!

mom62

Nothing Wrong

This is nothing wrong with NOT having reconstruction.  I had a radical masectomy in 2003 and have never had it.  I had all my kids already and really didn't care and neither did my husband.  My doctor revisited it a few years ago after I had a recurrence and I told him I would never have any surgery unless it was medically necessary.  He agreed with me.  It is a personal choice and don't let anyone persuade you.  It is what you are comfortable with.  I only wear a prostetic when I am going to a fancy event, otherwise nothing.  My breasts have never defined who I was so I chose NOT to have reconstruction.  Your choice is just that your choice, do what YOU want.

 

Terry

survivorbc09

McMarty said:

Hey girl!  You quiet the

Hey girl!  You quiet the whole world and see what's in YOUR heart!  I did have reconstruction (DIEP Flap) at the same time as my mastectomy and I have kind of a love/hate relationship with that thing.  Imagine having a prosthesis you can't take off!  I made MANY wrong decisions based on what was best for my family, what my husband wanted.  I also made A LOT OF GREAT decisions when I shut the world out, did my research and figured out what was right for me.  NO ONE knows what you are going through but you! 

The Dr's are under some pressure to make sure you are aware that reconstruction is available.  Just because the majority of women may be frantic to get their 'form' back doesn't mean YOU have to rush!  You may have 'bigger fish to fry' right now.  I bet you are well aware of the options available to you.  If I were you, even if I were me ~ I would tell my people (especially my Dr) NOT to speak of reconstruction anymore.  Tell them they are making you feel ugly and unaccepted and if/when the time is right you will know it and bring it up. 

Relax, you don't have to make that decision right now.  Right decisions take TIME!  You are beautiful and unique and important - if you are happy and making decisions at your own pace you will have more to give.

PEACE to you!

There is nothing wrong with

There is nothing wrong with not having any reconstruction.  And if you change your mind in years to come, you can have it then.  I don't think there is any rush, and, that is just if you decide you might in later years.

You are not defined by your body parts and I think it is very shallow if someone thinks you are.  It is very understandable that after all the surgeries that you've been thru that you don't want anymore, at least right now.

You do what is right for YOU!  It is your body, your decision. 

Good luck and sending a hug,

Jan

Rague

No "One Size Fits All"

Being IBC - recon at time of surgery was not an option for me.

You mention numbers of surgeries - in my 66 yrs I've had a total of 5 - tonsils at 1 1/2yrs, 2 C-sections at 31 and 32, port impant at 63 and rad. mod. mast. at 63.

At this point in time I doubt I will ever think about/do recon.  I did but I don't want to loose any time from living my very active 'outdoor'  life 'recovering' from surgery that is not necessary.  I do anything and everything I want to do.  Would I be as 'good' after more surgery? Don't know but I'm not ready to give up my horses, biking, lawn mowing (love to it and I have several yards I take care of for people who need a little help) or my newest 'passion' - flyfishing or doing any of the multitude of other tihings I like to do!

My Hubby (of 37 yrs) does not want me to have recon.  I am me and that is what he wants - ME.  Neither of us look like we did when we got married all theose 'eons' ago but we are who we are today and that is what matters.  IF I were to choose to do recon, he will be with md every step of the way for ME - not for him.

We are a very small family so no family dynamics going on.  Hubby and I are both only children (well I do have a brother but haven't heard from him for MANY years), all parents have been gone for 30 yrs and only have 2 sons - so just  us.

Remember that any surgery anywhere can result in lymphedema.  

Winyan - The Power Within

Susan

Lynn Smith

It should be up to you

It should be up to you. I was 62 when I was dx 3 years ago.I thought if I need a masectomy I will have reconstruction. Not needed. I had a  lumpectomy.I always wondered about how complicated the masectomies would be?? In the begninning I looked at it as being much simpler than what it is.Not sure now.In July my sister was dx with bc.She was the same age as me when mine was found.She had a double mascetomy.Cancer in both breasts.2 different kinds.Complicated.She had her mascetomy and reconstruction if I remember the same time.She has always been braver than me.Super women and never worries  Although after her surgery she said she wasn't sure about going any farther and will  be satisfied on what is already done. She said the reconstrution was alot of work and the drainage tubes. Her granddaugther helped her get through that. Really don't think she could've done that by herself.

Not sure if doctors usually push  reconstruction.At least not most of them. Years ago I had bowel surgery and had a majpr surgery that changed my life.I was just told I had to have it to save my life.Same as this is for you.That is what matter saving your life and not what others think. I can imagine how you feel with your husband pushing it.

What a decision you have to make??I wish you the best.Sounds like you've been through enough already.

Lynn Smith

New Flower

Lynn Smith said:

It should be up to you

It should be up to you. I was 62 when I was dx 3 years ago.I thought if I need a masectomy I will have reconstruction. Not needed. I had a  lumpectomy.I always wondered about how complicated the masectomies would be?? In the begninning I looked at it as being much simpler than what it is.Not sure now.In July my sister was dx with bc.She was the same age as me when mine was found.She had a double mascetomy.Cancer in both breasts.2 different kinds.Complicated.She had her mascetomy and reconstruction if I remember the same time.She has always been braver than me.Super women and never worries  Although after her surgery she said she wasn't sure about going any farther and will  be satisfied on what is already done. She said the reconstrution was alot of work and the drainage tubes. Her granddaugther helped her get through that. Really don't think she could've done that by herself.

Not sure if doctors usually push  reconstruction.At least not most of them. Years ago I had bowel surgery and had a majpr surgery that changed my life.I was just told I had to have it to save my life.Same as this is for you.That is what matter saving your life and not what others think. I can imagine how you feel with your husband pushing it.

What a decision you have to make??I wish you the best.Sounds like you've been through enough already.

Lynn Smith

Nothing wrong tell them back off

I am a very sweet and gentle person  my first reaction - f**ck them all, everybody who makes you feel ugly and uncomfortable 

They have not undergone surgeries & chemo what do they know about cancer 

hugs

Alexis F

New Flower said:

Nothing wrong tell them back off

I am a very sweet and gentle person  my first reaction - f**ck them all, everybody who makes you feel ugly and uncomfortable 

They have not undergone surgeries & chemo what do they know about cancer 

hugs

I am sure your doctors mean

I am sure your doctors mean well, but, I can't speak for your husband.  I guess I give everyone the benefit of the doubt and I bet they're truly just trying to help you, not make you do something that you don't want to do. 

You are the only one that knows exactly what you want to do and that is all that is important.  If needed, explain to them your reasoning for not having reconstruction and I bet, and I hope, you will see a change in all of their attitudes.

Best of luck to you,

Lex

Sdawells

thank you all for your replys.

Thank you all for your kind words and replys.  It is a choice I can wait on but feeling the pressure doesn"t make it any easier. Yes, I have told myself, NO SURGERY UNLESS IT IS NEEDED TO SAVE MY LIFE.  I guess that at this point I'm feeling so miserable with the side effects of chemo that all I can think of is this just being over.  It is so helpful to have someplace that I can say these things and know that others understand.  I really appreciate all of your advise. Thanks again

Sdawells

New Flower said:

Nothing wrong tell them back off

I am a very sweet and gentle person  my first reaction - f**ck them all, everybody who makes you feel ugly and uncomfortable 

They have not undergone surgeries & chemo what do they know about cancer 

hugs

in all honesty that is

New Flower, in all honesty that is exactly what I'd like to say!

cinnamonsmile

I had a double mastectomy on

I had a double mastectomy on 1/11/11. I didn't have reconstruction. I had such darn large breasts before this.In the summer, I would get yeast infections underneathe them. I hated wearing bras, but if I moved fast when out in the yard, they would be flapping.

I had so much pain from the nerve damage, scar tissue adhesions and now LE, that I am so glad I didn't get it. I have not been able to wear the bra with the prosthetic breasts because it was so painful. I have finally gotten to the point, within the last three weeks, that  I can nice zip up sports bra kind of thing that I wear to hellp with the truncal LE. I started wearing the soft, light prosthetics a less than a week ago. It was so strange to have breasts, but was nice to have something on top to balance out the big belly I now have.

My breast surgeon never pressured me to get reconstruction. My partner, Brian, was so supportive of what ever choice I decided to make.He was actually more on the side of NOT getting reconstruction one because of all the complications I had just from the BMX, but also because it seemed like a lot of surgeries, appts, etc to get reconstruction.

Brian's sister was the only one back in 2011 that I remember trying to nudge me to get it done. I don't remember what I told her but she stopped after the second time.

At first it was weird not to have them. Brian took care of my drains, etc, and he saw me after the surgery before I did. He said it didn't look that bad. If he wasn't so supportive, I don't think I would have handled it so well. He just wanted the best for me, not for him or anyone else.

There are many differnt types of prosthetic breasts. Did you go to a mastectomy boutique and have a feel at a bunch of different kinds? I know some, like mine, are very light weight since I can't have the extra weight pulling down on the sports bra thing I wear. 

I guess you have to stick up for yourself. Remember, the doctors, surgeons, work for you!! This is YOUR body YOUR life YOUR decisions.

If you need extra help with prosthetics, breastcancer.rog is a great site because it has a discussion board specifically for Mastectomy Without Reconstruction. I am sure the ladies there could help you find some more light weight prosthetics.

carkris

cinnamonsmile said:

I had a double mastectomy on

I had a double mastectomy on 1/11/11. I didn't have reconstruction. I had such darn large breasts before this.In the summer, I would get yeast infections underneathe them. I hated wearing bras, but if I moved fast when out in the yard, they would be flapping.

I had so much pain from the nerve damage, scar tissue adhesions and now LE, that I am so glad I didn't get it. I have not been able to wear the bra with the prosthetic breasts because it was so painful. I have finally gotten to the point, within the last three weeks, that  I can nice zip up sports bra kind of thing that I wear to hellp with the truncal LE. I started wearing the soft, light prosthetics a less than a week ago. It was so strange to have breasts, but was nice to have something on top to balance out the big belly I now have.

My breast surgeon never pressured me to get reconstruction. My partner, Brian, was so supportive of what ever choice I decided to make.He was actually more on the side of NOT getting reconstruction one because of all the complications I had just from the BMX, but also because it seemed like a lot of surgeries, appts, etc to get reconstruction.

Brian's sister was the only one back in 2011 that I remember trying to nudge me to get it done. I don't remember what I told her but she stopped after the second time.

At first it was weird not to have them. Brian took care of my drains, etc, and he saw me after the surgery before I did. He said it didn't look that bad. If he wasn't so supportive, I don't think I would have handled it so well. He just wanted the best for me, not for him or anyone else.

There are many differnt types of prosthetic breasts. Did you go to a mastectomy boutique and have a feel at a bunch of different kinds? I know some, like mine, are very light weight since I can't have the extra weight pulling down on the sports bra thing I wear. 

I guess you have to stick up for yourself. Remember, the doctors, surgeons, work for you!! This is YOUR body YOUR life YOUR decisions.

If you need extra help with prosthetics, breastcancer.rog is a great site because it has a discussion board specifically for Mastectomy Without Reconstruction. I am sure the ladies there could help you find some more light weight prosthetics.

i did not have

i did not have reconstruction, I  started the process but both times I eneded up needing rads and it would have been a long prolonged surgery. not something i was interested in. My H does not want to wait for me to have one more surgery if I can help it. I have been in the OR well over 15 times. anyway, my docs doent care. I somentimes think it would be nice, but have accepted it. If I could feel them it would be nice when I was with my husband. otherwise WHATEVER. you do what speaks to you that is the only opinion that really matters.

linpsu

no recon 2nd time

I had an implant put in after my first mastectomy and was generally satisfied with it; however my cancer reoccured under my mastectomy scar so I had to have the implant removed and I decided I didn't want to go through the reconstruction again after going through a 2nd surgery, chemo, radiation, etc.  I had had enough!  So I have a prosthesis and I'm fine with it.

Unhappy

It your body not there .

They are not the one going through the surgeries and recovey it you and you know wnat is best for you body .Don't let someone pressure you into anything you don't want.I am sure you are very pretty just the way you are.I have thought about reconstrution but somehow just can consider it yet I have had to much to worry about without that too.I have a aunt who had both breast removed 50year ago and she is cancer free and a very happy person just the way she is .She say she can be any size breast she want to be and when you look at her you would never guest she don't have breast.She called me when she heard I had breast cancer and talked it help a lot.

ladyg

I did not have

to make that decision since I only had a lumpectomy. But one thing I did learn through all of this is that I am important and what I want does matter. If you do not want to have recon done then don't do it! Anyone who cares about you will understand that it is your decision and not theirs. Do what is best for you.

Hugs,

Georgia

DianeBC

Sdawells said:

in all honesty that is

New Flower, in all honesty that is exactly what I'd like to say!

I'm so sorry for how everyone

I'm so sorry for how everyone is making you feel.  It isn't right, not at all.  If you don't want any more surgeries, than don't have any and I do understand.

Good luck and I am glad you could talk about it here.  That's why we're here.

 

Hugs, Diane

jnl

linpsu said:

no recon 2nd time

I had an implant put in after my first mastectomy and was generally satisfied with it; however my cancer reoccured under my mastectomy scar so I had to have the implant removed and I decided I didn't want to go through the reconstruction again after going through a 2nd surgery, chemo, radiation, etc.  I had had enough!  So I have a prosthesis and I'm fine with it.

You should only do what you

You should only do what you want and what you feel comfortable with and that's it!  I'm sorry that anyone made you feel other than that you are beautiful, because you are! 

I hope that by all of these posts you realize that and know that we all support you!

 

Hugs, Leeza

CypressCynthia

Nothing!

Reconstruction is a strictly individual choice.  When I was first diagnosed, I was just 33 and reconstruction was the right move for me.  However, I will be 60 this year and I am not sure if I would have done it at this age.  Don't let anyone influence you!  Do what is right for YOU.

desertgirl947

I opted not to go with

I opted not to go with reconstruction, and my husband did not care what I decided.  My reasons included these:

1. I did not want any more major surgery, especially what I viewed as unnecessary.
2. If I had piggy-backed that surgery with what I had, time would be doubled.
3. Recovery time was another issue.
4. Was it worth taking a chance on something going wrong or some health issue causing all of that to be an inconvenience.

Yes, I have prosthetics; but I do not wear them all of the time.  It depends on how fitted my outfit is for work, church, or wherever else I am going. 

My fitter told me that because I am "balanced" on both sides, I can get away without needing to constantly deal with a prosthetic -- not that mine are uncomfy.  I like having that freedom and knowing it is not going to throw my back out of line if I go "prostheticless."

I realize that in most instances, women do recosntruction because it makes them feel better OR they feel they have no choice because of their spouse.  I didn't think I needed that to feel better about myself.  My husband and I love each other for who we are, regardless.  Maybe if I were a really young woman I would think differently; but I am in my late 50s and just don't think the bother is worth it to me as far as the down time that would be involved.

 

Gabe N Abby Mom

Nothing!

I did chemo first, then bilateral. no reconstruction, then rads.   I'm triple neg inflammatory BC, in my case I was told no reconstruction for a year.  In that year I had a local recurrence and was found to be stage IV with mets to lymph nodes between my lungs.  With all of that, I decided I don;t need or want any more surgery.  So I won't get it done.  I am content with my prosthesis.  Some days I don't wear them, usually if I'm not going anywhere.

I wonder if your husband and docs are assuming you want reconstruction because of your previous attempt.  They may be doing what they think you want.   Perhaps their real feelings are different, and they aren't saying anything to 'protect' you.

 

Stick to your guns, take a deep breath, and talk with your husband first.  Then next time a doc brings it up just say you've changed your mind and you no longer want reconstruction.  I'm betting they will all be more supportive than you expect.

 

Hugs,

Linda