Seeking support for mastectomy without reconstruction

I just bumped up a post titled "What's wrong with NOT having reconstruction" for you.  It had a lot of comments and I hope some of them will help you.

I can't speak to this as I had a lumpectomy.  What I can say is the choice is yours, and, yours alone.  You do what is best for you and what you want to do.

Good luck,

Lex

I actually couldn't get reconstruction due to the fact that my breast cancer spread into my lymph nodes. So after my bilateral mastectomy, I required emergency radiation asap. While I was only 40 years old & single, I did want reconstruction. However, now I am okay with not having had reconstruction. I don't even wear my prosthesis (well maybe on real fancy occasions-I was never a bra fan). You may not believe this (because I would think people would notice), but I have been told on more than 1 occasion that they "DIDN'T KNOW". So whatever you are okay with...it's your choice!! Personally, if I had to do it all over again...I wouldn't reconstruct. I do have to look for NO cleavage tops while shopping now, but look how much I save on not having to buy bras! It's up to you - best wishes!! 

Hi Jesse,

I had a bilateral mastectomy without reconstruction 2 years ago in June. I have been happy with the results but I am in my 60s. I only wear light weight prothesises for formal events or to things I think some (not my immediate family) may feel uncomfortable if I don't just look normal. I have a friend that did reconstruct and had multiple problems and ended up waiting for 18 months to try again. The surgery and stretching were brutal, but were successful. Her looks are very important to her.  Many people can't imagine not looking like you should but I never did get into everything is about my looks. I was large breasted and had a love-hate relationship with my breasts. My back and shoulders are much less sore now. The only thing I continue to morn is the intimacy aspect. There is a big hole there for me, but reconstruction wouldn't have brought that back anyway . You sound like a strong woman, who knows herself and I do believe in following my gut. You do need to be strong to not doubt yourself. My husband has been completely supportive and wants what I want and has adjusted well to seeing me, even though he used to be sqeamish. As he says I'll take you anyway I can get you, just survive. I'm sure going through chemo and facing a life threatening illness has already made your priorities change. Even though I elected a bilat mast my surgeon left extra tissue under my arms.They were like size A breast shaped mounds of tissue that annoyed me, as you felt them when you put your arms down. When I called him on it he said that he had to leave enough tissue in case I changed my mind as others had done so. I did end up having them removed by a plastic surgeon about 11 months later, when I had my port removed.. Also I was concerned about a recurrence being hidden by a reconstruction. I really haven't doubted myself and have no regrets. Feel free to ask any questions, etc. Prayer for you. JoJo2

I had a bilateral mastectomy a little over a year ago when I was 32. My surgeon did not support reconstruction. I have found that I have not felt bad about the decision at all. I feel better because I can feel everything right away if there is ever a concern. I find that I am having more times when I do not want to wear my prosthesis. I really enjoy being able to choose when I wear them and when I don't. More times then not, when I go to work I wear them, and when I get home I do not. You get to have fun and choose when you have a chest!

My biggest advice is go with your gut and then have fun. I have two sets of prosthesis. I call them my party chest and my formal chest.

Last year at this point, I was healing from bi-lateral surgery and having a port implanted so that I would be ready to start chemo in April.  So, I was making decisions about reconstruction a year ago January/February.

Yes, I am in my late 50s, but I chose not to have reconstruction for a number of reasons:

• extra surgery -- to me, the bilateral was more than enough of that
• extra recovery -- too active to want to be laid up longer than necessary
• thoughts of any recurrence of cancer in the chest region and not wanting there to be unnecessary impediments
• my husband did not, and does not, care what I decided

There are other reasons, but this gives you some idea of what went through my mind.  It really did not take me long to decide.  I think that once I heard how long the process was (start to finish, including recovery time), I knew that I did not want to bother.  I was fine with it then; I am still fine with it now.

blackbutterfly said:

Hi Jessie:
I was diagnosed

Hi Jessie:

I was diagnosed with invasive breast cancer in October 2010.  I had a left breast mastectomy and I finished my chemo February 2011.  I have not had reconstruction yet.

I am still deciding.  I have ( or should I say had) big breasts.  Now I only have 1.  No one knows unless I tell them.  I saw a plastic surgeon last April.  She did not seem tp understand that I do not want an implant.  Sometimes I wonder if I should have had a double mastectomy, but my surgeon said there was no reason to remove the right breast.

I say that you pray about it.  God will give you a sign.  I am exercising eating healthy and learning to enjoy my body!  I set a time limit for myself.  If I am still blessed to be here in the year 2015, I will definitely decide on any reconstruction.  It will be 5 years since my diagnosis and I will be celebrating 30 years of marriage and my husband and I will deicde together.  If I do decide on reconstruction it will not be an implant.  I want a reduction on my right breast, and to use my own fat to make a new left breast.  I know that I am not ready now.  God brought me thru my cancer journey and He will let me know when and if I am ready for reconstruction.

Trust yourself.  Don't let anyone tell you what you should do.  It is your body and your decision.  Find a local support breast cancer support group.  There will be women there that can give you valuable insight thru their experiences.  This is an important decision that should not be made in haste.  God Bless you and good luck.

I have bilateral mastectomies and no reconstruction. My rads onc dd not like radiating reconstructed breasts. I knew the surgery would be more complicated after and i tend to always get the weird complications. so said no. do i envy people that have had it done yes in some ways. i wonder if i would be more at peace. However my attitude is" it is what it is. " and if i wanted to , i could go and get it now. but I dont want to. I just dont want anything to have to recover from. I am with JoJo what I miss is the intimacy and that would not be fixed. Just remember if you decide not to now doesnt mean you cant do it later.

My dearest Jessie,

Your decision is one of the heart, yet; the mind tends to sneak in their at times.  I had a modified radical mastectomy on Feb 26th. SO many people asked me if I was having reconstruction at the same time.  Granted, it was within a month that I went from the mammo, to the ultra sound, to the biopsies (4 tumors) to the surgery...no time to even think of that!!!  I knew in my heart I didn't want reconstruction.  For me it was simple...I needed to impress no one.  Love me for who and what I am, or don't.  I'm happy with my body....but, my friend this journey is different for each of us.

You are brave and courageous to open your hearts to those of us here...it's very safe here.  You will find only open arms to support you no matter what!  The GREAT thing, is you have time to consider your options...at least, at little more time since surgery is a few weeks away.  What is your body telling you?  

Breathe in deeply, exhale more deeply and feel your heart Jessie.  Base your decision not on what you think should be "expected" but on what you believe is right for you.  This is about YOU and nobody else.  But whatever you decide will absolutely be perfect and you will be loved more than you thought you ever could be!!!!  You are a warrior!  

Everything is going to be okay.  I promise.  

Susan

Sun Whitey said:

My dearest Jessie,
Your

My dearest Jessie,

Your decision is one of the heart, yet; the mind tends to sneak in their at times.  I had a modified radical mastectomy on Feb 26th. SO many people asked me if I was having reconstruction at the same time.  Granted, it was within a month that I went from the mammo, to the ultra sound, to the biopsies (4 tumors) to the surgery...no time to even think of that!!!  I knew in my heart I didn't want reconstruction.  For me it was simple...I needed to impress no one.  Love me for who and what I am, or don't.  I'm happy with my body....but, my friend this journey is different for each of us.

You are brave and courageous to open your hearts to those of us here...it's very safe here.  You will find only open arms to support you no matter what!  The GREAT thing, is you have time to consider your options...at least, at little more time since surgery is a few weeks away.  What is your body telling you?  

Breathe in deeply, exhale more deeply and feel your heart Jessie.  Base your decision not on what you think should be "expected" but on what you believe is right for you.  This is about YOU and nobody else.  But whatever you decide will absolutely be perfect and you will be loved more than you thought you ever could be!!!!  You are a warrior!  

Everything is going to be okay.  I promise.  

Susan

What Susan wrote was perfect and I couldn't say it any better.  You are the one making this decision..You!

Update us as to what you decide and keep us informed.

Hugs, Sue

When I had my first mastectomy (just one side), I had an expander put in and a few months later had exchange surgery for an implant.  Unfortunately, 2 years later, the cancer returned under my mastectomy scar and so I had to have a more invasive mastectomy that also removed the implant (along with chemo and radiation).  I decided that I had enough surgeries and didn't want to go through the reconstruction again, so I just have a prosthesis.  It is comfortable and I don't have any problems with it.  I am happy with my decision. (I am also triple negative.)

Linda

Jessies miracle said:

My decision

After thinking about all the factors, I have decided to not have reconstruction.  Once I made the phone call to cancel the recon I felt relieved.  I really do feel it's the "best" choice for me at this point.  I have a 5 year old little girl and a husband, and I don't want any more pain, recovery, risks.  I am praying that I will be done with cancer after my double mastectomy surgery on April 17th (it was moved up a day).  I feel God told me in the beginning of this journey, before I had my PET sca & brain MRI, that the cancer was gone.  After my second AC treatment my lymph node (which when biopsied was negative for cancer) had shrun from the size of an egg down to barely detectable.  By four weeks my tumor was from 2cm to 1cm and by 8 weeks the tumor was undetectable.  I feel that God told me to not give into the "sea of temptation" which in my thoughts means it's tempting for me to want to be "normal" and "sexy" by public standards.  However in my true thoughts I don't feel I need breast to be normal or sexy and furthermore with all the girls in our family (daughter, nieces etc) I want to let them know I am ok being a little different than everyone else.  I feel God has given me that peace about it for a reason and that's my "gut" feeling, I think that's God telling me for whatever reason to make this choice.  I have a niece that has a weak muscled eye, and I think of her when I think of not having recon, in a way I also want to show her it's ok to not be "perfect" and to be HAPPY with that! Thank you all for your input, it really does mean a lot to me to know that you are ok and happy with your decisions.  I really was just felt I was the only person not going to reconstruct and I am saddened but happy to know you all are here with me and it's ok Thanks again!

It's good to read that you are secure in your decision.  That is the biggest part of it all -- having peace in decisions made.  It also is encouraging to see how you view your opportunities to minister to others, such as your niece.