getting bi-lateral mastectomy&no reconstruction ever!

I have early stage carcinoma in both breasts and am choosing to have a bi-lateral mastectomy
and no reconstruction (ever!). I feel so grateful to this forum for helping me come to this decision before I did something I would regret. It seems like everyone is having pain and terrible problems with reconstructions and implants. etc. and I would have gone down that path if it weren't for all these wonderful women sharing their experiences. I don't know node status yet of course, but am hoping & praying I will have none and can avoid
chemo, as well as radiation. I am so afraid of the side affects I read about on these sites. I'd love to hear from anyone whose had the mastectomy and feels okay with it!(?) I know I will have a hard time looking down at my flat chest, and I think I will mostly miss my nipples! I'll try all sorts of things  along the way to see what's most comfortable on my chest...just small contours are fine for me...sometimes I feel terrified...mostly late at night when I can't sleep(like now).. but I love feeling a part of this wonderful communication of women.


This discussion is related to Post breast reconstruction problems,exercise?.

[lhughes]

You go girl!!!  Had I not had a husband who was a breast man, I don't think I would have had my reconstruction.  After about the 3rd month, I rather got used to not having my breast and wished the other side as flat.

Just think, you'll never have a shirt to fit poorly because of breasts and the cut of the shirt not aligning!!!

My mom would have gone that route too, weren't for my dad.  We must love our husbands!

Don't be terrified.  You can always go back and do the reconstruction at a later time if you change your mind.  I had to wait nearly a year and a half out from my mastectomy to get my reconstruction and it looks pretty good.  

They might could put you on some nipples with an areola, that's an idea!  They just take some spare skin and make one, then tattoo the areola.

Good luck to you!

[MalindaCarolyn]

My sister had a mastx and they did make a sort of nipple for her. She had the expanders put in and filled when the time was right, but they hurt, couldn't get the fluid right and were overall uncomfortable for her. She had them  removed and you really can't tell by looking at her that she has had breast cancer. That was 10 years ago and she's very happy and cancer frree. If my tests are positive, that is exactly what I will do, xcept skip the   expander part. Go right for the "natural look."

She said your oncologist should be your best friend. She flies to see him once a year even though she's a survivor. (he moved to another state)

Ask your oncologist if he forms a "nipple" during your surgery.

Do you keep a journal in handwriting or computer to remember what questions to ask and remember what you have been told? When my husband was diagnosed with prostate cancer a couple of months ago, I started a journal. It helps. Spending a few minutes rereading it and handwriting it during appointments helps keep us focused.

[dblwhammy]

Hi Kathy, I was where you are now about 6 months ago. I had bilat. mastectomies and no reconstruction. I also don't plan any and I just got my prosthetic breasts and bras last week. They look great, I'm the same size as before surgery. It took a few days to get used to wearing them. I will never regret 'going double'. I never want to sit in the mammography office shivering with fear while the radiologist looks at my films. In fact my  last mammogram in Feb. 07 was perfectly negative for anything remotely suspicious. Over the next few months I suffered terrible stress during the illness and death of my dear father and 7 months after the mammogram I find a 12 mm lump that turns out to be invasive ductal ca. It was missed by my doctor during my annual physical. Though my lymph nodes were negative a special evaluation of the tumor, a new test called Oncotype DX, determined my chances to avoid metastasis would be improved by doing chemo. I was more upset about that than the surgery. But once the hair falls out and you get the side effects under control it's not too bad. My friends and i all celebrated when I finished my last treatment 5 weeks ago. Hair will be back but I hope not the cancer!
At first I cried every time I showered and felt my flat chest, and now add my bald head.  Keep a binder with all your pathology and medical reports, ask for copies, you're entitled to them, and write down questions ahead of appointments. Don't go to appointments alone, have someone else there to be extra ears. Stay strong and be active in decisions about your treatment. Yes, this is a traumatic mutilating surgery, a drastic change in body image and a life altering experience but you can get through it as we all are doing. Best to you!

[starr28]

I so admire your courage and decision making!
I cannot relate to your cancer since I have
never had it but I admire your decision not to
have reconstructive surgery.  20 years ago I
had saline implants and now one has ruptured.
I have decided just to have both removed and
live a happy flat-chested life!  I wish the best
for you.

starr28

[MalindaCarolyn]

I rather think that if you go into this surgery thinking of it as mutilating and traumatic surgery, then you will have a mutilating traumatic surgery.

I have not had it, so I am not saying it cannot be, but it you go into it without a panic mode maybe it might not be as traumatic.

Susan woke up just grateful they got it all. She didn't feel disfigured, if she did, she didn't  tell anyone. She played in a handbell choir soon after, and my Mother remembers wondering how she did it. Susan was determined to push on and put it behind her. The scars aren't what they seemed like in past years. Susan just looks like Susan. There is a flatness that can be seen without clothes, but it's not mutilated looking.

There were up and down times. times, A nurse gave her ashot in the wrong place and she had sciatica for a long time.  She had the implants, but they were, at the time, magnetic so that you could find the filler hole to fill them. It was painful and it just didn't work out. She lost a good friend, a neighbor who just didn't talk to her after her diagnosis. The only thing we could figure was that cancer doesn't come with a rule book. Everyone reacts their own way.

Any surgery is scary. I just had my neck stablized from the front and the back. I would guess that that too would be disfiguring. It was sure better than the pain I lived with for so many years. I had my moments after surgery,m but the loss of pain was immediate.

I think the loss of cancer would be an immediate relief too.

I have a big spirole notebook that I keep with me at all times to write down what the doctors say and when they say it. I refresh my memory daily. Some of you know my husband was diagnosed with prostate cancer about the time that I had my numerous mammos and ultrasound. I keep notes from both experiences there.

Kathy, again, keep up a good spirit and let us know how you are doing and try to go to sleep with a memory of something special on your mind. Attitude is everything.

[kathy146]

What a great letter, what a great attitude, and thank you so much. I needed to hear that kind of this today. I'm an emotional mess today. You are right, attitude IS everything. Best wishes, take care, rest up, I hope your husband is feeling better and that you both are getting rest, Kathy