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I had the latissimus flap reconstruction--they take a muscle from your back and literally swing it around to the front under your skin, still attached to your body under your arm. It was way too small to match my reconstructed breast so I had an implant added later (in my 4th surgery.)
I didn't do the implant procedure in the beginning because I felt so sure that implants were bad, dangerous, leaky, etc. I had not done any research, I'm sorry to say. I was just going on my memories of women's breast augmentation surgeries and implant leaks, which was quite a while ago.
Healing from the lat flap was very painful for me, and I didn't feel a lot of pain with my other two surgeries. I wish I had considered implants in the beginning. I have a wonderful surgeon but when I said, nope, no implants for me, she didn't ask why--not her job but I wish someone had.
One reason I feel this regret is from watching my little sister's experience with an implant.
She had a mastectomy in a Naval Hospital 16 years ago, with no prep for how it would look afterwards---she was appalled--She has worn a large prosthesis for all these years.
But when I started reconstruction, she decided to do it too!!!
I was so happy for her--our male significant others could not understand our willingness to risk pain and surgery "It's not necessary" they said. We just looked at each other and knew it was right for us.
She had a pretty easy time--breast skin stretcher for a few months, then her large breast was reduced to a size that would match the implant and look natural without being, excuse me, big and floppy, which is where we both were at.
I still haven't studied implants--haha--too late for me
My very large breast--well, I wanted a very small one, so I didn't have to wear a bra at all. My doctor made it as small as she could, but it would have been better if she could have left it a bit larger, I think. We have had a lot of trouble with necrotic fat tissue that keeps draining from the nipple area and my nipple lost sensitivity.
I like the way it looks now, the darn thing will heal soon enough, and I am glad I was able to have the surgery--taking the time for more procedures and recovery is a real problem for a lot of women. Their insurance companies are required to pay for it, but no one says how they will live during that time. Maybe someday women like me who have finished and recovered will find a way to pair up with a woman who needs childcare or a little financial support or whatever, in order to be able to do reconstruction.
God bless the women who get tatoos and beautify and enjoy their non-matching look. I love them, but when one breast is really large, and the other one is totally gone--it's a difficult prospect.
In fact, I thought reconstruction meant they would make a new breast to match the one that was left. I said, why would I want them to make another big floppy breast?
When my surgeon replied that they could make the new breasts smaller and matching (more or less) , well, I didn't stop smiling for days. I could never have afforded breast reconstruction otherwise--I called it my remodeling project.
Thanks for sharing your story here, Catharine. I think it's so cool you and your sister had reconstruction done together! It can be a challenge to get it right - implants, or body tissue - but when it's done to your satisfaction, it is indeed VERY satisfying. Hope things continue to go well for you, and thanks again for your long and interesting comment. PJH
I have been very interested to read the last two comments on reconstruction. My surgeon talked about reconstruction at the time of diagnosis, in a very positive way, and I think this actually helped me cope with the diagnosis and his description of the "aggressive" treatment that my IBC would require. I was very bothered by the thought of mastectomy, but knowing that I'd be able to have a reconstruction has helped me accept that it needs to be done. I had my mastectomy just under a week ago (I'm sitting typing this in hospital) and I've not felt the need to shed a single tear over it. I know that my very lopsided chest - I too have biggish breasts - is only temporary. That I means I can make jokes about it and ask my family to call me Loppy. I have bought a small rubber ball at the supermarket that I'm going to wrap in old socks and put in my empty bra cup. And I have ordered a commemorative silver breast at the jeweller's to hang from the beautiful antique French bracelet my husband gave me for Christmas.
I agree totally with PJ's original comments about information and think women deserve to be given complete info at all stages of their treatment. It is patronising for doctors to decide that their patients won't be able to handle a lot of info at stressful times. What we are not ready to hear we can block out for ourselves. We do not need a medical censor to damage our self-esteem by deciding for us what we are ready too hear. And we have to be assertive in letting doctors know this.
Phew!! What a rave!!
And a great rave indeed, Sue. I hope you're feeling OK; how well do I remember those days aftermastectomy, the drains, the bandages, etc. This too shall pass. I have every confidence you'll end up with a great "replacement" breast. Thanks so much for chiming in here - it's wonderful sharing what you think with so many other women who need to hear it. Good luck - PJH
My breast surgeon brought up reconstruction but because I have IBC she recommended that I do not have reconstruction for at least 3 years. She basically said that they want to be sure I'm free of cancer before reconstruction. My Oncologist agreed with her. Sue, I read your post also and you said you will have reconstruction in September and you too have IBC. Does anyone else wonder why my doctor says 3 years? I am having double mastectomy on Jan 28th and never talked to a doctor about reconstruction because of what the breast surgeon said. I'm not sure if I'll get reconstruction when the time comes though. I am only 48 and may think about it later but all I can think about right now is to get the cancer out and be cancer free. I've had dose dense chemo starting Oct 1st every 2 weeks. 4 treatments of AC and only 3 of Taxol because of Neuropathy.
Thanks for your great post though.
Johanna
I'm surprised, Johanna. I have a friend with IBC, and she did chemo first, followed by surgery, followed by reconstruction - all within about 18 months. I don't understand the need to wait and see if you're cancer-free; what does that have to do with reconstruction? None of us can be sure we're cancer-free. If I were you, I'd get a second opinion. Best of luck to you - I was 47 when I was diagnosed, and here I am, 7 years later... You can do this. You're stronger than you know. And we're here for you. PJH
Thanks PJ. I'll ask for more information after surgery. I do know that I may have more chemo and that I will be having radiation also. But you bring up a good point though. The Oncologist said she was in agreement due to the radiation so I do understand the waiting for treatment to be finished, but not the 3 years.
BTW, I've just discovered this site this month so I am getting alot more information than other sites I've been on. I'm so glad I found this site.
Johanna
Ah yes, the radiation definitely throws a monkey wrench in there. You do need to wait a bit for your skin to recover from that. Well, check it out thoroughly - I've found that you need to be a self-advocate through this whole process. The caregivers know they're job and they're good, but they have a lot of patients. Sometimes you have to keep after them to answer questions so that you understand your situation fully. Good luck through all of this, Johanna, and i'm glad you found this site, too. As I said - we're here for you . PJH
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For some--the idea of dealing with just the question of reconstruction when faced with so many other life-altering decisions is just too much all at once. A person doesn't know how they will deal with the loss--sometimes people need to sit with the loss a bit. Sometimes people need to see if they do fine with a prosthesis. Sometimes horror stories about reconstructions going bad are too scarey to add to the already often scarey pile of alternatives. Your piece is terrific--and excellent for folks who wonder about it and are ready to face the decision. But for some--it's just too much all at once.
Agreed, Barbara - reconstruction is a tremendously personal choice, and women decide to have it - or not - for as many different reasons as there are women. Choosing not to do reconstruction (or to put the possibiity off) because you're overwhelmed is a very valid reason to move on without it. But at least you should have the choice: to say no, or to go for it. Not even being allowed to consider it, by way of a lack of information, isn't fair or responsible, in my opinion. Thanks for your input - PJH
I agree totally--I think some physicians are caught in the catch 22....not wanting to overwhelm, yet wanting to provide good information to make choices.