Mastectomy without reconstruction?

Undercat

Hello, pleased to find this forum, even if I'm not pleased at the reason for its existance.

I'm a 26 year old recently diagnosed with DCIS-mi, purely by happenstance. I presented with a painful, mobile lump and bloody nipple discharge in my left breast. Imaging found nothing, but since it hurt and alarmed me, I had a lumpectomy performed. Well, the lump was a fibroid growth and the discharge was likely caused by ductal ectasia, but the surgeon took out a small area of tissue right next to the lump, seemingly for cosmetic reasons (he said it looked "fuller" and wanted to avoid a dimpled indentation in the skin), and when they tested *that*, pathology found DCIS. The area was small, only 9 mm, and grade 2, but there also were three very small areas of microinvasion, so this was found right on the cusp - I'm pretty lucky!

Anywho, I've decided on a mastectomy, as I am firmly set against radiation (granted, I could end up having to have it even with a mastectomy, but the odds of that are very low). I'm still awaiting genetic testing results (no family history, but things like Cowden's and Li Fraumeni are known to arise de novo. The genetic counselor and every doctor I saw strongly recommended testing given my age) and will have a double if that turns up positive for anything, but in the absence of any known genetic predisposition, I want to keep the good breast: breastfeeding! sexual pleasure!

At this point, I'm strongly leaning towards no reconstruction. I've seen a couple plastic surgeons (at Mayo in Rochester; I live in southern Minnesota. I figure they're probably pretty decent), and both of them said I'm far too thin to do a muscle-sparing autologous tissue reconstruction and that implants would be my best option. And I don't want to deal with the hassle. Tissue expanders sound like a complete pain, and I don't want to be tied down to the area for six months when I was informally going to be promoted shortly (and move away) when this occured. The DCIS is close enough to the skin that the surgeon thinks there's a fairly strong possibility she wouldn't get margins I'd feel comfortable with if she does a skin-sparing mastectomy, so that's out. I don't want to have to deal with watching for leaks and swapping out implants for the rest of my life. And most importantly, I don't feel I'd be satisfied with less than complete symmetry. I'd rather have one breast and wear a prosthesis than have "sisters, not cousins". I'm 90% certain, but I'd have to tell the surgeon to take as much skin as possible, so it lies flat, which seemingly would be leave me with less than a perfect platform for reconstruction if I change my mind down the road.

Have any of you ladies made the same decision, not to do reconstruction? Any regrets? Has it impacted dating, self-image, sexuality, sex in ways that surprised you? Anything you want to share?

Ariom

Firstly Undercat, I have to say how sorry I am that you're going through this at such a young age.

I am way, way older than you, at 60, but I too decided to have a Umx, for a number of reasons, mainly because I wanted to avoid Radiotherapy if possible, and I couldn't in all good conscience remove a healthy breast.

Reconstruction was never a consideration either, for some of the same reasons that you have mentioned, and also because my Mother had a Umx in '94, so I was very used to how it looked and her amazing attitude to it.

I can only speak for myself, but I haven't had a moments regret with any of my decisions, and almost 11 months out from surgery, I am totally comfortable with wearing foobs, boobs and prosthesis. I put one on in the morning, and I really don't think about it till I take it off at night.

My surgeon was very supportive of my decision not to reconstruct, but told me that the door was not closed if I ever changed my mind.

At your young age, you have more considerations than I had, but I totally understand your wanting to keep your good breast for those obvious reasons.

I wish you all the best and if there is anything you want to ask, please feel free to ask or PM me.

((((((Hugs)))))))

nostrilb

I was where you are, and I decided to keep going and start the implant process. For me, my breasts are too much a part of my self-esteem to live without, regardless the hassle. The nice part for you is that you can change your mind anytime. Most insurances will cover either the prosthetic or the reconstruction, even years after the mastectomy. So you can decide to do nothing now, and then do something later. Good luck.

Moderators

Undercat, the forum Living Without Reconstruction After a Mastectomy is a great place to connect with other women who have made this decision.

Best wishes, whatever you choose,

• The Mods

bc101

Does anyone know if insurance will cover reconstruction if you decide much later -- and cover all costs at 100%? Or does it depend on what kind of coverage you have (80/20 like most people have nowadays)? I have 100% coverage right now, but may not be a candidate for immediate / delayed reconstruction due to possible radiation treatment and depending on what my new Dr. says about that. I switch plans January 2015 to my husband's insurance, so worry that we'll have to pay 20%. That could really add up.

jenjenl

Here is what I went through and what my thoughts were. 

33 dx with IDC triple negative.  Had a unilateral mx.  Found out 3 days after surgery i was BRCA1+.  Did chemo, radition, hysterectomy.  I really struggled with being uniboob so in July I had the other breast removed.  It was challenging with the young kids with the pools and beach and the prosetics made me very hot in the summer and uncomfortable.  From that experience I decided that I wanted to do recon but due to radiation wasn't a good candidate for impants.  In Janurary I am having the DIEP procedure done but i don't have a lot of skin/fat so I will be a mid size A cup.  Whatever I am cool with it. 

I was however a candadite for the GAP - using my big old butt.  I decided to not pursue that since I would have to travel 5 hours for three to four diffrerent surgeries.  I had a good friend that just finished this procedure and she looks amazing!  I wish I would have consulted the doctor i have now prior to having my other mastectomy but I was so scared since I was BRCA1+ and triple negative that it was too risky.

I sleep well at night knowing I did everything medically I could (i still struggle with exercise and eating well...sigh). My point is can you see if you can use your butt for recon?  Not a lot of doctors do it so you may have to travel. I thought I would be ok being flat but i am not - i have short hair right now and I look like a 12 year old boy in puberty.  I don't think i look ugly or hate my body but I did not like all the prep work and worry while swimming and playing with my kids. My 6 year old daugher is so excited from me to have boobs again...so silly!

Insurance will approve the request but you have to pay your OOP for the year.  For instance, I met my OOP this year but since I don't want to ruin another xmas i am doing it in Jan and will have to pay 10k for this procedure. 

Good luck.  You've already made some great decisions so trust yourself.  Take care

indenial

Just wanted to say that we have a group on Facebook, "Flat & Fabulous" -- join us!!

I am 30 and opted for bilateral mastectomy without reconstruction. I have been living flat (I don't use prosthetics) for nearly a year and I am quite content with my appearance. I mean, obviously I would've preferred to keep my breasts!! But I am happy with the decisions I made & no one even notices I am flat. People ask me, "What kind of cancer did you have?" or "Did you have reconstruction?" even though I am standing in front of them FLAT AS A PANCAKE. 

Oh, and yes, insurance would have to cover reconstruction down the line, so it is always an option. The amount it's covered would depend on your insurance at the time. If you switch to insurance that has copays/deductibles then you would have to pay those copays & deductibles for reconstruction.