Struggling with Reconstruction Decision

Hi AnnCWG, and welcome to Breastcancer.org!

We're so sorry for the reasons that bring you here, but we're really glad you've found us.

You may find it helpful to check out the main Breastcancer.org site's section on Types of Reconstruction, to get lots of good information on the various procedures to help you make a decision.

You may also be interested in checking out the Stop Smoking Support Thread -- no better time than now to quit!

We hope this helps. We look forward to hearing more from you. Please let us know if you need anything at all!

--The Mods

I am so sorry you have to go through this but I think you’ve found the right support here. I opted for double mastectomy with immediate reconstruction on both sides, in 2017, I was 53. I had the double pedicled TRAM Flap. It is an old procedure still used in some cases...in my case I live 4 hours away from the hospital that could handle the time needed under anesthesia for a double DIEP Flap or “Free Flap”. I DO NOT recommend the pedicled TRAM Flap to anyone, especially double. I wish I would have decided on a free Flap like the DIEP and a muscle sparing Flap for sure and have it done in stages, as in, one at a time.

Please take your time to decide on which reconstruction to have, I wish I would have thought it out a little better, but I didn’t have any knowledge base. It’s is now almost two years of healing, and I do love that my breast “mounds” feel completely natural and are literally my own tissue. No one outside of my husband can tell the difference. I however still have ongoing complications related to the Pedicled procedure.

I was and am over weight but athletic all my life. I quit smoking 10 years ago so that wasn’t an issue for me. It is my understanding that they don’t like to keep a smoker under anesthesia for any length of time. So maybe research postponing the reconstruction; and put in your best effort to quit.

It is a very stressful time, find all the info you can and utilize the best emotional support you have. allow yourself to make the choices that are best for you.

Ann, I'm sorry you are going through this but you will find support here.

I'm really glad almost every surgical option has been discussed so as you see there are many options.

I'm 55 and had BMX with tissue expanders followed by pre pec silicone implants. They sometimes feel cooler to the touch but dont "feel cold" They are placed in the natural position where there used to be breast tissue. Pec muscle was not cut, scares inframmamary so they are hidden. I dont think I could have gotten a better cosmetic outcome. My husband was supportive with any decision.

Kayla is right. If there is any way you can cut back smoking before your surgery that would be to your benefit. I'm not lecturing you, I promise. It's such a stressful time that quitting now probably feels impossible. There is increased risk with anesthesia and also surgical healing. Quitting or even cutting back before march 13 really will set you up for a better outcome. Please reach out to your primary care dr for smoking cessation options that may help you. Please be honest with how much you smoke when talking with PS. If you truly dont see yourself making the change for whatever reason ...your PS needs that information so that together you make the decision that is right for you. And maybe that will mean delaying. My PS reminded me reconstruction is "elective" and the priority is getting rid of the cancer.

You are a very strong woman. And you will get through this and go back to getting on with your life. Please keep us posted on your decision and how you are doing.

Ask your surgeon about your reconstruction options, and specifically, whether you might be a candidate for immediate reconstruction at the same time as the mastectomy. That's what I did. If you don't like the options your surgeon gives you, get a second opinion, because some surgeons just don't specialize in some of the options that you might be a candidate for. I decided if I was going to have reconstruction, it was going to be "one and done" or I would rather just be flat. I did not want to go through multiple procedures or tissue expanders or harvesting my own tissue from another part of my body or any of that (I know those are great options for many people but not for me). I wanted to get on with my life. I hate to say it but some surgeons encourage their patients to have multiple procedures for various reasons. I didn't need to be perfect; I just wanted to be cancer-free and minimize the risk of complications, and as a bonus ideally I wanted to be able to wear the same clothes post-surgery as pre-surgery. I had a double mastectomy with immediate, direct-to-silicone implant reconstruction, with the implants placed pre-pectorally using AlloDerm rather than underneath the pectoral muscle. I was fortunate in that I was able to lift my arms above my head immediately after waking up from the anesthesia and my recovery was smooth with no complications and I didn't even need any painkillers other than Tylenol once I was discharged from the hospital. Because they were not able to save the nipples due to the location of the DCIS just behind the nipple, I am going to get 3-D nipple tattoos later this year which will be the final step. No fat grafting, no nipple reconstruction, nothing else. Whatever you decide, I wish you the best of luck. Take your time and do your research!

Your PS appointment is fairly close to your surgery date. Don't let them push you in to anything you don't want to do. I have read about many women who seemed indecisive and so even if they said they wanted to go flat, the surgeon left them extra skin "incase."

I would advise to look at as many pictures as possible of both reconstructed chests and flat mastectomies to prepare your mind and to see which way you lean. Listen to yourself.

I am 35 and did not have recon and am very glad. My own mother got recon and I remember the first time I hugged her after her surgery and was disappointed to be met with this weird new barrier of fake breast between us. No way did I want to carry a bunch of fake stuff in my body so I can fill a shirt, and no way in hell was I going to mess up other areas of my body and get extra scars just to make some mounds. Sexual sensation is lost anyhow. My recovery was quite quick and the surgery was easier than expected. There are less complications with no recon, and it's easy to feel my chest for anything odd/bumps/monitor it.

There is a group called flat and fabulous on facebook, you can look at many pictures of flat women there and see how they live.

I only had a uni-mx (diagnosed at 42), and I too had a lot of difficulty making the recon-or-not decision. One of the things that made it so difficult is that I was expecting that if I made the "right decision," I would feel better about things. At some point, I realized I did not want to make either choice - I just wanted to be well and have a normal body again! - but I needed to make a decision and move forward, for my health. It removed the pressure to "feel good" about the decision.

I thought about what was most important to me - healing fast, getting back to my life, not having more surgeries if I could avoid them. I'd had two surgeries already and was so tired and needed to be done. I also know I get very distracted by changes in my bodily sensations and it seemed like the implant process would be distracting for me. I felt more confident about my ability to control my shape with forms/stuffing, than a more fixed implant. I'm not a good candidate for moving tissue from other parts of my body, and it's not something I'd want to do for a chest - it's just not worth that much to me. Being flat or wearing a light mastectomy camisole with some stuffing in the pockets seems fine to me. I don't swim, and my husband is fine with things (although he thought recon would be better for me, but I disagree - I'm sure I'd be distracted by it every day).

As you can see, it's a very personal decision. I know women who were willing to do whatever it took with their recon because they wanted a shape like their pre-diagnosis shape. I was not as attached. I felt like if I had any complications or needed more surgery, I would regret my decision.

We all have tough days when we think "what if I'd taken the other path" but in the end, both are acceptable options and we just have to pick the path we're most willing to take forward.

Know that you may not feel great about the options you have, but you are taking your best shot at removing the cancer and that is the most important thing. The rest you will figure out - women live good lives both ways.

So many good explanations! I hope that something will resonate with you and make the choice easier. I know it kind of sucks to have to decide at all.

I had to choose between a lumpectomy and a mastectomy and, for many reasons, ended up doing a BMX. It really never occurred to me to go flat. I think it would have been hard for me. I chose silicone implants that were placed at the same time as the mastectomy. As written above - it was a "one and done" deal. I was able to keep my nipples and the implants are in front of my chest muscles.

I always figured that this was kind of the least invasive way for me to go. If I ended up unhappy then I could have them removed. Or opt for the autologous route. Nothing is perfect and it's hard to not second guess yourself, but you know yourself the best. What makes sense to you?

I know what you mean about the decision feeling like it's coming at you. You are smart to get prepared and ask all the questions you need to before meeting with the surgeon. It's not really one decision, it's many, and once you've made one decision you're immediately confronted with even more:

1. Reconstruction or no reconstruction?

2. If reconstruction: Immediate (same day as mastectomy) or delayed?

3. If reconstruction: Autologous tissue or implants?

4. If autologous tissue, what kind?

5. If implants, direct-to-implant, or using tissue expanders?

6. If implants, silicone or saline?

7. Round or anatomical?

8. Textured or smooth? (Some, like mine, will only use smooth.)

9. What size and profile?

10. Placed pre-pectorally or sub-pectorally? (Some surgeons can do both options; others will only do it one way)

11. Which brand of implant? (Some surgeons only use certain ones.)

12. Nipple reconstruction, or 3-D tattooing, or neither?

13. Fat grafting?

And on top of all of this there are all of the other options to discuss with your surgeon(s) such as about where the incisions/scars will be (some surgeons, like mine, gave me different options and let me choose the type of incisions that I felt would give me the best cosmetic outcome), pain management, etc.

Because there's so much to think about and consider, I hope you don't feel rushed into anything and can take the time you need to make whatever decision is right for you. It took me weeks after meeting with my breast surgeon and my cosmetic surgeon (who work together) to read the information they had given me outlining my options, decide on what I wanted, and then I met again with both of them before the surgery to finalize everything. Good luck.

I think everyone has to decide that for themselves. I couldn't decide at all. I went back and forth a million times. My husband was fine either way. I've always been insecure so he worried that I would have a harder time accepting things if I didn't do reconstruction. I emphasize he was fine either way.

I did start reconstruction the day of the mastectomies. There were complications, which seem to often happen. I had a pocket of fluid that didn't heal right-which took another surgery, then one of the implants got a hole during a filling, then infection which meant iv antibiotics for 2 weeks. Just factor that in to your decision. It could be that nothing goes wrong and everything is perfect.

I have discomfort now from the implants, but no idea if that's normal. I think for me, I wish I had waited a while after the mastectomies before starting the reconstruction. It's tough to make all these decisions at once when you just want to get better. I'll pray for peace for you as you make your decisions.

Nanette, since you mentioned deciding between unilateral and bilateral mastectomy, I will weigh in with a few things for you to consider.

Will a BMX make a big difference in your recurrence risk?

If reconstruction, have you decided which kind (flap vs implant)?

How important is symmetry? Implant will never match a natural breast; flap can come pretty darn close

Removing a healthy breast does double your risk of surgical complications (vs unilateral mx)

How will you feel if the reconstruction complications are in the healthy side if you choose BMX?

It’s a personal decision. I recommend talking to your doctors, reading, talking to any friends who’ve gone through this decision, and ultimately make the decision that gives you the most peace. Do not rush as the decision impacts the rest of your life.

I had right mastectomy w/ immediate implant recontr. 12 years ago. Now I wish to remove the implant as it never felt a part of me and looked too big compared to the other side. So now I am thinking of either going flat on mastectomy side or just getting a smaller right SMOOTH ( not textured that causes lymphoma) implant that may be more comfortable and give better symmetry. I am not great with long surgeries so DIEP tissue flaps are out for me. As with others here I think no matter the reconstruction type disappointmently nothing is like the real thing looks wise or sensation wise. Despite that I kind of want implants but still worried about implant problems of re surgery, capsular toxicities, etc. Aw, decisions, decisions and my PS consult is soon so got to finalize my plans. Racheal

are you torn because your own wants are at conflict with what society expects? To me it seems like 75%+ of women know which way they lean - reconstruction or not. Of course reconstruction then can yield more indecision about which type. But I personally don't experience much indecision... it is your body. How would you feel best? Listen to yourself.

Hi Ann. I had bc and a mastectomy back in 2008 with tissue expanders and then silicone implants. Last week I had the implants removed for a variety of reasons and I'm so glad I did. I am 62 yrs old and have been married 35 yrs. I am so glad to have nothing unnatural in my body. Remember that implants are definitely NOT lifetime devices and will require you to have more surgeries in the future. Have you had your mastectomy yet? best wishes to you.

There are a ton of women in the flat and fabulous group on facebook who are there because they wanted to or had to have implants removed. I'd say most of them look quite similar to women who just went straight for the mastectomy, however it depends on if they had radiation or not. There are many pictures in that private group to give you an idea. Many women also seem quite happy or relieved once they are out.

My tumor was multi-focal and measured 4.9 cm on MRI, and my breast surgeon felt that mastectomy was the only option. I had a nipple-sparing unilateral mastectomy with immediate reconstruction (smooth round silicone implant with AlloDerm) 11 days ago. It hasn't even been two weeks and I'm very happy with the results. In clothing, even just a bra, you can't tell which breast is new. Without clothing, yes, it's noticeable since my left breast is a natural D that breast-fed two kids so it's not as perky as the new one. I figure that, once I've been through treatment, if it bothers me then I'll have further plastic surgery for a more uniform look without clothes. But for now, I couldn't be more pleased. When I had my one-week follow-up last Friday I kept thanking my plastic surgeon over and over again. For me, immediate reconstruction really helped with the emotional trauma of losing a breast. Just my experience as everyone is different and this is a very personal choice.