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Reconstruction Q & A with Uneasy Pink

January 8th, 2012

I have had a hard time writing about reconstruction. It doesn’t quite fit the heroic cancer narrative of kicking ass and taking names. It’s more personal and intimate. Reconstruction serves quite literally to rebuild not to cure, making it awkward for an audience.

Nonetheless, I have had some interest bubble up through my various connections about what I am up to and what it is like. I asked my friend and fellow blogger Katie from Uneasy Pink to generate some questions for me to answer on the topic. So, here we go…

How did you chose from the alternatives?

I had delayed reconstruction, largely because of my radiation. Radiation damages skin and muscle on your chest, thereby completely altering your reconstruction options. My doctors uniformly advised me against starting reconstruction until 12-18 months after radiation because of the increased potential for complications with both my medical treatment and the cosmetic result.

This is my attempt at making a decision-tree illustrating reconstruction options.
A number of choices were not available to me because of the specifics of my case.

Once I began reconstruction 15 months after radiation, my goal was the best cosmetic outcome with the least chance of complications or damage.

Women undergoing breast reconstruction can choose broadly between tissue reconstruction and implant reconstruction. Because of my radiation treatment and body fat content, I was not a candidate for tissue reconstruction. (You can read more about these options here. There is also a newer kind of tissue reconstruction that I did not have access to, although I would likely be a candidate for it.)

Among the options for implant reconstruction, I chose bilateral lat flaps with tissue expanders and silicon implants.

Lat flaps involve taking some latissimus dorsi muscle from the back and moving it to the chest to create a shelf for the breast implant.

Tissue expanders work to stretch skin to make room for saline or silicon implants.

Because of my radiation, I had to do lat flaps on the right side. The skin was too damaged to just place tissue expanders and implants under the chest muscle (the alternative). I could have opted to do the flap on one side and the expanders under muscle on the other, but it would have compromised the cosmetic result because of the inherent asymmetry. Although I had some hesitation around the lat flaps, my doctor reassured me that they take a very small amount of muscle to make the shelf for the implant.

I chose the silicon implant because it was lighter and more natural feeling. My surgeon reassured me about the quality of the silicon implants he uses. The saline also risked dimpling and sloshing when I run.

What it have the surgeries been like for you?

I had never had surgery before I had cancer. Through all the treatments I underwent as a cancer patient, I had the easiest time with surgery. My tolerance for anesthesia and overall fitness seem to play into this.

That being said, having surgery after chemo as I did with my mastectomies was a whole different ballgame compared having surgery when I felt fit. Although the first of my reconstructive surgeries was the most difficult (it involved the lat flap construction and tissue expander placement), my suffering paled in comparison to what I experienced with my mastectomies. I was in the hospital for four days and had 6 drains in all. Definitely not fun. But waking up with an A cup nearly brought tears to my eyes.

In what ways has it met/exceeded/fallen below your expectations?

I would say that overall, so far, this processes has met or exceeded my expectation. The first surgery was tough, but I regained mobility quickly. Interestingly, I had so much scarring from radiation that my mobility actually improved since my surgeon removed significant cording from my armpit.

The one part I did not anticipate as fully was how uncomfortable the tissue expanders would be. The tissue expanders go in during the first surgery and are little bags that get injected with saline little by little to stretch out the skin. Once I got above a B cup (about 300 ml on my body), I was quite uncomfortable. My final fill went up to 400 ml, so that was over a month of living with that discomfort.

How has it impacted you physically, as far as strength, exercise and flexibility go?

I am athletic and sensitive to my body, but I have not noticed any difficulties with the lat flaps. I did a lot of weight training before the surgery. Whether this just helped me psychologically or provided actual support, I do not know. But once I healed from that, I was able to resume my training with my regular weights. This surprised me because I was prepared for an adjustment period. As I said, my range of motion actually improved because of the improvements with the scarring.

How about the psychology of it?

For me, this has been the best part. Not having to strategize my neckline with every outfit. Feeling like I can have some lovely amnesia about everything I went through with the treatment. I know fully that these are not fully functional breasts –– they do not have the sensation of real breasts –– I feel more like myself with them.

I knit this sweater for myself to wear after surgery. I call it “Welcome back, girls.”

If a person is going to do this surgery, what can she realistically expect for recovery time?

“This surgery” is really three surgeries. Luckily they get progressively easier. The first surgery is the lat flap and tissue expander placement. It is the toughest, with 2-3 weeks of really being out, and another 3 weeks of limited activity. The follow-up fills also require appointments and continual adjustments.

The second surgery involved switching out the tissue expanders for the implants. The whole thing took less than an hour. There were no drains involved, and I was off of pain medication within a week’s time. My physical activity is restricted for four weeks.

I will report on the final surgery (nipple reconstruction) once it’s over. But the surgeon assures me that this will be the easiest procedure of the three.

What’s one thing the doctor didn’t tell you that a woman facing the surgery should know?

My doctor was pretty frank with me, but I think I still underestimated the discomfort of the expanders. By the time my second surgery was on the horizon, I felt 9 months pregnant. I was ready to get those puppies out of me.

UPDATE: My friend Sarah found an actual decision chart in the back of a book by a surgeon in the UK. There is another procedure that uses tissue from the buttocks to make a new breast!

This entry was posted on Sunday, January 8th, 2012 at 9:01 am and is filed under Survivorship. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

20 Responses to “Reconstruction Q & A with Uneasy Pink”

  1. January 8, 2012 at 12:29 pm

    Lani – I love your new jumper! The detail on the front edge is simply delightful!
    I can so relate to much of what you say – I cried when I came round from surgery (I had delayed single DIEP in 2009, and further surgery followed)… but seeing ‘something’ where my right breast had been missing for two years was… well I still don’t have the words, I just burst into tears.
    I think when considering recon it’s important to really look at all the options available to you and also talk to other women about their experiences – so thank you for writing this, it’s a difficult topic. And I am delighted you are happy with your results.
    Best to you, Sarah

  2. SherryEh
    January 8, 2012 at 1:39 pm

    Thank you so much for sharing your story!

    I’m having my tissue expanders replaced with saline implants on Jan 27th. I didn’t need radiation and I had the breasts removed right away (not soon enough after diagnosis for me!) and them chemo after. I agonized over my choice between silicone or saline implants. My surgeon told me silicone would be softer, look more natural, but from the side they’d look flat … like they were pressed up against a window. The saline would be rounder but harder (but he promised not as hard as the TE’s are). It’s a tough decision. You can’t change your mind later and try something else. I choose saline because the surgeon told me they’d look more natural and after everything I’ve been through that was important to me. Does it make me sound vain?

    At this time the surgeon’s not doing the lat flap, just inserting under the pec muscle. That’s the plan, anyway.

    We’re not sure of the exact cc’s they put in, as the left one needed a couple extra expansions and they think the original saline injection missed the TE. I’ll probably be a C cup when we’re all said and done. I’m looking forward to doing some shirt-shopping then!

    The later expansions (after 300 cc’s) were very uncomfortable. It hurt to lean forward, move my arms, etc for a few days.

    When I had my double mastectomy I was in the hospital overnight … that’s it! They don’t keep you in long – at least around here. I left with 4 drains. I was so excited to read you didn’t have any drains with your second surgery. They told me removing the expanders and putting in the implants is an easy, short surgery, and I’ll be sent home after it’s done. I have a 75 minute drive home (hubby’s driving) so plan on being medicated for that trip!

    I haven’t decided on nipple reconstruction yet, or tattooing. I joke that I’ll have some tassles tattooed but I may just like not having to worry about wearing a white t-shirt ;) I know family members who’ve had both and they’re split down the middle with being happy or unhappy with their decision to have the nipple reconstruction and tattoos.

    I don’t have a background in medicine, seeing blood and gore used to make me want to pass out. I thought I was being strong throughout the whole diagnosis, lumpectomy, trips to the surgeon and remaining calm when the surgeon lost my file, etc, but burst into tears while being wheeled into the operating room for the mastectomy, then apologized to the nurses for crying! But I’m evolving.

    I have close family members who’ve gone through the journey, but they’ve all had radiation and either done the tissue reconstruction or had no reconstruction at all. No one I’ve know has choosen the implant reconstruction.

    Thank you for sharing the story of your journey!

    Sherry

  3. January 8, 2012 at 2:22 pm

    Thanks for the informative post. I had immediate reconstruction after my bilateral mastectomy. That initial surgery was by far the worst for many reasons. I agree with you about the tissue expanders. They are unpleasant to say the least. I also agree with you about the difficulty discussing reconstruction openly. It is very personal. I’ve had lots of comments on my posts on this topic, so I know people want to “talk” about it. Thanks for continuing the discussion. You look great! And you knitted a sweater?? Wow, that’s impressive too!

  4. January 8, 2012 at 3:05 pm

    Many thanks for the reconstruction 101. Tomorrow’s my replacement surgery, so this came in just in time.
    Since my experience with an expander was not that difficult I really hope that the replacement and the switch to an implant will go smoothly. So glad to hear it was like that for you!

  5. Amy
    January 8, 2012 at 4:15 pm

    This was a very timely post for me too, thank you! I had my tissue expander placed on 12/14 and it was the most horrendously painful thing I have ever experienced….I was not at all prepared for it. I went in for a fill last Wednesday and was a little uncomfortable/tight for a couple days (didn’t sleep well either) but now it is settling in and not too bad. I’ve got 450 cc’s now and it’s about a small C cup I’d say. Very exciting to have shape (at least on one side)! I go in for a TRAM on 1/16 and I am completely freaked out about it. I have breast cancer on my mom and dad’s side and am not feeling like I have a lot of support from them with regard to reconstruction. I’m only 40 years old and can’t be flat the rest of my life, it just isn’t an option. But my parents have openly wondered why I’m putting myself through all this additional pain/time off work/recovery, etc. after 9 months of hell. I feel like it’s the only way I will get closure and can move forward with my life. But (even though I’m married with two kids) I can’t help but still feel alone through all of it. Thanks for sharing your story!!!! I don’t feel quite so alone now….brave women you are! Happy New Year, ladies!

  6. January 8, 2012 at 4:53 pm

    Great post, Lani, and wonderful that you wrote it (with a little help!) and shared the salient details, which are very important. That new recon technique you referred to is definitely the only one that has seriously tempted me…we’ll see. I’m almost more impressed that you knit that beautiful sweater yourself (because I can’t knit!). It’s gorgeous, and you do it justice. A link to this post is definitely going on my resources page.

    xoxo

    • January 9, 2012 at 11:09 am

      “Salient” details… good one, KK!

  7. Beckye
    January 8, 2012 at 6:10 pm

    Lani, you look fantastic! A knock-out! Your outcome is great, and I LOVE that you knit that sweater! :D Thank you for writing so frankly. This is really helpful, and will help so many going through this. Love you and will certainly save this link for reference. Enjoy! So happy that it’s been such a positive for you!

  8. January 8, 2012 at 9:07 pm

    Came here though Kathy’s Facebook link. Being a survivor of bc for 15 years I kind of feel connected to this blog. When I went through cancer the thought of reconstruction never came to my mind because I was worried about my kids, especially about my special needs daughter who was just 11 months old. After all these years I feel the need of having a reconstruction now because I am tired of all the stuffings in the bra.
    Your wonderful post has helped me think it over once again.

  9. January 8, 2012 at 9:08 pm

    BTW you look great in the sweater

  10. January 8, 2012 at 10:01 pm

    Great comprehensive post about all the different options – and you and your sweater look fabulous!

  11. January 9, 2012 at 9:06 am

    Way to go, Lani and Katie. Love the charts, the sweater – the whole nine yards.

    My reconstruction options were limited (somewhat) from prior radiation but I can tell you that — thirteen years later – my reconstructed chest (from a free flap) is awesome.

    No regrets.

    Jody

  12. January 9, 2012 at 11:13 am

    Nicely DONE, Lani & Katie. Stuff is very complicated and it’s so important to understand reconstruction really IS a process. Important, too, for those of us with implants to realize they are not forever, either. I was just looking at my the area above the implants and I think I will be going for additional fat injections this spring. I see two “hollow” areas and if there are procedures available to help me feel as “normal” as possible, I’m going for it!

    YOU LOOK AMAZING!!! I think you should be in an abstract in the NEJM…. ;)

    xoxox

  13. January 9, 2012 at 11:15 am

    Lani,

    This is a wonderful posting and very informative. During my reconstruction, the radiated skin made it very challenging (5 years post-radiation)for the surgeons to make the best breast possible. I still need a prosthesis for that one, as it is a size smaller than the other. Oh well. The doctors did the best they could….

  14. January 10, 2012 at 1:39 pm

    I had expanders placed at the time of my mastectomy, after 11 months with those in I am so glad to have them OUT! I just did my lat flap 2 weeks ago and had the silicone implants placed. They are much much more comfortable.

    I don’t regret reconstruction, I think it is a part of the healing process for those of us that choose it. There is nothing wrong with feeling more whole with reconstructed breasts. :) Love that sweater!

  15. January 10, 2012 at 3:34 pm

    Great collaboration between you and Katie! It would be very interesting to have this Q&A in a larger forum on reconstruction where anyone could answer these questions. The qualitative researcher in me wants to look for the themes of commonality and difference! Your sweater is lovely, and so are you.

  16. Kimberly
    April 24, 2012 at 2:58 am

    I am two weeks out from bi lateral lat flap w/recon. I had original bmx in dec 2011 and it failed after several surgeries due to past rads. Lat flap has been very painful for me, I have 9×4 inch skin grafts on my breasts and over 12 inch scars on both sides of back which are extremely tight. Six drains too. One thing no one told me is that I would not be able to , sorry for being so frank, wipe myself in the bathroom. This an emotional thing to go through and thank god I have a husband who is there for me no matter what. It would have been nice to prepare myself and him. I see this going on for at least another week maybe when the drains come out I can move around better.

    • April 24, 2012 at 9:43 am

      i hope you feel better soon. such a hard situation. i am sending love and wishes for speedy healing.

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