Going Off the DIEP End

Posted on: December 1st, 2011 by

Five years ago today, I had to get something off my chest.

It was my breasts.

I had a prophylactic double mastectomy with reconstruction (DIEP) December 1, 2006, a day I will know for the rest of my life. 

That day, I was made into a bionic woman of sorts. Abdominal arteries, muscle, and fat were tunneled up to create new man-made breasts, and my circulatory system was “rewired” so blood would flow in them. The nipples would be created and tatooed a few months later.

A lot of women envied me that day for getting “a boob job and a tummy tuck.”

Now before I tell the truth about my experience with the DIEP and seem like an ingrate, here’s a disclaimer: I wanted and needed the surgery, the DIEP was the best option for me, and if I had to do it all over again, I would have. (Well, except for the ICU part, which was so hellish, the devil has PTSD from the experience.) Nevertheless, here’s an open letter to my surgeons, who touted this surgery as the best thing since sliced Beth bread:

Dear Doctors:

First of all, I want to thank you for your excellent work. Your dedication and caring have meant the world to me, and I will always be grateful to you.

However, I want to let you know about who I was before surgery and who I am now.

Before surgery, I was quite athletic and fit, although a three-time yoga class dropout due to my general clumsiness. I enjoyed running, swimming, and weight training. Other than that little breast cancer “incident,” I was in excellent health. Before breast cancer, I liked my body. I wasn’t vain; I just was glad to have what I was born with.

Cancer would forever change that.

After chemotherapy, radiation, and three lumpectomies, I wasn’t so happy about what I was born with. Because what I was born with was deformed. Because what I was born with tried to kill me.

Add to that the loss of a great friend to breast cancer, a scare from the results of one of my MRIs, and general upheaval — and you can see why I opted for a DIEP flap. I couldn’t bear to wake up after surgery without breasts. I just wanted it all over in one fell swoop.

We all chose a surgery that would remove the deadly duo and give me breasts immediately. You all felt the surgery was a smashing success, and technically and medically speaking, it was. But as a human being first and foremost, not just a medical case, I see the success but also the drawbacks to the DIEP. The following is an account of my experience; I can speak for no one else but me:

Hospital Recovery

Once I was out of ICU and thus out of danger’s way, my post-surgical self could stumble about my hospital room and look around. But I made a mistake.

I looked in the mirror.

My torso was sliced up, and the bloodied stiches looked like railroad tracks running all over my flesh. It was ugly, much like cancer, come to think of it. But the scars would heal.

Still Recovering

Five years after the multicolored bruising has disappeared, I am still recovering.

Now, five years later, I want to know why you assured me that the DIEP was perfect for someone with an active, athletically fit lifestyle.

Why didn’t you tell me that I would suffer nearly crippling pain regularly from my compromised abdominal wall?

Why didn’t you tell me that I would re-injure my torso almost every time I pick up my daughter?

Could you have predicted that now, five years later, I still cry some nights because I hurt so badly?

And do you know that the pain is especially tormenting because it is a constant throbbing reminder of breast cancer?

Where in our pre-surgery conversation was the term “chronic, life-long pain” ever mentioned? Was it lost among the beautiful before-and-after photos that kept me so optimistic?

I grieve that I can no longer run. I am thankful, though, that I can walk and swim.

I don’t like myself when I’m in pain. I’m crabby, grouchy, depressed, and, well, crabby. I am trying my best to cope with relaxation techniques and to keep up the exercise. And then I feel guilty because I know that so many people have worse situations than me. I know how lucky I really am.

Mostly, I am still grateful to all of you. Because this surgery has given me a chance to see my daughter grow up. Notice I said “a chance.” I know that there is no guarantee that I will live a long, healthy life.  (OK, I want a guarantee I will live a long, healthy life.)  But you and medical science have done the best for me.

I will live with and accept the pain and carry on.



22 Responses to Going Off the DIEP End

  1. Jody had this to say about that:

    Wow, Beth. There’s so much to respond to here, but first, I want to thank you for writing what I can see was a difficult post recalling an even more difficult time.

    I can’t say that I agree that a surgery is a smashing success if the toll from recovery leaves you crying in pain to this day. You deserve an explanation, and a darn good one, as far as I’m concerned. Granted, with flap surgery doing crunches is no longer part of life. But having pain seems wrong to me.

    But I’m grateful you’re here telling your story. Thanks so much,

  2. Beth L. Gainer had this to say about that:

    Thanks for reading and commenting, Jody. I’ve already had an ultrasound and brought this problem up to the doctors, and they say that this is quite “normal” after a surgery as this one.

    I’ve been having a particularly rough week, and the pain isn’t always excruciating, although it is always there. There’s no repairing a compromised abdominal wall.

    I’m glad to be here telling my story, too. We all have our stories to tell.

  3. nancyspoint had this to say about that:

    Oh Beth, There are those days forever seared into our minds aren’t there? This is such a great post. I struggle with this gratitude thing all the time. I know I am supposed to be eternally grateful for my reconstructed breasts. I am but… (and it totally drives me crazy whenvever I hear that boob job comment) Beyond that, I know I should be grateful to just be alive. And I am, it’s just… well you know. You always get it. I’m sorry you still have all those issues. I’m sorry you had to have cancer. But here we are, continuing to adjust day by day. At least we aren’t alone!! And that, by the way, is one of the things I am most grateful for. Thanks for writing this.

  4. Beth L. Gainer had this to say about that:

    Thank you, as always, Nancy for your supportive comment. Yes, you always get it, too. I am sincerely grateful for everything, as I know I got the best treatments I could, but, well you know how it is.

    I’m sorry you lost your mom to cancer and then had to go through your own cancer. It’s crappy. I am grateful for your support and for not being alone through this experience, journey, or whatever it is called.

  5. AnneMarie had this to say about that:

    Dear Beth,
    My own surgery was only slightly ahead of yours (5 yrs in Sept). I did the “gummy bear” implants. My mom, after twenty years of a prosthetic, had her other cancerous breast removed in 2007 and has “normal” silicone implants now on both sides. My sister opted for a flap surgery. The scars are a reminder every single day. My sister, despite only having sentinel nodes removed which greatly reduces the risk, has lymphedema.

    I, too, am glad to be here to tell my story and to read yours. I too, know I am lucky when I see some of the others who have much more difficult prognosis. Also, I see the pain you are experiencing and again, I know I’m fortunate there, too. But it is all “Just For Now.” We are all “at risk” and I only have to look to my own mom to be reminded of what could happen 20 years down the road, just like it did to her….

    I just hate that we’ve become so damn accepting of the fact that many can survive we are not making meaningful progress.

    I hope they find some sort of a solution for the compromised abdominal wall and I hope your pain will soon subside. QOL issues are often ignored and they are too important for us to keep turning a blind eye….

    Thanks for sharing,

  6. Beth L. Gainer had this to say about that:

    Hi AnneMarie,

    Thank you for your caring comment. Wow, so we both had our surgeries only a couple of months apart!

    You are right about quality of life issues often being ignored. Too often, doctors can be so focused on a medical solution, they don’t think of the aftermath of treatment.

    Yes, our society has grown too complacent about what survival really means. Survival means success, right? Well, it’s not a complete success until the cure for breast cancer is found and no one ever has to endure this disease again.

    Thank you for sharing your mom’s and sister’s stories. I appreciate your candor.

  7. CancerCultureChronicles had this to say about that:

    Thanks for sharing your truth Beth. This must have been very emotionally painful to write. Many people don’t want to believe that the ” happily ever after” scenario after cancer is in fact a myth for the majority.

  8. Julie Goodale had this to say about that:

    Beth, thank you for writing about this, & sorry you’re still having so much trouble. Unfortunately, docs usually focus on their successes, & minimize the possible downsides. I guess that understandable, but we really do need to know before hand. That your doc says it’s all “normal” indicates they really could have done a better job of talking about realistic after effects!

    “Success” means so many different things. My definition of successful may be quite different than my doctor’s! A heart surgeon may consider a procedure a success if the patient is still alive on the table when he leaves the room. But if the patient dies 3mins. later, will his family think the surgery is successful?

    That amount of pain certainly does not seem like a success to me.

  9. Renn had this to say about that:

    Great post, Beth.

    I’m sorry to hear that 5 years later you are constantly reminded of recon and BC.

    I’m still less than one year from diagnosis and am SO wanting recon to be done! Some days I am more patient than others.

    Keep on writing,


  10. Lisa Shrossis had this to say about that:

    Beth, what a wonderful post that I’m sure was difficult to write. Thank you for sharing…it makes me understand more of what you have been going through the last five years. Although my medical situation is different, I can relate to how medical professionals gloss over the post-surgical or post-treatment quality of life part. Thank you for your support, and you know you always have mine. HUGS.


  11. Beth L. Gainer had this to say about that:


    Thanks for commenting. Yes, it was an extremely emotional post to write, and the very situation I’m in is an exceedingly emotional one. You are right: too many people want to believe the myth of the triumphant, happy breast cancer patient/survivor.

  12. Beth L. Gainer had this to say about that:

    Good points, Julie! It’s so true that a doctor’s view of success and a patient’s view can be so different. I think too many doctors focus on the scientific or medical success, while disregarding those quality of life issues.

    I think my surgery was as successful as it could be. I guess what I’m really bitter about is not being told before the surgery that most likely I’d be in chronic pain.

    I’m sure many others who have had my surgery just quietly accept the pain and don’t bring it up.

    But it is there, always there.

    Thank you for reading and commenting.

  13. Beth L. Gainer had this to say about that:


    I appreciate your readership. Yes, I remember when I was in your situation, just wanting everything to be done already!

    You will get there, but as you already know, it’s a long, arduous journey.

    I appreciate your support.

  14. Beth L. Gainer had this to say about that:


    Thanks for your kind words. It’s difficult for people with any illness to simply pick up the pieces and go on. Chronic illness, chronic pain, emotional upheaval….these are not what doctors always think about. They are there to treat, and not think about the aftermath of what they are doing.

    The first five years after diagnosis were physically and emotionally rough. After I started gaining a grasp on my life five years after, then I needed the surgery. That ensured lifelong pain and agony.

    I wish so much that some doctors would be more upfront about informed consent.

  15. BreastCancerSisterhood.com had this to say about that:

    Boy can I identify with this! I sometimes think the list of things our doctors & surgeons fail to tell us is longer than the list they do mention. The abdominal pain from a DIEP makes it difficult to concentrate on anything else. After five years, my pain is gone, but for the last two years, that area itches. Last night the itching woke me up. Am wondering what comes after itching? Take heart, if you can, for eventually we heal, hopefully in this lifetime.


  16. Beth L. Gainer had this to say about that:

    Hi Brenda,

    I am very glad you are in no more pain. That’s a huge relief, I’m sure, although the itching is not exactly great either. It helps me to know I’m not alone when I discuss this type of pain and that other people, like you, totally get it.

    I hope the itching subsides, and you can find yourself feeling healed.

  17. The Accidental Amazon had this to say about that:

    Oh, Beth…I know you read my post last March on reconstruction. And I knew you’d had a rough experience. I’m so sorry it was as bad as it was. Sigh. Even when you think the surgeons are providing you with thorough information, they’re not, I find. And I say this as someone who works with a lot of surgeons in my job. The plastic surgeons may be among the most blinkered. They just really don’t know. Until every one of them goes through a similar Frankenstein experience, or at the very least provides a way to ensure that they are receiving long-term, honest feedback from their patients, they will never get it. I’ve seen too many post-surgical trainwrecks in my job ever to take what any of them says at face value. I’m so glad you are still here, though. And I’m very glad you’re writing your book.

    xoxo, Kathi

  18. Beth L. Gainer had this to say about that:

    Thanks, Kathi, for your continued support and understanding. I’m sure you’ve dealt with a lot of patients whose surgery had gone awry. I agree that it is a Frankenstein type of procedure. And I agree that plastic surgeons should experience what it’s like; so many doctors don’t give true informed consent.

    Thank you also for the encouragement regarding my book. I just don’t want others to have gone through all I went through. Unfortunately, I had to learn it all the hard way.

  19. Jill had this to say about that:

    Dear Beth,
    As a plastic surgeon in Australia I’d like to thank you for your honest account of your surgical experience.
    I’m sorry that you had this experience. It’s most enlightening for me to read about it, and to read of the experiences of other commenters.
    Thank you for your honesty, candour and efforts to ensure that other women who are in the same situation receive the best possible information.

  20. Beth L. Gainer had this to say about that:


    Thank you so much for reading my posting and commenting. I know plastic surgeons work hard at their craft, and like I said in my post, I have a lot of gratitude to my team of doctors. I think at times, some surgeons don’t mention that there might be long-term pain as a result of the surgery. I wish I had been told this; I would’ve still gone through with the surgery, but I would’ve been better informed.

    Thanks again for your readership,


  21. Anonymous had this to say about that:

    Beth, I had no idea you were dealing with this sort of chronic pain. Sad!

  22. Beth L. Gainer had this to say about that:

    Dear Anonymous. Thank you for reading and your empathy. The results of my medical treatments is something I have to live with every day. The pain makes me sad, but I’m alive, and that’s important to me.

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