Opting Out of Breast Reconstruction: A Tough Personal Choice

I am standing with my hands on my hips while he is busy staring at me. I am naked waist up. He has a camera. A real nice professional, looking one. There is back ground screen and a metal stool that spins. It’s a small room with dim lighting; the camera flash fills it with lights briefly. It’s just me and him. I, a modest and stressed-out woman, raised in a very modest culture. He, a man holding the camera. His coat, the white coat, however makes this scene appropriate and marginally tolerable.

He is focused, very focused on my breasts. His eyes are scanning me closely, it’s uneasy and unnerving. I can tell that even though he is taking pictures and asking me to pose as I rotate my body and he captures all angles and curves, that mentally he is also calculating and sorting how the reconstruction would actually happen. He is tall and intense and seems to love what he does. He remains professional. I am unsure and anxious.

Never in a million years had I thought, before I was diagnosed with breast cancer, that I will be doing a photo shoot of my bare breasts.

But when cancer happens, all rules are void, all assumptions deemed wrong and all ideas are turned upside down. You do whatever it takes to get this monkey off your back and keep it away. You agree to things that you would have bet your life were out of question, you make decision that send shivers up your spine, you accept it all with a heavy heart and impending fear. Cancer changes everything!

I had been referred to a plastic surgeon, shortly after my diagnosis and treatment plan was established. Through the early phase of diagnosis, what kept the fear of loss at bay is the thought of getting reconstruction. Reconstruction, a surgery to rebuild the shape of the removed breast. I heard from ignorant but well meaning friends, “You will get new perky ones or you get to pick your size this time,” – the assumption being I would chose reconstruction.

Even the plastic surgeon asked me, if you had your druthers, what cup size would you prefer?”

“Full of anything but cancer,” should have been my response but I was quiet and lost.

The word reconstruction conjures in my mind, hard hats and heavy machinery not a photo shoot of breast with my plastic surgeon. Construction, putting something together, is far from what you want to hear when your heart is still protesting being broken from the blow of cancer. I tried to grasp this truth.

“I am broken by cancer but this guy will put me together, at least overtly. I don’t know what will it take to put me together fully but may be this is the start. The start of a long tedious uphill journey to regain myself from the clutches of breast cancer.” Recovery from cancer occurs both outwards and inwards. It is alleged that getting reconstruction can improve recovery from the trauma of cancer, I can see the point.

I just don’t know how any one forgets having had cancer, whether you see a scar in the mirror or a reconstructed breast.
Whether a flat scar or a reconstructed lump, the elephant, the monkey, the snake, it still sits on your chest making each breath just a bit shallow, just a little tedious, as you are more appreciative of each breath as a cancer survivor.

Prior to getting pictures, I was sitting in his office playing with the silicone implant kindly brought to me by the nurse for demonstration. This was preceded by the display an album of reconstructed boobs, given to reassure me of the skills this doctor possessed and the results I could expect.

Inside I was trying to string my thoughts together, “So they will cut my breast off, I will lose my breast, it will be painful and then they will make a new one”, as I flipped through the pages of the albums.

Big breasts, small breast, round and firm, reconstructed, man-made, post cancer, resurrected… femininity regained, self-esteem glued.

I was mentally writing the obituary of my breast as he talked over with me the options available to me. At 5’3″ and 120 pounds, he clearly was disappointed that I do not have enough fat in my body to put together a fake breast structured out of my own body fat. That procedure would be called an autologous transplant, that is the tissue comes from my own body. So much for being fit and not having fat to spare!

My only option therefore was a silicone implant if I opted for immediate reconstruction. I had obviously heard about silicone implants and seen my share of plastic surgeon reality shows, and thought that shouldn’t be too hard.

Of course, just as others I didn’t realize at first that breast reconstruction isn’t really a boob job or a breast augmentation. It’s dealing with a diseased breast with cancer, salvaging as much skin as possible without leaving the cancer behind and then putting it together in a rounded shape lump which has some semblance to a human breast. That is reconstruction, very different from the Pamela Anderson-esque giant breasts that have great cosmetic appeal or the reconstructed Jolie breast that did not have cancer in them.

In reconstruction, cosmetic appeal is not the primary goal, its reconstruction as an effort to rehabilitate the breast cancer survivor. Good results are never guaranteed. The lucky ones are happy with what they get; others suck it up as yet one more emotional scar from the plunder of cancer. There are satisfying outcomes and then there are horror stories. With a recent cancer diagnosis, I did not feel that luck was currently favoring me.

The pictures that I had looked at were reassuring though. The chest wall won’t be flat, there will be something there. Something to fill out the fitted dresses, something that would keep me at least partially complete.

I had struggled with the idea of whether I was getting reconstruction or not in the first place.
My aunt who is a 30 year survivor of breast cancer did not have reconstruction and she had seemed to have managed alright.

But it appeared that younger women all opted to do reconstruction. I couldn’t decide. Being a physician was not offering me a significant advantage in this scenario. I didn’t have much knowledge about plastic procedures.

I called my aunt and asked her, “What do you think I should do?”

Her answer, practical and pragmatic just like her,”Get it done; it makes things a lot easier”

“Prosthesis is a hassle, I didn’t care for them, something permanent is so much better”.

I heard the longing in her voice.

An implant is really a permanently placed prosthesis that you can’t remove at night when you go to bed. It sits on your chest, so hard to lose in the closet. It probably requires some getting used to.

Looking for more data, I then called another friend, a younger survivor, one year out in treatment. She strongly advocated for it. She then stated, “It is between you and your husband.” Up until then I wasn’t even thinking about him.

It was more “I have cancer, they will cut it out, I will have no breast, and do I want a new one?”

Suddenly, I was reminded of the sexuality of the breasts and my identity as a woman. I felt even more stressed and confused.

My breast surgeon seemed matter of fact about reconstruction as if that the natural path that I should take.

My mind was full already, I had just been diagnosed with cancer, cancer , cancer, cancer, and now I am expected to make some sane decisions.

Who has the mental ability to do that? First I lose my mental peace and then I am told to think and decide? How can I? Am I even well enough to decide what I really truly want? I can’t decide whether I am hungry and want lunch or what to wear to the appointment because of the fog I am in and I must decide that kind of reconstruction I would like?

I was given information about mastectomy, drains, implants, and other paraphernalia. I was given a poufy fake breast for after surgery to stick in the post operative camisole. All of this was happening too fast. Just one week ago, I was living my life, uninterrupted. And now I had to decide which procedure I wanted, with no emotional energy. I felt stressed and numb. I could not access my emotions. Just working through a mental algorithm of pros and cons of options.

One can get reconstruction at the time of mastectomy which is called immediate reconstruction. This type of reconstruction is done at the the time of mastectomy. In this procedure after removing the breast, they typically will put a small fluid filled pouch called the “tissue expander” underneath the chest muscle to help the skin stretch. This requires repeated visits to the surgical office to get saline injected and serves to expand the skin which will be around the breast to be constructed. I have learned from other survivors that the skin stretching is painful. The expander is then replaced with a more permanent kind of implant. Yes, a second surgery. A third surgery is usually required for the nipple reconstruction and that nipple is devoid of any feelings.

Delayed reconstruction is getting reconstruction at a later time, and typically involves procedures that require grafts. Plastic surgeons can take tissue from the back, abdomen and buttocks and put a breast together. They can swing the muscle in your shoulder blade in the front to make a breast.

The advantage of having your own tissue is that is ages with you , gains and loses weight with you and doesn’t have a risk of wandering or rupture of an implant. But autologous flaps can fail, get terribly infected and cause lots of pain, both at the reconstructed site and the donor site…the spot where the tissue was taken from.

Reconstruction is done in steps. It not just one procedure. It’s a series of surgeries and procedures to rebuild the breast.Just like that T-shirt that I saw online saying ” Under Construction” on one of the pink ribbon websites. Unfortunately, it’s not a onetime deal.

Getting implants is considered easier than using a person’s own tissue. Implant procedures are shorter with generally shorter recovery periods and less blood loss but require more follow up visits. The long- term issues with implants, of course, is that they don’t last a life time. So one is essentially signing up for minimum of two surgeries upfront.

If I considered an autologous implant, I would have to make peace with additional scars. Scars at the site of the area providing the tissue to build the breast. Whether it came from abdominal wall, buttocks or the back side of my shoulder. This could all lead to weakening of the donor site.

I tried to assimilate all this information. Any type of reconstruction increases the side effects experienced. This didn’t sound fun.

The good thing was that I didn’t have to worry about was the cost of the procedure. In 1999, the Women’s Health and cancer rights act has helped women be sheltered from the uncertainty of coverage for reconstruction. Now group plans, insurance companies and HMOs that pay for mastectomy are required by law to pay for reconstruction.

One of the most feared consequences of a mastectomy is waking up “flat”.

We women are used to having breasts on our chest. We somehow after puberty learn to embrace them and their existence. Lying prone, feels a bit odd once the breast start to develop but we gradually adapt. Then it’s dealing with the bras and support. Breasts are an essential part of a woman’s sexuality and vital part of the joy of motherhood. Every phase of life does have a changing role for the breasts. I just wasn’t ready for the cancer-phase of my breasts or be ready to part with both of them or just one.

I tossed around the idea of running around with one breast. I would certainly be lopsided. For a single DD cup certainly sways the center of gravity. I couldn’t be one of those who choose to forgo mastectomy and then throw a tank on without prosthesis and no one notices. My missing breast would be very noticeable.

So was I signing up for a lifetime of prosthesis and special bras? It all seemed like such a hassle and opting for surgery seemed like the thing to do.

I told the plastic surgeon, I am willing. I signed up to get a breast, which would be nothing like what I would lose and would be devoid of any sensation. Yes, a little known fact and little discussed fact is that reconstructed breasts are numb. And because the implant sits behind the chest muscle, unlike the augmentation implants which are above the muscle, a woman can willingly move reconstructed breasts.

But of course these facts did not deter me from wanting reconstruction at that time. The morning of the surgery, I had to first go see the plastic surgeon, hungry and thirsty for the last 10 hours, to get marked up for how the plastic surgeon wanted the breast surgeon to excise the breasts. I had generous markings from a black sharpie on the soon to be deceased breast. Then I head to the hospital for surgery.

I woke up with my left chest in lots of bandages and two drains emerging from right underneath the arm pit. I was in pain and I didn’t feel well. The details get fuzzy as to when the bandages got removed, but I do remember the first time looking at the “mini boob”, as I called the small reconstructed lump on my left chest and feeling rejoiced.

My first thought was, “I am not flat.” At least something is there. I could see the sutures and it wasn’t the prettiest sight but nonetheless…not flat. Two days post-op I started to notice that the skin on the newly constructed breast had started to change color. I felt something was wrong. I contacted my plastic clinic who advised me to come in.

A repeat surgery was recommended to “clean out the dead skin”. Four days after a six hour procedure mastectomy, I was told I needed a trip back to the OR. I was devastated and weak. I wanted to scream and say just leave me alone. Why should I go through any of this? Why?

I asked the surgeon to remove the expander in the second procedure. I was done with reconstruction.

In that instant I gave up the idea of coming together surgically. I was overwhelmed. I had 16 cycles of chemotherapy that were in my future and most likely radiation. It was more that I could bear. I embraced the prosthesis and the special bras and the lopsidedness. I accepted the fact that I could not walk into a department store and purchase a bra off the rack. I accepted that I would be dependent on silicone prosthesis to look whole. I accepted special swim wear and being miserable in hot summer days with the prosthesis.

I decided to go flat because the of the thought about the series of surgeries that the reconstruction process requires. Innumerable doctor visits, risks of infections, risk of repeated anesthesia, risk of implant failure, pain and above all prolonging the role of being a patient. I wanted all of it to end as soon as possible, and certainly not last any longer than absolutely necessary. I am a risk-averse individual. Elective surgery to me felt taking a big risk.

I think all survivors of breast cancer eventually decide on their own whether they will opt for reconstruction or not. Some are steered and nudged in the direction unaware of the long tedious way with hurdles and complications, others decide with all information available and more peace of mind. Either way it’s a very personal choice.

My biggest issue with reconstruction was subjecting myself to elective surgery. I tried but from one Tuesday to another Tuesday I was back in the OR, this disheartened me. I wanted to be done with surgery.

Being a physician, I understood how surgical intervention puts a body behind in the recovery process. I had heard that each hour in the OR is equal to a month in the recovery journey. I had already spent 6 hours in the OR and I felt I couldn’t afford more. I had read some studies that indicated negative effects of repeated anesthesia on the brain. I didn’t want to be tied to the plastic surgery clinic to go get the tissue expander filled slowly few milliliters at a time, as the skin is stretched out, and going back to the operation theater to get the expander replaced by the implant.

I didn’t want to sign up for the day when the life of the implant is over and would have to be replaced again surgically. I didn’t want to risk the implant traveling or leaking in the surrounding tissue.

I wanted to be whole again but realized I could be complete with one breast, as long as I survived with grace and tenacity.

I had opted for immediate construction unsure but the failure and repeat surgery felt like a sign to me to opt out of this path and I did.

I still feel it is so unfair that newly diagnosed women are burdened with such a major decision during the most stressful phase of diagnosis. I especially feel for those women, who unlike me have no medical background and knowledge, and sometimes are poorly educated about their choices. I feel sad for those who opt for reconstruction without have a clear road map and have to deal with complications. This, of course, happens in parallel to other cancer treatments like chemotherapy and the difficulties those harsh treatment cause. Getting radiation sometimes can cause the implant to harden and cause pain.

Women are expected to understand what is immediate reconstruction as opposed to delayed reconstruction. They don’t have much idea what happens in between. They don’t understand risk of infections and complications that pattered along the way. Sometimes the process of reconstruction isn’t done until two years post diagnosis.

I finished my treatments last year and was able to focus on rehabilitation from cancer because I was not involved in the reconstruction process and having additional surgeries to deal with. I could take a break from appointments.

After finishing 16 cycles of chemotherapy and 33 radiations, I felt done. Done with treatment. I didn’t feel like surgical work in progress. For the last year my goal has been to get stronger and healthier. My time isn’t being robbed by frequent appointments and complications of the process. By opting out of reconstruction, I have not spent time in the OR or being under anesthesia. Time becomes a very precious commodity after cancer. One loses a lot of time during treatments. I was happy to not have to give up some more away from my family and my life.

Another concern I had was my mental sharpness. “Chemo brain” is a known effect of chemotherapy leading to memory and attention problems in many survivors. Repeated anesthesia  on top of that could possibly be more impairing. It’s not clearly not known or studied and I didn’t want to find out.

Since the end of my treatment, I have been able to engage in more physical activity and have not had post surgical down time. For me these benefits have meant returning to life faster. Not being distracted by the reconstruction process allowed me to remain focused on healthy eating; staying on my diet which allowed me to lose all the weight I had gained during chemotherapy. I recently got scanned and measured for a custom prosthesis that will be made to look exactly like my other breast. That feels good enough. That feels right for me. My fellow survivors will decide for themselves.

What is just unfortunate, however, is the fact that the circumstances under which newly diagnosed women decide about reconstruction, is just not conducive to making a well thought out decision. It’s a time of enormous amounts of stress and uncertainty coupled by fear and emotional distress. Even though it is an elective surgery, it doesn’t feel like a real choice.

Breast amputation followed by reconstruction or not, is a traumatic experience in its self. It’s hard to know whether to let go of the breast completely or try and salvage something from the grand theft of femininity called breast cancer. Whatever one chooses, the decision will always remain a difficult and a stressful one. Everyone will decide what works for them. I opted out, and am happy with what I chose.

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19 thoughts on “Opting Out of Breast Reconstruction: A Tough Personal Choice

  1. Your honesty and courage in examining your process are rigorous and outstanding. I did not have reconstruction, but I don’t think opting out was an informed decision on my part. Nevertheless, I am very glad I did not have the procedure. Thank you for sharing these memories. It cannot have been easy to revisit them. ❤

  2. I did not have reconstruction and do not regret it. I tossed it around, made appointments, etc and finally came to the conclusion that I could not fathom going thru all that. Thank you for sharing.

  3. Thank you for your honesty and insight. It’s a decision I am going to have to make sometime down the road so it’s good to know what others’ experiences have been. You are so brave and strong.

  4. Hi Uzma,
    I appreciate your candor. I agree with you completely that women are unfairly burdened to make these huge decisions at a time when so darn much is going on. And opting out should always be thoroughly discussed as an option. I don’t even remember that being part of the discussion. I’m glad you are happy with your decision. Thank you for this excellent post.

  5. Such an excellent article. Sixteen years ago I went with the reconstruction using my own fat and had both breasts removed and rebuilt. I remember I just wanted to be as normal as possible… NOTHING normal at all about the whole process. The worst though, is that radiation, totally fried the one breast and I have to wear a prosthesis anyway. If I had known then what I know now, I would have just had them both off and been done with it. Nothing is going to be normal after anyway. In fact after asking questions and hearing “oh that’s normal” about 50 times, I finally asked them to not to use that word around me any more. I asked them to start using “par for the course.”

    1. Sounds like quite an ordeal. It’s is so difficult as is, add the complicated decision making of reconstruction.
      I can’t tell u how may tell me that if they had know they would have opted out.

  6. Thank you for your candor and intelligent discourse. I had a double mastectomy 16 months ago and opted for no reconstruction for many of the same reasons. I am glad that I made this decision, and have total support from my husband of almost 44 years. Godspeed!

  7. no reconstruction for me…..just going thru amputation and radiation etc. is enough! i dont use any special bras either…i use all my old ones!

  8. Uzma, I am a physical therapist, and I’ve seen & blogged about what happens with my patients after implants and grafts. When I was diagnosed, I did not relish the notion of having anything inserted under a pectoral muscle, nor did I relish the whole mess involved with mucking about with other muscles or with abdominal flaps or huge scars or any of it. The plastic surgeon I consulted said that she sees a lot of nurses and physical therapists with breast cancer, and she didn’t recommend recon to any of them unless they felt they absolutely couldn’t live without it. We need our intact muscles and tissue, free of scars, infections, adhesions, in order to work with our patients. I agreed. I needed to get back to work so I could pay my bills, not deal with endless surgeries and all the problems that go with them. I also use my old bras. Pocket bras actually did not hold the prosthesis in place very well. It stays in place better between my skin and a regular bra. There are also custom made prostheses these days, if one wants to go that route, that are remarkable.

    It’s always an individual choice, but I think you made a wise one. There’s nothing ‘immediate’ about breast reconstruction after breast cancer. Hope you stay healthy. Kathi

  9. Thank you for your openness and candor. My mom died from breast cancer in ’77. I’m not even sure if reconstruction was an option at that time. She never got chemo, only radiation. I was only 15 when she got breast cancer and didn’t think of asking why not.

    I got ovarian cancer in 2012, thyroid cancer in 2013 and am now battling my third bout with ovarian cancer. I was found to be BRCA-1 positive. If I didn’t have so much cancer already, or all the chemo I’ve had (and am now still getting), “the sisters” would have been removed long ago – as would the ovaries that I didn’t know would try to kill me! I felt so betrayed! Those ovaries that blessed me with three lovely children turned on me!

    One of my children has tested positive for BRCA-1, and now faces all the decisions involved (including the insanely high risk of breast cancer) and is weighing her options. She has two children. My other daughter tested negative. My son…well, he is “busy being 26” but I keep advising him to get tested.

    Sorry this is so long. But despite not having had breast cancer myself, I feel that I can identify, as my mother had it so long ago, my one daughter is facing a great risk of it, and because of the genetic component and the fact that ovarian and breast cancer are so linked, I feel connected to it personally, as well.

    This is my 4th cancer in less than 3 years. I’m in it for the long haul, and will fight as hard as I can. I make fun of cancer – my way of empowerment. We are all sisters in this fight. Thank you for the insight you have provided. Linda

  10. Thank you. You captured the whirlwind and the pressure to reconstruct beautifully–I got sucked into it, too. It’s easy to choose reconstruction when everyone is telling you to reconstruct and you’re so dumbstruck by your diagnosis that the ONLY thing you have going for you is the trust you place in your medical team. I did what they told me… it was an important part of my continuing to put one foot in front of the other…. And I agree with you that it is just not fair that they force those decisions on us when we’re positively over-the-moon terrified and emotionally out to lunch.

    After failing immediate recon during subsequent radiation and ditching all efforts (after 2 more surgeries) and completing 3 months of hyperbaric oxygen chamber wound therapy (complications are quite messy sometimes), my oncologist saw me for a check-up and seemed 1) horrified at the train wreck my chest is and 2) alarmed I wasn’t interested in trying reconstruction again later.

    He said, “You are going through a lot right now… Women with cancer… it’s a hard time and a lot of things are being thrown at you. This isn’t a good time to rush to any decisions….”

    I found it pretty ironic that while no one was concerned about rushing into decisions back when I was first diagnosed, didn’t know whether I’d survive, and was undergoing chemo, just 9 months later after I’d had plenty of time to sit with my disease, beat it, finish some really aggressive treatment, and fail reconstruction–THEN someone is concerned about me rushing.

    So…. your story spoke to me, I thank you, and I hope it gets wide readership. We all grasp for straws in those early days of diagnosis–and hopefully as they search for knowledge and survivor stories, the newly diagnosed will find this gem and demand some time to make this decision.

    1. Thank you!! For reading and sharing . It’s a tough long road and I have a lot of regard for those who go down this path, it wasn’t for me and my circumstances. Those who opt out are strong in their own right. Everyone has to pave the most appropriate path for themselves.

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