Choosing Not To Do Reconstruction

I will tell you that this was not an easy choice, nor one I took lightly. I agonized over this even before I knew for sure I was going to have a bilateral mastectomy. Back when I first found out the DCIS diagnosis in May I already started considering my options. I'm a girl who likes to know her path and what lies on that path. I like to be prepared as best as I can be. So when I knew it could potentially be a possibility, I immediately began thinking about what I would do.  I researched. I asked opinions from people who had it done and didn't have it done. Ultimately I determined it's an extremely personal choice and I would only find the right answer inside myself. 

I had a friend who had breast cancer nine years prior and she was the same age I was when I found out - 35. I remember what the stages of her reconstruction were with implants so I wasn't completely in the dark on what to expect. My initial thought was no reconstruction. I hate needles, hate surgery and didn't want to have multiple surgeries for boobs. I felt they were unnecessary surgeries and risks for me to take considering I have a two year old. Again I say, I HATE needles. 

Initially when I found out I would have a lumpectomy I was torn between relief and not feeling like it was the right option. My intuition told me it was the wrong path. When the lumpectomy was called off and the mastectomy became the option, I promised I would talk to a plastic surgeon anyway even though I still felt like I didn't want to have the reconstruction. 

Talking with the plastic surgeon reinforced my fears - implants were not lifetime devices and I would end up with multiple surgeries over the course of my life. I left the office, stopped in the bathroom on the way out and cried. I cried because I knew I had no option for reconstruction that didn't involve doing more than I wanted to do (a flap surgery of some sort) or implants that required more than one surgery. For me a TRAM or DEIP flap surgery was just overkill. For me. I totally get the advantages of it and understand why some people choose to have those procedures done.  But for me it was just too much to go through. There was no miracle, easy, one step to boobs option. 

Interestingly, no one ever gave not doing reconstruction as an option. It was assumed that's what I wanted. I felt very hurt by this. Doctors, nurses, family members - they all made that assumption. When I said I didn't want to they questioned me and said things like, "young people need reconstruction," and "you can always do it later."  I got "the look."  The plastic surgeon told me that women who delay reconstruction are the best patients because they are just happy to have something. Because it's better than no reconstruction.  Nice. Thanks doc.  Even right before they took me into surgery the surgeon and two nurses told me I could always do it later. Verbatim. Like I didn't know what I was doing. At follow up appointments medical professionals told me that again. The oncologist asked, although I do feel like he asked out of care and concern more than to be pushy or assume. It ticked me off to no end. There are other ways to have boobs after cancer. I always intended to get the breast forms and some mastectomy bras. Just because I didn't choose reconstruction didn't mean I wanted to be flat. Fake is fake, inside or out. 

Once the surgery was over and I looked down to see flat it never freaked me out. I never cried. I never screamed. I was just happy the cancer was out. Even when I got home and took off the bandages it never bothered me. The first time I cried when I got home was when my son was upset I couldn't lay with him at bedtime and that impacted me emotionally more than the loss of da boobs. I felt like I made the right choice. The best part was a week after surgery when the drains came out and I could lay with my little boy at night and snuggle again. That right there is what is important. 

I went and got fitted for some prosthetics and got a good stash of bras. Boy!  What a difference that made. I had been using some batting filled ones that came with the post-op camisole I bought and they just weren't the right shape. When I got the real ones and some pretty bras to go with it I felt like myself again. 

Six weeks after surgery I saw the oncologist and was put on Tamoxifen. When that visit was over I went to the car and cried out of relief. For me it was the end of the first phase. I could get out of purely survival mode and really realize what happened. Everything started to sink in. 

90% of the time I'm fine with my decision not to do reconstruction. The other 10% I contimplate implants.  I think this is a normal part of adjusting. This past week I've really been considering it more than before but I believe that the grief is starting to hit and it's more about me losing my breasts than me trying to replace them. When I stop and think about everything it would entail to get them, I still don't feel they are right for me.  I look at pictures and think to myself, probably not for me.  I miss having MY breasts. I don't really know if I would be any happier with implants over the prosthetics I wear. They won't look the same, feel the same, or be the same as what I had. So for now I continue on with the grief process and letting my emotions go where they need to go. I know acceptance is the final phase and I am far from it, and I refuse to jump into something now to try and ease the pain and regret it later, especially when I am not 100% sure that it would actually make the grieving any easier.  Like I said before, they wouldn't be the same anyway. 

Mainly I want women to know it's okay not to have reconstruction done. Don't let anyone push you into it if you don't want it. Be sure to ask what all is involved with the surgeries and what happens 10-15 years down the road so you know what to expect. Ask ask ask. Wearing prosthetics is an option. They make a lot of pretty bras now and have a lot of options. Above all make the decision that is best for you. 

An Overview of My DCIS Diagnosis and Treatment

This post will be my first on my diagnosis and it might seem a little factual.  I have so much to say and I have to break it down into segments, so this one will be your basic overview and timeline of what happened.  Later I'll post in more detail regarding some of the stages and the emotional effect that DCIS had on me.  Ultimately I hope someone who has a breast cancer diagnosis will find this helpful.  I know how scary it can be.

In May of 2015 I went to my annual wellness visit.  I noticed my doctor spent a lot of time in one particular area of my left breast.  I asked her if something was wrong and she let me feel what she felt.  My first thought was, "okay I don't feel a lump."  I told her this and she said I was right, there wasn't a lump but it felt bumpy and it could be a change in the tissue and it was something to monitor.  I asked if we could get it checked out - and that's where this all began.

I went in for the mammogram on May 11.  Anyone who knows me knows I get a little nervous when it comes to doctors and needles and blood.  This was especially scary since it could possibly involve cancer.  The doctor never said this at the exam but in my mind I feared it.  The woman who did the mammogram was incredibly nice and explained everything to me.  I even asked if I could see the images and immediately felt relieved that there was no lump.

"You're right," she said.  "No lumps but there are some microcalcifications and they can be good or bad.  90% of the time they are benign but I will go show the radiologist and see what he wants to do."

So I sat and waited in my little gown very aware of the feeling in the back of my head that said this was that other 10%.  I knew it was for some reason.  She came back and did a magnified view of the area in question.  It was small and to me only looked like a handful of grains of sand grouped together.  After the radiologist looked at the magnified view it was decided I should have a Stereotactic biopsy just to find out for sure what I had.  Looking back I think they knew what it was but of course couldn't say anything without confirming.

On May 13th I had the biopsy done.  Not the most pleasant thing I've had done but the ladies were wonderful and the radiologist did everything as efficiently as he could.  He gave me the speech when it was all done that even if this came back as something people live very long and healthy lives after treatment.  Thanks doc.  Thanks a lot.  That SO helped out my nerves. (<-- Insert sarcasm here.)

The next day I got the call from my doctor at around 4:00 PM that it was DCIS - ductal carcinoma in situ.  I made the comment, "so this isn't a death sentence right?"  She said that it was the opposite - it was very good we found it this early and it's treatable.  I felt like I had the breath knocked out of me.  I have a child and really it doesn't matter what stage you are diagnosed with you go through the same crap, the same fear, the same anxiety, the same Oh-My-God-Am-I-Going-To-Die. More on that later. Her office was going to set me up with a surgeon.  She said the treatment was a lumpectomy.  Okay, that didn't sound too bad.  Still it was surgery and I've always had the fear of being allergic to the anesthesia and dying on the table.  Keep in mind I had my appendix removed four years earlier and everything with that surgery was fine.  The fear was still there.

After everything sinking in a couple of hours later I realized that an angel was watching over me.  It could have been a lot worse.  The circumstances were all just right for this to be diagnosed so early.  I wasn't supposed to have the mammogram yet.  I even was supposed to have my wellness visit in March but with the doctor's scheduling it pushed the appointment to May.  Would she have still felt it back in March?  I don't know.  The surgeon later told me it was there maybe like two months so who knows.  But I know I had someone up high watching over me.  If anything this reaffirmed my faith.

I met with the surgeon the following week and he ordered an MRI to make sure the area of DCIS wasn't bigger than the mammogram showed.  If it was then we had to a mastectomy.  If not, a lumpectomy.  I had to do the MRI THREE EFFING TIMES because the images didn't process the first time, the tech didn't retake all of the photos the second time and so I had to go back a third just to redo the whole series of images again.  Thank goodness that did the trick.  The MRI's were done May 20-22.

The radiologist called the surgeon the night of the 22nd and let him know that it looked like a lumpectomy would cut it (no pun intended) and the surgeon was nice enough to call me the next day (on a Saturday no less) to let me know the verdict.

By that point I was already considering my options.  If I had a mastectomy would I have reconstruction?  I agonized over this.  My initial reaction was no, I would not have reconstruction.  If you remember I mentioned I don't like needles or blood, and there is a lot of that involved in surgeries.  Not to mention the fear of dying on the table so for me having reconstruction was just unnecessary risk.  So that's the way I leaned at that point.

The lumpectomy was scheduled for May 27, which was my grandmother's birthday.  She had passed away in April so I was being dealt two blows in a short amount of time.  I asked her to hold my hand that day if she could.  I fully believe she did.  We arrived at the hospital at 6 AM, and they came to get me around 8:00 AM to put in the guide wire for the surgeon to follow.  The same lady who did the mammogram and who was present at the biopsy came to get me.  She took me to the room with the mammogram equipment and went to check on the radiologist.  When she opened the door I saw him standing right outside, and I saw the look on his face.  She went with him and was gone a while.  I knew.  I knew I wasn't having that lumpectomy that day.  Honestly I never felt like I was going down the right path with that treatment option.  I've had a decent intuition over the years and it was kicking me in the back of my mind saying, this isn't right - a lumpectomy isn't right.

After a good 20 minutes she came back.  I could tell by the look on her face there was a glitch.  She told me that the radiologist wanted to review some things with the surgeon first.  She went and got my husband for me and we waited.  Finally the surgeon came in.

"We have some concern after looking at the MRI that the area is bigger than I can safely get with a lumpectomy.  The safest route is a mastectomy.  If we do a lumpectomy and it's not a clear area we would have to go back in and do it again.  At some point you take too much tissue and you're left with half a breast.  That's why I'm suggesting a mastectomy as the safest route.  It's up to you though."

I choose the mastectomy - and I didn't even blink to tell him to take both breasts even though the DCIS was in only the left breast.  I was determined I wasn't going to be here again in a few years.  I have cancer in my family.  Not breast cancer but prostrate and pancreatic.  It's always scared me to think that I would get some form, and I'll be damned if I was going to leave anything open to chance.

The surgeon and my husband wanted me to talk to a plastic surgeon first before making a decision on reconstruction to be sure I had all of the facts.  They didn't want me rushing into anything.  In my mind I still had no reconstruction as my decision, but I would humor them.  Besides in the long run it would ease my mind to know that I truly did make an informed decision.

To sum up the plastic surgeon visit - implants are not lifetime devices.  Multiple surgeries are required.  For me tissue transfer with some sort of flap surgery wasn't for me.  It seemed like a lot to go through for boobs.  I wanted to be back to caring for my kiddo as fast as I could and getting cut up in multiple areas just seemed overkill - for me anyway.  I totally get why women choose reconstruction believe me.  More on that in another post.  So after a LOT of consideration the visit to the plastic surgeon only confirmed my initial reaction - no reconstruction.  My husband was wonderful and said it was my body and my decision and he was fine with whatever I chose.  I love that man.

The surgeon had gone on vacation and the bilateral mastectomy surgery wasn't scheduled until June 17.  I was assured by two other surgeons in his group that it was okay to wait in my situation.  DCIS is early and it wasn't against my chest wall or near any lymph nodes so two weeks wasn't going to make a difference on it getting any worse.  Let me tell you despite hearing medical professionals telling you this you still feel like you have a ticking time bomb strapped to you.  I was so ready to get it done and over and the cancer removed.

Surgery day came and luckily they came and got me early.  The surgery took around an hour and a half or so and I had to wait on the lymph nodes to be tested before knowing for sure.  The surgeon said they looked fine and he wasn't concerned about it.  He was right - they came back fine.  I saw the oncologist on July 30 and it was decided that I should take Tamoxifen (a hormone inhibitor) for five years.  Other than that I have no other treatment.  I do consider myself lucky.  Lucky because I was able to have this caught early.  Lucky because at 35 years old I wasn't supposed to have a mammogram yet.  Lucky because hopefully this means I can see my child grow up and become an awesome person.

I'll go into more detail on feelings and reactions in future blog posts.  I just wanted to get something out there for now on the general time frame and results for people looking for help or someone to relate to.  I hope that this helps someone.  Am I happy with my choice to not have reconstruction?  Yes.  Do I second guess myself sometimes?  Yes.  95% of the time I'm good.  5% I wonder if I should have gotten the implants but mainly it's for convenience not because I don't like how I look.  I'll post another blog entry on that at another date.

Disclaimer - I am not a medical professional.  By no means am I suggesting to anyone on what to do for their treatment.  I just want my story out there so that perhaps someone might have someone else to relate to.  I know I Googled the heck out of DCIS, recon or no recon, pictures, etc. when I was making my decisions and trying to deal emotionally with the diagnosis.  Hopefully I can give back to the community with this blog.