Capsular Contracture and Implant Exercises

There I was, sitting on my bed minding my own business.   I thought, hey, now is a good time to do my implant exercises.  So, I grabbed my breasts and pushed them up and in and held them in position.  It was just at that moment that my daughter walked in and asked, "what in the heck are you doing?"  I couldn't help but laugh and say, "Exercises!  Why?  Something strange?"

I'm four weeks post op and I'm well on my way with my regular stretching exercises, but there's another exercise I do that many don't know about.  It's for the implants.  While having a final follow up Skype chat with Dr. Chrysopoulo, we discussed the healing process, what to look forward to during further recovery, easing back into exercise programs and something called capsular contracture.  Capsular contracture is when the sub muscular pocket that is formed around the implant tightens due to scar tissue, contracting the implant, thus making it feel, and look, firm. This is not comfortable nor is it attractive.  This can happen to anyone, perfect surgery or not.  It has been noted to happen in some cases where blood has collected around the implant or when a low grade infection infection has occurred.  Serious cases need surgery to remove the scar tissue and set the implant free.

Dr. C told me I needed to start doing an exercise of sorts, daily, which would hopefully prevent this capsular contracture from happening.  He described the process as pushing the implants up towards the collar bone and holding in place for about 20 seconds.  I'm essentially sliding them up within the pocket that was created during surgery.  It was the visual in my head that made me respond with, "so you want me to make awesome cleavage like a Victoria's Secret model?"  To which he replied, "yes, exactly."  See, now you have the visual too!  Doing this exercise is supposed to help keep the capsule larger than the implant itself, therefore letting the implant settle more naturally and remain free from restraint.

http://www.enhancementscosmeticsurgery.com/wp-content/uploads/2014/11/capular-contracture.png

In doing some research, I learned a little additional information regarding implants, exercise and capsular contracture.  Apparently this is only done with smooth, non-textured and non-teardrop shaped implants.  Reason being is the other types of implants are not meant to be moved, they are meant to adhere to the tissue around them, staying in one position and therefore creating a natural look.  Otherwise, you might flip that teardrop and then what happens!  Some doctors even say that having Alloderm, the piece of cadaver tissue that acts like a hammock supporting the implants, may help in avoiding the capsular contracture.  Here's why.  In order to have a full capsular contracture, the scar tissue has to form a complete "circle" around the implant, meeting all the way around.  This layer of Alloderm prevents the scar tissue from building, like a force field.  So, I'm two for two right now...smooth round implants and Alloderm.  

I started this exercise about a week ago, it doesn't hurt at all, and I'll continue doing it for up to a year during the healing process.  Its easy to do, doesn't take much time and in the long run, will hopefully help my implants look more and more natural over time.  

One Month Post Op

Yes, I'm going to be like a new mom again, one who posts updates of her babies daily for the first week, then weekly up to "four weeks old", then does the monthly photos and updates until "24 months old" (not 2 years), then yearly.  Why?  Because when I search the internet, these are the things I look for.  How was someone doing each week immediately following surgery?  What is it like and what changes happen as the months go by?  If I want to know, surely someone out there wants to know too.  Think of me as your What to Expect When You're Expecting Healing mama. So here you go, here's what life is like for me one month post op.

Sleeping

I put this one first because its my biggest pet peeve right now.  I mean its 3:30 am and here I am, wide awake and writing.  I WANT TO SLEEP NORMALLY AGAIN.  There, its out there into the universe.  Lets hope the universe responds kindly.  Seriously though, here we are, four weeks out, and I'm still having to sleep on my back.  I'm not a back sleeper, at all.  I find myself tossing and turning all night because I just can't get comfortable.  Even with pillows...they just make me hot.  I've been given permission to slightly lean to the side, propping my breast with a soft pillow so that nothing firm will press on the Alloderm and in turn weaken it, but that's not doing it for me either.  In the beginning I was sleeping just fine due to the medications.  But now, medicine free, I sleep for maybe five hours and then I'm wide awake.  Luckily, there's a whole other side of the world awake on Twitter.

By Andr.V.S. (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)],
via Wikimedia Commons

Breasts

You would think this would have been number one on my list, but seriously, if you knew how much I loved sleep, you'd understand. At one month post op, everyone pretty much assumes I'm back to normal activity, living life as before and beyond the pain.  Clearing all that up for you now, I'm not.  Am I happy?  Yes!  Am I healing?  Yes!  Am I grateful?  Yes!  But reality is, there's still a lot I'm going through with my new breasts.  Yes, they are pretty flawless, they are damaged breast tissue free and they look darn good in my summer dresses, but we are still having a love-hate relationship.

• Nipples- They feel like the painful nipples of a newly breast feeding mother.  If anything or anyone touches them...  Even my bra gliding against them the wrong way sends hair raising sensations down my spine.  Yes, yes, I'm told by my nurse and surgeon that this is a good thing, as it means sensation is coming back, but WOW!

• Implants- At this stage, they are so much softer than they were the first couple weeks.  I can grab them and gently squeeze them...molding them to my grip.  I say that because I imagined having these stiff mounds on my chest that wouldn't move.  However, there are two scenarios that are strange to feel and I'm still getting used to.  1) putting my arms at my sides.  While my breasts are by no means huge, it feels strange to feel the edges of my breasts when I put my arms at my sides...and they don't move out of the way.  2) when I've been lying down for a while and then get up, the weight of everything shifts with gravity which causes me to grab my breasts and hold them for a minute...letting everything settle.  The good news is that my surgeon told me they'll never "pop out" of place if I bend over or reach for something quickly.  He knows me well...me and my irrational thoughts.

• Muscles- I'm not what you would call a fitness buff.  I don't really like working out.  I go in cycles, getting really into some exercise routine and then...nothing.  Let's just say the 'nothing' phase has lasted longer than it should.  That being said, my muscles at the top and sides of my breasts feel like someone just made me do 50 push-ups and then told me not to stretch.  Feel it?  They are pretty sore and tight.  Because they are tight, my range of motion is not great, so when I suddenly reach for something or try to go back to my normal daily routines, OUCH!  You can still forget those repetitive motions at this point, which, by the way, includes shaving my legs.  That causes pain for me.  

• Cording- Ok, so this is new to me.  I'm not sure if I have it yet, but in speaking with my nurse, we're keeping an eye on the possibility.  Cording is, in the lovely words of nurse Denise, "scar tissue or bands that form after a mastectomy. You are usually able to see and feel the rope-like band starting from the axillary area or right near it. It can extend to the elbow along the inner arm and cause pain or discomfort when trying to stretch the arm. Typically physical therapy is required to “break” the bands up. You might look into a physical therapist that specializes in or is familiar with post-mastectomy patients."  Let's hope this is not what I'm experiencing, and I'll bypass it, but I think its important for others to know its a possibility.  Here's a video demonstrating what cording looks like.

• Scars- There is a light at the end of this tunnel.  My surgical tape finally came off today in the shower.   My incisions look amazing, thanks to the precision of my microsurgeon Dr. Chrysopoulo!  They are clean, they are light pink and they are doing beautifully.  I also got permission to start applying InviCible cream to them to start the scar healing process.  I'm supposed to be massaging the scar so that it will hopefully soften up as well as lay nicely in the skin, not protrude out.  There is zero pain where my scars are, but I think that's due to being mostly numb on the underside of my breasts.

• Sensation- at this point, not a lot has changed from when I described them in How Do They Feel? 

By J.C. Stadler and Piercy Roberts After Adam Buck (Scanned by H. Churchyard)
[Public domain], via Wikimedia Commons

Exercises

About two to three weeks post mastectomy, depending on your surgery and healing, you'll be asked to do exercises to stretch your muscles and prevent the stiffening and scar tissue build up.  These are standard stretching exercises recommended to women post mastectomy, and are relatively easy to do.  That being said, my surgeon was not kidding when he said to approach every exercise as if its my first time.  Don't think you're going to hop back into yoga, pilates or even these simple to do stretches.  Your range of motion is different, your muscles are healing and you will need to take your time.  Be kind to yourself.

Medicine

One month out, I'm still on some Advil during the day, but cautious of not irritating my stomach by taking too much, and I still occasionally take 1/2  a muscle relaxer at night as my muscles are tight by the end of the day, and quite achy.  Other than that, the anxiety meds and pain killers are shelved.  

Emotions (updated 12 hrs after original post)

I thought I was past the highs and lows of recovery.  I'm a month out, I've been off the meds and I was getting back to life just fine.  But today, for whatever reason why, the emotions came flooding back.  My breasts are sore, I woke up at 3:30am to write this blog post and haven't slept since and at 7:30pm tonight, bam!  The tears started flowing.  I had been experiencing a lot of muscle pain throughout the day and was getting frustrated.  I put high expectations on myself, no secret, and I think I feel that I should be doing better than I am.  As I was getting ready for bed tonight and rubbing my scars with treatment cream, I began to cry.  I hated feeling the thickness of the scar under the skin...how it rippled under my fingers.  I'm not good with blood, surgical photos and creepy sensations in my body.  This was one of them.  It was all just too much and I broke down.  At this point, I don't know if its considered normal to be so emotional.  Just this morning I was so thrilled to get dressed with confidence and assurance, that I turned to my husband and told him I didn't have to hate my breasts anymore, that I could love them.  My fears were taken away.  And then an emotional swing the other way tonight...tears.  All I can say is let is all out when it happens, talk to someone and acknowledge it.

So, there you have it.  This is what its like one month post op.  Not terrible, but by no means back to normal.  It really is a process.  I wish writing this put me back into a state of sleeping bliss.  Lets go see who's on Twitter.  Night!

I Didn't Know What to Say

I often see articles written about supporting friends through mastectomies, and one of the most covered topics is "What Do I Say?"  I never understood this until now.  I had friends and acquaintances I thought I'd hear from, or hoped I hear from, but never did throughout my surgery and recovery.  I get it, kinda.  It's uncomfortable.   You don't want say anything offensive, you don't want to trivialize it or you just plain don't know what to say.  It's especially tough for guys.  Its not easy talking about breasts, or losing them, with your guy friends, although some really came through and I love them for it.   I've been in that uncomfortable situation of not knowing what to say.  I didn't know what to say to my own mother.  I was young.  We didn't talk about boobs.  Perhaps that's why I'm so overly open with my own children...and the world, talking about breasts.  I don't want people to feel awkward.  I'm open with all of you because I want to help bridge the gap.  In speaking to a friend of mine this morning, she said something to me that hit the nail on the head...

I can imagine it can be very isolating, others can sympathize but not really understand what you are going through.

Some things can hurt when said, and we know you don't mean harm by saying them, because after all, you're our friends, but they might.  I think people say these things because they are trying to lighten up the situation, they want to connect somehow, they honestly don't know what to do or say, or they're nervous.  So, they say them.  Now, that being said, I talk differently to my very close friends than I do my acquaintances, so I give them a little more liberty to be candid with me.   They talk openly about the new "girls" and I know they mean it with all sincerity and love.   However, these are things I repeatedly found in blog after blog of women going through mastectomies that hurt them.  These women ask that people don't say:

• things like commenting on a great boob job as a result of the surgery, or saying they can totally relate because they've had a boob job.  Don't say these things, at least not first.  You might have a close friend who is totally OK with this (I have close friends who were able to do this), but if you're not that close, let HER bring it up or say it first.  Not you.  Let her ask you about your boob job, implants or crack the first comment about her new breasts. 
• things like "don't worry."  We're worried, we've been worrying since we found out we were BRCA+ or since we made the decision to have surgery due to cancer.  Of course we're going to worry.  Its uncharted territory for us, even though MANY woman have gone through it before us and MANY women will go through it after us.  We only know ourselves and our own journey. So yes, we're going to worry.
• things like "you'll be fine."  We know we'll recover from the surgery, eventually, but it's a long journey of mental recovery, not just physical.  Yes, we will get through it, but "you'll be fine" kinda takes the whole journey away from us. 
• things like "can I see them?" or "can I touch them?"  Trust me, when we're ready, if we're ever ready, to share our new breasts with you, we'll offer it up first.  At this point, for me, it becomes an educational tool, but one that I get to share on my own terms.  You'll know who you are.
• things like "its over now, you can move on," or "why are you still upset?"  Its a journey.  Mentally and physically.  We have good days and we have bad days.  We have a constant reminder in the mirror every time we shower, get dressed and try to make a bra fit.  We might have to have revision surgeries down the road, shopping for clothes changes and our breasts are still settling for the first year.  So, no, its not over.  I'm four weeks out and people assume I'm healed and back to normal.  Nope, it takes time.

By Paul (Flickr: Happy Valentines Day) [CC BY 2.0
(http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

So here's the thing.  There's no right thing to say that will fit every individual.  There's no magical phrase that is going to take away all the fears of a person going through this.  You can't change it and you can't take it away.  But, there are things you can ask or say that will show us you're by our side.  You know your friend best.  Here are some common things I found among blogs.  Things like:

• ask why we're having a particular type of surgery vs. another.  There are so many options these days, we want to help others understand.  We want to educate.  We want to hopefully save someone else's life, while feeling like a woman again.
• tell us how you can help us during the recovery.  We don't always know how to ask for help, and many of us won't.  There's too many other things on our minds that we're taking care of.  If you can't talk about it or are uncomfortable, send a "I'm thinking of you" card or even just flowers with no note at all.  We'll get it.  Tell our family which day you'll bring dinner or tend the kids.  Give a day off to the caregiver.  You be the decision maker.   We know that these gestures come from the heart when you don't know what else to do or say.
• don't feel like you have to have answers or a comeback to everything we say.  Let us just open up and spill it all out if it does happen.  When my daughter found me sobbing one night, she simply wrapped her arms around me and said, "I hope you feel better soon."  That was perfect.  She didn't try to fix me, she didn't tell me to stop crying, and she didn't tell me it was going to be OK.  She just let me be.  Acknowledge our emotions, don't try to divert them or brush them off.
• ask how you can help with or join us in our back to exercise routine.  When you've had a mastectomy, you have to treat any exercise as if its the first time all over again.  We have to go slowly, letting our muscles stretch, work on expanding our range of motion and deal with the pain of scar tissue.  Many go through physical therapy.  This is something many friends don't know about recovery.  

I'm blessed to have a husband who knew exactly what to do for me.  Not only did he take care of me every step of the way, he made an inspirational video for me to watch the night before my surgery.  What I LOVED the most was that it was friends and acquaintances sharing stories of my strengths, what they liked about me, simply being cheerleaders, telling me they were thinking of me and some even shared some laughter (knowing our relationship was tight enough).  No advice and no one trying to fix me.  I love this video.  It was perfect.

In the end, don't worry about saying the wrong thing, just make sure to let them know you are there for them and thinking of them.  Let them know in some way that you are a part of their support network as they go through all of this.  Like I said, you know your relationship best.  BFFs sometimes have a little more leeway with comments than acquaintances so, but we want to hear from all of you.  We love you.

Initial Oophorectomy Consult

Welcome to my first post regarding my next journey...an oophorectomy.  What in the heck is an oophorectomy you might ask?  It's the removal of the ovaries to guard against my predisposition towards ovarian cancer, for which BRCA1 put me at high risk.  I'm technically having a prophylactic bilateral salpingo-oophorectomy.  That's a mouthful for,  I'm having both ovaries and both fallopian tubes removed.  So thanks, once again, to that not-so-awesome defective BRCA1 gene.  Take my breasts, take my ovaries and tubes, and while you're at it, put me into early menopause.  

So why remove my ovaries and tubes when I've already removed my breasts?  When you're BRCA1+, you're at an estimated 87% risk for breast cancer and 50% risk of ovarian cancer.  I think I'm pretty well covered now for NOT developing breast cancer since having the mastectomy, so we're moving on to making sure I don't get ovarian cancer.  Removing my ovaries and tubes takes me down to a 1.4% chance of getting ovarian cancer.  I'll take it.  When you've lived a life knee-deep in cancer stories, you do what you can to try and avoid it.  I'm lucky, I get to prevent it, hopefully.  

By Bfpage (Own work) [CC BY-SA 4.0
(http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

Today was my second consult with my gynecologist, more in-depth than my initial consult in May.  She rocks.  If you watch The Mindy Project, picture my GYN as Mindy.  She's funny, she comfortable and she makes this whole "serious conversation" palatable.  I think I'm in good hands, once again, thanks this time to Dr. Tucker, my Singapore geneticist.  The only downfall, she's not on Twitter, but I'll work on that.  

When I walked into her office this time, she was shocked at how good I appeared after having my mastectomy.  She knew I was four weeks out and expected me to be far worse off than I was.  I'm beginning to wonder if East vs. West, when it comes to surgery, is really as different as it seems.  Two doctors now, here in Singapore, have been surprised by my surgical recovery and overall pleasing aesthetics.  

After raving about my recovery, she reviewed the previous ultrasound scan she performed on me as well as my CA-125 blood test, which measures the amount of protein in my blood, monitoring ovarian cancer.  Everything looked great.  She then dove right into the diagram drawing and explaining of the next step, the prophylactic bilateral salpingo-oophorectomy, planned for December 2015.  Once again, I have five months to wait for surgery, thinking, researching, over analyzing and thinking some more.  

She drew an abdomen and proceeded to draw three dots...one on my belly button, and one above each ovary.  These would be the surgical sites, with a half cm size port in my belly button, and all would be done laparoscopically under general anesthesia.  The ovaries and tubes will be pulled through my belly button to remove them.  I know, TMI, but I'm the one going through it, and you chose to read this. This all means more scars, however, I've got my InviCible cream from my mastectomy that I plan on using to keep the scaring to a minimum.  I'll spend the night in the hospital and go home the next day to recover over the next couple weeks.  This will be a much less invasive surgery, and will only take a little over an hour.

While its fantastic this surgery is available to me, the downside is that I'll be thrown into surgical menopause within the 24hrs after surgery.  According to my GYN, our plan is to treat side effects without hormones, using other methods.  We've practiced a lot of natural remedies in our household since I became pregnant with our first child eleven years ago, so going hormone-free doesn't bother me...for the time being.  If I need it, I need it.  We'll see when it happens.

So, what are the effects of menopause that I could experience?  Well, at one point she said, "some women want to swing from chandeliers and scream at how uncomfortable they are throughout the mood swings and hot flashes."  She then looked at me, laughed and said, "Heather, knowing you and seeing you, I just can't picture you doing any of this."  Ha ha ha, little does she know how emotional I am.  So yes, hot flashes and mood swings are a large part of it.

However, she didn't linger on the hot flashes and mood swings, her major concerns and what she monitors the most post op, are the heart and bone density.  I'll have a baseline bone density test in the next couple weeks,  and in November, another CA-125 protein blood check, as well as a cholesterol check and a baseline EKG, a month before the surgery.  After one year, we'll do them again, making sure my heart is staying strong, as well as my bones.  I'll be required to do weight bearing exercises to force my bones to build strength and be encouraged to eat as many calcium rich foods as possible.  I found this all very interesting as I had never even heard the heart brought up in conversations regarding oophorectomies.  

So, there you have it.  We're on another countdown to yet another surgery.  Cheers to December!