11 Years Later: Checking In and Reconsidering

It's been a long time since I've written here. Almost 11 years, actually. For a while, that silence felt right. Things were stable. My health was solid. My bloodwork came back fine year after year. My yearly mammograms and ultrasounds looked good. I was living my life, raising my kids, and didn't have much to report that felt urgent or necessary to share.

But here's what I didn't talk about: the small things. The things that pile up quietly in the background.

About six years ago, I was diagnosed with fibromyalgia. Two years ago, I developed muscular fasciculations in both my legs. Since my oophorectomy, I haven't been able to sleep through a single night without over-the-counter medication. I've been dealing with burning at my chest bone, on and off, for longer than I want to admit. There's brain fog. There's an overstimulated nervous system that keeps feeding back into itself. These aren't huge, dramatic health crises. They're just there. Persistent. Nagging.

And I've been asking myself a question I never really articulated out loud before: Are these things just what happens when you get older? Or are they connected to something bigger?

This November, I'm turning 50. It's a milestone that's been sitting with me for a while. I lost my mother to breast cancer when I was 13, and every birthday past the age she was when she died feels significant. It makes you think about your choices. About your body. About whether the decisions you made years ago (that were 100% right at the time) are still serving you well.

Eleven years ago, I had my implants placed after my mastectomy. That was the right choice for me at the time. It was the easiest choice for recovery with three very young kids and an International flight from Singapore to Texas. I felt good about it. And for the most part, I still do. But at 11 years, which is around the timeframe when implant replacement becomes a consideration, I'm finding myself wondering about things. Questioning things. Reconsidering options I said no to years ago.

I have a surgery date of April 9th scheduled at this point. A surgery to have an implant exchange. However, I have also have a consultation scheduled for October to ask some questions and perhaps get some more testing done. Not to make a concrete decision yet, but to ask more questions. To get informed. To figure out what my body might actually need. Do openly discuss whether or not I potentially have BII (Breast Implant Illness) and if implants are the right next step.

And I think this matters. I think it matters because too many of us are living with small, persistent symptoms that we chalk up to aging or stress or just the way things are. We don't talk about them. We don't ask questions. We just keep going.

But I'm going to talk about it. I always do! And I'm going to figure it out. And I'll share what I learn along the way.

This is the beginning of a new chapter for my blog. Not the end of the old story, but a new part of it. Stick around.

When She Turned 18: Her Choice, Her Journey

My oldest daughter turned 18 this year. And when she did, she asked for genetic testing.

I didn't push her toward it. She came to me and said she wanted to do it. She's grown up knowing my story. She's been there for appointments, surgeries, conversations about risk. She understands what BRCA means. And she wanted answers about her own genetic status.

She had already done 23andMe, but like many people, she wanted confirmation. 23andMe itself recommends verifying results with your doctor. For her, that mattered. She wanted concrete answers, not just a home test result sitting in her mind.

We were referred to my incredible gynecologist, Dr. Lucas Minig, who connected us with Dr. Vicente Guillem Porta at Unidad de Oncologia Medica for a genetic consultation. The process was straightforward. The doctors were kind, thorough, and genuinely good at what they do. They prescribed bloodwork, we went to the lab, and we waited.

The waiting felt long. Not in an anxious, soul-crushing way, but more like the "are we there yet?" feeling on a long car ride with kids. She just wanted her results back. She was ready to know.

And now she does. She has her answers. Concrete, confirmed results. And she feels good about that. There's something powerful about a young person taking charge of her own health, asking the questions that matter to her, and getting the clarity she needs to move forward.

That's what matters at 18. Having agency. Having answers. Knowing that whatever comes next, she's prepared to face it.

I highly recommend speaking to a geneticist before any testing takes place. My family has been around these conversations since they were itty bitty. We've had lots of talks. They knew what they wanted, and they knew the consequences of knowing. If your children haven't had this history, seeing a geneticist and speaking with one thoroughly is a must. Don't rush this process for them.

A Follow-Up Conversation: Six Years Later

Back in 2018, I did an interview with Grey Genetics about my BRCA1 journey, losing my mother to breast cancer at 13, and the preventive choices I made for my own life. That conversation was important. It helped me process my story and, I hope, gave other people walking a similar path some perspective on what it means to be a previvor.

Six years later, I sat down with them again for a follow-up. A lot has changed. My kids have grown from 10, 12, and 13 into young adults at 15, 17, and 19. And they all decided they wanted to do genetic testing through 23andMe.

This wasn't a decision I pushed them toward. They came to it themselves. Curious about science. About health. About understanding their own genetic predispositions. They know my story inside and out. They've been by my side through every appointment, every surgery, every conversation about risk and choice. We've always been open and honest about what BRCA means for our family.

But I want to be clear about something: I'm not sharing their results on this blog. That's their story to tell if and when they choose to.

What matters here is understanding why I won't share those results. The truth is, genetic testing outcomes carry real weight no matter which way they go. If a child tests positive for BRCA, suddenly they're facing the same decisions I faced at their age. The worry. The choices about surgery, about timing, about their future. They have to figure out what prevention looks like for them, just like I did. That's a lot to carry, and it's deeply personal.

But a negative result isn't simple either. I've seen the guilt that can come with it. The "why not me?" feeling when a sibling carries the mutation and you don't. Or the complicated relief mixed with worry for someone you love. And if results are different across siblings, there's this new dynamic to navigate. One child worried about their future, another relieved but maybe feeling guilty about that relief. It changes family conversations in ways that are hard to predict.

My kids understand all of this. They were prepared for whatever the results would be. But preparing for something and actually living with the outcome are two different things. Those are their feelings to process, their choice to share or not share. What I can tell you is that we're talking about it openly as a family, supporting each other, and taking it one day at a time.

The full conversation covers so much more than I can fit here. If you want to hear directly about this next chapter, the full interview is available on the Grey Genetics podcast.

You can listen here: Spotify or Grey Genetics website

When Dad Undergoes BRCA Testing

* UPDATE: I am negative for the BRCA gene.

Breast Cancer Awareness Month means a great deal in our house. It’s not just another reason to re-post something on Social Media and forget about it. Here’s why. 

My wife, Heather, lost her Mother to cancer. Susan was 41, and Heather was only 13. Heather’s grandmother also had cancer in her lifetime, and if you’ve read Heather’s blog and social media posts, you’ll know about the elective, preventive measures she’s taken to reduce her risk. She has also written two children’s books based off the conversations we’ve had with our own kids. The goal is to help other kids who might be going through the same issues and having the same questions. 

I’m so proud of the active stance Heather takes related to matters relating to breast cancer. She gets herself out there and tries to help who she can by sharing her story. She uses social media, blogs, shows up as a guest on podcasts and video interviews. She really walks the talk. So, what can I do to show my support this October? Well, I decided to get tested myself. After all, my paternal grandmother died of cancer, and both my father and his only brother have dealt with prostate cancer themselves. So today, I spit in a test tube and my doctor will ship my DNA off for testing for BRCA1 and BRCA2. 

Genetic testing isn’t new to our family. Heather was tested for the BRCA mutation years ago as was her Grandmother while she was still alive. Fast forward to last year, I myself was tested (via 23andMe) in search for explanations regarding my own health. I learned a few things related to my own health, such as a genetic variant in the MTHFR gene which won’t allow my body to process folic acid the same way “normal” people do. But I digress. 

This isn’t just a test for how my body metabolizes a B Vitamin. We’re talking about looking for a predisposition to deadly disease. I must admit that I’m a little nervous. However, I’ve always preferred knowing. I’m the guy who would rather people be honest and upfront with me now, even if potentially difficult to accept, to avoid hurt feelings later. I’d rather know, and as the G.I. Joe series told me when I was a kid, “Knowing is half the battle!” Go Joe.

Oddly, the anxiety I have is from what the results means to those around me. My wife has already been through so much. Because she’s positive for the BRCA1 mutation, she already worries about the 50% chance each of our kids carries that same mutation. What happens if I, too, have that mutation?  What about any of the other 30 genes that for which Colors tests? I really don’t want her to stress even more, but I also know she’s happy she found out. And of course, we’ve discussed this, so I’m confident she’ll be okay.

What about telling my kids? Yes, I want to know, but do I share my results with our children? They already have some burden knowing that they have increased risk. At 10, 12 and 14 years old, are they ready for the additional weight on their little shoulders of knowing there could be others? We’ve asked about BRCA and whether they would want to know, and when. Two of them want to know. One, the youngest, doesn’t want to know her own results. The good news is that they are all willing to talk about it. At least we’re talking about it.

Then there’s my only sibling; my brother. Obviously he potentially carries any mutation or variant that I carry since it would have been passed from one of our parents, and he also has three kids of his own. The weight of this decision spreads across the branches of the family tree. 

Lastly, something my wife hasn’t experienced herself as her parents died many years before genetic testing was available; the guilt my parents could carry from knowing it’s passed from them. Not that they should feel guilty, of course. It’s nobody’s fault. If we worry about passing on “broken” genes we’ll stop populating Earth altogether. Probably not a good choice. However, I already know that it’s difficult to know that my son has the same MTHFR variant as me, and I can’t help but feel some responsibility. 

Occasionally this Winston Churchill quote surfaces;

“The truth is incontrovertible. Malice may attack it, ignorance may deride it, but in the end, there it is.”  

It means we can’t deny truth, whether we choose to know it or not. Facts don’t discriminate. Sometimes we fool ourselves into thinking ignorance is bliss, but the fact is that ignorance can harm, or even kill us. 

Truth empowers us. It allows us to take meaningful action, even if at first it hurts.

Heather and I made the decision to KNOW all those years ago so that she could do everything in her power to live a long  life with our kids, something her mom and dad were denied. I’m sure that they would have done exactly what Heather has done; they would have taken every measure available to them to extend their own lives. It goes without saying that Heather wants to be there for every graduation ceremony, wedding, and someday the birth of our grandchildren. So do I. And if I can be given information on how to increase those odds, I’m game. 

Another important thing for me, and my advice to anybody making these choices, is to seek genetic counseling. As I read the Color Genomics consent form this morning (I know, who ACTUALLY reads those?), I noted that they offer genetic counseling at no extra cost. This is a huge bonus in my opinion. My doctor provides great counsel in the context of how we can use it to holistically address my health, but I will absolutely contact Color and take advantage of that genetic counseling service. Our BRCA journey started with an amazing team of counselors and physicians from Huntsman Cancer Institute in Salt Lake City, Utah. The team there, over 13 years ago now, set the stage for taking an informed approach to all we do. They helped us navigate considerations that we hadn’t thought about. These thought provoking discussions have helped us better manage our own expectations and those of our loved ones. 

So for now I’ll wait for my results and consider these questions with my wife. Until then, I’ll be satisfied that “knowing” is in my future, and for me, knowing is half the battle. 

Losing My Mother, Previving For My Children

Thank you to Grey Genetics and Patient Stories for having me on to discuss my journey with BRCA and surgery, but more importantly, for allowing me to discuss my children, who were/are a big part of all the decisions I made along the way.

Please click the image below to hear this podcast.

Show notes from Grey Genetics

At just 13, Heather lost her mother to breast cancer. Fifteen years later, a mother herself, Heather had genetic testing done and learned that she carried a mutation in a BRCA gene. Heather shares her experience as a previvor–from genetic counseling to finding the right doctors to her continued involvement in the BRCA community and the many changes she’s witnessed since she was tested in 2005.

Interview Reference Points: 

Heather learns that she carries a BRCA1 mutation @ 1:20

Making major medical decisions and finding the right doctors @ 7:54

Heather’s children’s books @ 19:59

Heather remembers her mother @ 22:19

Heather’s surveillance today and memories of scanxiety @ 27:24

The Breast Advocate app @ 29:14

Life after an oophorectomy @ 31:30 

Heather’s children’s and their BRCA risks @ 36:07

BRCA resources: then and now and the shift toward shared decision making @ 41:00

Heather’s advice to individuals considering genetic testing @ 43:35

Heather’s advice to individuals looking for the right doctors @ 45:08

My BRCA Story (Heather’s blog)

The Breast Advocate app

Breast Reconstruction Resources:

Terri Coutee on Twitter: @6state

The Diep C Foundation

The Diep C Journey Facebook Group

Heather’s books on Amazon:

Why is Mommy Having Surgery? She Looks OK to Me: For families with BRCA risk and undergoing prophylactic surgery and implant reconstruction

This Much I Know

Long Term Surveillance...Yes or No

This past week, I was fortunate enough to be asked to sit down for an interview and discuss BRCA as an expat.  One of the questions I was asked focused on the choices out there for women who find out they are BRCA+.  The one I always discuss, is the preventive prophylactic mastectomy, because, well, I had one and that was the topic everyone was curious about!  I didn't focus as much on the 10 years I spent doing surveillance due to having babies and being an expat.  But I feel that needs just as much discussion these days, because there are a lot of women out there who want nothing to do with surgery...just yet.

I look back, and I think about how crazy it is that I went through all this testing and getting my BRCA+ results before the Angelina Jolie Effect.  I had nothing to read online, no one to guide me and certainly no one to see photos of who had had a mastectomy and direct to implant surgery.  What I did have was a great team of doctors and a genetic counselor at Huntsman Cancer Institute in Utah, who were able to talk to me about my options at the time.  

Because I had just had a baby when I got my results, and I fell pregnant again, it was recommended to delay any surgeries for a while, and because I was breast feeding, even my mammograms and MRIs would be delayed.  That was the hardest part for me.  I knew for sure that I was BRCA+, but I still couldn't do anything about it.  I honestly would have had the surgery that day if I could have.  I was on self breast exam surveillance mode, and as soon as I could, I'd begin alternating MRIs and mammograms every six months.

Photo from Pixaby

I finally had my first mammogram in 2007, 2 years after learning I was BRCA+.  That was a long time to keep wondering, will I get cancer before I try to prevent it?  I was done breastfeeding my second child and I hadn't yet fallen pregnant with my third.  I held my breath before, during and after as I waited for results.  Luckily, it was negative.  After my third child was born and I was done breastfeeding, I had my first MRI, in 2009.  I hated every minute of it, and wished more than anything that I would never have to have another one again.  That began my surveillance, on a regular six month cycle, for the next six years.  Why did it take me six more years to finally have surgery?  Because we decided to pick up the family and move to the United Arab Emirates for a teaching position in 2010.

So, there we were, plopping down in the middle of the desert, and the first task I had was to find a new medical team, let alone, how to get a mammogram or MRI under my new, foreign insurance.  It took A LOT of talking, A LOT of doctors offices, and A LOT of panic.  I was an anomaly.  Doctors in the Middle East didn't have much experience with BRCA in 2010.  They honestly didn't know what to do with me.  

Thankfully, persistence paid off, as I found Tawam Hospital in the Emirate of Al Ain, a partner of Johns Hopkins.  Finally, people who knew what I needed.  They set me up on my six month schedule of MRIs and mammograms, and actually told me NOT to have reconstruction surgery in the UAE, as they just weren't proficient in it yet.  I couldn't go back to the States for it, due to insurance, so surveillance it was.  I continued my six month routine, holding my breath before, during and after every scan, developing scanxiety, and just worrying more and more that I was playing with fire.  Would I develop cancer before I could actually do something about it?  It wasn't a way to live.

I felt like a clock was ticking as entered my 30s.  My mother and grandmother were diagnosed by 40.  I was getting closer and closer to that age with each passing year and each passing scan.  From 2010-2014, I lived in the UAE and had no choices for preventive surgery.  But, in 2014, we moved once again, to Singapore.  I found a doctor who referred me to my first MRI and mammogram in Singapore.  Unfortunately, it was my first abnormal scan, they found a cyst.  All that went through my mind was how I waited too long and I shouldn't have done surveillance for so long.  I should have been more proactive.  As I discussed the results of the scan with the doctor, her response was to do a lumpectomy or watch it for six months to see what happens.  WHAT?  I'm BRCA+ and you want to "sit on it"!  I was out of there and began a furious search for an expat doctor.

It was here that I met a phenomenal expat doctor who trained in genetics and oncology at UCLA.  We discussed my recent scan and my history, and he was shocked that I had lasted this long with surveillance.  He was putting wheels in motion after our first meeting.  Luckily, my husband's new insurance covered me in the States, and I could pick the doctor of my dreams and have the surgery I had been waiting for after 10 years.  In 2015, my six month scans were over, and I had my preventive prophylactic mastectomy.

Surveillance isn't for everyone.  As I mentioned earlier, I wished I'd had my surgery right away.  Those 10 years were awful for me.  I hated wondering and not knowing.  I hated taking that risk of waiting.  It's an internal conversation you need to have with yourself, but also with your genetic counselor and doctor.  Do what's right for your situation.  If you have questions and are wondering about how to navigate all this information, please download The Breast Advocate app.

Fat Grafting or No...One of the Most Asked Questions of Me

I had an amazing experience with my surgery, from beginning to end.  I'm one of the ones who truly had a one and done experience.  I chose a phenomenal team at PRMA in San Antonio, using Dr. Chrysopoulo as my surgeon.  Dr. C, as we all affectionately call him, is a microsurgeon and even more importantly, a board certified plastic surgeon skilled in breast reconstruction.  I cannot emphasize enough how important it is to do your research before you settle on a surgeon or surgical team.  You have a choice. You have the right.  You need to choose someone who knows what he/she is doing.  Someone who can connect you to previous patients, someone who can show before and after photos, and most importantly, someone who will listen to YOU.

That being said, I often get asked whether or not I had any fat grafting done after my "one and done" surgery.  The answer is, no.  For me, I feel like my results really couldn't be any better.  Could I be fuller?  Maybe.  Is there animation I wish would be covered?  Slightly.  But is the process worth it?  I don't feel it is, for ME.  Firstly, let me explain what fat grafting is.

File:Breasts.svg - Wikimedia Commons

Fat grafting basically involves taking fat from one part of the body and putting it in another.  In this case, it is most often taken from the stomach or thighs and placed into the breasts via liposuction.  Again, DO YOUR RESEARCH.  You need to make sure the place you're going to does this often, has correct procedures and know how to handle the fat cells properly.  But that's it.  In and out.

So why don't I want to do it?  I don't want to go through any more procedures, I really don't.  But that, on top of the fact that there's no guarantee that the first procedure will stick, added to me thinking it just wasn't worth it.  There's actually a chance that 30-50% of the fat in the first transfer will be reabsorbed by the body.  30-50%!  That's too high for me to think it's worth it.  I'm reading Facebook posts talking about this very thing, weekly.  Women going in for fat grafting, loving the immediate results, but then having reabsorption and having to choose whether to go through another procedure or just leave it alone and be happy with what they have.

So, for those of you who write in and ask if I ever did fat grafting, or why I didn't, there you go.  It was a personal decision and I'm happy with it.  For me, my journey was always about removing my ticking time bombs, not about perfection.  But, I'm pretty damn close, and I'm happy with that.

For answers to questions you might have, check out The Breast Advocate App.

Surgically Induced Menopause...The Truth

Let's be real for a moment.  Honest.  Brutally honest.  Let's talk about menopause.  Not just menopause, but surgically induced menopause.  It's no joke.  I don't write this to scare anyone, I write it to tell you MY journey and things I'VE learned.  May you be blessed enough to have none of these symptoms or only one or two.

Two and a half years ago, I had my bilateral salpingo oophorectomy...that's fancy talk for taking out my ovaries and tubes.  I did it only six months after having my bilateral prophylactic mastectomy with reconstruction.  I figured I'd just get it all done and put it all behind me.  My only goals were 1) to decrease my chances of developing breast or ovarian cancer and 2) doing it before I turned 40, as that's when my mom was diagnosed.

I've talked in previous posts about how well my mastectomy went, how I felt I was better prepared for it, and how calm I was...eerily calm, about the whole thing.  I wasn't attached to my breasts in any way, and really, my surgeon did such an amazing job that I don't miss a single thing about my old breasts.  Now, I will say, I had already had my children and got to breast feed.  So perhaps I'd feel differently if that wasn't the case.  But taking all that into account, I'm extremely happy with the results.

But then there's the oophorectomy.  It scared the crap out of me.  In one of my initial consults, I learned all about the risks of the surgery and all the side effects of losing my ovaries.  To hear words like memory loss, heart disease, bone density, psychological well-being and sexual disfunction...I'm amazed I went through with it.  But we need to keep one thing in mind...we're trying to avoid getting cancer, right?  So the only choice I had was to go through with it.  Now, let's fast forward to today, 2018, two and a half years later.

Ladies, I'm not going to lie.  It pretty much sucks.  Is it doable?  Of course.  Are there drawbacks, absolutely.  Some days my glass is half full and sometimes it's half empty.  But here we are, it is what it is, so I'm just going to let you know how it's all panning out.

Hair

My once thick beautiful hair is now thinning.  I take biotin, collagen, buy shampoos with lavender...anything people suggest, I try.  But alas, it's thinning and I hate it.  The positive side?  I don't have to shave as often anymore because hair, anywhere, barely grows anymore, and the ones that do are soft.  That's a plus, right?  Some say to get your testosterone tested as it can cause male pattern baldness type issues.  My testosterone is AOK, so what's next?

Skin

Awww, say goodbye to  beautiful, supple skin.  The elasticity just isn't the same anymore.  I now look down and see my mom.  Not that mom looked bad!  But come on, when I was little, I thought my mom was old, when really she was only 39...lol.  In addition to the supplements above, I use wonderful lotions...but really, it's just my reality now.  It's a bit more wrinkly and a bit more loose.

HRT

So, I tried to avoid HRT, but the reality is, I couldn't.  My hot flashes were non-stop...8-10 massive whammies during the day alone, ones that caused me to mop myself down with tissues.   So, I started taking progesterone and estrogen.  Ahhhh, the joys of estrogen gel.  Every night, I get my measuring stick, squeeze out my gel, and rub it onto my arm.  I then wait for it to dry while trying to avoid getting it on anything.  It's so sexy.  The hot flashes went down to about 4-6 a day and were more manageable.

Sleep

Once I had my oophorectomy, it's like I woke up to life, and can't go back to sleep.  Sadly, I've tried all the herbal remedies, compounds and HRT, but nothing can get me to sleep...and stay asleep.  So, I take half an over the counter sleeping pill a night which keeps me in a beautiful slumber.  Some doctors recommend taking some anti-depressants for hot flashes which also helps with insomnia, but I'm not sure I'm ready for that.

Weight Gain

Oh, the weight.  It kept coming and coming and coming.  I was at my wit's end!  I hadn't changed my eating habits, I went on HRT to be more hormonally balanced, and yet it was as if my body said, "hey, it is what it is...accept it!."  Ummmm, no.  Wasn't going to.  So, my doctor put me on the keto way of eating and guess what...all the weight melted off.  I haven't stopped, going on over a year now.  It also dramatically reduced my hot flashes to about 2-3 a day and barely noticeable!  I'm guessing the lack of any and all sugar did that, but I'll let a medial genius disprove me.

Memory

I scoffed at the idea that a simple surgery, ok, not simple, but you know what I mean, could change my memory capability.  But wow.  I notice a huge difference as the years go on.  I'm not as mentally sharp.  Sometimes it takes me a bit longer to realize what I'm trying to do in the moment, what I came into the room to do, think of something I was supposed to tell someone...just these blips here and there that are happening more often.  Sometimes I just laugh at myself and say, oops, another oopho brain moment.

Sex

Ok, SOOOOOO personal, but so real.  So, here it goes.  You'll be dry.  That changes everything.  It instills fears.  Fear of pain, fear of lack of pleasure, fear of everything being different.  You can try estrogen insertion pills to help, different gels, whatever will work for you...BUT KEEP AT IT.  Keep trying to find a solution and don't let the fear take over.

Babies

So, I knew I was done having children.  I really did.  Really.  Well, I tell myself that anyway.  But oh my goodness, now that I'm 2.5 years out, something strange is happening to me.  I have baby fever.  I see them and I want them.  I imagine having one.  And then, it sets in.  I can never have a baby that is genetically mine.  And it makes me sad.  Should I have harvested eggs?  Too late now.  I wasn't even thinking about it because I was done having kids.  Honestly, I was done.  I think.

That's it.  That's the joys of having surgically induced menopause.  The gift bestowed upon you for completing a life saving surgery.  Am I thankful for having the opportunity I had to chance my life's course?  Absolutely.  But am I human, experiencing grief, anger and change?  Absolutely.

Three Year Checkup After Mastectomy and Reconstruction

On Saturday, March 17th, the day of Irish luck, I had my three year post mastectomy and reconstruction scans.  While my surgery wasn't until the month of June of 2015, I felt like I needed to get my check up slightly early due to some pain and burning sensations I've been having in my chest.  So, I was lined up for the fully gamut of tests...MRI, mammogram and ultrasound.  Enter stress and anxiety.

MRI

Let's flashback to 2013, which was my last MRI I thought I'd ever have, ever.  It was the beginning of the end when it comes to anxiety and claustrophobia.  I'd had MRI's before, as part of my surveillance, but something about this one was different.  I have no idea why I began to panic inside the tunnels.  Not sure if it was the constant clanking and banging noises, if it was because I was face down and couldn't see for so long, or if I was just plain scared, but I panicked during that one, unable to continue, stopping the scan early, and that was the end of them, or so I thought.  

I'm now 3 years post mastectomy and reconstruction, so it is needed to check on residual tissue as well as the implant integrity.  This time, I took a Xanax 30 minutes before entering the tunnel.  I was positioned and ready in the tunnel, where they then inserted the port for the dye, since I have a high fear of needles.  Well, apparently my vein jumped and she missed, causing a lot of pain, and a mess.  She then tried for my arm, not before saying "you have impossible veins."  Thanks lady.  Way to soothe me.  Anyway, port in, I'm in, we're ready.  I did my breathing exercises while in there, in through the nose, out through the mouth, over and over and over.  I'd feel the panic creep up, and go back to focusing on my breathing.  "Now we're injecting the dye so the next 5-10 min are really important that you don't move."  That did it, I felt trapped.  I had had enough of the banging, clanking and noises, enough of the sensation of dye being released, and my breast bone was killing me.  I was wiggling my toes, I was playing with the panic button in my hand, and I was about to explode.  Just as I grabbed the button to press and end it all, the 45 minute session was done.  

I don't think I'll ever get used to an MRI machine.

 

Mammogram

After the MRI, they walked me to the mammogram room, where I was informed that instead of the normal four images, I would be having eight.  Apparently, once you have implants, you have an additional four which are called 'pinching' images.  This is part of the American Cancer Society's recommended procedure.  Several views must be taken to see both the implant and the tissue.  So, the first four are what you're used to, regular squeeze, two angles on each breast.  

The pinch is different.  They literally squeeze the tissue, pushing the implant back and getting as much tissue forward as possible for the scan, and then take an image of just the tissue.  Imaging can only see 75% of your tissue with an implant in place, so 25% is nearly impossible to see...therefore the pinch.  I will say, the regular image hurt more than the pinching, and overall, I felt more discomfort with these images with implants than without.  

http://www.imaginis.com/mammography/
breast-implant-imaging

http://www.imaginis.com/mammography/
breast-implant-imaging

Ultrasound

After the mammogram, it was time for the ultrasound.  My last ultrasound is the entire reason I finally stopped putting off surgery and ran straight to the doctor for a surgical appointment.  Remember, I was diagnosed with BRCA1 in 2005, but due to having children and moving Internationally, there was never a time or a doctor where I was, where the reconstruction part of the surgery could happen.  In 2015, I went in for my routine mammogram and ultrasound, but this time, they made me wait in the waiting room...for a long time.  They finally said they wanted me to see a breast specialist that day as they found a cyst of some sort.  

Now, where I am, preventive mastectomy is not practiced, it's radical.  So, they opt for a lumpectomy and surveillance.  Yeah, not for me, no more, not happening...off to surgery I go.  I went back to the States for surgery.  I was never going to feel that way again...except, well, at March 17th's appointment.  There I was again, same exact room, lying on the bed, praying and hoping all would be fine.  I don't think anyone can ever truly explain the fears and worry we have going through this for most of our lives.  I started mammograms and ultrasounds in 2005....holding my breath every six months, wondering when I'd hear the C word.  I don't think it ever goes away, as it's now 2018, and I'm just as panicked, even with surgery having happened.

The right breast scan took a long time, and she hovered over one area for a very long time, taking still shots and showing the thermal spots.  She hopped over to the left breast, was done VERY quickly, but went back to the right breast.  At this moment, I really started to worry.  She was taking measurements, taking more still photos and staying in the same spot.  Now my pessimistic side appeared.  I just lay there calmly, thinking she'd say something to me, and after last time, surely they would.  But nothing.  When I asked, she simply said the doctor needs to read it.  

It's now two days later, the 19th, and I'm still waiting for results.  All I can think of is that if it was serious, they wouldn't make me wait this long, right?  

I'll be back with an update as soon as I hear, but for now, send all the good juju vibes you can.

Results are in!

I just got the scans back and they are normal.  There are no sinister or suspicious findings.  3 small right benign breast nodules on ultrasound - all normal.  MRI is normal.

Breast Advocate App

As a patient advocate and a Previvor, I'm so excited to be a part of this announcement of the Breast Advocate App.  

From https://breastadvocateapp.com/

Back in 2004, I had VERY limited options for connecting to research, people and options when I received by BRCA1+ results.  I didn't have the luxury of being able to reach out to an extensive group of doctors and women to ask questions, seek opinions and benefit from shared decision making.  I lacked the knowledge and feeling of empowerment I needed.  I think that is why I waited so long to make any decisions about my high risk surgeries.

In 2013, I joined a group on Facebook called Beyond the Pink Moon, which was, at the time, an International private support group for women who are high risk, Previvors, Survivors and supporters.  The group was amazing in sharing stories, supporting each other and sharing some research based evidence.  It was in this group that I finally found the doctor I'd use for my surgery, because of how many people were talking about his work and their satisfaction.  That was exactly what I needed. 

Fast forward to 2015, when I was finally planning my surgery.  Beyond the Pink Moon had grown into an all encompassing network of patients, supporters and medical professionals, all working together to help anyone and everyone make the best decisions for themselves.  At the same time, my Twitter network was growing and growing, connecting more patients, supporters and medical professionals.  The "Shared Decision Making" network was amazing and becoming a norm, quickly.  No longer were people stuck with one doctor making all the calls and leaving patients with no other information, references, options or input.  It was increasingly evident that patients needed each other, they needed to ask questions from multiple sources and they needed to come to decisions with all the information possible.

Now, I'm so happy to say, that the answer to my one wish during all of this, is coming to fruition.  An App is in development, where everyone can get research based evidence, surgery and reconstruction information and options, expert input from a network of highly regarded doctors (including my very own Dr. Chrysopoulo), and a support network of other people walking in your shoes, no matter what part of the journey you're on.  The amazing part, is while this App is in Beta, YOU have a voice.  Sign up and tell them what YOU want in an App. What would have or will help you in your journey?  This App wants to be the resource for connecting our large community and allowing patients to feel empowered with knowledge and resources, no matter what decision they make.

 from https://breastadvocateapp.com/

Please share this news with anyone and everyone who has been searching for more information, support and community in what can be a very difficult and lonely journey.  

One Year and Seven Months Post Oophorectomy

Things Are Better Than They Were

I'll admit, in my last update post, I was way in over my head.  I was going through the first nine months of hormonal changes brought on by immediate menopause after having my risk-reducing bilateral salpingo-oophorectomy as a follow up to my mastectomy, all due to carrying the BRCA gene.  My head was twirling with information and hot flashes.  Nine months out from surgery, my hot flashes were coming on like wildfire and I was sinking into depression.  There I was, feeling great after my mastectomy journey, so I dove head first into the oophorectomy, thinking I could handle that just as gracefully.  Honestly, the mastectomy was easier for me.  There was surgery, and it was done.  I didn't have to have follow ups or think about medications or hormonal changes, etc.  The package was neat and tidy.  But the oophorectomy, I felt like it had changed my life and there was no turning back.

Hormones

As I mentioned in my previous post, I tossed and turned about taking hormones to help me control the menopause symptoms.  I sought out advice from forums, doctors (yes, more than one), nutritionists and friends.  I felt guilty even thinking about taking hormones after all the surgeries I had to prevent cancer.  I felt guilty because of the voices who said, "no, don't do it."  But, in my head, I kept replaying something my husband taught me long ago, "you have to read both books."  So, I listened to both sides of the argument, I weighed things out to help me have the best quality and LOVE of life, and I decided to do it.  Here's what immediately happened according to my last post:

Ongoing Journal Updates

• Three days after starting HRT, I noticed my hot flashes were getting better.  I went from 8-10 a day, to around 5.

• Five days after starting HRT, my legs cramps are gone.  I can stretch to my hearts content without spasms.

• Six days later, I'm an emotional wreck.  I fear this one because I have to be very careful that I'm not slipping into depression.  Everything is making me cry and I'm feeling quite alone.  I know this is the hormones, because for the last 9 months, I've barely shed a tear since the estrogen was removed from my body.  

Well, needless to say, a lot has changed since that first week of hormones.  After playing with some levels, yes, things got better.  The "depression" state I was feeling started going away within the next week and the hot flashes remained at about 5-6 BIG ones a day, which was an overall improvement for the better.  However, come my one year anniversary, December 2016, I still wasn't happy with how I was feeling nor with how many intense hot flashes I was still having.  I was also gaining weight like I'd never had before, besides pregnancy.  I didn't want to increase any of the estrogen or progesterone I was on (the lowest amount in estrogen gel and progesterone pill form) because that scared me.  So, in January 2017, I took things into my own hands.

Ketogenic Eating

*I am NOT a doctor, I can only tell MY story here.

In January, a friend told me about the Ketogenic way of eating.  I was very intrigued as I had read three things, 1) it helped with weight loss, 2) is was sugar-free which usually translates to cancer free, and 3) you're eating clean.  So, in February, I went to my doctor and expressed my frustration with my weight gain, but wanted to remain on the lowest dose of hormones possible.  So, he sent me to a nutritionist.

Ilona was very heartfelt when she recommended the Ketogenic way of eating for me.  She believed in it for patients like me, and felt that it helped so many areas I was struggling with, not just one.  After she thoroughly explained it to me and how it works, I was sold.  We started that day, as a family.  I rid my house of all sugars and carbs, basically leaving the refrigerator as our main source of food.  All the junk was gone.  We were now a high fat, moderate protein and low carb family, kids and all.

Within a week, yes, 7 days, of strict Keto eating, my hot flashes were almost nonexistent.  I was getting through my days and nights without sweating during work and racing for a tissue.  And six months later, its the same...hot flashes don't bother me anymore like they used to.  And I live in Singapore where its hot and humid!  Within the first month, my energy skyrocketed.  I no longer got the afternoon drag, I could stay up later and I just felt clarity.  My moods stabilized...I felt more in control and happy.  I'm also pleased to say that I have lost an incredible 21lbs.  Ketogenic eating has changed my life, my family's life.  

When I went to my GYN follow up appointment last week, she was shocked with my weight loss, but wasn't surprised by the reduction in hot flashes.  She said carbs and sugar play a big part in hot flashes, added to the cyclical ups and downs of sugar rushes.  She was pleased with the results and decided there's no need to increase hormones at this time.

So, as of now, I'm praying that things remain as good as they are.  Hormones are in check.  Hot flashes are in check.  Weight is in check.  Life is in check.

Until next time my friends...

Lots of love,

Heather

2 Years Post Bilateral Mastectomy and Reconstruction

I'm calm.

That's all I can really say.  The past two years have given me a calmness I haven't known since my mother was diagnosed with breast cancer when I was a child.  I always had that fear of the unknown in my head.  I was always thinking of myself as a ticking time bomb, just waiting for the diagnosis.  Because, lets be real, once you have a grandmother and mother go through the breast cancer diagnosis, and you get his with the confirmation that you carry the BRCA1 gene, how could you not?

So fast forward two years from my surgery, and I no longer fear anything with my health.  I made it through my 40th birthday with the biggest sigh of relief, as it was just after my mom's 40th that she was diagnosed.  I don't have to go to appointments every six months for MRIs and mammograms.  I'm "normal".

As for my implants, I haven't had any issues since the "lump" I had in my last update.  It was just surgical scaring.  But lets be real, when you're in a position like mine, you react quickly and get EVERYTHING checked out.  I was relieved to know that my lump was nothing to worry about and I could continue moving on.

The implants themselves look great.  You can't see my scar as its so well hidden underneath the breast, and they feel great.  They look like they did when I was younger, before having kids, not like having implants.  I have no more pain, no more nerve twinges and I even got some feeling back in areas that I thought would be numb forever.  Now don't get me wrong, there are still numb areas, but I'm just happy its not all of it.

Feeling great and traveling the world with a new view of life.

I know there are so many options these days for reconstruction...you just have to pick the option that works best for you.  If you'd like more information about DIEP surgery, using your own tissue instead of implants, please visit my friend's page, DIEP C Foundation.  She has a wealth of information.  Also, reach out to any of the doctors at PRMA, mine being Dr. C, as they truly are miracle workers and family for life.

As for reconstruction updates, I think this is it!  Two years out, doing great!  If anything changes, I'll be back, and if you have questions at any point, please feel free to reach out.  I'm always here, even if I'm not updating on my mastectomy.  Make sure you check out my oophorectomy posts if you feel that you're going down that road as well.

Lots of love.

Heather

9 Months Post Oophorectomy

It's been a while since I've updated on either my breast reconstruction or my oophorectomy, but figured now is as good a time as any.  I'm starting with my oophorectomy update, as it's been the most life changing.  And since I'm sitting here getting reflexology, I'm nice and calm which puts me in a good mindset for this discussion.

Which One is Harder?

Everyone seems to think the breast reconstruction would be the harder of the two to go through.  I'll give you this...surgery wise, yes, it's a complicated and long one.  Immediate healing and recovery, yes, it takes months to feel healed.  Long term effects...for me, no, the reconstruction was over and done.  But I'm still in the thick of oophorectomy healing nine months later.  The oophorectomy wins as being harder...physically and emotionally.  The effects have been far more difficult for me to deal with on a day to day basis than the mastectomy.

I was very upfront in my previous posts about the oophorectomy preparation and the first couple weeks after the operation.  But then I stopped writing.  I was having a very hard time with all of the changes that were happening to me and didn't feel it was the right time to write through those emotions.  But after time has passed, I'm realizing I might never feel like I used to, and it's time to accept it and let others know just in case someone else feels like I did...do.  

I took extended leave to start.  Originally, I requested a couple weeks, but when it was time to go back to work, I couldn't.  I was having anxiety attacks, couldn't handle the hot flashes and my belly button wasn't healing.  I extended my time off by another week, just to try and settle everything and deal with my emotions.  With my mastectomy, I knew I had the 8-10 weeks I needed for healing, and truth be told, I was in Bali in week 6, so recovery was great.  The first thing with the oophorectomy I had to acknowledge were the hot flashes, then I could figure out the other things happening in this new body of mine.

Hot Flashes

I'm going to do my best to explain how they feel, to me.  For someone who has recently been told, in the last year, that I suffer from claustrophobia, the hot flashes actually made me feel trapped in a way, temporarily, and cause great anxiety.  First, I feel nausea.  Like I'm going to be sick.  This is when my brain starts saying, "no, no, no," and I get uneasy.  But after maybe 30-45 seconds, when my heart begins racing, I realize it's a hot flash coming.  The nausea subsides and I start feeling this warmth radiating through my core, up and into my chest/arms/neck, then finally into the head.  My body glistens and this lasts for about 3-5 minutes.  I grab anything near me to fan myself through to the end. I don't feel any cold air around me, even if the AC is cranked and the fan is blowing on me.   And then, it goes away.  This happens 8-10 times during waking hours.  I don't know why I even bother putting makeup on as I wipe it off with each dab of sweat with my Kleenex.  My daughter once went to lie on my in the midst of a hot flash, and as soon as she put her head on me, she exclaimed, "mommy, you're hot!"

Other Side Effects 

Another side effect of the surgery is the weight gain.  I wasn't aware of this one.  But I can't fit into any pants I wore pre-surgery.  Nine months later, eating healthier and quitting alcohol consumption during the week, I still can't get into my pants.  Luckily, we don't have winter here in Singapore, so I can live in my dresses and skirts, but honestly, nothing else has changed, so hormones are definitely to blame.  It sounds petty to be so concerned about this after everything I've gone through, but it weighs in (no pun intended) in the back of my mind every morning I get dressed.

Skin elasticity, tone and increased overall skin pain is another strange side effect I'm dealing with.  I noticed over the first few months after surgery that my skin gradually started losing it's shine and tone.  It was looking more like my grandmother's skin than my own.  And then massages started to hurt, both in the layers under the skin and on the surface.  My skin was sensitive.  Of course I still get massages, but I grimace through certain areas of my body being touched.

Sleep?  I was the queen of sleeping, ask my husband.  I could nap 2 hours then sleep a full 10 hours at night, no problem.  I loved sleep.  I could have married sleep. But almost immediately after surgery, I had lost the ability to fall asleep, let alone stay asleep.  If I was lucky enough to fall asleep, the hot flashes would wake me instantly.  So, I now take half a Unisom nightly just to get me through the night.  Not a great way to live by any means, but a good night's sleep really is important for the body in so many ways.

Leg Cramps have been awful.  I will just bend my toes slightly, and my foot goes into spasm.  In bed, if I stretch too much, immediate cramping surges through my legs.  I jump out of bed at night, walking around the dark room, silently  wincing at the pain I'm going through so as not to wake up my husband.

Lastly, and it has to be discussed if we're going to be honest, is libido.  It went out the window, never to return in the past 9 months since surgery.  And not just libido, your body stops producing any sort of moisture at all.  It sucks, and I'm not going to lie, be embarrassed nor sugarcoat this one.  You must be fully aware that this might happen and you need to prepare your spouse or partner for the possibility. I don't think this is something easily discussed and it can really affect a woman's self-perception, as well as the relationship.

So, it's quite a list of things I now deal with on a daily basis.  All this because I traded the uncertainty of my future for peace of mind that I'd be around for my kids.  I don't regret that at all.  But why grant myself this peace and longevity if it was going to leave me miserable?  That's not right either.  It's about quality of life and I want to enjoy mine. This leads me into the hot and often volatile topic of HRT.

HRT

About a month ago, I finally decided enough is enough.  I was tired of menopause making me feel miserable, and quite frankly, old.  I went to my team of doctors for help, and three out of four said HRT would be totally fine.  They brought up research articles in the offices, they took my blood to check how I was doing since surgeries, they ran ultrasounds, did fat analysis, etc., and concluded...it was ok.  I walked out of one doctor's office with my progesterone pill and estrogen cream and felt good about it.  

However, that bag with the prescriptions has sat there untouched for the past month, haunting me.  I was nervous.  What if it was the wrong decision?  Would everything I've done be reversed all in vain?  I was listening to the devil on my shoulder as well as the many believers of the 'no HRT' camp, telling me not to do it.  But what about the other camp?  You've got to read both books and make an educated decision.

A month later, yesterday, I had yet another appointment and this time, I got clarity.  The most recent article shown to me being from August 2016, approving HRT to people like me...no cancer history but BRCA+.  I just had to dive in and make a decision.  So, tonight I did it.  I took my first pill and my dose of estrogen cream.  It feels weird to make this decision, but I'm also hoping and praying for the best.  I know I'll always have nay-sayers, but who doesn't?  No one can really tell me what's best for me, but me.

Ongoing Journal Updates

• Three days after starting HRT, I noticed my hot flashes were getting better.  I went from 8-10 a day, to around 5.

• Five days after starting HRT, my legs cramps are gone.  I can stretch to my hearts content without spasms.

• Six days later, I'm an emotional wreck.  I fear this one because I have to be very careful that I'm not slipping into depression.  Everything is making me cry and I'm feeling quite alone.  I know this is the hormones, because for the last 9 months, I've barely shed a tear since the estrogen was removed from my body.  

My First Lump Experience, After Mastectomy

Let me start with this, EVERY lump and bump will worry me for the rest of my life.  It's not over just because I had surgery.  If a lump forms, I'm going to worry.  That being said, I'm also going to let you know that this lump I found turned out to be a suspected undulation of the implant, so you can continue reading just for the education and my experience.

Thursday

At this point, I'm seven months post surgery, and overall doing great.  When you have a mastectomy with implant reconstruction, you're bound to still have numb areas of the breast, like I do.  When I get an itch that I need to scratch, its sometimes hard to find and satisfy with a scratch, causing a bit of a comical scene.  Two nights ago (Thursday night), while lying in bed, one of these itching scenarios happened, which led me to finding my first ever lump in my breast.

You're probably thinking, "What?  You can't get lumps after having a mastectomy!"

Well, yes you can, actually.  

As many people may know, the risk of recurrent breast cancer after any type of mastectomy is not zero. A woman who has had a mastectomy can still get breast cancer, although there is a very low risk of recurrence. This is because it is not humanly possible for a surgeon to remove every microscopic cell of breast tissue. The goal, however, of mastectomy is to remove any gross visible breast tissue seen by the surgeon. In contrast, at the nipple all that is left behind is skin. (http://medicine.stonybrookmedicine.edu/surgery/blog/faqs-about-nipple-sparing-mastectomy-what-women-need-to-know)

There a couple types of lumps and/or hardness which can occur after a mastectomy with reconstruction, and I'm learning about all of them now, only because of the lump I discovered (See below for different types of lumps).  When I found it, my first reaction, within those first couple seconds was, no, not possible.  Nothing was visible from the outside; no rippling, no redness and nothing sore.  I ignored it for maybe an hour, but then came back to it, making sure I was feeling what I thought I was feeling.  I rubbed it, tried to roll it between fingers...anything I could do to try and decipher whether it was muscle, a true lump or my imagination.

By User:Starr4ever:) (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

I proceeded to feel all around both breasts.  Smooth as butter...can't feel a single lump, ridge, fiber...nothing but smoothness.  I went back to this area.  Yep, definitely different.  At that point, I got online and messaged my plastic surgeon (thank goodness for social media).  Now, most people would say, you felt a lump, go get it checked no matter what...why are you taking time to get online?  Well, I was in half panic and half denial, he's my breast surgeon and I was alone in my house.  I needed to reach out, get outside of my own head, and seek advice.  He said it could be fat necrosis or scar tissue, but he knows I won't have peace of mind until I have an ultrasound.

I then messaged my GYN who just completed my Oophorectomy on What's App with what I had found and my surgeon's suggestion.  Again, you're asking why her?  Well, it's night time, offices are closed, and she's online.  I needed to talk to someone here, in Singapore, to get some sort of ball rolling.  She agreed with my surgeon and asked if she should schedule an appointment with someone for me.  I don't know why, but I started to doubt myself at this point, and didn't immediately respond to her.  I became embarrassed.  Am I overreacting?  Is this all because I'm terrified it actually could be something, so I naturally want to avoid it?  Am I making a mountain out of a mole hill? ZERO pun intended.   I'll tell you this ladies, no one can tell you how to react or when to be scared when you are high risk and have gone through these surgeries to try and save your life.  

I finally wrote back and told her I'd wait until my husband got home, and have him see if he could feel what I had felt.  I know, why wait and why did I need him to feel too?  For me, it was like my pregnancy test.  I didn't believe the first one, and proceeded to take three more before believing I was pregnant.  I had to wait until the next morning for my husband due to his late nights this week.  

Friday

When my husband felt, he definitely felt the lump too.  He couldn't tell if it was round or not, or if it was muscle or not.  But he could feel something.  After he left for work, I screamed the F word a few times and I broke down, sobbing like a baby for a few minutes.  It doesn't help that I'm sleep deprived and my hormones are out of whack.  I messaged a few close friends, just for support, because it really can be lonely when you live overseas, and I tried gathering some strength from their positivity.  After pulling it together, I messaged my GYN, as well as my physician/oncologist, Dr. Tucker, and let them know that I was ready to move forward in putting my mind at rest.  Because really, how cruel can the world be, after all I've been through?  It had to be nothing.

I couldn't seem to get an appointment anywhere last minute.  I tried my follow up breast doctor, fully booked throughout January.  Dr. Tucker's office tried another doctor, fully booked.  While this was all happening, I noticed my belly button incision from my oophorectomy was red, tender and slightly oozing.  Two weeks post surgery I wouldn't expect this to happen.  So, lets add one more thing onto the plate and message my GYN again.  Bam, I had an appointment scheduled for first thing Saturday morning, 8:30am (today).  I cried a lot today.  It was a mixture of releasing a lot of tension from this year, disbelief that I am actually going through these movements right now and just overall exhaustion.

Saturday

This morning I was on my way to my GYN.  Upon examination of my belly button after the oophorectomy, I was given some ointment to use twice a day to help it heal.  We then got down to business regarding the breast lump.  She felt the left breast first, getting a baseline of what my new implant breasts feel like.  She didn't want me to tell her where the lump was on the right breast, to see if she could discover it on her own.  Sure enough she did...1:00 position, 1/2 in in size.  She got me into an 11:00am slot with her breast surgeon, Dr. Woon, and I was off, yet again, to another appointment.

Upon arrival at the next hospital, it was lucky that the elevator lobby was so crowded that it began sending me into panic from too many people, because I was able to walk the nine flights of stairs which helped me focus, calm down and exhaust myself a bit.  By the time I made it into the doctor's waiting room, I was too tired to panic or worry anymore.  Dr. Woon called me in, went over my history of BRCA1, surgeries and other health history, then had me get on the examination table.  She felt it right away, and she too wondered what it was.  Out came the ultrasound, but she couldn't find a thing.  Everything was smooth and clear.  No cysts.  She seemed a bit perplexed, so poked a little deeper until she saw some undulations in the implant where I had felt the lump.  She then attributed what I'm going through to just that, undulations.  Now, I'm no doctor, so of course I'm going to relay this information back to my surgeon, just so he can help me understand all this, but he's sleeping right now, so an answer will have to wait. :)  

The one thing that rings in my ears from today, is my GYN telling me, "you're allowed to overreact, because its not overreacting in your case.  We want you to be vigilant, we want you checking and we want to be preventive."  So, while some people will never know what its like to feel a lump, thank goodness, others need to know its ok to panic and its ok to seek attention asap.  

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

Types of lumps:

Fat necrosis: (I did not have flap surgery, but necrosis can still happen with leftover areas)

Occasionally there can be a phenomenon called “fat necrosis” in the newly reconstructed breast mound. That is when the fat from the abdominal flap does not receive enough blood supply in its new position and forms a scar as a result. It will manifest as a hard lump under the breast skin which can feel alarming upon detection. Your plastic surgeon can usually differentiate between fat necrosis and cancer recurrence on clinical examination. If there is any doubt, then you will undergo a needle biopsy or a MRI to arrive at a diagnosis. (http://www.bra-day.com/breast-reconstruction/)

 Capsular Contracture: (remember my Victoria Secret exercises I do?)

If you had implant reconstruction and you feel hardness in the breast area, it may be the result of capsular contracture. Capsular contracture occurs when a hard tissue capsule forms around the implant. It can be small and barely noticeable, or it can become very painful and distort the shape of the breast. Let your doctor know if you see or feel any of these symptoms. (http://www.breastcancer.org/treatment/surgery/reconstruction/screening)

Scaring:

Plain and simple, it could be a bit of scaring from the overall surgery, since there was scraping and disruption all over. 

Calcification Deposits:

Hard lumps under the skin, around the implant.  They can be mistaken for cysts/tumors.

Cysts:

I can't find clear/medical evidenced based information on this right now, but I read a few (ok, a lot) of forums where women find lumps and bumps all the time after mastectomy and reconstruction surgeries, most ending up to be benign cysts.  Yes, it's totally plausible to continue getting these, even after you've had a mastectomy.  Many of the women spoke of these being skin cysts, found in the remaining tissue after surgery.

* Update...nothing was wrong, it was just part of the implant. Everything is ok, but there's no such thing as overreaction when it comes to lumps with a family history.