Saturday, August 26, 2017

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.  


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.


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.  

Monday, July 24, 2017

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.


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 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.  My daughter has even started her own social media sites (following in mom's footsteps for advocacy?) on YouTube, Facebook and Instagram, in order to help other kids and families eat cleaner and sugar-free.

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,

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 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.

Saturday, September 10, 2016

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 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  

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.


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 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 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.  

Saturday, January 16, 2016

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.


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. (
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 (], 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.  


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.


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 (], 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. (
 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. (

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.


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.