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.