Saturday, May 12, 2018

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.


Monday, March 19, 2018

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.




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.  

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.  

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.



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.  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,
Heather