Tamoxifen - Blocking the Actions of Estrogen

Note: 

This is solely MY opinion on Tamoxifen and the research I had found on it to make my decision. 

I was given the prescription to Tamoxifen by my Oncologist in July of 2014.  She had told me that when I felt that I was in good physical health after ending chemo and going through my 1st mastectomy, that I needed to start taking 1 pill daily.  I fought this tooth and nail.  I had even gone on the drug for 1 month then off of it for 2 months because I did not want to have anything to do with popping this pill for the next 5 years of my life.  Here is why...

Before I started on Tamoxifen I, of coarse, googled it as well as read through the pamphlet that was sent home with me.  All I could think about is that this pill-popping distributer was making a killing off women who have survived Breast Cancer - Irony.  Every single woman is recommended (because the "statistics say") that this decreases our chances of recurrence.

My diagnosis has a lot to do with WHY I have to take this pill.  I was diagnosed with Invasive Ductal Carcinoma - HER2 Neu Positive.  Women carry a HER2 gene and if your cancer is HER2 positive, this means that your HER2 gene has overexpressed itself, thus feeding your cancer. 

"Breast cancers with HER2 gene amplification or HER2 protein overexpression are called HER2-positive in the pathology report. HER2-positive breast cancers tend to grow faster and are more likely to spread and come back compared to HER2-negative breast cancers. But there are medicines specifically for HER2-positive breast cancers." breastcancer.org

With that said, Tamoxifen has over 100 common/less common side effects.  Guess what one of them is?   Increased chance of cancer in the uterus.  I just went through breast cancer and now I'm on a pill that has an increased risk for UTERINE CANCER?  Seriously. The struggle is real, people. Here is a good informational read on the drug, from The American College of Obstetricians and Gynecologists - Tamoxifen & Uterine Cancer

Throughout this process and even beyond, women are faced with several life-changing choices.  If you don't go mentally insane from trying to wrap your head around each and every one, I applaud you.  But be your own advocate.  Research.  Talk to other women who have gone through or are going through the same thing.  Finding the opinions of others on brestcancer.org or talking to women locally or on the phone in other states, did not waver my choices - It opened my eyes to options.   At the end of the day, every woman I have been in contact with that was HER2 Neu positive, through their own research, opted to be ON Tamoxifen.

- Tightness, almost like a fatigued ache, in the back of my calves.  
My doctor said that this is due to blood clotting which is one of the major side effects.  I now take a  low dose aspirin (per my Oncologists orders) and this has taken care of the issue.

-  Cloudiness in my Right Eye.  
Tamoxifen can cause cataracts.  This is the most common cause of blindness.  This side effect started within 2 weeks of being on Tamoxifen.  My oncologist thought that I had symptoms of dry eye, but after 1 year it has increasingly gotten worse and probably my most uncomfortable side effect yet.  I am going to see a 2nd Opthamologist next month, as the first doc couldn't find anything wrong. If this issue increases and if going off Tamoxifen will halt the progression, I will be making a choice at that time to stop taking this pill.  I do not want to lose my vision in either eye and deal with that for the rest of my life.  

- Eyebrows and Eyelashes are thin and fragile. 
I can not use an eyelash curler or it will (no joke) pull out a dozen eyelashes with it.  My eyebrows I dare not pluck, as nothing will grow in its place.  Im not sure if this is a residual effect from Chemo (I've been off Taxotere for over a year now) but noticed that within a month of starting Tamoxifen, my eyelashes fall out even when I simply wash my face.

- What I have heard from other women who are on this drug. 
Weight Gain / I have not experienced this at all.  Hot Flashes / Maybe 1 a month but nothing compared to chemo hot flashes. Vaginal Dryness / Nope! Mood Swings & Depression / Not even the slightest.  Low Libido / Nope! Nausea / None at all. 

So why am I taking this drug?  
The answer I keep coming back to is the fact that I want to do EVERYTHING I can to decrease recurrence.  I dont ever want to go through chemotherapy again.  The statistics show that taking Tamoxifen for 5 Years decreases recurrence by 25% and being on it for 10 Years, decreases by 50%.  Now if the percentages were significantly less, then I would look into other alternatives in order to suppress my estrogen.  

Do. Your. Research. 

Another Side Note: 

This is not an expensive drug.  Its free on my Insurance, but without Insurance (here in Idaho) I would only pay $25 each prescription - which is 30 pills. 

Growing Boobs - Tissue Expander Process

November 1, 2014 - February 4, 2015 

3 Months... Yup - That's how long it took to grow a pair of boobs!  

When I was told that Tissue Expanders would be placed underneath my muscle and that my surgeon would insert saline every week via a port on top of the expander (through my skin mind you) in order to stretch out the connective tissues, you can only imagine one's facial expression.  

Of course I had googled the crud 

out of this process :) 

I have been stuck with so many needles at this point, meh, what's another one in my breast every week for 3 months?!  I went into my first appointment to have the saline injected into the expander and was pleasantly surprised at how easy and quick the process was!  

My doctor had bags of saline laying out on a table along with a VERY large needle to inject with.  She grabbed this small magnet-finder device and found the port to my implant at the top of my chest. She then popped the needle into the port and started to inject saline into each one.

This process really depends on the person. I had started to feel pressure in my chest and had her stop at 75 CC's because it was getting a little hard to breathe through the tightness.   After this first experience I had learned very quickly that taking in less at a time and more often was the way to go, unless you're on a mission!  

I had started to go in every week for about a month then tapered off to every 2-3 weeks.   I would have her put anywhere from 50-100 CC's each visit depending on how much ache and pain I was willing to go through during the days after.  There was definitely pain involved and with skin and muscle stretching, I expected nothing less at this point.

What I wasn't prepared for:

My chest looked like an alien was growing inside of me. There is nothing PERFECT about this process and you really have to wrap your head around the fact that this is prepping your chest for the final outcome.  It was impossible to wear any type of top and not look like I was completely lopsided. The saving grace throughout those 3 months was to wear the sports bras I was given when I had only 1 breast over the summer.  These bra's had come with contouring pads.  With the left breast that was seemingly up in my face, I had to manipulate the pads in the bra to create more thickness to match my right side.  

Everything was disproportionate and the idea that I could have a "normal" looking chest after this was beyond my imagination.  My surgeon said this had a lot to do with the fact that my Right Breast was an immediate mastectomy - to - expander swap out.  My Left Breast was not, and I had gotten it removed 4 months prior to the expander surgery.  

This photo was taken the morning of my Exchange Surgery (Expander - to -Implant swap) I was at 400 CC's and all of my trust was in the surgeon's hands, in making me look and feel like I had breasts again. 

Talk about Faith. 

 

My First Hair Cut

November 22, 2014

How many adult women can say they are having a "First Haircut & Color?"  Not many.  I had been anticipating this moment for a long time and growing your hair out from a buzz cut is NOT all it's cracked up to be.  No one tells you that when your hair starts to touch the tops of your ears and the nape of your neck for the first time in almost a year, that it can drive you CRAAAAAAAAZY.  Yes, truly crazy.  I had dreamt about having my long blonde hair back... but at this point all I wanted to do was find a pair of scissors and CHOP.  

During the grow out process I felt like a boy.  As my hair grew it would faux hawk out at the top, sometimes it would get a little wavy (my hair was wavy before chemo) and don't get me started on the ever evolving mullet that was happening in the back. For lack of a better term, I did not feel "pretty." Instead I felt guilt, for disliking the hair on my head.  I should have been appreciative but instead I was miserable.

Exactly 10 months, almost to the day, after my last appointment at the Salon (where I had chopped off 8 inches of hair the day of my 1st Oncology appointment) I was back in the chair and this was the result...  

I felt like a 

WOMAN again! 

I thought that there was no way she could make any sort of impact on what little hair I had - but she did! My hairdresser lopped off my lovely mullet and shaped the back and the sides around my ears.  I did not have her touch the top of my hair at all.  She highlighted heavily in the front and ombre'd down the back.  She did an unbelievable job. That whole 2 hours in the chair completely changed my attitude and I started to really appreciate what I had.  

17 Days Post Tissue Expander Surgery

November 18th, 2014

I am going to be extremely honest about what I went through during the Chest Expander process. It was, absolutely, the most painful and emotionally draining surgery that I had gone through - And at the end of this process, I had 5 surgeries (this was my 3rd)  

This face right here - is hopped up on meds.  At this point the pain in my chest was so unbearable I had literally cried every day for 2 weeks straight after the surgery.  Nothing I did, how I slept, the amount of pain pills I had taken and anything in between gave me relief.  The only reason I was smiling was because of the news I had received that day from my Oncologist right before my Herceptin Infusion:

"Only 3 more mother-effing needles left! Then this woman gets 1 LAST surgery & her life BACK in the New Year"
- Facebook Post that day -

(I did end up having 2 more surgeries)

One night my Dad had called me after hearing about the amount of pain I was in.  He asked if there was anything he could do to help.  My biggest issue was lack of sleep and after a few weeks it had been taking a toll on me mentally.  I thought maybe a recliner would help and asked if he could drop off their recliner for me to borrow.  The next day he dropped that bad boy off and I had high hopes - only to be sorely disappointed.  I slept in that thing twice and just the process of getting in and out of the recliner was enough to punch something. HUGE donut hole. 

The problem was not just the pain, it was the laying flat on my back part that threw me into agony.  The pressure from the expanders was truly too much to bare.  I remember one night I had gotten out of bed and gone to the couch to sit Indian style with my back up against the wonderful couch pillows that were my only saving grace during this time.  I sat there and I sobbed.  I cried and prayed to God to please give me some type of relief.  That was a pivotal point for me because I realized that night, there was no choice but to be in pain and to just get through it.  I wanted relief but I could not see past the pain - and that was my mental block. I dwelled on it.  This was the 2nd time throughout the entire year process, that I completely broke down emotionally and I needed it.  Sometimes you have to ALLOW yourself to indulge in a shitty moment.  This was my shitty moment and I owned it.  

Right Breast Mastectomy + Full Chest Expander Reconstruction

Saturday, November 1st 2014 - The Big Kahuna of all Breast Surgeries has ARRIVED! 

Let me start off by saying - This, I hope, is the worst of it.  I have never been in so much recovery discomfort/pain in comparison to all other surgeries before this one.  Which brings me back to those infamous drainage tubes!  Last time I had ONE tube for my Left Breast Mastectomy back in June.  That tube brought me to my knees twice.  There is something about a nice (LONG) playable tube inserted about 12 inches into your chest that can get on anyones last nerve - So this time, times that by 4.  Yup. 4 drainage tubes.  I dont care who you are... you will be on the floor at some point crying hysterically because it is too much to bare and you want them all PULLED OUT!!!  Ya know, the same feeling you get during the last week of pregnancy ... 

I had my surgery on Wednesday, October 22, 2014 @ 6AM.  I knew the drill and my nerves were pocketed this time.  My lovely Scott was with me and we both joked around, laughed with the doctors and teased like we do, to make light of the situation.  God, I love that man.  I had a good idea as to the surgical process & what was to be expected - However this time Id wake up with a reconstructed rack.  HA!  To my surprise, I did not.  Now, I knew the surgeon was only going to start my Chest Expanders out with minimal fluid... but not THAT minimal!  Sheesh.  Cut this small B chested woman a break and give me something to wake up to.  Unfortunately, I will have to go through a 1-3 month process of getting a needle inserted into each breast and have about 75cc's of saline injected every few weeks.  Once I'm comfortable with my size, they will go in and swap out my expanders for my new Silicone Implants!  

Interested in what was used for my reconstruction & the process - Watch this video! Alloderm - Chest Expander Process - They used a "cadaver hamic" called Alloderm that was sewn in my chest muscle in order to hold the new implant.  Its all very intriguing how they do this, honestly.  

I was released Thursday to go back home and pretty much do a whole lot of nothing for 2 weeks.  Unfortunately I cannot take that much time off so I settled for a week and some change!  II'll be returning to work on November 3rd and I am looking forward to it!  It really keeps my mind off things and I enjoy what I do.  The pain meds have been heaven sent and I have not been shy to use them this round.  When your chest feels like its locked in a metal vice bra 24-7, you take the drugs.  

Prescribed

Percocet - Pain 

Lorazepam - Muscle Relaxer, helps the clenching in the upper chest a TON

Cephalexin - Antibiotics / Every 6 hours like clockwork for about 2 weeks. Super Important that I do not have an infection.  

Tips & Tricks for the Drainage Tubes

With the Chest Expanders I am not allowed to wear a bralette or zip up medical bra (that I had with my mastectomy last time).  So improvising happened!  I took two fluffy socks, safety pinned them to my pants at each hip and tucked 2 drains into each one.  This helps tremendously in having to carry them around.  I was given a long necklace of some sort to hang around my neck to hold the drains - Not a chance!!  I tried it and wanted to faint. The weight around my neck and the necklace with the drains leaning on my chest was a no go.  Also, I thought wearing loose fitting tops would feel better - negative there as well.  The snuggier the shirt the better.  Im not talking super tight, but lightly snug.  It helps the drain tubes stay against your sides without them dangling & flopping around too much - which ends up irritating the stitches that are holding the tubes in place. Always pad your drain tube site.  After each shower, I take a folded piece of gauze and tape it over the drain site as a cushion - Brilliance at its finest right there!   

Creating the Breast 

In this photo, you can see how cleaned out and concaved my "cancer" breast is post Left Breast Mastectomy.  It was so hard for me to believe that a surgeon could make a breast from that.  After the Expander Surgery with very minimal Saline, you can see that my chest is starting to form a rounded contoured breast shape.  I am very happy with the result thus far! 

Breast Cancer Awareness Day!
And lastly, our boys are awesome!  For October 24th Breast Cancer Awareness Day, their school wanted everyone to wear pink.  So a week before surgery I bought some hot pink long sleeves and puffy paint!  I designed the front and they designed the back.  They sported these so proudly that day and it makes my heart smile HUGE to see this photo!!!  

It's All About The Hair AFTER Chemo!

Saturday, November 1st 2014 - Hair After Chemo 

5 Months Post Last Chemo Hair Growth

Top Left - June 10th 2014 through Bottom Right - October 5th 2014

If there is one thing I googled more often than not, after finding out that I would be losing my hair to chemo... It was how fast does it grow BACK?!!!  Well here is a great progress photo for those in the same position - And my answer to you is that it grows back fast, however NOT fast enough!  I would read and hear things like my hair would feel as soft as bunny fur while coming in - Negative. That definitely didn't happen for me.  My texture hasn't changed, still have the some old dirty dishwater blonde that I did growing up - Except with WAY more gray!  And with that being said, my 1st Hair Dresser appointment is already scheduled for November 23rd and I cannot be more excited to get some light blonde back into my life!!  

I didn't do anything to help this growth along.  A lot of sites and blogs suggested all of these vitamins, oils, shampoo's, etc. and I just went out and bought a natural/paraben & sulfate free shampoo and conditioner.  I only wash my hair every other day or every 3 days, as I have zero oil issues.  I do not use a blow dryer or flat iron on my hair either.  The maintenance is super quick and it tends to faux hawk at the top naturally, which my little boys seem to dig!  

People often ask if I'm going to keep it short because they think its cute & it "has to be easier to upkeep now"... Well my answer is a big 'ole HECK NO to that one!  I love hair that I can use a curling iron on and braid. I am so anxious to have my long blonde hair back, I can hardly stand it.  I reminisce over photos and try hard not to do that too often, as it makes me so sad.  I miss bribing either of my two sisters to brush it and play with it every time we have Sunday Family Dinner.  I keep thinking just one more year and I will have a decent head full, to feel girly again.  Right now, you throw some reading glasses on me with no make up & this short-do and I look like a 12 year old boy about to hit puberty.  Definitely done with this phase!!!  

Left Breast Mastectomy

Wednesday, July 25th - Left Breast "Under Construction"

 

The last 7 days, to be honest, have had a lot of “I hate everything” moments!  And I thought being on steroids was bad. Um No. Try going through your everyday life with a DRAINAGE TUBE in your chest, coming out of your side and stitched to your skin.  Holy heck – Those who’ve been there know exactly what I am preaching about.  Every time I think “this is the worst part”… something somehow trumps it.  And the drainage tube trumps a lot.  During a brief meltdown a few nights ago, I told Scott that “I will never complain about chemo hives ever again after experiencing this contraption.”  Poor guy, he seriously did not know how to comfort me during this hurtle and has not been able to give me a good solid hug since surgery.

 



Photo Disclaimer 

I feel like a hot mess and look like I need to eat a hamburger… or 5

 

 

On Wednesday, March 25th, I checked myself in to the hospital @ 10am for my Left Breast Mastectomy.  Scott accompanied me and then I was pleasantly surprised with a visit from my good friend Bradley!  We all sat in the waiting area cracking breast jokes and trying to get my mind off the inevitable.  At 10:30 they walked Scott & I back to the pre-op area and  I gowned-up and they accessed my IV Port for the IV, etc.  which was AWESOME!  I really do love my IV Port - and there truly is zero sarcasm in that statement.  However I look forward to the day it is gone because that will mean I am done with treatment!  So I hung out in the pre-op room with Scott until 12pm surgery time.  Dr. Prier stopped by and wrote her initials on my Left Boob and off I went.  Gotta love anesthesia.  Within 10 seconds I was out like a light and woke up 2 hours later in post-op.  They rolled me into my room and my family was waiting for me!  I don’t quite remember much of that evening due to the amazing morphine they doped me up with but I do know that I slept damn good that night.  Thursday I had to spend in the hospital until I was discharged in the early afternoon.  Before heading out I met with Dr. Prier and she said that my breast tissue slid off nicely which is a good sign.    

As I was lying in bed at home on Friday, I received a phone call at 10:45am from Dr. Prier – My pathology report from my breast tissue had come back and her exact words were “I have some great news!  Your report is in and there is zero cancer cells left in your breast tissue.  All that was left was very little scar tissue where your markers were placed on the tumor (during my core needed biopsy on 1/17) and the surrounding tissue did not test for cancer.”  I AM CANCER FREE!!!!!!!!!!!!!!!!!!   This was of coarse amazing news but I was so loosened up on Norco that I could hardly bounce off the walls let alone get up to use the restroom.  Still, after 5 days of receiving this news, it is very surreal and honestly unbelievable.  I am still in shock.

 

 

No-Boob Shocker - To poke fun of myself, I truly don’t see much of a difference considering how tiny my boobs already are!  But to be honest, it is a loss and I have my moments.  And for now I am allowing my body to heal rather than focus on the emotional aspect of the process.  I have to tell myself every day to look at my bandage and the tube coming out of my side for infection and changes in the area rather than focus on the fact that there is zero breast tissue and my nipple is gone and holy crap, couple that with a boyish buzz haircut and no makeup and I’ve got myself an emotional meltdown waiting to happen!!!  So I choose to compartmentalize and that works for me, for now. 

Mastectomy pain wise – This is a cake walk.  I had surgery on Wednesday and was back to work the following Monday.  I am not allowed to lift very much for about 2 weeks.  The area is tender and very numb which is such an odd feeling when getting examined.  There’s a lingering ache feeling in my chest but other than that, this has been an easy recovery.  I took pain meds for about 48hours after surgery and haven’t touched them or needed them since.  I have these sensations through the entire area of tingling and pinching and twitching, almost like the nerves are trying to connect to something that isn’t there. 

Drain & Drain Removal (TMI for those who want to know or are going through this) – My drainage flow was very little.  The first 48 hours I had about 25-35 ML of fluid but after that it tapered off quickly.  I am 7 days post-surgery and had my drain tube removed today because I couldn’t stand it anymore (and because I also maintained a 10-15 ML of fluid for more than 2 days which is a sign that it can be removed.)  Don’t read what the internet tells you.  Funny thing, I completely psyched myself out and read the bad stories of infection and painful removal.  For me, it took – literally – 3 seconds.  I counted.  I was on my back on the table, she snipped the stitch that was in my skin (did not feel this at all), pressed a gauze pad over the insertion site and gently pulled it out.  I felt pressure and that was that.  I was so excited to be free of that darn thing, it has been the highlight of my week!!!  The aftermath of the removal – So far it’s been 6 hours and I have an increase ache in my chest and this feeling as if fluid is “gurgling” under my skin.  I spoke to someone I know who had a drainage tube as well and she said she felt the same thing.

 

This bra is hanging in my doctors office!   Love it!!!