Survivorship Questions & Case Update

I see Dr. H tomorrow.  This survivorship thing can be tricky at times, especially when I hope to have a long life to live.  My big talk with her will be Tamoxifen and long term surveillance.  Regardless, she gave me her blessing to wait until I was done with my birthing years so maybe we'll find out even more about long term use of Tamoxifen, especially for younger women.  I still see her every six months.  I hope she doesn't extend me to a yearly office visit.  Can you say umbilical cord?

I realized I never posted a photo of the boys and my niece from Christmas.  This was my first Christmas in Austin, TX and it was Austin winter weather until the cold front came through.  This holiday was different in so many ways.  A little bit of family drama that only made people closer, thankfully.  I didn't get to see the boys as much as I usually would since they did not stay with me.  Regardless, I value each moment I see them!  Hana is also getting bigger and celebrated her first Christmas.  December 2012

This was me in Hot Springs in early March.  As you can tell Hot Springs was not so hot!  It was freezing!  The hot springs are supposed to have healing agents.  I'm uncertain how much of it was true but I did go for a bath and it felt amazing.  Of course it could also have felt amazing because the high was in the 40's and lows in the 20's!

April 15th 10 am will be oral arguments before the Supreme Court!  I won't be there it is open to the public for those that live in the DC area.  Remember:  fingers, toes and DNA crossed that they rule in favor of us because gene patents hinder research!  People could possibly make more educated decisions regarding their health/lives!  Testing would be more affordable.  I can't think about this too much.  I get so nervous. 

More Thoughts on Tamoxifen for 10 years

So I emailed Dr. Litton's nurse.  This is what she said, "Per Dr. Litton:  The ATLAS study and the group of women who participated does not apply to your situation and I am not recommending further tamoxifen at this time."  I received this 1/10/13 at 4:27pm.  I responded with questions concerning the study group but never got a response.

I researched online and discovered that roughly 12,000 people were in the study.  6,000 took Tamoxifen for 5 years and the other 6,000 took it for 10 years.  Roughly 20% were diagnosed at 45 and younger so about 1,200 women per study group.  What I haven't been about to find out is everything else.  How highly estrogen were they?  How compliant were they?  Did they exercise?  Did they eat clean?  Did they have chemo?  Were any node positive?

I have a lot more questions but will see Dr. H soon.  The biggest thing I can try to control is my weight, alcohol and sugar consumption.  To be continued.

Tamoxifen we may meet again?

I've been dreading this post.  Basically ATLAS trial showed that 10 years of Tamoxifen offers more benefit than 5 years.  This came out at the San Antonio Breast Cancer Symposium in December.  To review, those who are estrogen receptor positive basically means estrogen feeds our cancer and that is why we take hormone inhibitor pills like Tamoxifen, especially if you're premenapausal.  Dr. H already wanted me to be on it for 10 years.  The visit with Dr. Litton was in September and she was fine with me being on it for just 5 years.  I think I will need to email Dr. Litton.  Also this Medscape article interviewed Dr. Ravdin who came up with Adjuvant! He apparently would recommend 10 years for those grade higher than 1 and node positive.  I'm node negative but grade 2 intermediate grade....grrrrr...so I may still see Tamoxifen once again.  If so, I don't think I want to do it until I completely know I am not going to have a child.  Even with Tamoxifen it comes with a price of quality of life.  For me I think the major culprit was sleep.  I see Dr. H again this summer and hoping to email Dr. Litton within the next week or so.

 "The results of ATLAS are most relevant for younger women," said Peter Ravdin, MD, who moderated the press conference. Dr. Ravdin is codirector of the SABCS and director of the Comprehensive Breast Health Clinic at the University of Texas Health Science Center at San Antonio.

Dr. Ravdin plans on telling his premenopausal patients with ER-positive disease that 10 years of tamoxifen has benefit over the standard of 5 years. "I am going to be comfortable doing that," he said. The risk for endometrial cancer with tamoxifen is "very low" in these younger women, he added. "I think this trial will have a major immediate impact on premenopausal women."

However, tamoxifen beyond 5 years is not for every premenopausal woman.

He explained that he would lean toward recommending it to women who are at high risk for late relapse (those with positive nodes and/or bigger tumors). Women with small grade 1 cancers are not good candidates because their risk for recurrence is so low. Taking tamoxifen comes with quality-of-life issues, such as hot flashes and other effects, he reminded reporters. Many women already struggle to complete 5 years of tamoxifen because of the adverse effects, so taking the drug for 10 years will present challenges.

The study was funded by Cancer Research UK, the UK Medical Research Council, AstraZeneca, the United States Army, and EU Biomed. Dr. Gray and coauthors Dr. Ravdin, Dr. Barlow, and Dr. Powles have disclosed no relevant financial relationships.

Lancet. Published online December 5, 2012. Abstract, Comment

35th Annual San Antonio Breast Cancer Symposium (SABCS): Abstract S1-2. Presented December 5, 2012

Lasiks, Gyno and Genetic Case and a New Year

Happy 2013! Lots of things to update so lets get started.

Lasiks:  I’m about a month and a half post Lasiks.  Science is amazing.  My day vision I’m seeing as clearly as if I had my contacts in.  Low lights and my night vision is still iffy.  This is to be expected.  My eye doc said it can take up to 3 months for it to stabilize.  I see halos and there isn’t as much clarity when I try to focus on words  I really don’t have dry eyes besides the morning.  I haven’t really have to use my rewetting drops so dry eyes are not a problem.  The redness of my eyes disappeared several weeks post op I felt some sensitivity when I wash my face and when water gets in my eyes up for a month post op. All surgeries require time to heal.  Halos and low lighting are the biggest culprits so I'm happy overall.  I sometimes still feel as if I should take off my contacts at night and have finally stopped reaching for my glasses in the mornings.

2 weeks post op

Gyno visit:  Third time is the charm.  After two reschedules with my gyno, I finally saw her in early December.  Basically, she scheduled tests that I thought she would schedule.  The good news is that she feels my cycles are normal and frequent enough that my hormones are very active.  (Good news and bad news I guess regarding breast cancer vs ovary production.)  I have to time the tests with my cycle so I couldn't get that test done until later in December. Overall great news!  Looks as if I'm close to where I should be for a 36 year old!  One test showed that I was .05 lower than someone my age but that was to be expected for the chemo I was on!  I'm all about knowing and mentally preparing myself for the future so I'm glad I know where I'm at and I'm very happy.

Gene Patenting Case:  Friday we were told that the Supreme Court will take on whether or not human genes will be patentable so fabulous news!  Hopefully we will have a decision by the spring of next year.  It’s pretty crazy.  We started this process when I was 32 and I’m 36 now.  I really hope we win because this would be monumental in terms of more research, less cost on testing, more availability of testing and possibly more advancement.  My hope of course is that it will help me make a definitive choice as well as hope those behind me.  I’ll update more as things progress.  Some links to check out for more details.  

Supreme Court to decide if human genes patentable

Myriad Stymies Cancer Answers by Impeding Data Sharing

Today is January 1, 2013 so Happy New Year!  Wow, what a year!  I'm going to have to devote another entry on my reflection of 2012.  

One More Surgery...Hopefully the Last One in a Long Time

So less than 24 hrs I will have yet another surgery.  I had my wisdom teeth pulled in high school.  That was my only surgery until my excisional biopsy back in November of 2005 where my number of surgeries started to grow exponentially.

Excisional biopsy 2005
Right mastectomy/port 2006
Expander removal 2006
Port removal 2007
Left mastectomy w/expanders 2008
Implants to both 2008
2x oral surgeries 2010
Oral surgery to remove tad 2012
Lasiks 2012

There you have it, my list of surgeries since 2005.  Remember, this is the one that scares me the most, even with blade free technology.  They make you sign your life away including blindness and even worse vision.  I've had my fair share of surgeries and my ups and downs.  I know chances of complications weigh in about 1 to 3% but we know how my crazy mind gets, especially when it comes to stats.

I've researched my doc and I guess I need to have faith in him.  Also, I don't know how long I'll live...there are no guarantees in life.  Trust me, my vision is bad.  I've had glasses or contacts since middle school I believe.  Even if this doesn't correct it 100%, I'm hoping the glasses I'll eventually need will be much thinner or that I won't have to wear them all the time.  Please send healing and positive energy my way.

7 Year Cancerversary 11/16/2012

My Sweet Sammy:  How I miss him each day.  He was my chemo dog and  made each day bearable.  He was my sunshine, my smile, my love, my baby, my heart and my happiness.  He played such a pivotal role in my cancer journey and I had to include him in this blog.

November 16, 2005 was the official day my surgeon gave me the news that my so call benign cyst was invasive cancer.  Wow, what a whirl wind!  I sometimes go back and read my first few blogs and can't believe how crazy things were.  Remember, I didn't even blog while I was actually going through it but I guess in some ways starting blogging in 2007 was a great reflection for me, especially when it was still fresh and raw in my heart and head.

I celebrated each cancerversary until last year, year 6.   I felt as if I shouldn't jinx myself.  I sometimes feel like cancer can lurk and attack at any given moment BUT I also know that I've had wonderful care.  I've recently been evaluated by Dr. Litton and Dr. H and I feel great.  Dr. Litton told me to, "Go Live My Life" so there you have it!  There are no guarantees but worrying helps no one.  A co-working showed me this saying that worrying only gives us something to do but doesn't solve anything.

I guess I am celebrating.  My birthday is around the corner.  I'm finally going to have Lasiks done.  Don't forget that I've had my fair share of surgeries but this one scares me the most.  I technically do not need my breasts but I sort of need my vision.  My 7 year Cancerversary and birthday gift to myself is dropping money down for hopefully a surgery that will allow me to ditch my contacts and glasses (have had them since middle school) until I need reading glasses.  Hopefully positive energy will be sent my way 11/20/2012.

This year on 11/16/2012 I will have a silent toast (heck maybe I'll just have a loud toast and have a glass of vino or champagne)   to my 7 year Cancerversary and hopefully will see clearly 11/20/2012.  Cheers to my 7 year Cancerversary!

Chilly Mamma Jamma 10/27/12

At packet pick up this is what I wrote on the banner of "Why I Ride."  

Bill Bastas spied me and snapped this photo.  I'm surprised you can't see my teeth chattering!  This was at 8am and  temps in the 50's!  Two days ago it was almost in the 90's!

I didn't take many photos.  It was FREEZING that morning!  

Janelle snapped this photo.  Larry and Janice laughed because I was so cold that I forgot to mount my bike before trying to clip in.  It was REALLY cold!  

Some of the crew from our team.  I'm with a bunch of young hipsters.  

With some friends post ride.  I'm not happy because I was finally warm.  Deborah made me unzip my fleece jacket to show off my jersey.  Yes, that is a fleece scarf around my neck!  

Nice surprise to spy this while I was at the 21 mile mark downing lunch.

The fallen angels I rode in memory of.  

Many thanks to those that donated towards my Mamma Jamma goal.  All funds raised goes towards 10 local organizations in Austin.  I'm very grateful for Ambit IT, Steve and Ratchana, Paul and Hillary, Tommie, Steve, Alicia, The Hampton Family, Katherine, Liza and Sis Kelly.  Anyone interested in donating can still do so.  Donations will be taken until the end of this month.  You can donate here.  

This is my third time riding and this year the weather made it more challenging.  I rode 45 miles but only averaged 12.5 mph.  My body just didn't want to work properly in the 50-60 degree weather.  Most people missed the first rest stop which made it tough since I was hydrating and really needed to use the restroom at mile 16.  Regardless, it doesn't take away from WHY I chose to ride.  I choose to ride to ride in honor of all the ladies that I serve.  I rode for myself.  I rode in memory of all the ladies that I've known and lost to breast cancer.  It meant a lot to me because we lost 3 ladies in 3 months.  We unite together to honor them and to support people here.