Love reducing my risk of  cancer recurrence, but HATE what ARIMIDEX® has done to me.

After three surgeries, eight chemos, 1.5 years of Tamoxifen with its drenching hot flashes ("flash floods"), I was "upgraded" to ARIMIDEX® (anastrozole).  "It is more effective and most women have fewer hot flashes," I was told.  Five years of Tamoxifen or ARIMIDEX® will reduce recurrence by 50%, I read.  I also read that 80% of women do not complete the five years...hmmmmmm.  Naive newbie, I was, come hell or high water, I was going after the 50%.  I remain committed to completing the treatment.  Nothing will rob me of the 50% reduction.  What I did not expect was the price I would pay to buy that 50%.

It took me a good six months to adjust to how ARIMIDEX® made me feel.  It turns out it did produce fewer hot flashes, but also brought a new bag of tricks to the party.  These party tricks seemed excessive to me and still do.  I have been counting the days and years until I will be done with the five year commitment.  The end goal actually meshes with my completion of grad school.  I liked the idea of "bundling" my misery and having a lot to celebrate down the road.  Freedom from ARIMIDEX® and the constant crush of grad school homework are the carrots I dangle, replacing previously more picturesque "happy places."  That is why I started to cry, when at my most recent visit to the oncologist, I was informed that research may recommend TEN freakin' years of ARIMIDEX® instead of five.  God, help me!  I don't know if I can feel like shit for six more years.  Oh, sure, feeling like shit is better than being dead, blah, blah, blah, but the fact that I am tempted to derail the ARIMIDEX® train, scares me.  How will I live with myself if  I am not "tough enough" to handle an altered quality of life, only to have cancer return and claim me?  I mean, after all, I already have the Wrangler® "Tough Enough to Wear Pink" baseball cap.  Will I have to turn it in? 

Let me introduce you to the chemical structure of ARIMIDEX®.  This dyslexic (seriously, look at the twinset of molecules at the base...looks like it is having some kind of inner battle and can't make up its mind) little bastard is responsible for completing my total "de-feminization." 

 
Being "de-feminized" originally began with bilateral mastectomies (January 2010), and, no, reconstruction would not solve the core issue here.  As a sister survivor once said to me regarding reconstructed breasts, "Their not the ones God gave ya!"  For women who need to have the breasts for appearance in clothing and to have an intact feminine figure for essential body image issues, reconstruction fits the bill.  For me however, I want real breasts, ones that are not numb and useless in the bedroom.  I don't want implants that try to slip out from under my pectoral muscles or that hurt when I sleep on my side.  I don't want to feel like I always have pressure on my chest.  I don't want to swap them out in eight to ten years due to encapsulization or leakage.  I don't want to have a surgeon move belly fat up into my chest and shape it like playdough, leaving new areas of numbness from the donor site.  I just want my real breasts back, and since that is not possible, I am not going to "settle" and go to the prom with someone I don't like, simply so I can go.  And, please don't get me started on wearing prosthetic breasts.  What a complete and utter debacle they turned out to be.

Now, I will "vent" about my experience on ARIMIDEX®.  No one reads this blog anyway. 
Make no mistake about it, there are still hot flashes.  In addition to hot flashes during the day, the night hot flashes cost me an easy 60 minutes of sleep on average at night.  And no, it is not as simple as going to bed 60 minutes earlier as a solution.  Now, I operate on a baseline of fatigue and general achiness.  Every day I am strategizing how to fit a nap in somewhere, anywhere.  I don't remember what it was ever like to feel "normal."  The "new normal" sucks.  I would rather nap than exercise and have gained a TON of weight, which only exacerbates the scenario.  My girl parts are so deprived of estrogen, that they do not even look like real girl parts.  The labia are shriveled, ghostly pale and wholely unattractive.  The exterior tissue beside the labia is very tender and can split when there is any activity in the region.  This is not something lubricant helps.  It is not uncommon for the external tissue to be tender with wiping. The internal vaginal  environment has gone complete Gobi desert on me (yes, lubricant does help with that, but reaching for the tube does not help with the mood).  Sounds pretty sexy, huh?  Oh, baby, all this really helps me feel sexy too.

So, what does this leave me to offer my husband...a weird form of female eunuch?  Of course he never says a discouraging word, never complains or comments on my weight, never points out that I am generally no fun anymore.  Upon my probing and general mistrust, he says and does all the right things: "I am happy the way things are," and  "I am just glad you are here and healthy." Now, I am considering concubines and/or sister wives for his next birthday.  What else can I do?  I can only compensate with so much gourmet cooking.  I surely cannot deliver "the goods."  They've been stripped away like a car that has been thoroughly "parted out," leaving a shell that is not even an echo of itself. 

This is my reality on ARIMIDEX®.  It sucks.  Hopefully, it will help save my life.  It sucks.  Oh, wait, I mentioned that already.  My heart goes out to all of my "sisters" who are soldiering on with the seemingly innocuous, little, white pill. 

Tonya is a local Portland friend.  She has an amazing story and her story has been featured on skinnymom.com

Name: Tonya Priestley

Diagnosed At Age: 38

Status: Remission

Bio: On my 38th birthday, I gifted myself to a mammogram after I saw a very close friend of mine struggle with very aggressive breast cancer. I had no signs or symptoms, no family history, and no doctor’s referral, but I decided to move forward with a screening. After a mammogram and a needle biopsy of some calcifications, my primary physician misread my results and told me that I did not need to worry because I did not have breast cancer, I just had some atypical cells.

The words atypical cells didn’t settle well with me. I requested a copy of my results and called the mammogram center and asked a nurse to pull up my report to get her opinion. The nurse told me that I needed to see a surgeon.

The surgeon conducted a lumpectomy, which was a short surgery but a painful recovery process – physically and emotionally. I woke up cold and was given pain medication, some kind of narcotic, and immediately threw up. I felt awful. Then I got the news from the surgeon: the lumpectomy confirmed that I had breast cancer.

The next step was to have a bilateral mastectomy. The mastectomy was scheduled for December 23, 2010. With two young girls, I was determined to be home in time for Christmas, but because of my experience after the lumpectomy I was fearful that I would be in pain or groggy from the narcotics.

The day I was diagnosed I remember looking at my stack of business cards and on top of the stack was a card for a woman named Suzie that I had recently met. I remembered having a conversation with her about managing pain for a mastectomy. I called Suzie for her advice and learned that there were alternatives to narcotics available that I could ask my doctor about. My surgeon was able to use a non-narcotic pain relief pump that delivered a local anesthetic through a catheter. With the pump, I was able to reduce the amount of narcotics I needed and I was in control of the pain pump providing me medicine right to the site. I felt so good I was able to leave the hospital the day after surgery and be home in time for Christmas Eve.

My reaction when I was first diagnosed: I felt undeniable relief and gratitude that fate allowed me to get checked out so early. I was also grateful that I didn’t listen to my doctor and that I went beyond her to get another opinion.

How I’m feeling now: Today I feel grateful and happy to have gone through my experience with cancer. I’m a much stronger person today than what I was before I was diagnosed.

My inspirations: Having breast cancer has made me want to share what I’ve learned with everyone. I want to make a difference in other women’s lives. My dream would be to win the lottery so I could start an organization focused on education and prevention. For example, most women don’t know there are different types of estrogen in our bodies, both good and bad, that can be checked in a blood or saliva test. High levels of “bad” estrogen, which can come from either hormones or environmental toxins, can lead to breast cancer. Screening like you screen for cholesterol can help prevent disease.

My support system: I found a great young survivors group out of Portland where all of the women were 40 years old or younger and that was really life-changing for me. I would have never gone, but when someone told me about it and finally got me there, I realized how fabulous it was. Women of a like age were sharing their struggles and making suggestions on how to deal with cancer.

I’m proud of: I’m most proud of standing up for myself and being my own advocate. If I hadn’t, I would still be walking around with breast cancer.

I’m afraid of: Cancer taking either myself, a family member, or friend of mine.

I’ve learned: I’ve learned that Western medicine is far from perfect and women should see a naturopathic physician along with a physician who practices Western medicine, because together you have a better chance of fighting this disease. I also learned about some great resources along the way that helped me with my physical and emotional recovery.

My advice to new patients: Be your own advocate and don’t be afraid to question your doctor. Talk to more than one doctor and be vocal about discussing options for your treatment and recovery. In my case, managing pain after my operation was incredibly important as I wanted to be present with my family during the holidays. By looking into alternatives to narcotics for pain relief, I learned about the ON-Q pain relief pump and it made a tremendous difference in how I felt after surgery. I hope others facing cancer will trust their instincts and take charge of their own health.

This article was featured on Skinny Mom.com   Thank you Brooke Griffin for supporting survivors and helping to educate future survivors!  Jen

Skinny Mom | Tips for Moms | Fitness | Food | Fashion | Family  Visit @ http://www.skinnymom.com/

Breast Cancer Surgery, Know Risks of Second Operation - AARP#.UHxtPBciD9M.email#.UHxtPBciD9M.email#.UHxtPBciD9M.email

Breast Cancer Surgery, Know Risks of Second Operation - AARP#.UHxtPBciD9M.email#.UHxtPBciD9M.email#.UHxtPBciD9M.email

Defiant, hopeful or just plain crazy...

I would be lying if I said I had not asked myself, "What if it comes back and you've spent so much time, energy and money, all for naught?"  Questions like that come up when it has been explained to you that you can never truly be "cancer-free."  Aside from the general desire/plan to live as long as possible to hang with my people, this marks the first occasion I have made a long term commitment as a breast cancer survivor. 

I am 52 years old, a critical care nurse of nearly 30 years who wants to go to graduate school to earn an MSN Nurse Educator degree.  I have milked my associate degree in nursing and my BS in biblical education as far as I can.  I want a booster shot of current nursing theory and the credentials to help advance the profession I love.  That's all well and good, but what if the cancer comes back $20,000 into the journey?  Will I regret that I spent every moment of free time studying instead of hanging with my son and husband?  Will I feel like I have wasted critical family resources?

If I dare breathe these questions out loud, the listener rushes to reassure so quickly that I sense the topic too unhappy for a "real" discussion.  But if you live with the very real threat of cancer, you cannot help but ask the obvious, even if it is uncomfortable.  Yeah, yeah, yeah, I know that even without cancer, I could sign up for grad school and still be newly diagnosed at any point along the way or I could step off the proverbial curb and get hit by a bus.  It just feels like my risk is double that of the undiagnosed, sweetly ignorant, cancer-free student.

So, what does one do?  Well, I have decided to move forward, prayerfully and with confidence that my Heavenly Father will make it clear to me whether I should pursue this or not.  I figure there are many places in the application process that could be used as "STOP" signs.  After all, my credits are rather dusty and I was not a straight A student back in the early 1980's.  Not "getting in" could be a huge red flag to the undertaking.  Applying to grad school requires a written statement of professional goals.  This would be another opportunity for a red flag to drop if my writing sample was not up to snuff.

As of today, no red flags have dropped.  I have been accepted to Sacred Heart University in Fairfield, Connecticut and begin class on October 22nd.  I am giddy with excitement and so happy to start the process.  I will move forward with confidence that God is in control of my life.  The Bible states that He knew the number of days I would live before I was born.  He knows the exact number of hairs on my graying head.  He loves me.  I have seen Him work in my life and trust that whatever is in store, there is a purpose in it to improve me, glorify Him and help some one else.  I have peace about being in His hands.  I wish the same peace for all of you.  Go in peace, serve the Lord.  Live boldly and be a blessing to people around you.
Jen

    This was written by Devon Noelle DowneySmith,
    Marketing & Communications Manager
    Komen Oregon and SW Washington

In my five years at Komen I’ve seen some of our most passionate supporters pass away, and have attended their memorial services – two in the last year alone. I have witnessed women in Multnomah County who, without insurance or support, shed tears of gratitude as we explained how we can help them pay their light bill so they don’t have to choose between life’s basic needs and their breast cancer treatment. These moments take me out of my work being merely a job, and remind me of the importance of what we’re doing.

 

Earlier this summer, I received an e-mail from a woman named Michelle, thanking us for all we had done to help her sister, Sheila, throughout her battle with breast cancer. Sheila was originally diagnosed in April 2003 on the same day she gave birth to her youngest daughter. She fought the disease for eight and a half years before finally passing late last year. Michelle attached a photo to her e-mail of her sister with her daughters and nieces at the Race for the Cure. I suddenly realized the woman in this picture was the mother and aunt of the little girls whose photo was from the 2010 Race for the Cure. This simple realization put into clear focus why the work we do is so important.

 

Now, instead of simply seeing a great event photo, I suddenly see little girls who no longer have their mother or aunt. It was a sobering reminder of the urgency of our mission and the importance of having Komen resources available in Oregon and SW Washington. Too many of us have lost our mothers, aunts, sisters, grandmothers and friends. Too many of us have lost someone we love to this disease – someone who made our world brilliant and meaningful, someone whose absence is a heartbreak that will never fully heal, a void that will never be filled. 

 

 

 Here at Komen Oregon/SW Washington we’re removing barriers, providing resources, investing in cutting-edge research to find cures, and providing screening for low-income women. We are the largest provider of these services in Oregon and SW Washington.

Race for the Cure revenue is what fuels our mission. Your participation is essential. I hope you will join us at the 2012 Race for the Cure. Register or make a donation today. Do it for Sheila, do it for her sister, and do it for her daughters who will be walking this year in memory of their mom. Do it for love. Do it for the cure. 

With gratitude,

 

 

 

 

Hello Friends! This year I am "racing" for my friend Tiffany whom many of you have prayed for. She is doing beaurtifully! Support the cure if you can. You can even support us if you sleep in on the day. Love you all and thank you for your support of me in 2009-2010 and now for my friend Tiffany and Louise!

Komen Oregon Race for the Cure®

I have raised $0 for Komen Oregon Race for the Cure® toward the goal of $100.

Support me with a donation

Breast-Conserving Surgery & Recurrance

"One in five British women who have breast-conserving surgery require a reoperation."

http://www.latimes.com/news/science/sciencenow/la-sci-sn-breast-conserving-surgery-20120713,0,647297

www.latimes.com

I had an inner red flag go up when I was offered lumpectomy vs. mastectomy. The stats say longevity is the same, but there is a slight risk of recurrance with breast-conserving surgery. After two lumpectomies, it was discoverd that I had a second form of breast cancer that was "wide spread" in the same breast with the invasive tumor.  Once I had the bilateral mastectomies, the pathology showed atypical cell changes in the non-cancerous breast.  It looks like I surely would have been one of the recurrance statistics and it might not have been that long before recurrance would have reared its ugly head.  The MRI was not helpful in detecting the wide-spread ductal in situ cancer during my decision process for lumpectomy vs. mastectomy. Am I just an odd duck (don't answer that) or should we be trying to find a way to identify the cancers like mine that are lurking in the shadows, likely to recur, so those women can go straight to mastectomy? I am thoroughly content and even grateful that I decided to hack off  both the offending parties that were gearing up to have a cancer fiesta and kill me!  It would not have been worth it to me to have my breasts an extra six months or a year and half before facing another biopsy or more surgery.  It would have been an unnecessary burden to live with the thought that more cancer could be growing and spreading to my lymph nodes or anywhere else for that matter.  Doctors cannot guarantee that recurrance will be caught before metastasis happens.  I know that my mind is more at ease with my decision, despite having to live with the consequences of losing my breasts.  I still stand by my blog post, "The Tenth Circle of Hell," which identifies the choices and decisions faced by a newly diagnosed woman with breast cancer as those among the most gruelling mental tests in life.  My heart goes out to all who have to wear those shoes.  We need to come together to create a user-friendly, critcal-thinking algorithm to assist our breast cancer sisters in discerning what path to take for their unique situation.

HURRAY for the AMA!

In 2009, the US Preventative Services Task Force recommended that routine mammograms start at age 50 instead of age 40.  It is easy for me to remember how livid I was when I heard this because I still feel the same way.  If I had waited until I was fifty to get a mammogram, my two kinds of breast cancer would have surely metastasized before being discovered.  Thinking about that makes me feel expendable in the eyes of the federal government.  Subjectively, I seem to know of a lot of women under the age of 50 with breast cancer.  I have to ask, "Why don't our lives count?"

My family history is not considered "high risk," which would trigger earlier screening.  I would have never found the invasive tumor tucked up by my chest wall, nor the widespread ductal insitu on self-exam. In fact, after the tumor was identified, chipped and "wired" for sentinel node testing pre-op, a second mammographer took three tries to locate the tumor to verify wire placement.  Scary, I know, but that is why I credit my mammographer, Lori, at Legacy Meridian Park Breast Health Center with saving my life.  Her expert gathering, tugging and stretching revealed the little bastard when others might have easily missed it.  Because of Lori's commitment to excellence, I sit here today, writing to advocate that others be given the same chance for early detection as I was given.  

The good news is that the recommendations triggered a firestorm of disagreement, with the American Cancer Society and other physician associations voicing support for mammograms for women under the age of 50.  Now the American Medical Association has taken a strong stand regarding USPSTF recommendations which also include prostate screening for men.  I am most grateful to the AMA for their involvement.  With their clout, combined with the strong voices of other clinicians, American men and women will not be restricted to USPSTF guidelines which could limit access to screening and ultimately save lives.

As a side note, last year while watching the evening news, I happened to see Providence and Legacy cancer services television advertisements back-to-back.  The Providence Cancer Institute ad was first and a physician spoke about cancer care and screening and stated that they recommend mammograms starting at age 50.  Just as my blood began to boil, the Legacy Health ad started with our spokesperson recommending mammograms at age 40.  My boiling blood dropped to lukewarm and I was pleased and proud to know that I had chosen the right team!

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Putting Breaking Medical News Into Practice

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AMA Bucks USPSTF on Mammography

By Emily P. Walker, Washington Correspondent, MedPage Today

Published: June 19, 2012

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CHICAGO -- The American Medical Association's House of Delegates has come out in support of screening mammography for women starting at age 40.
The new policy is in conflict with the controversial 2009 recommendation of the United States Preventive Services Task Force (USPSTF) that routine screening mammography for breast cancer was unnecessary in women younger than 50.
The House of Delegates stopped short of recommending that "every woman should get routine screening mammograms every year starting at age 40." Strongly debated in Tuesday morning's session, that language was rejected by the delegates in favor of a lighter "should be eligible" phrasing.
In a further slap at the federal task force, the House of Delegates voted to adopt a resolution stating that the AMA "expresses concern regarding recent recommendations by the USPSTF on screening mammography and prostate specific antigen (PSA) screening and the effects these recommendations have on limiting access to preventive care for Americans."
The firestorm that followed the USPSTF recommendations attracted congressional attention from legislators, and HHS Secretary Kathleen Sebelius eventually issued a statement emphasizing that the USPSTF does not set health policy.
A number of medical groups, including the American Cancer Society, the American College of Radiology , and the American Congress of Obstetricians and Gynecologists disagreed with the USPSTF recommendations and said women younger than 50 benefit from having routine mammograms.
The USPSTF again set off a controversy in 2011 when it said that healthy men do not need prostate cancer screening with prostate specific antigen (PSA) because the test does not save lives and often leads to unnecessary testing, interventions, and treatment. The conclusion came after the USPSTF reviewed data from five large randomized clinical trials of PSA testing, which all found found no mortality benefit among men who underwent screening PSA testing and were followed for 10 years.
The PSA recommendation has been controversial in the medical community, especially after a major European trial showed routine testing in healthy men resulted in about a 21% reduction in the rate of prostate cancer deaths after 11 years of follow-up.
In both instances, speciality medical societies were not happy that they weren't involved in drafting the cancer screening guidelines, and on Tuesday, the AMA adopted another policy encouraging the USPSTF to implement procedures that "allow for meaningful input" from specialists.
The USPSTF is an independent panel 16 volunteer members, most of whom are clinicians in primary care or preventive medicine.

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Take Posttest

Emily Walker
Washington Correspondant
Emily P. Walker, MedPage Today Washington Correspondent, covers Congress, FDA, other health agencies in Washington. She also covers an array of healthcare events in the nation’s capital, focusing on intersection of policy and medicine. After earning a BA in journalism and political science at Western Michigan University, she worked at the Kalamazoo Gazette, Congressional Quartely, and wrote for several medical newsletters.