Choosing Not to Have Breast Reconstruction

A woman’s risk of breast cancer approximately doubles if she has a first-degree relative (mother, sister, daughter) who has been diagnosed with breast cancer. About 15% of women who get breast cancer have a family member diagnosed with it.

– From http://www.breastcancer.org/symptoms/understand_bc/statistics

As I mentioned in yesterday’s post, I asked my sister Alyssa if she would also contribute a post for this blog, which she sent to me last night.  A few things need to be said before we get to my sister’s post.  Alyssa and I are the two youngest of 5 kids.  While all of us “kids” are within 2 years of one another, she and I have a different relationship with one another than we do with our other siblings.

We talk or at least text every day.  When one of our husband’s is out of town, we are the other’s “safety buddy.”  We will tell each other when we’re going somewhere, when we get home, when we’re going to bed or wake up, and remind the other to lock the doors and windows.  Until I got married, Alyssa was the focal point of my love and the highlight of my days.  I told her everything, and possibly WAY TOO MUCH at times (especially on weekends after 2 a.m.) any time I got a chance to talk with her.  She was busy with her husband and young family, but she always made time for me then – just like she does now.

Alyssa has been a stay at home mom since her first born made his debut 12 years ago, and she’s damn amazing at it.  She cooks, cleans, chauffeurs, manages schedules and homework and still has a laugh every day.  She is so sweet to her husband and kids, but that’s just her nature.  She is loved, needed and relied upon in her immediate and extended families.  She’s also secretly a devil, and I mean this in the nicest way possible.  She is sweet, shy, reserved until you mess with her family; then she will scratch your eyes out and possibly break a glass vase over your head (totally a fictional scenario…).

I bring these things up because my Alyssa is someone else’s wife, sister, mother, cousin or best friend.  And while some people have recently said that having the entire month of October for Breast Cancer Awareness is too much, I disagree.  If not for Alyssa’s cancer, I probably wouldn’t have discovered my own genetic mutation and developed breast cancer myself.  I can’t help but assume there are so many other families out there with a genetic risk that just isn’t thought of or accounted for.  All of us kids knew that my mom had a hysterectomy at a very young age because she was “riddled with tumors”, but it never occurred to us that this equated to an inherited risk for cancer.  So, please, let’s continue raising awareness, having discussions, and hopefully working towards a cure.

And now, after too much from me, here is my Alyssa:

I am a 34 year old married, mother of three and am a breast cancer survivor that carries the BRCA 1 gene. I was diagnosed with Stage 1 breast cancer in February 2010 at the age of 30.  I found the lump in my breast by chance of all things. I hopped into bed on a cold night in January with my bra on, and the underwire in my bra pressed on the lump in my breast. I did not know that within one month of finding that lump, my life would be changed forever.

Everything happened so fast after I was diagnosed with breast cancer. I was diagnosed with Stage 1 breast cancer, and my cancer was aggressive so my doctors wanted to move fast. All of the doctors I saw, from my nurse practitioner who ordered the ultrasound of my breast, to the radiologist who biopsied my breast, to the first oncologist I met with, were shocked that I had breast cancer. They were shocked because of my age and the family history I gave them, which was little. At the time I only knew of my aunt on my dad’s side having breast cancer, but not the details of her cancer. I knew my mom had a hysterectomy in her late twenties, but it was never clearly explained to me why. My doctors had not had a patient my age with so little occurrence of breast cancer in the family. After meeting with the first oncologist my husband and I were bombarded with information. There seemed to be multiple scenarios, with multiple treatments. None of the doctors were 100% certain of the best route for treatment, because the doctors did not know why I had breast cancer. It was recommended I meet with a genetic specialist.

Meeting with my genetic counselor was one of the best things I could have done. After talking with her, and discussing all the information she could give me, I chose to have the genetic testing. During our meetings I discovered more about my family’s history of cancer, that I was a BRCA 1 carrier, that there is a 50% chance my son and two daughters may be carriers, & there was a 50% chance any of my three sisters could be a carrier. It was discovered my younger sister is also a BRCA 1 carrier. We are the 50% out of the four sisters in my family that carry the mutation. Shera chose to have the DIEP breast reconstruction to reduce her chances of breast cancer. If you are reading this, then you already know of my amazing sister.

With my diagnoses of breast cancer and carrying the BRCA 1 gene I decided that I wanted to reduce my risks of recurrence and elected to have a bilateral mastectomy with reconstruction at a later time, and a total hysterectomy. For me, this was the best choice. I was not hesitant about these choices. I knew I wanted to have my bilateral mastectomy first. I knew I did not want to have my reconstruction done at the time of my mastectomy. I thought implants were the route I would take, but I did not want to deal with the multiple visits to the surgeon’s office while going through chemotherapy and a total hysterectomy. 

When I was done with chemo and recovered from my hysterectomy I went to see a plastic surgeon about my reconstruction. He went into great length of the reconstruction process, my expectations, and answered all my questions. After he left the room I had photos taken of my chest, and scheduled my appointment for pre surgery for breast implants. I thought this was the next step in the plan I had made many months before. This was what was supposed to happen next. So I couldn’t figure out why I felt so sad. Was it because my breasts wouldn’t be as big as I thought they would be? I always wanted to be a C cup if I had implants, and when I was told I did not have the skin for that size after my mastectomy I thought to myself, “Well, why the hell am I doing this?” Or was I sad because after looking at the photos of reconstructed breasts using implants, the breasts looked odd to me. Or was it the reason I knew, but didn’t want to admit.

When I arrived home I talked to my husband about my visit, and when I was finished talking my husband asked, “If this is what you want to do, why are you so sad?” I told him I no longer felt like I wanted to do the reconstruction, but I felt I had to. I felt it was the expectations of everyone else. I read multiple articles, and talked to multiple doctors and reconstruction was always hand in hand with mastectomies. Whether it was at the time of the mastectomy or further down the road.  But after my consultation, I realized that the outcome of reconstruction was not going to be what I had envisioned. So did I really want to go through all of that to only be disappointed in the end? I also felt strongly that I did not WANT to have this surgery. I just didn’t want it. I wanted my body to be left alone. In the end I decided not to have reconstruction.  

I decided the next best thing would be breast prosthetics. I went to my designated prosthetics company and was fitted for the size of prosthetics I wanted.  I figured I would wear my prosthetics during the day, and remove them at night. That only lasted a few weeks. It felt odd having breasts in the way again after not having breasts for almost a year. I enjoyed not wearing a bra, and not having to worry about breasts without a bra on.  I occasionally wear my prosthetics, but I’ve worn them probably twice in the past two years.  

I’ve gone through ups and downs with the decision of not having reconstruction after my mastectomy. My downs are due to a handful of reasons.  I was worried if my husband would still find me attractive without breasts. Would my kids be teased at school for their mom looking different? Will I figure out how to wear women’s clothing and have it still look cute, and not droop in the front where breasts are supposed to fill that area? I find comfort and confidence in the answers I’ve received to these questions. My husband still calls me his beautiful wife, my kids tell their friends, classmates, & whoever asks that their mom had breast cancer, and I can still rock an outfit that I feel makes me look cute!

I am still self conscious at times of my choice, but it’s my choice. Maybe one day I will change my mind. Maybe I will never change my mind. I know no matter what I choose I will always have the support of my husband, my kids, my sister who’s been through her own journey and continues on it, my other two sisters who support us, my family, and my friends.

I’ve attached photos of my scars so you are able to see what my scars looks like almost 4 years after my bilateral mastectomy.

I hope this helps!

~Alyssa

Alyssa after mastectomy

Alyssa photo 2

Alyssa mastectomy photo 3

Alyssa mastectomy photo 4

 

 

Alyssa and John visiting us in Seattle this summer.

 

There are no words for how much I love my sister.  Every time this song comes on, I think of her.

 

Prophylactic Mastectomy, DIEP Breast Reconstruction, and a Husband’s Perspective

I (obviously) failed at my attempt to be clever for this blog title, but it does a good job about conveying the subject matter of this post.

Since joining the DIEP support group on Facebook, I have received a few personal messages asking about things I kind of covered here previously that deserve a little more discussion.  I received a couple of direct messages inquiring what my husband thought about my process and, more specifically, my Noobs.  I’ve been asked this a couple of times and have, somewhat ignorantly, answered for Mike (my husband, who also has a blog).  I’ve said, “He was great about the whole thing.  He was supportive of my decision to do the BPM and go forward with the DIEP reconstruction.  He helped care for me during my recovery and was terrific the whole way through.”

But, after receiving another message asking the same last night and responding the same, I received this question in reply:

“But how does he think you look?”

In all honesty, my husband (fortunately) tells me very frequently that he thinks I look great.  And, to continue on the path of honesty, I sometimes feel like he says it to help buoy my spirits and keep my confidence up.  And not have me scratch his eyes out.  But I think the criticisms Mike might have about my body have nothing to do with my surgeries.  I think the real adjustment came when we had twins and the aftermath of me gaining (and then losing) 70 lbs.  I have assumed, over these past 18 months, that he sees my post-op, nude body the same way that I see it; in the dark and somewhat intoxicated.  JUST KIDDING.  I asked Mike to contribute a post to my little blog and give some spousal, but also community, perspective for those wondering the same.  Without any further adieu, I give you my husband…but only for the period of time it takes you to read his post:

My wife Shera asked me to explain how I see/view her body/breasts/scars after surgery.  Here are my unfiltered/unedited thoughts:

Addressing the BRCA issue by removing breast tissue was courageous and smart.  

Shera spent an enormous amount of time researching her reconstruction options.  She formulate a game plan that she was comfortable with and worked well for her.  She was fortunate to have supportive and very skilled doctors.

Having the potentially dangerous breast tissue removed was the first leg of the trip. Reconstruction completed the journey.  

Shera looks great. Probably better than she did before the surgery.  On some levels it seems like that’s all there is to say.  But that’s only about 10% of the story.

The scar on Shera’s stomach is massive.  It must be a foot-long. But that’s not a good measure of its significance.  What defines its significance–and what has helped me assess/understand my relationship with Shera–is that I don’t notice it.  

 

When I see her with her stomach exposed, I see a person. I don’t see the scar.  That’s not a figure of speech. I literally don’t see it.

 

It’s like I don’t have the visual vocabulary for it.  Without a word in that visual vocabulary there’s no place to store the image.  (Interestingly, I just saw a story about a variant of this concept in the NYT.  “There is no word for cancer in most Ugandan languages. A woman finds a lump in her breast, and cancer doesn’t cross her mind. It’s not in her vocabulary.”)

 

The takeaway for me from the whole reconstruction process and result is a better understanding about what my wife means to me and how I “see” her.  

 

Her breasts are full.  Her stomach is flat.  That may have been the goal.  But I think the best part–at least from my perspective–is the wonderful realization that our relationship has evolved significantly beyond cosmetics.  

 

At this point I’m confident that she’ll look as beautiful to me at 76 as she did at 26.  Maybe more so.  

 

“Happy wife, happy life.”    Shera is very involved in BRCA and breast reconstruction issues.  The experience has been a springboard to the future rather than an anchor to the past.  Based on my experience it’s important for husbands that their wives “complete the journey” so that they can look forward rather than back and live rich, full lives.  

Mike and me in 2007 (when our only babies were felines).

Dreamy, right?

*Also, since October is Breast Cancer Awareness month, I wanted to have a post from a survivor with a different perspective on reconstruction. My sister, Alyssa, is going to put together a small (but fantastic, I’m sure!) post about her process and why she chose not to have reconstruction.  Stay tuned for that, hopefully later this week.

And now, the song that I chose for mine and Mike’s walk down the aisle…

Why Younger Women Could Benefit From Mammograms After All

I cut and pasted this article from NPR.  It doesn’t have anything to do with BRCA1, BRCA2, prophylactic mastectomies or DIEP flap reconstruction.  But I thought it relevant and a good thing to repost.  When my sister was diagnosed, she was 31.  She’d never had a mammogram or breast MRI.  She had stage 1 breast cancer, but her form of breast cancer was fast growing.  We are all lucky that she just happened to roll over and feel that awkward, uncomfortable lump one night and decided to have it looked at.  That lump changed all of our lives, but mostly hers.  To my sister, Alyssa, I LOVE YOU and I am so proud of your ability and willingness to fight!:

 

My sister, Alyssa, with one of my daughters (Liv)

Women should get screened for breast cancer in their 40s, a study concludes, because they face a greater risk of death when cancers aren’t found early.

Women who were diagnosed with cancer in their 40s and died of the disease were more likely to have never had a mammogram than were older women, according to the study.

Seventy percent of the women diagnosed with cancer in their 40s who later died hadn’t had a mammogram, compared to 50 percent of women in their 60s. Half of the cancer deaths in the study were in women who had been diagnosed before age 50.

“Breast cancer is primarily a disease of older women, but younger women tend to have faster-growing cancer,” says , a professor of women’s health and radiology at the Washington University School of Medicine in St. Louis. She wasn’t involved in the study.

“There are people who feel that screening doesn’t reduce death rates, that it’s all in treatment,” Monsees tells Shots. “This study corroborates prior studies that screening mammograms save lives.”

Breast cancer is in younger women, and is most often diagnosed when women are over 60. But in this study, the death rate for women diagnosed in their 40s was almost twice that of women diagnosed in their 70s.

The study is sure to add to the ongoing controversy over when and how often women should get mammograms. It backs up the American Cancer Society’s that women get mammograms every year starting at age 40.

But in 2009, the U.S. Preventive Services Task Force, a federally funded independent panel, that, in general, women should wait until age 50 to start getting screening mammograms, and then get screened every two years up till age 75.

That recommendation factored in the fact that younger women are more likely to have false positive mammograms, which can lead to unnecessary biopsies and anxiety.

“Overdiagnosis has been completely exaggerated,” says , director of breast imaging at Massachusetts General Hospital and an author of the paper. “Well, calling people back for additional screening causes anxiety, I understand that. But it absolutely saves lives. You reduce the death rate by 30, 40 percent if you start screening at age 40.”

This study looked at women in the Partners HealthCare system in Boston who were diagnosed with invasive breast cancer from 1990 to 1999. The researchers then checked the women’s medical records to see if and when they’d had mammograms.

It’s a form of study called a “failure analysis,” a what-went-wrong approach similar to that used in investigating airplane crashes. , an emeritus professor at Brown University’s Alpert Medical School and one of the study authors, tells Shots that he thinks it better reflects the effect of screening than do population-based studies, because the health system records show which women actually got mammograms, rather than say they did.

Of the 7,301 women in the study, 609 had died of breast cancer by 2007. Almost three-quarters of the women who died hadn’t had a mammogram in the two years before the cancer was found.

Overall, 80 percent of the women were getting mammograms at least every two years, well above the . Some of them still got breast cancer, but, overall, the death rates were higher in women whose tumors weren’t found until they could be felt.

“While the analysis reveals that regular screening will not prevent all breast cancer deaths,” Robert Smith, director of screening for the American Cancer Society, told Shots in an email. “It also reveals that even with improvements in treatment there is still a significant advantage of detecting breast cancer with mammography before symptoms develop.”

This new study also found no benefit in mammograms for women over age 69 when it came to reducing cancer death risk.

The study was online in the journal Cancer.

http://www.npr.org/blogs/health/2013/09/09/220652531/why-younger-women-could-benefit-from-mammograms-after-all?utm_source=npr&utm_medium=facebook&utm_campaign=nprfacebook