YSC Pups Celebrate National Dog Day

National Dog Day celebrates dogs of all shapes and sizes. It honors the four-legged best friends who bring comfort during challenging times and joy into our lives every day. Instead of me talking about how incredible the YSC dogs are, I’m going to let them do the talking.


Preston

Preston loves showing off his handsome good looks

Hi! I’m Preston. My life changed about 3 years old ago when I rescued my mama and she introduced me to a life filled with sunshine! Now I travel around the country and attend different conferences. I love meeting new people–almost as much as I love dinner time! Follow my adventures on Instagram!


 

Emoji and Inky enjoying bro time

Emoji and Inky enjoying ‘bro time’ on the couch

Hey everyone! I’m Emoji and I’m a blind, deaf, rescue senior, and my brother is a rescued ewok! Collectively we have over 22k Instagram followers, and we help spread the word about adoption and senior rescue! I recently became the VP of Puglicity for Pug Squad and Inky is my security guard. In our spare time, we enjoy testing new recipes to share and hanging out with our insta-famous, rescue friends! I hope you’ll say hi on Instagram and Inky likes when he meets new Instagram friends too!


 

Rosie posing for the camera

Rosie showing off her paw modeling skills

Fun Facts About Rosie:
 – Loves napping and chewing on shoelaces and playing in the grass!
 –
I recently discovered my bark and it’s the most surprising thing! It works great for getting Mommy’s attention.
 –
My mommy says that I learn stuffs every day like new tricks and words!


 

Rocky the Best Man

Rocky made the perfect Best Dog

Fun Facts about Rocky:
 – My dad and I are the bestest and most perfect best friends! We love to relax and eat!
 –
Cuddling is my most favorite hobby!
 –
Sometimes I get away with sleeping in the biggest house bed with the humans, and when I do, I sleep just like them on my back and use their pillows for my head.
 –
My bark sounds pretty scary, but I swear I’m a big fluffy marshiemallow that wouldn’t hurt a fly!
 –
I’m not the most athletic in the family. I can walk about 20 minutes, but it feels like a marathon!


 

Zuko has perfected his puppy eye looking

Zuko has perfected his puppy eye look.

Fun Facts About Zuko:
 – My mom says I look like a teddy bear.
 –
My favorite activity is nibbling on human ears! They taste so good!


 

Tex and Phoebes sharing a Starbucks Puppuccino

Tex and Phoebe love sharing a Starbucks Puppuccino

Hey. I’m Phoebe and my annoying sister’s name is Tex, but everyone calls her Tex Mex. Two years ago she came to stay with us as a foster and she’s overstayed her stay by like 1 year, 11 months and 28 days. But she can be fun sometimes. Mom gets mad because we play fight all the time and it usually ends with humps, but it’s just teenage angst. UGH parents! Just check out my Instagram and you’ll see how weird and annoying my little sis is.


 

Maggie at the park

Maggie loves being outside with her favorite Frisbee

Fun Facts About Maggie:
 – My favorite thing is to catch my frisbee outside
 –
I love my Mom’s job because her work stuff is in our house and sometimes I get to chime in on conference calls.
 –
Mom says I have too much energy for my own good. I don’t know what that means, but it doesn’t seem true.


 

Lila and Gigi playing

Lila and Gigi say the big bed is perfect for afternoon play time.

Hi, I’m Gigi and my sister is a baby giant, but we call her Lila. We’re professional singers; I’m the 1st Soprano and Lila is the 2nd Alto. Lila was the runt of her litter and she only has 7 toes on my back paws because her mom bit them off (OUCH!)! I’m super special because it’s very rare for a schnauzer to be solid white! We both love to go swimming in the creek, but I usually go exploring while Gigi stays and plays in the water. My sister is way more into social media than I am, but you should follow along on her adventures!


 

Drew staying cool on

Drew knows how to stay cool and comfortable

Fun Facts About Drew:
 – I played matchmaker for my mom because I have the same name as my dad. Having the same name makes a great conversation starter.
 –
When it comes to pooping, I prefer to go in the middle of the road. Mom says it’s awkward, but I don’t understand why.
 –
My favorite place is the beach! Wait, did someone say BEACH?! CAN WE GO TO THE BEACH! OMG I LOVE THE BEACH!?! OMG

 

Not sure how you’re going to celebrate National Dog Day?

 – Donate to the Louisiana State Animal Response Team who is currently aiding the animals and families affected by the historic Louisiana floods
 –
Teach your dog a new trick.
 –
Volunteer at your local shelter. Many shelters need help socializing and walking dogs.
 –
Take your dog to a local park or beach.
 –
Assist an ill or elderly neighbor by walking their dog.
 – Donate blankets, towels, toys and food to animal welfare organization.
 –
Check out some of these National Dog Day ideas!

 

 

Leave a comment
Categories: YSC Behind the Scenes

Just Keep Knitting

I’ve been a knitter off and on since I was twelve. In my thirties, I started getting serious about advancing my knitting skills and learning how to incorporate knitting into my career as a therapist. It was fun to challenge myself by learning new patterns and stitches and the repetition in knitting made it a good way to unwind and relax.

This green scarf was a knit-a-long challenge I worked on during diagnosis and treatment planning.

Little did I know that using knitting to relax would be put to the test after I had my first mammogram. My doctor recommended a baseline mammogram but at the time, I wasn’t worried about breast cancer. I even put it off for a year before going in December 2014 because I had no family history or a lump. I remember knitting in the waiting room for my mammogram and for the subsequent ultrasound that I ended up needing. I kept knitting as I watched women come and go for their exams while I was still waiting. Knitting helped to quiet the “what if” voice that kept trying to push through my mind.

When I waited to have a biopsy because of my ultrasound results, I kept knitting to calm my worries and help me focus on the moment. It was also a great conversation starter as other women in the room asked about my knitting. Even the nurse performing my biopsy was a knitter!

On January 2, 2015, I was diagnosed with DCIS. Following my diagnosis, I knitted at every doctor’s appointment, as we decided the best treatment plan, while I waited to go for my double mastectomy, prepared for my reconstruction, during recovery for both surgeries and as I dealt with losing my job. Through all this, I just kept knitting. “Can I keep knitting?” was at the top of my question list for every doctor.

I knitted for so many reasons during this time. To help me cope with questions like What next? Why me? Why now? I knitted when information and choices became too overwhelming. I knitted as my sister and husband were discussing options with doctors. Knitting was something I could control during an out of control time in my life. I was able to follow patterns and create beautiful pieces in the process. The more I knitted, the more I felt like myself. I could even see my recovery in my knitting.

IMG_4439

I knitted this purple sweater for my niece. I felt very out of control between recovery and my job situation so I started the sweater as a way to focus my energy.

Looking back, it’s clear knitting helped quiet the background chatter in my head and process the information so I could make the best decisions for myself. There were still plenty of moments of tears, anxiety and anger, but I have no doubt that knitting helped me through those times. A few pints of gelato also helped. I am lucky since my cancer was caught early and today I am healthy with no evidence of disease. Every few months I need follow-up appointments and you’ll find me in the waiting room of my oncologist’s office knitting away. I cannot control the outcome of those follow-up visits, but I can control my knitting.

Now, I teach knitting as a tool to help others cope with challenges in their lives and manage their anxiety. I’ve seen the benefits of knitting as it helps people cope with unfavorable diagnoses, substance abuse and the anxieties of daily life. Whether you’re an expert or new to knitting – it offers you control and a hobby you can share with others.

Read more about the research and science behind the therapeutic benefits of knitting here:

Sticklinks
Project Knitwell

Interested in learning how to knit or want to connect with knitters in your area?

Ravelry
American Craft Council 
Knit Purl Hunter

 ***

Thank you, Andrea, for sharing how knitting helped reduce anxiety and cope with your breast cancer diagnosis and treatment!

We have a number of helpful presentations from others on maintaining emotional wellness during and after breast cancer. Check out a few here:

Survivor and Self: Nurturing, Wellness, Becoming Whole Again by Jean Rowe, LCSW, OSW-C, CJT (PowerPoint Presentation)

Surviving and Thriving Ever Day of My Life by Kimberly Jewett

Living Fully With, Through and After Cancer by Tambre Leighn, MA, CPC, PCC, ELI-MP (PowerPoint Presentation)

Clearing the Clutter – Mental & Physical Space by Carolyn Koehnline, MA (Presentation Document)

Journaling: Healing with Words by Howard M. Rice

Managing Fear of Recurrence and Anxiety by Julie Larson, LCSW
(PowerPoint Presentation)

Connecting with others who understand is also a great way to work through anxiety. Sign up for the upcoming In-Treatment Online Video Support Group or reach out to the amazing women in your local Face 2 Face Network.

 

 

Leave a comment

This Casual Cyclist Did It!

I am a casual cyclist. By casual I mean, I have a bike and I very occasionally ride it very short distances. Ever since I’ve been on staff at YSC (5 years now!), I’ve been intrigued by Tour de Pink, but it always seemed like something impossible for me. How could I ride that far? It seemed like an awesome event, but something for serious cyclists only.

Last year when YSC announced the Inaugural Tour de Pink South, which claimed it was an easy, flat course, something in me made me hit the register button. I had grand plans of becoming a serious cyclist in that time between hitting register and the actual ride, but that didn’t quite happen. I started off strong(ish) with 3 short bike rides the first week I was officially signed up. However, one thing I didn’t really account for was Midwest weather. The cold settled in and this casual cyclist wasn’t about to go for a ride in the snow! I spent a little extra time at the gym over the winter and waited for spring. Our spring was cold, rainy and windy. I officially logged a 4 mile ride and a 12 mile ride outside before heading to Florida for Tour de Pink South. Needless to say, I was terrified! I felt so unprepared and just knew it was going to be a disaster.

While my training was certainly lacking, I decided this was a once in a lifetime event for me and I was going to have fun. I knew there would be amazing support along the course and if I couldn’t ride that far, or fast enough, there would be some pretty great SAG vans to help me out. When all the riders gathered for breakfast before the ride started on Friday morning, I felt totally intimidated. I was in a room full of really serious cyclists. We gathered at the starting line and just as I was about ready to fake an injury or illness, they called all the survivors to the front. Wow. It was simply amazing to see the number of young breast cancer survivors that were riding. For some, they were already cyclists, but for many, this was an opportunity to take their body back after cancer, to show they could do something amazing and that’s when I remembered why I was riding. I was going to attempt to ride my bike 200 miles because I could and because there are too many young women who can’t.

Once the ride started, I found my rhythm. I found groups of other cyclists going my pace and I just pedaled. And I did it. I rode nearly all 200 miles of Tour de Pink! This out of shape, very casual cyclist did it!

Riding in Tour de Pink changed me. It turned this casual cyclist into a not quite as casual cyclist who has signed up to ride in three organized long distance rides this summer. It has given me confidence in myself as a cyclist. More importantly, it made me even more committed to ensuring young women facing breast cancer have the support and resources YSC is able to provide because of the money raised riding in Tour de Pink.

I can’t wait to ride in the second YSC Tour de Pink South and I’d love for you to join my team! So if you are even a little bit interested but aren’t sure if you can do it, or you think spandex shorts aren’t your thing—you can do it! Believe me, if I can do it, so can you! Not to mention 200 miles on a bike will have you loving padded cycling shorts in the end.

***

Interested in joining the ride of a lifetime?
Registration is only $75 if you sign up between now and August 31!
Use discount code EarlyBird and register here.
This is the biggest discount offered for the ride, so share it with your friends and family to help you build your team or join Mary’s team! The team with the most riders registered by October 1 will win a free team photo taken by the professional photographer at the ride.

See you in the Sunshine State!

 

Leave a comment
Categories: Tour de Pink

August Research Round-up

Staying current with recent breast cancer research news, especially when it pertains to young women, is essential. It is also important that young women participate in ongoing research so that our population is well-represented in data and the results meaningful to young women.

Here we have gathered recent research articles, ongoing studies, surveys and events that may be of interest to you. Be sure to follow us on Facebook as we regularly post pertinent research information as it becomes available.


Studies Seeking Participants:

Metastatic Breast Cancer Collateral Damage Project
If you have metastatic breast cancer, the Dr. Susan Love Research Foundation wants you to share your real-life experiences of living with the disease. They need your help to capture and quantify all the life-altering impacts – the collateral damage – of MBC and its treatment so the organization can later offer specific recommendations to improve quality of life for all people with MBC. Complete the Metastatic Breast Cancer Collateral Damage Project questionnaire today to help make a real difference.

The Impact of Chemotherapy and Radiotherapy for Breast Cancer on Cognition and Functional Performance
Are you nearing completion of chemo or radiotherapy for early stage breast cancer?  If so, please consider participating in an online study on the Impact of Chemotherapy and Radiotherapy for Breast Cancer on Cognition and Functional Performance.  You will take a survey at 3 time points (end of treatment, 3 and 6 months later).  This study is IRB-approved and managed by a researcher who is a young breast cancer survivor! Click here for the survey. For questions, contact Ann Marie at pottera2@vcu.edu    

The Survivor Insomnia Study
Dana Farber is recruiting cancer survivors in the Boston area who are experiencing insomnia to compare a new 4-session group behavioral intervention to a standard, single-session group educational intervention for improving sleep. Participants will complete questionnaires at the beginning of the study, as well as 6 and 12 weeks later and be asked to keep a sleep diary. No medications are involved. After the study, participants will have the opportunity to take part in the group to which they were not randomized. If you would like to participate or have questions, contact a study coordinator at 617-582-8260 or survivorship_research@dfci.harvard.edu and a member of the study team will respond. You will be asked a few questions to determine whether or not you are eligible for this study.


Recent Research Results:

Neratinib after trastuzumab-based adjuvant therapy in patients with HER2-positive breast cancer (ExteNET): a multicentre, randomised, double-blind, placebo-controlled, phase 3 trial
Interesting news in HER2+ breast cancer.  Recent study results showed that use of an oral agent called Neratinib for one year after completing Herceptin in patients with early stage HER2+ breast cancer reduced the rate of recurrence and death by 33% versus placebo.  For patients who were also ER+, the reduction in recurrence or death was 41%.

FORCE XRAYS Quarterly Digest For Spring 2016
FORCE XRAYS separates the help from the hype. The XRAYS third Quarterly Digest is a compilation of this quarter’s research reviews, empowering young breast cancer survivors and those at high risk with an understanding of what is being said in the media about breast cancer, and and the information necessary to make informed decisions. 

Adaptive Randomization Pairs Two Treatments With Two Breast Cancer Subtypes
Results of two studies taken from the I-SPY 2 trial showed that the use of adaptive randomization in a phase II trial was able to successfully identify agents that would be most effective at treating certain molecular subtypes of breast cancer. Here, neratinib was found to be effective in HER2+ breast cancer and veliparib (a parp inhibitor) in combination with carboplatin showed effectiveness in triple negative breast cancer.

Young Cancer Survivors Lack Information on Fertility Issues and Options
Young adult female cancer survivors have unmet informational needs and decisional conflict regarding post treatment fertility preservation (FP), according to results of a new study. The results suggest survivorship care has gaps with regard to reproductive health counseling.


Advocacy & Upcoming Partner Events:

URGENT: Call Chairman Fred Upton Today!
Congress may be in recess, but we need to continue pressing the House Energy and Commerce Committee to bring HR 1197 (Accelerating the End of Breast Cancer Act) to the floor for a vote!  With over 270 bipartisan cosponsors, this bill needs to move forward. Click here for contact information and help in crafting your message.

FORCEs Against Hereditary Cancer Conference
Does cancer run in your family? Have you had genetic testing or are you considering it? Do you want to learn the latest information about cancer genetics, targeted therapy and options for detecting, preventing and treating hereditary cancers? Attend the annual Joining FORCEs Against Hereditary Cancer Conference, October 6-8, 2016, in Orlando, FL.  Featuring world experts, this comprehensive program offers sessions on guidelines, research, medical decision-making and communicating with family members. The conference provides opportunities to network, participate in research and ask leading experts questions about hereditary ovarian cancer.  Attendees include survivors and high-risk individuals affected by hereditary cancer as well as patient advocates and health care providers who treat high-risk patients. Learn more and register today!

 

 

Leave a comment
Categories: News & Updates

Newly Diagnosed? Get Organized!

“You have breast cancer.” Those are scary words! So, now what? Where do you even go from here as you come to terms with the challenging road that lies ahead.

As you start to meet with your healthcare team, you’ll have a lot of information to digest. We put together a comprehensive guide to help you prepare for your next appointment. The more you organize, the less overwhelming things may seem. As you learn about your diagnosis, meet your healthcare team and discuss treatment options, it will be helpful to have all your notes as well as records and contact information. Here are a few tips for staying organized and informed:

Ask questions! The more you understand, the easier your decisions will be. Don’t leave the room until all your questions have been answered. Bring someone with you, especially in the beginning, to help you keep track of your questions, take notes and just be an extra set of ears.

Write it down! Keep a notebook or your Newly Diagnosed Navigator with you so you can jot down questions or thoughts anytime. Writing it down will help you remember it later. You can also record your appointments on your phone to listen to them later. You can download free iPhone apps here or Andriod apps here.

Get copies of everything! Store all your medical records, including your pathology report and any diagnostic tests in one place. Even the notes your doctor makes during every appointment can be included as part of your medical files. You have a right to all of this information. There are lots of reasons you should have copies of everything, including making it easier to seek a second opinion and helping you during tax time so you can claim the most deductions.

NDN_2014_coverChecklist for Your Appointments:

 – Your Newly Diagnosed Navigator
 –
Questions for your doctor(s)
 –
A list of your current prescriptions
 –
Notebook and pen
 –
Someone else to take notes or a way to record your appointment (voice recorder)

We also turned our most popular planning worksheets into fillable PDFs that you can download, edit and then save on your computer. Take them along to your appointments to help you communicate with your healthcare providers.

To use our fillable forms, open the document, save the PDF to your computer then work directly from the saved document.

Appointment Log
Healthcare Provider Contact Log
Side Effects Diary
Insurance Contact Log
Insurance Payment Log
Medication Log
Pathology and Diagnosis Record

Leave a comment

Categories: Resources & Support

Celebrating National Health Center Week

TwitterHeader-girl-ENGToday marks the start of National Health Center Week, which highlights the great impact of community health centers across the nation. Over the last 50 years, these health centers have provided invaluable preventive and primary care services to underserved populations–helping to reach vulnerable populations who may not otherwise have access to vital healthcare services. Through their extensive network of over 9,000 sites, community health centers provide care to approximately 24 million patients, including those who cannot pay or do not have health insurance.

We recognize the key role of community health centers in providing high quality healthcare to their communities in a way that is affordable and cost-effective. Through their culturally appropriate, linguistically supportive and community-focused programs, these centers provide essential services to young women affected by breast cancer and their families. From primary care to screening programs, community health centers serve as the “medical home” for many and ensure more young women diagnosed with breast cancer receive the ongoing cancer care and survivorship support they need.

Additionally, many patients rely on these centers for their regular health screenings. Whether it’s an annual check-up or a visit for a suspicious lump, the centers may be where a young woman discovers her cancer diagnosis. Primary care doctors often provide the first step in detection, referrals and appropriate follow-up care. Many community health centers also provide important ancillary programs like behavioral health services. We’re so appreciative of the support that community health centers offer underserved young women and their families as they enter the unfamiliar territory of a cancer diagnosis.

If you would like to utilize the services of a community health center in your area, you may find a location by entering your zip code. If you are uninsured, you can also find out about your health insurance options through the federal healthcare.gov website.

Learn more about the National Association of Community Health Centers’ advocacy work, research, programs and partnerships here.  

Everyday we encourage you to be your own best health advocate. Take some time to learn about the reliable resources available to guide you in scheduling additional health screenings. It’s important to remember–especially for young women affected by breast cancer–that some screening recommendations may be specific to your health and family history. Ask your doctor what is right for you. 

Below are additional medical care resources:

Secure Payment: Managing Your Health Insurance

Financial Assistance for those living with metastatic breast cancer

Long-term Survivorship information

Also encourage your loved ones to do the same by being in charge of their health! Everyone can benefit from health reminders and the comprehensive resources available.

 

 

Leave a comment
Categories: Taking my Body Back

State Leader Shout Out!

As an organization that helps support young women affected by breast cancer, we come across people who want to do more. They want to help spread the word that young women can and do get breast cancer.

Many times these are women who found support in what we offer and wish more people knew about the free programs and resources available. That’s why we created the State Leader program – an awesome way for you to assist in spreading awareness and helping others.

State Leaders are volunteer breast cancer advocates who represents YSC in their state. They assist in extending YSC’s mission by providing support to young women in their communities who’ve been affected by breast cancer and by participating in healthcare provider outreach, education and awareness activities throughout their region.

We’re always looking for new State Leaders in any state, but especially in Oklahoma, Iowa, Vermont, Rhode Island and Delaware.

Right now, I’m happy to report that we have 139 State Leaders in 45 states!

sl map

In the last year alone, we had 62 new State Leaders join the team. They’ve already done amazing work in their local communities and beyond.

A HUGE welcome to our newest State Leaders

Shoutout

I reached out and asked our State Leaders what they found most rewarding about the program:

“I enjoy making connections with new members, sharing my story and offering comfort. Just knowing someone else had gone through what they’re going through is a sign of comfort they needed.”

“Being a catalyst for effecting change.”

“I feel very honored to be part of YSC. Being a State Leader allowed me to feel like I was ‘paying it forward’ to be able to share with others and raise awareness for the organization.”

Being a State Leader may be best summed up by this remark from one of our State Leaders:

qyote

A huge thank you to ALL of YSC’s amazing State Leaders. It is because of YOU that we’re able to reach more young women across the US and ensure they’re educated and empowered when facing breast cancer.

Interested in becoming a State Leader? Learn more about qualifications and complete an application today!

State Leader Shout Out!!!

 

 

 

 

 

Leave a comment

Pregnancy & Breastfeeding After Breast Cancer

My husband, Matt, and I had always planned to have at least two children. After my breast cancer diagnosis at age 27 while five months pregnant with our first child, we weren’t sure anymore. A normal pregnancy quickly changed into a high-risk one while I underwent a mastectomy and three months of chemotherapy. The day after my last treatment, our son, Parker, made his entrance into the world five weeks early, but completely healthy.

In Parker’s first year, I was so afraid of a recurrence that I missed out on some of the joy of his milestones. The further out I got from my diagnosis, the more my fears lessened. I became more confident in my body again, and Matt and I began talking about having a second child.

At my two-year (post-treatment) appointment, I asked about having a second child. My oncologist raised his brow and said, “The longer you wait, the happier I’ll be.” At the time, it was believed that women with estrogen-receptor positive cancers may be at a higher risk for dormant cancer cells to become active again because of hormone surges during pregnancy. My tumor was estrogen-receptor negative, but it was slightly positive for progesterone, which is also elevated during pregnancy.

Despite his concerns, my oncologist also shared a positive study showing that pregnancy after breast cancer can have a “healthy mother effect.” I still had unanswered questions, but I was encouraged. I had been told  that surgery would not hamper my fertility, but chemotherapy might, so we weren’t even sure I would be able to get pregnant.

As I approached my three-year mark, my surgeon thought it would be fine to add to our family but Matt and I decided to wait another year. Soon, however, I realized my cycle was late. When a home test confirmed I was pregnant, I was shocked, excited and nervous. The first person I contacted was my surgeon, who was so happy for me. I felt instantly more at ease. She said that she would follow me closely during the pregnancy with visits every two months, which made me feel more confident.

In my sixteenth week of pregnancy, I felt a lump in my right breast. This couldn’t happen again? I panicked and called my surgeon. She didn’t think it felt like a cancerous tumor, but she performed an ultrasound and everything looked good. She told me to stop touching it and to come back in four weeks. It was so hard not to touch the lump. I obsessed over it. But four weeks later, the lump had disappeared. And the rest of my pregnancy went smoothly.

Emma and Jen (4 months old)

Emma Grace at 4 months old.

It was so nice to experience a normal pregnancy this time. Chasing after a toddler helped the time go by quickly. Matt and I welcomed Emma Grace into our lives in April 2003. I decided I wanted to try nursing, even if I could do it only from one side. If women can breastfeed twins, I thought, I can breastfeed a baby from one breast.

I had not had reconstruction yet, so I put Boobsie (the nickname I gave my breast form) into a nursing bra and it worked great. I breastfed Emma for six months from one breast, supplementing with formula. It was an experience I was denied with Parker, because my milk never came in. Although painful in the beginning, it was wonderful to see my breast as something beautiful again, instead of an enemy.

August is National Breastfeeding Month. You have likely heard that breastfeeding has been shown to be protective against breast cancer and beneficial for your baby. Of course, breastfeeding is not always an option and this makes you no less of a mom. This great article shares what you might expect, based on your cancer treatments and surgery.

Other helpful resources:

Learn more about fertility preservation, family planning and options after breast cancer treatment.

Can I get pregnant after breast cancer and when?

Research on pregnancy after breast cancer:

Pregnancy After Diagnosis Doesn’t Seem to Affect Recurrence Risk

Outcome of patients with pregnancy during or after breast cancer: a review of the recent literature.

Looking to help further knowledge on pregnancy during and after breast cancer?

POSITIVE Trial will capture data on pregnancy rates and outcomes on ER+ breast cancer, allowing women to take a “baby break” to go off of Tamoxifen, thus helping to determine the optimal timing for women on endocrine therapy.  

Pregnancy and Cancer Registry collects information about the diagnosis and treatment of cancer in pregnant women.  It also follows breast cancer survivors who have a child after cancer to assess the health of both the mother and child long-term.

Download or order a free copy of YSC’s Post Treatment Navigator, which includes a section on fertility and other topics.

Talk with other women who have had children after breast cancer online through YSC’s Discussion Boards or in-person via SurvivorLink

For more about Jennifer’s story: Battling Breast Cancer While Pregnant

OLYMPUS DIGITAL CAMERA

 

 

 

 

Leave a comment

That’s What Friends Are For

I am writing this from Montreal, about 350 miles from my home in New York City. I came for my cousin’s wedding, and that was lovely—but I arranged my return trip around the chance to see my YSC friend Theresa, a native New Yorker who now, with her husband and two lovely Canadian-born girls, lives here.

Angie and me at Sunday brunch when she was visiting New York.

I’ll see Theresa tomorrow—but I woke up this morning in my little AirBnb bedroom with the day unplanned before me and in a somewhat melancholy mood. The last time I was in Montreal was for Angie’s memorial. Angie, a bright light in the lives of so many of us in YSC. Angie who made us laugh till we cried; Angie who took it upon herself to head up so many “card showers” when YSC sisters needed extra support. Angie who was diagnosed just as she was about to take a great job out of law school, but who, due to failing health, never got to start that job. Angie, so smart, so incredibly kind—who, even with far too little time on this planet, made her mark in so very many ways. Here in Montreal, Angie’s home city, I wish so dearly that I could call her, see her face.

People ask me, sometimes, why I stay involved in YSC as I do. Why, when the news can be bad? Why, when there can be losses? Why would I continue to leave myself open to that?

The answer is as complicated, and as compelling, as life itself. Actually, the answer pretty much is life itself—which to me and to many of my YSC friends has even greater intensity and clarity than it did before cancer. Intensity because, yes, there can be losses, but even as we grieve, we are reminded to live our lives in the richest, fullest ways we can. And clarity in that what matters, and what does not, tend to stand out more obviously to us now, helping us make meaningful choices.

Like: Go to the loved one’s birthday party—hell, help plan the party. Celebrate every success, your own and others’. Travel. Send a gift; send a card (cost is not the point; send from the heart). Make the phone call; make the plan to meet. Go to the concert that makes you smile in anticipation. Tell those you love how you feel. Maintain healthy boundaries in draining situations. Touch base with your hopes and dreams—are they getting a fair share of your time?

My YSC friends—in NYC, all over the country, and in other countries too—help me remember to live this way, and they do it with me. Together, we strive; we celebrate; we try to keep perspective. And yes, if there are losses, we mourn together, too. The question is not why I would stay involved but why I would not. My YSC friends, and my engagement in the organization, help me to remember what matters in life.

As for today: I sent a message to YSC-er Sarah, who had mentioned possibly meeting up while I was here. I had absolutely no expectations, as 1) she lives two hours away and 2) she has never even met me in person before. But to my astonishment, Sarah is on her way. We will walk the streets of Montreal together.

Pamela is a writer, editor and young survivor based in NYC. You can read more of her work at communally.wordpress.com.

***
Tomorrow is the International Day of Friendship, proclaimed by the United Nations in 2011 in an effort to inspire peace and build bridges between communities. Today, more than ever, we need to celebrate our friendships—new and old, far and near. If you’re newly diagnosed, or if you’re just finding YSC, there are lots of ways to make friends with someone who has been right where you are—someone who will celebrate your wins and mourn your losses, someone who may well drive several hours to spend the day with you, even though you have never met in person before.

Connect online through our Online Video Support Groups or our Private Facebook Group.

Meet in person at one of our conferences.

Join a local Face 2 Face meet up.

Leave a comment

Vascularized Lymph Node Transplant: New Hope for a Big Problem

Lymphedema—permanent swelling in the arm or breast following removal of lymph nodes—is typically not a big concern for women initially diagnosed with breast cancer.  The clear priority is to treat the tumor, which leaves lymphedema on the back burner…until it becomes an issue. The problem is lymphedema is permanent, often worsens over time, and affects millions of people in the U.S. alone, but almost no one in the public has ever heard of it.

We do not know why some people get lymphedema and some don’t. We do know that it is not caused by a simple “blockage” at the level of the lymph node; it is caused by the immune system releasing certain inflammatory poisons that destroy your lymphatic vessels over time. The lymphatic system is the sewage system of your body and carries fluid waste (lymph) to your lymph nodes where billions of immune cells “purify” the waste by destroying bacteria and return this fluid to your bloodstream. Without this delicate organ intact, fluid accumulates, and you are at risk for developing serious skin infections called cellulitis. Over time, the fluid is often replaced by fat and scar. Early treatment with decongestive therapy by a certified lymphedema therapist is essential. This typically involves compression wrapping, specialized massage (manual lymphatic drainage) and ultimately wearing a lifelong custom compression garment.

There are fortunately some new advances that have been effective in treating lymphedema using microsurgery. One technique we routinely use is called vascularized lymph node transplant. This involves transplanting lymph nodes from one part of your body to the limb that has lymphedema, essentially replacing what was removed during surgery. It is not typically a cure, although some patients no longer require compression if they are treated very early in the disease process. One concern has been the risk of causing lymphedema in the area where lymph nodes are harvested for transplantation. This risk has been minimized by using a technique called reverse lymphatic mapping. More recently, we have completely eliminated this risk by using the omentum which does not drain any of the extremities. The omentum is a carpet of fat inside the abdomen which contains lymph nodes and a rich lymphatic network. Lymph node transfer is typically 3-4 hours and requires coordination with a certified lymphedema therapist post-operatively.  Results can take months or even over a year.

Symptoms of heaviness or very mild swelling may be the tip of the iceberg. A new imaging technology called indocyanine green (ICG) lymphangiography can uncover significant damage to the lymphatic system before swelling is obvious. These new technologies have opened our eyes to the lymphatic disease similar to the way mammography and breast MRI has led to early detection in breast cancer. Both medical and surgical advances in this field will continue to improve as lymphedema awareness increases.

Things to know about lymphedema:

 – Cellulitis (skin infection) in the arm or breast can be serious, having antibiotics on hand may be a good idea if you are prone to infection.

 – Risk of lymphedema is about 5% following sentinel lymph node biopsy, 20% following removal of all axillary nodes, and higher if you had radiation.

 – Risk of lymphedema is increased with increasing body weight.

 – Early treatment with certified lymphedema therapist is essential.

 – Vascularized lymph node transfer can be effective at reversing symptoms of lymphedema.

Breast cancer survivor with barely noticeable swelling in the left arm, complaining of heaviness.

Breast cancer survivor with barely noticeable swelling in the left arm, complaining of heaviness.

ICG Lymphangiography of the right upper limb showing normal lymphatic vessels.

ICG Lymphangiography of the right upper limb showing normal lymphatic vessels.

ICG lymphangiography of the left upper limb showing destruction of lymphatic vessels in the upper arm (the area of the white blush).

ICG lymphangiography of the left upper limb showing destruction of lymphatic vessels in the upper arm (the area of the white blush).

Breast cancer survivor with vascularized lymph node transplantation before its effect (left) and after 2 years (right).

Breast cancer survivor with vascularized lymph node transplantation before its effect (left) and after 2 years (right).

 

***

Thank you so much, Dr. Dayan, for highlighting this new technique to help reverse symptoms of lymphedema in young women affected by breast cancer!

More information on lymphedema can be found below:

What is lymphedema and will I get it?

How can I prevent lymphedema?

Lymphedema: Prevention & Management (audio)
Speaker: Jill Binkley, PT, MSc, FAAOMPT, CLT

 

 

Comment (1)