Posts Tagged ‘understanding breast cancer’

Sharing My Experience With DCIS Helped Me Uncover My True Strength

April 2, 2014

Lori KolstadLBBC would like to welcome Lori who is sharing her breast cancer journey with us today. If you or anyone you know has been recently diagnosed with any stage of breast cancer please visit lbbc.org/guides for more information about our Newly Diagnosed publications.

 In an instant, life’s journey took me to an unexpected path.  A routine mammogram changed everything.  On May 9, 2013, Mother’s Day weekend, I was diagnosed with ductal carcinoma in situ (DCIS), often considered the earliest form of breast cancer, in my left breast. It was not a palpable tumor that I could feel with self-exam.  After hearing the biopsy results, I was terrified and in shock.  Breast cancer is not in my family history and I live a healthy lifestyle. I cook balanced meals, grow many of my own vegetables and shop the farmers market.  For the past 25 years, I’ve done cardio and aerobic exercise four times a week.

For five fearful days, I didn’t know how serious it was or what my treatment would involve. When things are uncertain, the mind often finds a way to gravitate to the worst-case scenario. When I met with a breast surgeon, the first thing he said to me was, “You will be okay. You caught this early, this is treatable, and you have options.”   Hearing his words snapped me out of my negative thoughts. I could see a future, I would be okay and I could do what I needed to do.  (more…)

LIVING BEYOND BREAST CANCER HOSTS CONFERENCE

March 21, 2014

Annual-Conference-for-Women-BannerHaverford, PA., Friday, March 14, 2014– Philadelphia-based nonprofit organization Living Beyond Breast Cancer (LBBC) has opened registration for its 8th annual conference for women living with metastatic breast cancer.  The event, Enhancing Your Health and Quality of Life, takes place Saturday, April 26 – Sunday April 27, 2014 at the Philadelphia Marriott West in West Conshohocken, Penn.

Breast cancer is considered metastatic (stage IV) when it spreads from the breast to another part of the body such as the lungs, bones, liver or brain.  There are approximately 152,000 women in the United States currently living with metastatic breast cancer and estimates indicate that advances in treatment and care will push that number to 164,000 by the year 2015.(1)  (more…)

Let’s Be Frank…

March 13, 2014

RondaWalker-27Regular LBBC blogger Ronda Walker Weaver is back, and with a topic not many are willing to discuss so frankly…sex. Read what she has to say about this three letter word and her journey with breast cancer…

Sex – the sometimes scary and painful 3 letter word for many of us cancer survivors. I went through surgeries, chemotherapy, radiation, and all of the horrible side-effects associated with these procedures. Nine months of struggling to stay alive, and now a year post chemo, I am just beginning to recognize myself. Sadly, hormones that may benefit our sex drive certainly affect our cancers (love those aromatase inhibitors), in turn affecting our bodies and affecting our libido. The research I’ve read says that about 70% of women who have had breast cancer treatments have some sort of sexual dysfunction, as opposed to 40% of women without breast cancer. Is there sex after cancer? Once intercourse was exciting, exhilarating, yet now I have a “sexual disorder/problem.” And I didn’t bring this upon myself – ahhh cancer, the gift that keeps on giving!

I have an incredibly loving patient husband who has been an amazing caregiver. And he’s waiting for me to give him the “come-here” eye. Most of the time he’s patient, sometimes he’s frustrated. I try to explain to him that my lack of sex drive is complicated. It’s not about him – really, it’s about me – emotionally and physically. But I’m tired of this entire process being about me!

I’m just beginning to be able to look at my body in the mirror and be OK with my reflection. Lopsided breasts, incisions, discolored skin, weight gain, hair loss, gray circles under my eyes – I’m alive, but there certainly have been sacrifices. Sexuality and femininity are both terms I’m having to redefine – and this has had an impact on our intimacy. (more…)

Poetry By Judy Koza

February 11, 2014

Judy

LBBC’s Writing the Journey is a 6-part workshop series lead by instructor Alysa Cummings designed to help you express and document your thoughts and feelings about your journey with breast cancer. Whether you are newly diagnosed, have recently completed treatment, are years beyond treatment, or are living with metastatic breast cancer, this writing series offers you a safe and creative outlet for processing and coping with your experience. No previous writing experience is necessary! Just ask Judy Koza, a former Writing the Journey participant who has been kind enough to share three of her poems with us today…

Cancer Scripts

I write as I speak, with reservedness
dealing with cancer with utmost control
Seeing the cancer world only through you
And him and her and everyone but me
I have over, or maybe under thought
All things cancer, to the point of blocking
Hiding, pushing, banishing it from me
I have willed it away, oh such restraint
To disconnect the beast from my body
And my everyday mind, not wanting to,
Not daring to connect with the “why me”
What lies on the other side of my fear
Do I peek over the wall to learn, or
Am I destined to recoil forever?

(more…)

How I Learned to Stop Worrying and Love Tamoxifen Part 2

April 25, 2013

Photo

Last week regular blog contributor Randi Rentz shared the first part of her journey with Tamoxifen, currently used for the treatment of both early and advanced ER+ (estrogen receptor positive) breast cancer in pre- and post-menopausal women. In December, 2012 The Lancet, one of the world’s leading general medical journals in Oncology, Neurology and Infectious Diseases published a report suggesting for women with ER-positive disease, continuing tamoxifen use to 10 years rather than stopping at 5 years produces a further reduction in recurrence and mortality, particularly after year 10¹. Here she continues her story…

Where were we?

Oh, yeah.

If I was a betting woman (I’m not anymore) I’d venture that based on ATLAS (the study published in The Lancet) sales of antidepressants to breast cancer survivors are poised to go through the roof. According to studies, taking tamoxifen can lower the risk of a breast cancer recurrence by up to 50%.  So, many women are more than willing to tolerate its side effects to remain free of their cancer.

But…

Many of these women are also taking antidepressants to help restrain the hot flashes, vaginal dryness, low libido and osteoporosis that the estrogen suppressor can cause.

Don’t get me wrong. This drug does help many and the new study has found that taking tamoxifen longer than five years can further reduce deaths from the disease.  The researchers studied a group of nearly 7,000 women with ER-positive breast cancer. The women were randomly assigned to stick to just five years of tamoxifen or to take it for an additional five years. The study found a significant benefit from remaining on tamoxifen for 10 years:  Women were less likely to have a recurrence of breast cancer, and they were less likely to die of breast cancer than women who took the drug for only five years.

Be aware, however, that after menopause, tamoxifen may increase the risk of uterine cancer.  It also may increase the risk of blood clots in the legs and lungs in all women. My legs are already throbbing thinking about it. So it’s like most treatments:  There are both benefits and risks, and you have to work with your doctor to balance them.

So, what’s my decision? We’ll, I’m 4 ½ years in and have already had a conversation with my oncologist, which is forever changing. At the moment, I’m going to go for 7 years. I’m cautious about laying in a lifetime supply of tamoxifen. I’m open to using different drugs over time, or listening to a new study that could come out reporting different results.  What I really want and need is effective prevention. Until that comes, I’ll work with the drugs that I have for now.

Be sure to check out Randi’s website and read the excerpt from her upcoming novel ‘Why Buy a Wig…When You Can Buy Diamonds!’.

For January’s Ask the Expert , Living Beyond Breast Cancer’s monthly online Q&A forum, Adam Brufsky, MD, PhD, answered questions about ATLAS, a major new study that has shown that tamoxifen treatment for estrogen receptor-positive breast cancer is even more beneficial when taken for 10 years instead of five. These questions were submitted during our January 9, 2013 webinar on News From the San Antonio Breast Cancer Symposium.

¹Long-term effects of continuing adjuvant tamoxifen to 10 years versus stopping at 5 years after diagnosis of estrogen-receptor-positive breast cancer: ATLAS, a randomized trial.  Published online December 5, 2012 in the Lancet, First author:  Christina Davies, MBChB, University of Oxford, United Kingdom.

For more of LBBC’s coverage of the ATLAS clinical trial, please visit our Spring 2013 issue of Insight our quarterly newsletter and additional news coverage.

A Daughter’s Breast Cancer Journey; Through Her Mother’s Eyes: Part 3 of 3

January 31, 2012

This entry was written by Nancy Amorosi. Many of you may remember Jaime Rossano, one of the year-long series bloggers who, in a raw and honest tone, shared her breast cancer journey from diagnosis to post treatment in 2011. In this entry, her mother gives us her perspective of the journey. Over the year, she tried desperately to hide her true feelings of fear that consumed her heart facing the reality that she could never handle the idea of losing her baby girl.

This concludes the  three-week series A Daughter’s Breast Cancer Journey; Through Her Mother’s Eyes

Read Jaime’s blogs by searching “Jaime Rossano” in the search box on this site.

Although a year has gone by and the days are no longer filled with constant appointments and treatments the ongoing reconstruction of her physical being and the rebuilding of her self image continues. Looking back over this past year brings back so many emotions. It was with the help of some very special friends and family that gave me the positive energy and strength to be strong and hold it together when I thought I could not make it through another day. My daughter became my inspiration. No mother should have to worry about losing her child. But, the reality is that this monster called “cancer” has no boundaries. We have learned that LIFE IS A GIFT~

Jaime has taken this experience and has made it her life’s work to spread the word of self breast exam to college students, to support and encourage others diagnosed with cancer, to share her heart with blogging her experience with LBBC, and starting a very special project called Cancer’s Secret Angels which provides beautiful baskets of goodies to newly diagnosed patients and sharing her story of hope to all who will listen. As her mom I could not be more proud of the way she traveled this journey.

My daughter Jaime is my hero and I am honored and privileged to walk beside her today, tomorrow and always!

I love you Sweet Pea

Jamie & Nancy

A Daughter’s Breast Cancer Journey: Through Her Mother’s Eyes: Part 2 of 3

January 24, 2012

This entry was written by Nancy Amorosi. Many of you may remember Jaime Rossano, one of the year-long series bloggers who, in a raw and honest tone, shared her breast cancer journey from diagnosis to post treatment in 2011. In this entry, her mother gives us her perspective of the journey. Over the year, she tried desperately to hide her true feelings of fear that consumed her heart facing the reality that she could never handle the idea of losing her baby girl.

Every Tuesday for the rest of this month, join Nancy as she recaps her daughter’s breast cancer diagnosis in a 3-week series.

Read Jaime’s blogs by searching “Jaime Rossano” in the search box on this site.

This year Jaime is getting adjusted to not having a blog deadline, having completed her year-long series in December of 2011. But the start of the 2011 New Year introduced us to chemotherapy and the words of one kind nurse that did not come true – “Oh Jaime, you are so young this will be a piece of cake”. So the infusions began. Within hours the color would drain from her face, the nausea would creep in and by evening and the days to follow she was sick, suffering headaches, bone pain, body aches, nausea and worst of all she lost her smile. My heart was in so much pain. I felt so incredibly helpless and could not bear to see our little girl suffer so much. I gave her a small red heart locket with little Ronnie’s picture inside. And when the light began to fade from her eyes I would whisper to her to look into her baby boy’s eyes and draw strength and courage to fight. I admit there were days for me too when darkness overshadowed the light and I would hold my grandson and almost magically felt a new sense of hope. Sure enough with each passing day the symptoms would fade and her smile would re-emerge giving us all a renewed sense of hope. Only to repeat this cycle again and again and again and again and again and again.

Within weeks of starting chemo the hair clippers buzzed and her locks fell to the floor. She could not bear to watch her hair fall out strand by strand so she took control and beat the monster called “cancer” to the punch. She wore a beautiful colorful bandana each and every day. We spent chemo days side by side and the five or six “sick” days to follow were filled with emotion, sadness, fear, laughter, anger, frustration, and emotional exhaustion. Our lives had developed a new “routine”. Seems silly but we actually got good at the routine of chemo week. But, they were also the most difficult, emotional and exhausting for both of us in very different ways. Somehow we found humor among the chaos. Days led to weeks and weeks led to months and before long chemo was done. The amazing strength, courage and determination in our daughter’s eyes week after week continued to give me hope.

Radiation therapy followed week after week and despite feeling tired and weak her resilience prevailed. She maintained her motto; be strong, be fierce, be ME! As time passed positive changes emerged. The importance of love, life and family took hold. No longer sweating the small stuff, living each day and not allowing the “what if” of tomorrow to ruin today became a new way of life.

A Daughter’s Breast Cancer Journey; Through Her Mother’s Eyes: Part 1 of 3

January 17, 2012

This entry was written by Nancy Amorosi. Many of you may remember Jaime Rossano, one of the year-long series bloggers who, in a raw and honest tone, shared her breast cancer journey from diagnosis to post treatment in 2011. In this entry, her mother gives us her perspective of the journey. Over the year, she tried desperately to hide her true feelings of fear that consumed her heart facing the reality that she could never handle the idea of losing her baby girl.

Every Tuesday for the rest of this month, join Nancy as she recaps her daughter’s breast cancer diagnosis in a 3-week series.

Read Jaime’s blogs by searching “Jaime Rossano” in the search box on this site.

It was October 2010 and life was “routine”. Our 27-year-old daughter Jaime was married and had given birth to our beautiful grandson Ronnie. Just months after completing breast feeding her son she came to me and said she felt a lump in her left breast. She immediately went for a mammogram and although the radiologist said to have an excisional biopsy right away, I was not overly alarmed. She was only 27 years old. However, day after day as we waited for the results a sick feeling began to emerge. The phone call came and the words “Jaime your results are positive, you have breast cancer” would change our lives forever. I held her tight, holding her up as her knees buckled beneath her and the tears streamed down her face. I somehow found the strength to hold it together and whisper “everything will be okay; I will be beside you every step of the way.” How does a mother respond when her daughter screams in fear “I don’t want to die mom, I don’t want to die.” And so our journey began.

I remember that evening after spending time with my husband and him holding me tight, I escaped to the bathroom to be alone and the floodgates opened, my body trembled and I slid to the floor, sobbing in disbelief. How could this be? This should not happen to our little girl, this should happen to ME! She is too young, a new wife, a new mommy, still going to school and working. How could this be? I remember feeling so guilty almost as if it was my fault.

I kept myself busy with phone calls, organizing research, doctors, family, friends, and gathering resources. She needed the best and it was my job to find it and we did. The following weeks were consumed with appointments, tests, more appointments. At this point the reality of what was really happening did not set in just yet. Jaime and I spent hours talking and crying and trying to make sense of it all. Despite feeling helpless to stop this monster called “cancer” I pretended to be strong and spoke only of positive and reassuring words. At the end of each day my bathtub became my sanctuary. A place to release my tears, my fears and collapse in anger and frustration and I would pray like never before. “Please God, don’t let my daughter die”.

The most agonizing memory for me was at 4pm on surgery day when Jaime was still in surgery and I had to leave to pick up my 18-month-old grandson from daycare. I stood before the elevator shaking and crying knowing I would not be beside her when she awoke from this nightmare as I had promised. I knew she would understand and would want me to get her baby boy home safe. I drove my car all the way with tears streaming down my face knowing in my heart she would be okay. My heart never felt so torn! Surgery went well and two days later she went home. I was amazed at her ability to tolerate the pain and remain upbeat despite what this monster “cancer” just stole from her. My days were long and nights were short, caring for her baby at night, getting him to daycare in the am, and then caring for Jaime during the day while cleaning, cooking, doing laundry, lying together watching movies and talking about the future and staying positive all the while. When evening fell it was back to my sanctuary and a bubble filled tub to collapse and allow my emotions to flow which would allow me to start renewed each day with a sense of purpose and hope.

Ronnie, Nana and Pop Pop

Tomorrow is another day…

January 4, 2012

This entry was written by Donna Helmes, a participant of the 2011 Fall Writing Series:

When I was a young girl, my father took me to see an afternoon showing of the movie, Gone With the Wind.   Just one look at the beautiful, larger-than-life Scarlett O’Hara and I was hooked.  I took many things about the story to heart, including Ms. O’Hara’s belief that “tomorrow is another day,” –  and, that there is always time to deal with things in the future. 

In my own life, I had put off a personal life to pursue my career. What about a serious relationship? A relaxing vacation? Having a family of my own?  Well, after all, tomorrow is another day…

Then in 2008, during a routine mammogram, an eagle-eyed radiologist discovered a mass.  After a diagnosis of breast cancer (invasive ductal carcinoma), a bilateral mastectomy and 4 rounds of chemotherapy soon followed. As I recovered from treatment, I was filled with regret over missed opportunities; I grieved for things I believed that I would never have. My heart broke at the realization that I would probably never have a child of my own.  I no longer believed in tomorrow.  I thought my life was over before it ever really had begun. 

I hated having breast cancer. Period.  I do not want any woman to have to face this diagnosis, nor do I want my cancer to return.  It was hard to go through treatment and to live with its aftereffects.  Yet, a funny thing happened on my journey through Cancer Town.  I stopped mourning my tomorrows and began to live for today.

I wanted to live my dreams. Most cancer patients have fantasies about climbing Mt. Everest or…running with the bulls in Pamplona. Me?  I didn’t think I needed a big life to have a great one. I started digging in my garden and discovered that I absolutely love flowers.  I bought a small house near the river with a wonderful area for roses and a vegetable patch. I took long walks and cut back on my hours at work.  I borrowed books from the local library and sipped wine at lunch with friends. 

I took a deep breath and signed up for a poetry writing class with Alysa Cummings through Living Beyond Breast Cancer. The idea of participating terrified me; therefore, I knew that it was the right thing to do.  I had never written poetry, though I had kept a journal for many years.  Interestingly, once diagnosed with cancer, I found I could no longer write a word.  At first, I attributed this to “chemo-brain,” but my writer’s block continued long after my treatment ended.  I realized that I was afraid to write. Scared to express how I felt, scared to release all those complicated emotions – anger, fear, resentment, uncertainty – that go along with having a diagnosis of breast cancer.  I feared becoming overwhelmed by them. 

Luckily, rather than being overwhelmed, I felt lighter and empowered by the class.  It provided me with a safe space to process my experience and I learned what being a breast cancer survivor means to me.  I found myself writing once again.  At night I would pop open my journal, excited to fill the blank pages. 

After treatment, and with the promise of a very good prognosis still ringing in my ears, I contacted the Social Services Adoption Division. Nine months to the day, they placed my daughter in my arms.  This summer, she and I chased butterflies and ate cherry tomatoes from our garden.  We celebrated the holidays and together we rang in 2012.

Meet Bella…

I have to say this was my best New Year yet and, though I am looking forward to 2012, I am enjoying living for today.

There will be a Spring Writing Series beginning in mid-March. Be sure to visit LBBC.org for more information.  This 2012, how will you define your breast cancer diagnosis and channel the devastation of your breast cancer into an outlet of positivity?

Patience heals all wounds

December 9, 2011

This entry was written by Jaime Rossano. Jaime was diagnosed with 2B invasive ductal carcinoma breast cancer. Jaime is a college student pursuing a degree in Humanities and Social Science Every other Friday, Jaime will share a blog entry about her breast cancer experience. This year-long blog series is in honor of LBBC’s 20th anniversary.

To read Jaime’s previous entries, enter “Jaime Rossano” in the search box on this site.

We are taught a lot of things while we are growing up: have patience; be respectful; respect your elders; look both directions before crossing the street; wait your turn; ask questions because there are no stupid questions. We are taught to make friends, not enemies; raise your hand; wash your hands; cover your mouth; help those who are in need; We are raised with values and morals that may differ from one another but all in all we are raised to be well-rounded individuals.

Over the past year there have been many situations where I have to dig deep and think back to when I was a child and what my parents have told me. You haven’t learned it all until you have experienced it all.  Experience is the key word here. I have to say you can teach me right out of the book but the only way to truly learn something is by experiencing it.

The countless hours sitting in the waiting room = Patience

Watching the people who have appointments after you go first= Take Turns

The endless tests that have to be run before you can move further through your journey = Patience

Being your own advocate to make sure you are receiving the best care possible= Ask questions

Sharing my story with others to let them know they are not alone = Helping those in need

The cranky nurses that seem to always have a bad day (I found out bring them candy and they will be your best friend) = Make friends, not enemies

Going through chemo you always have to be careful of germs = Wash your hands and cover your mouth

Parking lots at the hospital or doctors office are always dangerous – everyone is in a rush to get to nowhere = Look both directions before crossing the street

The comments of our elders sometimes are not the comments we are expecting, sometimes they do not have a very nice way of saying something or just say something that really gets under your skin = Respect your elders

The countless times you have to make doctor’s appointments and you need to be put on hold = Patience

Recovery time from chemo, radiation, surgery = PATIENCE

You will notice a common word throughout this blog and that would be PATIENCE. Many of us can say we have patience but it is not until our patience is tested to the max that we develop an understanding of the meaning of patience.

Since my surgery last week, patience has been a big issue for me. I am so tired of not being 100% and feeling great. I have learned that things take time to heal and after surgery your can’t heal over night. You need time and patience to allow things to heal. You need patience for the end result, you need patience with yourself, your body and your mind. So take a deep breath sit back and relax and learn to be patient. It’s not easy, but it is possible.

My son Ronnie makes my patience worth it!

We want to hear from you! How has your patience been tested during your breast cancer journey? Did you, like Jaime, learn to embrace patience in order to achieve a more seamless breast cancer experience?


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