, April 27, 2017 | More Post by

Julia is a Boober! who was invited to attend our “Renew, Restore, Retreat” this year and couldn’t make it. Since she’s many years out from her diagnosis, she had these thoughts to share about women who, like her, are at least a few years beyond treatment. We thought we’d pass along her insights and thoughtful words!

…I was diagnosed with breast cancer in 2008 at the age of 44 (stage 1, estrogen receptor positive).

I had a lumpectomy and radiation therapy. I think no matter how good or bad your diagnosis is, it is a very traumatic experience and very frightening. Somehow reason and common sense don’t quite work anymore. It’s a challenge to find a balance and normalcy. But during this journey and through many doctor’s visits I had some words that stuck with me for years. You were probably told that the survival rate is 12 years. In your state of shock you don’t really understand the meaning. For me, it sounded like a death sentence in 12 years. I could not find any reason or sense in these words. I went on a search for survivors of more than that. I became obsessed with it. I joined Dr. Reed’s support group, I went to a retreat offered by Beyond Boobs! several years ago, and took part at the event “Dancing with the Survivors.” But I never met anybody who was a survivor for more of 4 or 5 years. I know it would have helped me to know at least one long-term survivor.

Today I am cancer-free for 9 years. My check-ups have been all good so far, and I feel good. Besides minor long-term side effects from radiation (times of fatigue, sudden pain attacks in the area of radiation), I have a normal life. I also learned that my grandmother had breast cancer in her 60s (which I never knew), and that she died of old age. Without knowing, I had a long-term survivor in front of me. She passed away over 30 years ago, so she could never tell me her story. There is a life after breast cancer, and there is a very good chance to live a long life and grow old. I don’t worry about numbers any more. I try things that I always wanted to do. After “Dancing with the Survivors” I continued with ballroom dancing and now I am competing with my new husband in Standard and Latin ballroom dance. My second dream is to have my own business and I just started to work as a freelance Graphic Designer.

I met a lot of other survivors who also struggled with the “12 year thing”. Don’t focus on this, it only means that today’s survival rates are very good. Every person and every diagnosis is different, but with today’s treatment options we all have (in general) the best chances.

It is okay to worried and to be scared. Don’t let anyone tell you how you have to feel. You can grieve as long as you need to, and then you are ready to move on. This is your life, and you set the rules. You need to let out your grief and sadness to get your strength to fight. Beyond Boobs! is an amazing group of extraordinary women and I can’t thank you all enough for the support you give to each other.

Hugs and Love,

Julia

, April 20, 2017 | More Post by

I am not a doctor, only a Lymphatic Fanatic. I am a 10-year breast cancer survivor with Lymphedema in my right arm. I am one of the 30% of women who will get Lymphedema as a result of a compromised lymphatic system due to surgery, removal of lymph nodes, and radiation. In fact, all breast cancer patients and survivors are at risk if their lymphatic system has been compromised from any of the aforementioned treatments for breast cancer. I know this because I have done my research. Like some of you, I have thoroughly researched everything to death!

Research can be good. Being an informed patient is tantamount to recovery. Being your best advocate and striving for risk reduction and prevention of further disease and illness is our global goal and responsibility.

Like everyone else, I have a busy life and many goals. One of my goals is to exercise more because we all know that exercise plays a huge part in lowering our risk of recurrence. But does exercise conflict with people who have Lymphedema?  Is it recommended that we not do “too much?”

While it is true that not all individuals who have had lymph node disruption (surgical or radiological) will develop Lymphedema, until physicians can better predict who is at greater risk for Lymphedema, a slow and progressive approach to exercise is advisable. In fact, working up to a level of exercise that promotes fitness while avoiding exacerbating the Lymphedema is a good goal.

Exercise for Lymphedema may be beneficial, however the question is how much is too much? That is very individual. It is important that any exercise program be gradually progressed to avoid sprain/strain. More importantly, a slow progression allows the individual to monitor their affected limb or limb at risk for any sensation of aching or fullness that could indicate an overwhelming of the lymphatic system. I love yoga. That is my favorite exercise. Sometimes, however, I notice my arm swells more or begins to feel heavier than usual. It is at those moments that I reel myself in and weigh the benefits of either changing my pose to accommodate my arm or possibly suffer consequences of too much strain and eventual additional swelling. Over the past years, I have learned my body and specifically the cues it sends me. We all must learn and listen to our own bodies.

One fact is certain…. exercise for Lymphedema is best done with compression on the affected limb. Compression garments actually provide a new “tight” skin for the muscles to contract against, assisting in pumping the lymph out of the extremity into the central circulation. When Lymphedema exists, the remaining lymph vessels that are functioning are working double time to try to carry the load. Wearing compression bandages/garments provides support to the skin and to the lymphatic vessels directly under the skin, called the superficial lymphatic network. It is these vessels that help to carry the load when the larger vessels have been cut away from the lymph nodes or have been damaged.

Cancer gave me a whole “New Me.” I may not be able to play tennis anymore, but I can certainly achieve my exercise goals nevertheless. Become informed about Lymphedema if you are at risk.  Recognize that certain types of exercise are considered higher risk than others for individuals with Lymphedema. For example, high speed activities like tennis, bowling and racquetball, place more stress on our arms. In my case, tennis was “too much” for my affected arm.

Unfortunately, even the guidelines put forth in the “Risk Reduction Guidelines” of most Lymphedema Centers and Research Facilities are “anecdotal” at the present time, because of the lack of controlled double-blind studies to prove their efficacy.  In addition, some medical professionals have taken the position that the individual with a limb at risk (or with Lymphedema) should go ahead and pursue whatever exercise/activity they wish and “see what happens.” What they fail to tell us is that, Lymphedema is a chronic condition, which, presently, has no cure.

So as you strive for a better “you,” strive to be informed about Lymphedema and ways to lower your risk as it pertains to exercise.  Always be aware of your arm and any possible changes after exercising and for goodness sake, wear your compression garment!

Peace and Veggies,

Carolyn I. Newman

(Carolyn is the President of Warrior Wear, Inc. (www.warriorwear4u.com), and graciously shared this post with us.)*

 

*Here for the Girls is grateful for our guest bloggers and by sharing their experiences is not promoting or endorsing any particular products or services.

, April 13, 2017 | More Post by

Welcome to our “Pink Link Stories” blog series! These stories are from women who are a part of (or support) our virtual Pink Link community for breast cancer survivors (pinklink.org). Each quarter, we offer a new writing prompt — this quarter, we asked women to share their breast cancer story. We will publish a few of those entries* here (lightly edited for length and typos), and we’ll also be randomly selecting one entrant each quarter to receive a $50 gift card! If you want to keep up with future writing prompts, sign up for our newsletter here.*(Due to the number of entries, we cannot guarantee all entries will be posted on our blog and we reserve the right to post based on our discretion.) 

I was diagnosed with stage 4 inflammatory breast cancer (IBC) at the age of 38 on May 1, 2015. Before then, I was a fitness and nutrition geek. I worked out at the gym 5 days a week and did yoga at least 3 or 4 times a week. I was eating clean, organic non-processed foods. I have had this routine for almost 10 years. So when I got my diagnosis, nothing made sense, especially because there’s no history of cancer in my family.
IBC is an aggressive disease and it had already progressed to my liver and lymph nodes, so I was immediately put on the schedule to start chemotherapy. I had one week to prepare for my first infusion. One week to have my port put in; one week to do all the tests and scans; one week to see surgeons and fertility doctors; it was overwhelming. Because the cancer had already spread to my liver, my doctor said surgery was really not necessary. But I did six rounds of Taxotere along with Herceptin and Perjeta. And for 10 months I received Herceptin and Perjeta until I had a progression to my brain on August, 2016.
I complained with symptoms of blurry vision, headaches and numbness for about a month until my oncologist requested a brain MRI. The scan showed three lesions in my brain small enough to go with gamma knife (stereotactic surgery) instead of radiation. After the surgery I started chemotherapy treatment again receiving Navelbine. I took Navelbine for about three months until my next CT scan showed activity increasing in my breast. I am now on my third line of treatment receiving TDM1 plus Perjeta.
Looking back, I believe my symptoms started almost a year before diagnosis. I ignored the redness and itchiness I had for months. I just thought it was my hormones changing since I was approaching 40. Needless to say, I felt guilty for a long time thinking I could have gone to the doctor sooner. But I’ll never know if that would have changed anything. And that is something I work on to accept every day. Each morning I wake up and look at myself in the mirror and it’s still unbelievable to me that I am walk every day with cancer in my body. But each day I make the choice to continue to live and accept that my life now includes cancer.
Cancer has changed my life tremendously. It has reminded me of how resilient I am. It has helped me re-focus my life back to what is important to me and not sweat the little things. It has taught me how to live a meaningful life.

-Ada O.