New Report: 2012 Cancer Facts, Figures & Survivorship Information

The number of Americans with a history of cancer is growing due to the aging and growth of the population, as well as improving survival rates. In response to this demographic trend, The American Cancer Society (ACS) and the National Cancer Institute (NCI) compiled a comprehensive survivorship report providing current and projected cancer prevalence estimates for the United States, information on the common effects of cancer and it’s treatment, and survivorship resources.

The ACS defines a cancer survivor as any person who has been diagnosed with cancer, from the time of diagnosis through the balance of life. There are at least three distinct phases associated with cancer survival, including the time from diagnosis to the end of initial treatment, the transition from treatment to extended survival, and long-term survival. In reality though, survivorship encompasses many different scenarios including:

  • Living cancer-free for the remainder of life
  • Living cancer-free for many years, but experiencing one or more serious complications of treatment
  • Living cancer-free for many years, but dying after a late recurrence
  • Living cancer-free after the first cancer is treated, but developing a second cancer
  • Living with intermittent periods of active disease requiring treatment
  • Living with cancer continuously without a disease-free period

According to the NCI, an estimated 13.7 million Americans with a history of cancer were alive on January 1, 2012, and of that total, 10% are men and women under the age of 39. The three most common cancers among male survivors are prostate (43%), colon and rec- tum (9%), and melanoma (7%). Among female survivors, the most common cancers are breast (41%), uterine corpus (8%), and colon and rectum (8%). As of January 1, 2022, it is estimated that the population of cancer survivors will increase to almost 18 million: 8.8 million males and 9.2 million females.

Many children, adolescent and young adult cancer survivors must cope with the long-term effects of treatment, such as infertility and sexual dysfunction. For younger survivors, the loss of fertility can be life-changing, with irreversible consequences that can affect quality of life. Women under 35 are at risk for infertility and premature menopause, even when their menstrual cycle resumes. Toxic effect of chemotherapy on the ovaries increases with older age, higher doses, and longer duration of treatment. Male infertility from cancer surgery or radiation can result from anatomic changes, hormonal imbalances, or lower production and quality of sperm. Cancer patients, caregivers, and survivors must have the information and support they need to play an active role in decisions that affect treatment and quality of life.

For a list of cancer care resources, including survivorship information, please visit our Patients page. To read  Cancer Treatment & Survivorship Facts & Figures, please click here.

New Fertility and Cancer Study from Oncofertility Consortium Member, Jennifer Mersereau, MD

Advances in cancer treatments give young women more hope for survival than ever before, but many treatments can leave women unable to naturally conceive a child.  The University of North Carolina (UNC) Fertility Preservation Program, a member of the National Physicians Cooperative, provides options for female patients of reproductive age newly diagnosed with cancer, but the decision to initiate fertility preservation must be made quickly, before cancer treatment begins.  General lack of knowledge about reproductive functioning, stress related to processing the cancer diagnosis, urgency, and insufficient support while attempting to make the decision, all serve to degrade this process often leading to later decisional regret.

As a result, Oncofertility Consortium member, Dr. Jennifer Mersereau, and UNC Fertility are conducting a multidisciplinary research study that evaluates a ‘Decision-Aid” designed to help reproductive-aged women (age 18-42) make decisions about fertility and cancer. This collaborative project between a reproductive endocrinologist, clinical psychologist, and oncology experts involves a new interactive, web-based decision aid that is used in concert with fertility preservation counseling.  If this decision aid proves to be beneficial, this web-based tool may potentially be used for patients who do not have easy access for a full fertility preservation consultation.

Study Details:

  • Study participants will have a routine consultation appointment with a fertility specialist at UNC Fertility to discuss fertility, cancer, and treatment options for fertility preservation. Note that this visit is considered part of routine medical care.
  • Participants will plan for an additional 45-60 minutes at the time of their consultation to watch a web-based presentation about fertility preservation and decision-making.  They will also complete questionnaires at that time.
  • Participants will be asked to complete 2 additional web-based surveys, one approximately one week after the consultation, and one approximately 6 months later.

Findings from this pilot evaluation will support a grant application for a multi-site study to investigate community effectiveness and accessibility. Study participants will receive a $50 gift card for full participation, to compensate for their time and effort. If you are in the Chapel Hill area and interested in taking part in this study, please call for a consultation appointment (919-966-1150) or send an email to jem *at* with your name, phone number and times that you can be reached. Your contact information will not be shared with anyone outside the study. For more information about this study, please click here.

*Supported by a grant from the UNC Lineberger Cancer Center.

The SAMFund Presents, “Building a Family After Cancer Treatment.”

At the Oncofertility Consortium, we like to introduce our readers to advocacy groups who are doing great things to make a difference in the lives of individuals facing or who have faced, a cancer diagnosis. One of those organizations we would like to shine a light upon is, The SAMFund. The SAMFund is a unique non-profit organization created to assist young adult survivors of cancer with a successful transition into their post-treatment life, by providing financial support through the distribution of grants and scholarships.

Grants provided by The SAMFund cover a wide range of post-treatment financial needs, such as: rent and utilities, car and health insurance premiums, graduate tuition, vocational training, student loan repayment, current and residual medical bills, family-building expenses, gym memberships and transportation costs. To date, The SAMFund has awarded a total of $735,000 to hundreds of individuals across the country and they are currently accepting applications (due by July 9th) for the 2012 SAMFund Grant. If you are a cancer survivor between the ages of 17 and 35, or if you know of someone who is and may need financial assistance for one reason or another, check out the application requirements on The SAMFund website to find out if you qualify.

Not only does The SAMFund provide funding opportunities, but in early 2011, they developed a free webinar series called Moving Forward With Your Financial Health to address some of the most common challenges faced by young adults after treatment. Then webinar series was a huge success and The SAMFund has continued to add exciting and relevant topics to this popular webinar series. On June 11th, The SAMFund presented the first in a series of two webinars about family building post-cancer entitled, Moving Forward With Your Financial Health: Building a Family After Cancer Treatment (Part I).

Moving Forward With Your Financial Health: Building a Family After Cancer Treatment, gave participants the opportunity to learn about fertility challenges after a cancer diagnosis, biological options for building a family, and the resources for financing the procedures from experts in the field of cancer and fertility, Joanne Frankel Kelvin and Mindy Berkson.  Joanne Frankel Kelvin is a Clinical Nurse Specialist at Memorial Sloan-Kettering Cancer Center in New York who established the Cancer and Fertility Program to ensure all patients are informed about their options for fertility preservation before cancer treatment, and for building a family after treatment. Mindy Berkson is the founder and CEO of Lotus Blossom Consulting (LBC), helping clients by bringing together the resources and professionals necessary to accomplish the end family building goal, and serve as a guide through the often stressful financial, physical and emotional demands of the infertility process.

If you happened to miss this webinar, please visit The SAMFund’s webinar archive to listen to this dynamic presentation. You can also find information on TheSAMFund on our Patient Resources webpage.

Cancer, Cupcakes, and Charity!

Parked outside our office building at the lunch hour, are several food trucks vying for the perfect spot to sell their goodies. Mostly they try and park as close to the doors as possible, hoping to attract as many lunch-goers as they can (the science behind the food truck’s  “mythical spot,” can be found at Outside our doors we have the pasta lady, the falafel guy and a number of cupcake trucks tempting us with their sweet treats. Regardless of the options, I always go to the one cupcake truck that promises to not only satisfy my sweet tooth, but change the world in BIG ways too: Cupcakes for Courage!

Cupcakes for Courage is the brainchild of Kathryn and Laura Pekarik, two sisters that share the same passion for baking and saving the world. In May 2010, Kathryn was diagnosed with non-Hodgkin’s T-cell Lymphoma, which accounts for about 15% of all non-Hodgkin’s lymphomas in the US each year. According to Laura, “When we were at the hospital, we’d always talk about what we’d bake next. It kept our minds off everything. We couldn’t control the cancer, but when we talked about recipes, we could create flavors and measurements—and we knew what the outcome would be.”

Near the end of that year, a benefit was held in Kathryn’s honor to help defray the costs of her medical care.  To help contribute, Laura baked 250 cupcakes to host a bake sale at the event. Needless to say, her cupcakes were a huge hit and friends and family were begging for more! As a result, Cupcakes for Courage was born to provide the Chicago-area with delicious cupcakes while raising money for cancer research and Ride Janie Ride, an organization dedicated to providing direct financial assistance to Chicagoland individuals facing financial hardship as a result of their cancer care.

Giving back is what sets Cupcakes for Courage apart from the others. According to Kathryn and Laura, “Cancer research is an incredibly important cause and requires funding to find a cure.  That’s why we donate our proceeds to the Leukemia and Lymphoma Society and the American Cancer Society,” and Ride Janie Ride. In 2011, Kathryn was selected as the Ride Janie Ride recipient. She was so touched by their mission and their 100% volunteer base that she wanted to help them in their cause by “paying it forward.” Laura says, “Our hope is that one day, no one will have to suffer from the disease ever again.”

If you in the Chicagoland area, keep an eye out for the big green food truck plastered in cupcakes. You can also catch them in an episode of Cupcake Wars on the Food Network (yes, they’re that good!). Finally, you can visit them at their website, or if you’re in downtown Elmhurst, IL, stop by Brainfreeze where they do all their baking and have a taste!

True North Treks Supports Young Cancer Survivors in Paddleboarding Classic

The adolescent and young adult (AYA) cancer survivor network is  slowly starting to build steam as more and more people begin to recognize the special needs of this demographic. AYA’s not only face a cancer diagnosis at a young age, but as a result, they may also struggle with late-effects of their treatment including infertility, heart problems, and psychological trauma. Stemming from the need to address these concerns, AYA groups have started to pop up all over the country providing a supportive gathering space, whether online or in person, for young cancer survivors to meet other people who may share a similar experience.

Arising from the need to connect young cancer survivors with one another, nature, and themselves, sprang True North Treks (TNT). We wrote about TNT in an earlier blog, but for those of you who don’t know, I’ll give you a little recap of what this great organization is all about.  TNT is an organization that supports AYA’s by taking them on short term treks in nature that focus on learning mindful awareness practices, connection to other survivors, and the beauty and balance of the great outdoors. TNT believes that this is “good medicine, especially for those who find themselves in transition after cancer treatment.”

One of the great things about TNT is that they are a group totally equipped to deal with the needs of young cancer survivors, specifically they’re medical needs. Some participants on past treks have only been out of treatment for a short time and still have to deal with IV’s, medication, and fatigue. The trek leaders have the experience and proper equipment to ensure that almost any survivor can participate on one of their treks. These are not expeditions designed to push survivors to their physical limits, but rather they are excursions for the soul and the spirit.

An upcoming event that True North Treks is co-sponsoring for AYA’s is the 1st Annual Chicago SUP YACS Classic (Stand-Up Paddleboard and race, ride, and glide for Young Adult Cancer Survivors). This event is taking place on July 29th in Chicago, IL, at Montrose Beach and is open to the public. If like me, you have never been on a paddleboard in your life, but think it sounds cool, there is a stand-up paddleboard clinic (a SUP 101 if you will) that newbies can take part in near the race start. There is a small registration fee, which will go toward programming for young adults with cancer. There is nothing like Chicago in the summer (told from a true Chicagoan) and no better feeling than knowing you are doing something that will benefit so many fantastic young survivors!

To register for this event, please visit the 1st Annual Chicago SUP YACS Classic webpage. To learn more about True North Treks, please visit our Patient Resources webpage.





Teal Diva Shares Her Story of Cancer, Fertility, and Resilience

As part of our guest blog series, the Oncofertility Consortium would like to introduce our readers to Shannon Routh, and her organization for young survivors of ovarian and gynecologic cancers, Teal Diva, founded in 2009. Below is a post she wrote about her experience with cancer, fertility and finding the “new normal” in her life.

By Shannon Routh

Remember the MASH (Mansion-Apartment-Shack-House) game you used to play when you were a little girl, to predict what your life would be like when you grew up? The game where you choose your husband, how many kids you will have, where you will live, etc.  It’s funny how the words cancer, infertility or hysterectomy were never a part of my outcome.   My story ends a little differently than I had hoped…dreamed.

My husband and I were married just shy of 3 years when we got the news…you have ovarian cancer.  A few months prior to being diagnosed, I had abdominal pain.  I went to my gynecologist.  After reviewing my ultrasound, she noticed a cyst the size of a grapefruit on my ovary.  She referred me to a Gynecologic Oncologist.  As he prepped us for surgery, he told us we had 3 scenarios: 1-remove the cyst, 2- cancer, removal of cyst and ovary, and 3-cancer, hysterectomy, etc, etc, etc.  After surgery, I woke up asking if he did a hysterectomy and I was told he did not.  Oh my goodness…I was so relieved, so thankful.  The day I was released from the hospital is the day I learned I had stage IIa Clear Cell Carcanoma. I was 32.  And because of my age and cancer type, he wanted to be certain prior to taking both ovaries.  Wait…does that mean?…yep.  A 2nd surgery was scheduled.  We went home…devastated.  In an effort to remain positive, I thought we could harvest eggs and pursue other options.  We went in for a consultation a few days before the radical hysterectomy and asked hopeful questions about our options, but we were told my cancer type feeds off of hormones. Unfortunately, you will not be able to bare children.  So not only do I have cancer, I can’t have kids.  WOW…talk about depressing.  But I didn’t have time to feel sorry for myself because I had to prepare for the hardest fight of my life.

My world was turned upside down by having cancer and learning I would never bare children, but I have found a new normal…one I didn’t plan for.  Throughout my journey, I needed desperately to connect with someone. So, one night I started writing and before I knew it, Teal Diva was born.   The mission of Teal Diva is to celebrate life!  As survivors of ovarian and other gynecological cancers, we understand the reason to celebrate every sunrise.  We are bound by our experiences and challenges and form a sorority which we never intended to join.  The primary beneficiary of our fundraising efforts are research programs seeking reliable screening tests for gynecologic cancers.

*To learn more about Teal Diva and other community resources for cancer survivors, please visit our Patients webpage.

Clinic 101: Building a Fertility Preservation Program

Fertility Preservation (FP) programs are imperative to comprehensive cancer treatment plans, but not all providers are able to offer this level of care to their patients. Often, this is not for lack of want, but rather it results from a scarcity of resources or insufficient knowledge regarding FP.  Training hospitals often have the right people and networks in place to incorporate FP into cancer care, however smaller operations such as community cancer centers and local hospitals may have more challenges establishing an FP program for a variety of reasons, namely their size.

In an effort to assist providers, clinicians and healthcare facilities nationwide, the Oncofertility Consortium developed a one-day, small-group training course to give practitioners the tools to develop their own fertility preservation program from scratch or strengthen an existing program. The course is titled, Clinic 101: Building a Fertility Preservation Program, and includes the following:

  • Welcome and Overview of the Key Pieces in a Fertility Preservation Program
  • The Ins and Outs of Setting Up a Local Oncofertility Community
  • Timing, Turnaround, and Practical Considerations
  • Clinical Exercises: Discussing Fertility Preservation with Patients
  • Pediatric Fertility Preservation
  • One Case Study in Program Development: One Doctor’s Experiences
  • The Oncologist’s Perspective

The next Clinic 101 is Wednesday, September 26, 2012 at Northwestern University in Chicago, IL. The clinic will be held the day before the 2012 Oncofertility Conference: Dialogues in Oncofertility concurrent with our course for researchers, Oncofertility 101: A Training Course in in vitro Follicle Growth Using Alginate Hydrogels. Please sign up early if you’re interested as the class is filling up quickly. There is a $30 fee for the course which covers supplies, print materials, and lunch for attendees.

Click here to register for Clinic 101, or to get more information. We look forward to hearing from you!

The Relationship between Pain, Opioids, and Hormonal Side Effects in Cancer Patients

Pain is a common symptom among cancer patients and a large percentage of cancer patients are treated with opioids to control this side effect. Some cancer therapies are very rigorous and require opioid analgesics on an ongoing basis to treat the pain resulting from aggressive treatment. Many cancer survivors also report having low energy, depression, anxiety and impaired sexual function as a result of their treatment. It is also known that cancer treatment, such as radiation to the brain, is associated with long term endocrine abnormalities, including hypogonadism and hypothyroidism, that may cause some of these symptoms. However, the relationship between long-term use of pain medication and hormonal disruption is still not well-understood in female cancer survivors.

Information from males was discussed in an older article in the journal, Cancer, by authors, Arun Rajagopal, MD, Rena Vassilopoulou-Sellin, J. Lynn Palmer, PhD, Guddi Kaur, RN, BSN, and Eduardo Bruera, MD, entitled, “Symptomatic Hypogonadism in Male Survivors of Cancer with Chronic Exposure to Opioids.” In the article, the authors explore the relationship between the chronic consumption of oral opioids during and after cancer treatment and the potential for hypogonadism (reduced testosterone levels) and whether or not hypogonadism is associated with symptoms of fatigue, anxiety, depression and sexual dysfunction.

In an effort to prove the prevalence of central hypogonadism and associated symptoms of sexual dysfunction, depression, anxiety and fatigue, cancer patients selected for the study were all adult males, who had been cancer free for a year, and  taking high does of opioids. The control population was selected based on matching diagnosis and treatment, albeit they had not consumed any opioids in the last 12 months.  Patients completed the Sexual Desire Inventory (SDI), the Hospital Anxiety and Depression Scale (HADS), the Functional Assessment of Chronic Illness Therapy (FACT-G/FACIT-F) and the Edmonton Symptom Assessment System (ESAS) questionnaires. The patients also had serum samples taken to monitor their testosterone levels.

The results of the study showed that testosterone levels in the study group were significantly lower than what was found in the control group. Sexual dysfunction was significantly higher in the opioid group and reports of depression and fatigue were also much higher in the study group. Reported anxiety between the two groups was insignificant. Thus, the results suggest that chronic consumption of opioids leads to clinically significant central hypogonadism, which also may lead to greater levels of depression, fatigue and sexual impairment.

The results of this study and potential implications for the quality of life in cancer patients is critical. Hypogonadism can have consequences that go beyond poor libido and affect other areas of men’s lives, including fertility. Unfortunately, there are a lack of studies examine the relationship between opioid use in female cancer survivors and endocrine health. As chemotherapy and radiation may already compromise a woman’s reproductive ability, this information would provide health care providers with critical information regarding how to treat two significant quality-of-life issues in young female cancer survivors: reproductive health and pain management.

New Tool for Fertility Preservation in Community Cancer Centers

In 1974 a small group of physicians seeking to dispel the myth that community physicians were uninterested in and incapable of participation in state-of-the-art cancer care came together to form the Association of Community Cancer Centers (ACCC). ACCC was born to give oncology practitioners in the community a voice in the national oncology forum and it would become the mechanism through which clinical protocols and other oncology standards of care were developed and disseminated to community cancer programs across the nation. ACCC promotes the entire continuum of quality cancer care for both patients and communities.

Most recently, Faye Flemming, RN, BSN, OCN, member of ACCC, created Nicole’s Oncofertility Toolkit to help facilitate the development of a formalized oncofertility program in community cancer centers. Faye initiated the project as a direct result of the pain and suffering her 28year old newly married niece, Nicole, endured when her oncology team failed to address her oncofertility needs immediately after diagnosis. Ultimately, Nicole’s fertility needs were recognized, but it wasn’t until months later after she found an oncology provider that was equipped with the tools, resources and knowledge to facilitate this. It also took persistence on Nicole’s part to seek out a cancer care team that would ensure she had fertility options prior to undergoing fertility impairing treatment.

Nicole’s Oncofertility Toolkit is a resource for both patients and healthcare professionals. It provides each with general information (statistics, cost, procedures, assessment), tools for establishing a program and resources for fertility preservation information so that both the provider and the patient are well informed. According to Faye, “Many cancer patients experience unnecessary emotional turmoil due to a lack of attention, knowledge, support, resources, planning and preparation related to oncofertility issues and both the providers and payers are to blame.” Therefore, this toolkit was created to empower both patients and providers to take control of the fertility options available to men, women and children.

In a community-based setting, it can be challenging to meet the fertility needs of cancer patients, but with the addition of Nicole’s Oncofertility Toolkit, it opens up a much needed dialogue about oncofertility, increasing the likelihood that fertility will be addressed at diagnosis in age appropriate patients.


iSaveFertility Canadian Invasion!

As you may already know, The Oncofertility Consortium partnered with the Endocrine Society to release the free, iSaveFertility iPhone App nearly a year ago this week.  iSaveFertility was developed to give oncologists and fertility specialists a quick reference guide for preserving the fertility of children, women and men diagnosed with cancer. In today’s world, more and more health care professionals are using smartphone technology as part of their daily lives, with apps being designed in lieu of cumbersome pocket-guides to meet their diagnostic and medical information needs. In oncology and fertility care, access to the most recent information and tools available at the point-of-care is critical for both providers and patients in the fight against cancer, thus iSaveFertility was born!

In July of last year, the Oncofertility Consortium partnered with the Cancer Knowledge Network (CKN), an affiliate of the Canadian journal, Current Oncology, to reach the larger  population of oncology professionals in an effort to provide insight into the complex health care and quality-of-life issues that concern cancer patients whose fertility may be threatened by disease or its treatment. As a result of this partnership, CKN is working with us to help disseminate information about fertility and cancer awareness across Canada by utilizing the iSaveFertility iPhone app in healthcare settings. It is the objective of all those involved with CKN and the Onocfertility Consortium to provide an open-access, multi-disciplinary forum for oncologists and cancer-care professionals to connect, become informed and initiate discourse.

Utilizing new technology, such as the iSaveFertility, is helping to change the face of comprehensive cancer care. Providers rely on the apps to give them the most up-to-date healthcare information, which in turn benefits the patient by ensuring they are well-informed and in control of their cancer treatment. We are excited to engage with the larger oncology community and to improve care to cancer patients with the help of CKN and iSaveFertility.

To learn more about iSaveFertility, visit and download the free app. To learn more about CKN, please read our past blog post or visit, Cancer Knowledge Network.


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