Hodgkin Hub: Empowering the Hodgkin Lymphoma Community from Diagnosis Through Treatment

In the patient community, personal stories from people who have faced a similar cancer diagnosis have the power to offer invaluable insights, support and connection to others who may be starting on this life-changing journey.

Over the last several years, Seagen heard from many people living with Hodgkin lymphoma who shared that they wanted to know more about what to expect after their diagnosis, including how to navigate making difficult treatment decisions and getting through their treatment. To meet that need, in 2018, Seagen created Hodgkin Hub – a dedicated online resource for people impacted by Hodgkin lymphoma seeking information and support before, during and following treatment.

Visitors to Hodgkin Hub can find information and resources about Hodgkin lymphoma, and also watch real patient videos, providing a chance to hear directly from others who have been diagnosed and learn how they navigated their own journeys.

Two highlighted video series includes:

“Day in the Life” Stories

The “Day in the Life” videos highlight individual perspectives from Hodgkin lymphoma survivors on their day-to-day experiences through diagnosis, treatment, and life after. Visitors can hear from:

Kyle: A member of the U.S. military, Kyle was diagnosed with Hodgkin lymphoma after returning from his deployment in Afghanistan. Watch here.
Piper: Diagnosed during her sophomore year of college, Piper learned the importance of self-advocacy and asking her doctor questions about her treatment to get the answers she needed. Watch here.
Liz: As a young adult, Liz was diagnosed just as she was starting college and leaned on her support system of her parents and brother to help her through her treatment experience. Watch here.

“What the HL?!” Survivor Stories

The What the HL?! videos feature Hodgkin lymphoma survivors who talk about the questions they asked (or wish they had asked) after diagnosis. Each provides their perspectives on navigating diagnosis, overcoming treatment challenges and finding support during life with Hodgkin lymphoma. Visitors can hear from:

Sarah: Diagnosed while still in high school, Sarah found it challenging to continue her education while going through treatment but kept a positive outlook. Watch here.
Bryan: Bryan was first diagnosed when he was in graduate school and working full time. His support system was there for him as he faced mental struggles and needed help as he prepared for treatment. Watch here.
Philomina: After being diagnosed with Hodgkin lymphoma, Philomina became an advocate for herself, researching her diagnosis and treatment options. She maintained a strong relationship with her oncologist by asking questions and requesting more information when she needed it. Watch here.

Visit HodgkinHub.com for more information and resources for the Hodgkin lymphoma community.

This post was presented by Seagen.

So, What Exactly Is An AYA?

Now that you’ve joined the Young Adult Cancer Club…pretty cool club, right? (yuck!)…you know, better than anyone around you probably, what AYA means.  AYA, or Adolescent and Young Adult, has been taken by the oncology community to denote those survivors diagnosed with cancer between the ages of 15-39.

Looking for a little bit more than that though?  Want to know where these ages come from in the research?  Look no further than this article written by a young adult cancer survivor and researcher, Ximena.

“[Researchers] argue that creating research protocols and programs for those with cancer ages 15-39 is a far too generalized approach in that it does not take into account the person’s developmental stage. A 15-year-old who is starting to explore their identity and separate from their parents, for example, will have far different needs than a 35-year-old who is caring for their young children.”

Read the entire article here.


Let’s Talk About Male Breast Cancer, It Does Exist!

male breast cancer

Since pink ribbons flooded the world, everyone has heard of breast cancer; but did you know that men can get breast cancer, too? It’s true and, although male breast cancer is rare, it can be deadly. There aren’t many organizations that focus solely on male breast cancer, but that is starting to change. For men, the stigma of breast cancer is the idea that it’s a “woman’s disease.” When we focus on the pink, we can’t forget that the blue matters, too. Men need to be empowered and informed!

A few famous men who have battled breast cancer:

Peter Kriss

Peter Kriss: That’s right! The drummer of the iconic rock band, KISS, is a breast cancer survivor. He was also the first man to publically admit on TV that he had breast cancer.

Richard Roundtree: Better known as that 70’s ace detective in the movie, Shaft. He was also in Roots, and briefly in Beverly Hills, 90210.

Rod Roddy: You know his voice as he was the announcer on The Price is Right.

Ernie Green: NFL fullback for the Cleveland Browns.

Below is my friend Alan Blassberg, director of the award winning documentary Pink and Blue, Colors of Hereditary Cancer. And yes, he is being felt up by David Grohl of the Foo Fighters and formerly of Nirvana. Alan pushes for men to be included in the breast cancer discussion and is a champion for men’s health rights. Dave Grohl seems to be a fan as well!


Check out the full article about this documentary in Forbes.

So how does any of this relate to me? My father has the BRCA2 (Breast Cancer and Ovarian Cancer) mutation. He was the one that prompted me to go for my own genetic testing. I inherited my BRCA2 mutation from him. Many people, doctors included, are not aware that men can pass the BRCA genetic mutation down to their children, and they are also unaware that men can and do get breast cancer.

Mutations can be inherited from either parent and may be passed on to both sons and daughters. Each child of a genetic carrier, regardless of sex, has a 50% chance of inheriting the mutated gene from the parent who carries the mutation. As a result, half of the people with BRCA gene mutations are male, who would then pass the mutation on to 50% of their offspring, male or female. (Wikipedia)

It is just as crucial to learn about your paternal side of your family tree. If you only check with your mother’s side of the family, you are missing 50% of the information needed to make informed decisions about your health.

People with whom I’ve shared my story are SHOCKED to learn that I inherited this from my father. Men seem to be forgotten and are often overlooked. I know this firsthand because, until 8 years ago, I had no idea about my father’s side of the family. I didn’t know that his mother passed away of ovarian cancer in her 40’s or that his aunt passed away of breast cancer in her 40’s. It was only when his first cousin was diagnosed with ovarian cancer that I learned cancer was rampant throughout my dad’s side of the family.

When you hear of BRCA mutations, you hear about the increased risk of breast and ovarian cancer and the effects the mutation has on women. However, a mutated BRCA gene also increases the risk of other cancers such as fallopian tube cancer, peritoneal cancer, pancreatic cancer, melanoma, along with other skin cancers, prostate cancer and, of course male breast cancer.

Check out the BRCA fact sheet from cancer.gov.

Male breast cancer occurs in 1 out of every 100 BRCA-related breast cancer cases. In the general public, male breast cancer accounts for only 1 out of 1000 cases. We all know it is important for women to be aware of changes in their breasts and it is just as important for men.

Compiled from BreastCancer.org, possible symptoms of breast cancer include:

• a lump felt in the breast;
• nipple pain;
• an inverted nipple;
• nipple discharge (clear or bloody);
• sores on the nipple and areola (the small ring of color around the center of the nipple); or
• enlarged lymph nodes under the arm.

So ladies, I implore you to talk to the men in your life, especially if you have a family history of any of the cancers mentioned above that are linked with BRCA mutations. Men, take control of your health, ask questions about your family history, be informed. Please start a conversation that can save a life. Knowledge is Power!
Much Love

Works Cited:

Wikipedia. Wikimedia Foundation. Web. 15 Dec. 2015. .
Senapathy, Kavin. “Rockstar Dave Grohl Examines Filmmaker’s Breasts, Because Men Get Breast Cancer Too.” Forbes. Forbes Magazine, 1 Dec. 2015. Web. 15 Dec. 2015. .
“Breast Cancer Symptoms | Breastcancer.org.” Breastcancer.org. Web. 15 Dec. 2015. .
Cancers related to BRCA: http://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet)

Diagnosis Corner: Cord Blood For Cancer Treatment

cord blood for cancer treatment

Here at Lacuna Loft, we talk about everything lifestyle management and psychosocial support for young adults dealing with cancer or long term illness as patients, survivors, or caregivers.  We seek to provide everything that the more clinical and medical resources don’t.  With that said, we are all here, together on Lacuna Loft, because of a diagnosis.  Learning more about diagnoses and treatments is also an important step to living and thriving.

Today in Diagnosis Corner, we are talking about using cord blood for cancer treatment.

Today, in our new series Diagnosis Corner, we are hearing from Joshua Lohse, an awareness advocate at CordBloodBanking.com. Welcome Joshua!


An overview of cord blood

A quick overview of the current and future benefits of stem cells, and how you can protect your family using cord blood banking. Anyone affected by cancer, or any life threatening illnesses should contact your local physician regarding umbilical cord blood for a treatment plan.

What is cord blood?

When a child is born, blood remains in their umbilical cord, even after it’s been removed and discarded as medical waste – this is called “cord blood”. Over the past 20 years, researchers have started collecting cells from cord blood, which are being used in transplants. Cord blood transplants treat over 80 diseases, and new therapies are emerging every year. For a list of these diseases click here.

Cord blood banking

Cord blood can now be stored, which gives families access to life-saving stem cells – this is called cord blood banking. When parents choose to store their baby’s cord blood, they can use these cells for medical treatment. The child, their siblings and close relatives can all benefit from stored cord blood.

Treatments using cord blood

Cord blood contains powerful stem cells. When transplanted, these cells heal damaged tissue in the body, and make more healthy cells in the process. Cord blood can treat cancer, autoimmune diseases, and even blood disorders such as leukemia and lymphoma. The promise for these tiny, yet powerful stem cells is tremendous.

Researchers are always testing new treatments with cord blood. In the next several years, life-changing conditions, like autism and heart disease, may be treated with these cells. Dozens of FDA-approved clinical trials are currently underway for emerging cord blood treatments, which means the list of diseases treated will greatly increase in the near future.

Cord blood and bone marrow

Compared to other stem cell sources, like bone marrow, cord blood is much more adaptable. Bone marrow needs a close donor match for an effective transplant. Since cord blood cells used to belong to a baby, they are much younger. This means they can adapt to many different people, making transplants easier and more effective.

Collection and storage

When your baby is born, medical staff take the umbilical cord to a different room, where they remove the cord blood, and place it into a temperature-safe container. This container is shipped to a lab, where scientists remove stem cells, and test them for use in future treatments. After the cells are tested, they are placed in long-term cryogenic storage.

The lab workers enter in information about the stem cells on a computer, so they have access to it later. They note the type, quantity and health level of the cells, which means proper matching and treatment are easier later on. If you chose to store your child’s cord blood in a private bank, only you and your family will have access to these cells.

For more information on the benefits of cord blood banking, visit www.cordbloodbanking.com.


Thank you Joshua!  What are other diagnoses or treatments that you would like to learn about?  Let us know in the comments or by emailing, info@lacunaloft.com

*remember, we are not condoning any specific treatment options, just offering up information.  If you have questions, please visit our privacy policy and our terms of use.

Diagnosis Corner: 5 Things to Know About Breast Cancer in Young Women

Breast Cancer in Young Women

Here at Lacuna Loft, we talk about everything lifestyle management and psychosocial support for young adults dealing with cancer or long term illness as patients, survivors, or caregivers.  We seek to provide everything that the more clinical and medical resources don’t.  With that said, we are all here, together on Lacuna Loft, because of a diagnosis.  Learning more about diagnoses and treatments is also an important step to living and thriving.

Today in Diagnosis Corner, we are talking about breast cancer in young women.

Today, in our new series Diagnosis Corner, we are hearing from Dr. Diane Radford, a Surgical Oncologist and Breast Surgeon at Mercy Clinic St. Louis Cancer & Breast Institute.  Welcome Dr. Radford!

Diane Radford is a breast surgeon in St. Louis. She grew up in Troon on the west coast of Scotland and started medical school at the University of Glasgow at the age of 16. Early on in her surgical career she knew her vocation was the care of patients with breast cancer and benign breast diseases and she sought out the best training to obtain additional expertise.


1) Likelihood

Although it is widely stated that the chance of developing breast cancer for American women is 1 in 8 (SEER data), the likelihood varies depending on age:

Risk starting age 30: 1 in 227
Risk starting age 40: 1 in 68
Risk starting age 50: 1 in 42
Risk starting age 60: 1 in 28
Risk starting age 70: 1 in 26

Women can calculate their own risk of breast cancer using the Breast Cancer Risk Assessment Tool, modified from the Gail model. Eleven percent of all new breast cancer cases in the US are found in women under age 45.

2) Genetics

Young age at diagnosis of breast cancer (45 or less) is a red flag for the possibility of an inherited mutation. At least 10% of all breast cancers are due to an inherited mutation, most commonly in the genes BRCA 1 or 2. Young age at diagnosis is an indication for genetic counseling and testing per the National Cooperative Cancer Network (NCCN) guidelines. With the availability of multi-gene panel testing (so-called next generation sequencing) other genes responsible for inherited cancer syndromes are being detected. 4.3% of over 1780 patients eligible for testing were found to carry genes other than BRCA1/2. The most common genes detected other than BRCA1/2 were CHEK2, ATM, PALB2, and BRIP1.

Women can utilize the KnowBRCA tool to calculate their risk of carrying a BRCA 1 or 2 mutation.

3) Modifiable risk factors

The CDC, American Cancer Society and American Institute for Cancer Research are unanimous in their recommendations for reducing cancer risk. The three main tenets are exercise, maintaining a healthy weight, and avoiding alcohol. According to the ACS, women who have 2 to 5 drinks daily have about 1½ times the risk of developing breast cancer compared to women who don’t drink alcohol. The AICR guidelines for cancer prevention in general are:

a. Be as lean as possible without becoming underweight
b. Be physically active for at least 30 minutes per day
c. Avoid sugary drinks. Limit consumption of energy-dense foods
d. Eat more of a variety of vegetables, fruits, whole grains and legumes, such as beans
e. Limit consumption of red meats and avoid processed meats
f. If consumed at all, limit alcohol to one drink per day for women.
g. Limit consumption of salty foods and foods processed with salt
h. Don’t use supplements to protect against cancer
i. It is best for mothers to breast feed exclusively for 6 months

The take-home message — lace up, don’t drink up.

4) Screening

Although the US Preventive Task Force recommends starting annual screening mammograms aged 50, other august groups such as the American Society of Breast Surgeons, American College of Radiology, American Congress of Obstetricians and Gynecologists and American Cancer Society recommend screening mammograms starting aged 40. It’s important to note that a “screening” study means the patient has no symptoms. If a woman has a lump, breast pain, nipple discharge, or any other symptom, imaging is indicated. Often prior to age 30, breast ultrasound will be the imaging of choice, to avoid radiation to the breast.

For carriers of a mutated BRCA 1 or 2 gene, annual breast MRI is indicated starting age 25, with annual mammography being added age 30 (NCCN). Three-dimensional mammography, also called tomosynthesis, was approved in the US in 2011. 3-D imaging increases cancer detection rates, and may be especially helpful in women with dense breasts.

5) Resources

The CDC is addressing breast cancer in young women by:
Conducting public health breast cancer research
Convening the Advisory Committee on Breast cancer in Young Women
Funding programs that support awareness, education and survivorship programs
And Educating young women and medical providers about breast cancer and breast health

The Young Survival Coalition (YSC) has a wealth of information for young women with breast cancer. They have both regional and national meetings, the next regional meeting being in Washington DC June 6th 2015

Diane Radford MD, FACS, FRCSEd
Breast Surgical Oncologist, St. Louis, MO

image via © Photographerlondon | Dreamstime.comYoung Women Photo


Thank you Dr. Radford!  What are other diagnoses that you would like to learn about?  Let us know in the comments or by emailing, info@lacunaloft.com