Learn To Make Change With Your Young Adult Cancer Story

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Want to learn to tell your story to make change?

In a 2-hour, online workshop at Lacuna Loft, we’ll delve into how you can turn your young adult cancer story into advocacy. Advocacy comes in many different shapes and sizes so we’ll talk about what it might mean to you and how to go about shaping your own narrative into the change you want to see around you. The workshop will be interactive and equip you with the skills you need to turn your story into advocacy.

The program is open to young adult cancer patients, survivors, and caregivers and is scheduled for Tuesday, May 26th. 2:30-4:30 pm PT / 4:30-6:30 pm CT / 5:30-7:30 pm ET.

When you sign up for the workshop, you’ll get a confirmation from the system that you’ve registered. Then a few days before the workshop occurs, you’ll get an email from Lacuna Loft explaining how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.*** [ The webcam is very important. The workshop will be interactive so the other participants need to be able to see your face! 🙂 ]

What if I’ve taken the workshop already?  At this time, the workshop has not changed in between sessions.  A ‘Round 2’ of the workshop is in process though and we’ll debut it in the fall!

Join the Next How to Turn Your Story Into Advocacy Workshop!

microphone with colorful backdrop

In a brand new, 90 minute, online workshop at Lacuna Loft, we’ll delve into how you can turn your young adult cancer story into change.  Advocacy comes in many different shapes and sizes so we’ll talk about what it might mean to you and how to go about shaping your own narrative into the change you want to see around you.  The workshop will be interactive and equip you with the skills you need to turn your story into advocacy.

Who: young adult cancer patients, survivors, and caregivers.

When: Wednesday, May 29th. 4-5:30 pm PT / 6-7:30 pm CT / 7-8:30 pm ET

How does it work? When you sign up for the workshop, you’ll get a confirmation from the system that you’ve been confirmed into the workshop. Then a few days before the workshop occurs, you’ll get an email from Lacuna Loft explaining how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.*** [ The webcam is very important. The workshop will be interactive so the other participants need to be able to see your face! ]

If you’ve already taken part in this particular workshop, this month’s event isn’t for you. But! We’ll be figuring out a follow up to the workshop in the coming months and will let you know when that is announced.

Brand New Advocacy Program!

microphone with colorful backdrop

In a brand new, 90 minute, online workshop at Lacuna Loft, we’ll delve into how you can turn your young adult cancer story into advocacy. Advocacy comes in many different shapes and sizes so we’ll talk about what it might mean to you and how to go about shaping your own narrative into the change you want to see around you. The workshop will be interactive and equip you with the skills you need to turn your story into advocacy.

Who: young adult cancer patients, survivors, and caregivers.

When: Tuesday, April 30th @ 5 pm PT / 7 pm CT / 8 pm ET.

How does it work? When you sign up for the workshop, you’ll get a confirmation from the system that you’ve been confirmed into the workshop. Then a few days before the workshop occurs, you’ll get an email from Lacuna Loft explaining how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.*** [ The webcam is very important. The workshop will be interactive so the other participants need to be able to see your face! ]

Cancer Care by Zip Code: Examining Geographic Health Disparities in the US

NY houses

ASCO Connection recently published an article talking about health disparities (“a term commonly used to describe differences in incidence, prevalence, mortality, and burden of cancer related to conditions among specific populations, including racial and ethnic minorities, sexual and gender minorities, older adults, and rural patients, among other groups”…that is a mouthful!) based on where someone lived who was diagnosed with cancer.  In the world of cancer survivorship, Lacuna Loft sees people from all over the country.  We have participants who are based in urban areas but for whom getting to a place for survivorship support is cumbersome all the way to people who live rurally and have no cancer center (or other known young adult cancer survivors) within a hundred miles.  This article isn’t based on young adults specifically, but it underlines the effect that geography has on outcomes…on whether people are surviving their cancer.

“Exciting new breakthroughs in cancer research are helping to make great strides in what is possible for patients with cancer. But they are not necessarily leading to equitable disease outcomes.

According to the Centers for Disease Control and Prevention (CDC), while the overall age-adjusted incidence of cancer is lower in rural areas than urban areas, rural areas have higher cancer death rates. This difference in mortality is growing wider over time. In these instances, new cutting-edge therapies are not enough.”

The fact that this research is fairly recent, done within the last few years, also underlines how important it is for patients to speak up.  If a physician doesn’t ask you questions but you have something in your cancer treatment regime that is overly burdensome (traveling for treatments for instance), taking charge and using your patient voice to advocate for better care is a must.  This is true in the cancer treatment space as well as the cancer survivorship space.  Sometimes, a better solution isn’t possible…but we can always ask!

Read more of this very interesting article here.

3 Important Questions To Ask At Your Mammogram Appointment

questions to ask at your mammogram appointment

“Breast density is recognized as one of, and possibly the strongest risk factor associated with development of breast cancer, according to the National Institute of Health.”

Getting cancer is complicated, especially as a young adult.  Your peer group won’t be well armed to advise you on all of the ‘shoulds’ and ‘coulds’ of the situation so you’ll likely be figuring a lot out on your own.  If you’re going in for a mammogram though, now you have someone in your court!  For the Love of Cups has put together 3 important questions to ask at your next mammogram appointment.  Arming yourself with as much power behind your self-advocacy as possible is crucial to taking charge of your own care.  You know your body better than anyone else!

Read the entire article here.

Be Your Own Advocate! No Excuses!

be your own advocate

As a 2x breast cancer survivor I just want women to be aware of their breast health and know what’s normal for them. Don’t rely solely on your doctors, take responsibility for your own breast health. Truthfully take responsibility for your health and wellness PERIOD! Most of us don’t see our physicians unless we are sick and even then we sometimes try to just push though. We as women tend to put our own health off because we are so focused on our families, work, and day-to-day life. In order to be at our best we must take the best care of ourselves. You are your own best advocate!

I myself was fairly healthy at the time of my diagnosis. I had a healthy pregnancy the year before, breast-fed my one year old at the time. I feel like I knew my body fairly well. I’m sure my husband would have noticed any thing out of the norm (he’s a breast man… lol). I knew the risks that I faced, my mother being a two-time breast cancer survivor herself. By the way, it’s important to know your family medical history when it comes to breast cancer. In fact I knew that I needed to have a mammogram done for that specific reason alone. I had to wait until I was finished breast-feeding my baby girl before I could have one, so as soon as I could I requested a mammogram. I never felt any lumps or noticed anything out of the norm for me, so I had absolutely no worries. Low and behold the doctor saw some micro calcification on my images in the left breast and sent me for a biopsy which resulted in my initial diagnosis.

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image via Keep A Breast

My second diagnoses came six months later. I had an intense itch on the right breast around the nipple and areola and thought that it was just an allergic reaction to the clothing detergent I was using. I also had a milky discharge and thinking it was due to having breast-fed my baby. After a couple of weeks of these symptoms going on I felt like something just wasn’t right. I made an appointment with my breast surgeon to figure out what was going on. She didn’t feel anything out of the ordinary, but with my persistence, ordered a mammogram and ultrasound. Both came back not showing anything abnormal. I still insisted that something was not right, I knew in my heart something was wrong. I had an upcoming surgery to have breast reduction on the right breast to become more symmetrical after my left breast mastectomy. This decision most likely saved my life. I knew that breast tissue is typically sent to pathology for testing, especially after a breast cancer diagnosis. Thank God for my plastic surgeon, he did just that! That lead to my second diagnosis of breast cancer. It’s so important to know what’s normal for you and to make yourself be heard by your doctors. No one knows your body like you do.  Please, advocate for yourself, you may be the one that saves your own life!

I am by no means a doctor, I can only share my experiences and what I’ve learned through my journey.

Did self-advocacy make a difference in your cancer diagnosis or cancer care?  Always speak up for yourself!