I survived surgery, six weeks of chemo and 35 rounds of radiation to beat cancer. Now, 10 years later, I have a disease there’s no cure for. My lymphedema is a direct result of the surgeries and radiation, because doctors had to remove lymph nodes to test for cancer cells, causing my body’s lymphatic drainage system to stop working properly years later. But I made a decision with this disease that I’m not going to let it define who I am. It’s part of my story, it has turned me into an advocate for lymphedema awareness and I don’t let it get in my way. I maintain an active lifestyle and work out every day, which helps with the chronic swelling I have from lymphedema.

More than 10 million people in the U.S. and 250 million people worldwide have lymphedema, but few people know about it. That’s why I’ve decided to share my story—the ups and downs, good days and bad days—to help bring awareness to this hard-to-diagnose chronic illness.

You can read more about my story at https://www.uchealth.org/today/lymphedema-after-cancer/

Proof: https://i.redd.it/61cu49yhkyl41.jpg

EDIT: Here at UCHealth we believe in celebrating extraordinary. We think Angela's story is extraordinary and wanted to share it with the world. We are facilitating the r/IAMA on her behalf and she is the one answering. UCHealth is here to help with any medical related questions.

EDIT 2: Thank you all for the questions! You can continue to follow my journey on Instagram @funky_lymphedema

Comments: 77 • Responses: 23  • Date: 

Natural_Literature17 karma

How have you maintained a positive outlook and your mental health after losing your leg due to developing lymphedema? Congratulations on beating cervical cancer!

uchealthorg14 karma

Angela: Happy Cake Day! Thank you! I think because I had gone through cancer and came out stronger on the other side, I had the attitude that I wasn't going to let this keep me from the lifestyle that I wanted.

Poetryisalive13 karma

You look to be in good shape. How will this affect your fitness going forward?

uchealthorg3 karma

Angela: Actually being fit now is my foundation with new fitness goals, and improve upon my fitness level.

hityouwiththechips10 karma

What were some of the first signs that something was wrong after cancer treatment? Was it something that was easily diagnosed?

uchealthorg14 karma

Angela: My lymphedema presented nine years after my cancer treatment. It began as gradual swelling in my ankles and in a week my entire leg was swollen. From there, it was six weeks of ER visits and five doctors before I was diagnosed by an interventional radiologist at UCHealth. So not really easily diagnosed. I'm the exception as people can go years undiagnosed. Doctors only spend 15-30 minutes on the lymphatic system in their four years of med school.

h3wy4u9 karma

Were there any specific support groups that really helped you? I imagine with a disease that isn't widely known it could be difficult to find specific support. Was there a good option beyond friends and family that you found particularly helpful?

uchealthorg8 karma

Angela: Once I was diagnosed I began researching and found the Lymphatic and Education Research Network. Colorado didn't have a chapter at the time I was researching, but then they started a chapter the same year I was diagnosed. We are still growing as an international nonprofit. Between that and the Instagram community, I've found a lot of support. There are also online Facebook groups that are worth joining.

Natural_Literature9 karma

Follow-up question...this AMA caught my attention because I have HPV and know that I am more prone to getting cervical cancer :(. Did you have the same? Did they tell you anything that could've helped? Were you able to catch it early on?

uchealthorg8 karma

Angela: Yes, it was from my regular check-ups. Even though I went every year I did not present with HPV. But the cervical cancer was caused by HPV. From what I read, 90% of women will have HPV in their bodies but won't know it, a small percentage of women will have HPV present itself.

Hippieflare9 karma

What are some of the ways you've found to stay positive and motivated? (Especially when you're experiencing a particularly tough time with your lymphedema.)

uchealthorg9 karma

Angela: For me I found a community on social media, particularly Instagram, going through the same thing and we inspire and lift each other up. I always circle back to wanting to live my best life and not let it define me.

worriedpatients7 karma

Was it difficult paying for your treatment at UC Health?

uchealthorg8 karma

Angela: No. I'm fortunate that I have good health coverage through my employer and I'm employed and working.

asaltybrunette6 karma

I’ve been learning more about the lympathic system and am intrigued by lympathic massage. I have yet to try it as they are expensive. What methods have you found to assist with lympathic drainage?

uchealthorg7 karma

Angela: As a lymphedema patient, I go to a certified lymphedema therapist which is different than lymphatic massage advertised at spas/salons. For myself, I see Vicki Ralph at UCHealth. For the most part, certified lymphedma therapists can be occupational/physical therapists that can then be certified for lymphedema treatment. Manual lymphatic drainage (MLD) is something you can perform on yourself after the therapist shows you how to do it. You can order a CD from Klose Training to show you how. There are also videos on YouTube but be careful as there are variations. Vicki is absolutely the best when it comes to treatment.

curiouserandcur10u55 karma

How were you able to handle the financial burden?

uchealthorg5 karma

Angela: I'm fortunate that I have good health coverage through my employer and I'm employed and working. Otherwise, I can't imagine. My co-pay is reasonable and I look at it as an investment in my health.

curiouserandcur10u55 karma

Same with us, but many different Specialists left us with large bills after insurance and our disposable income, Did you ever have any experience with the way UC HEALTH handles past due payments?

uchealthorg6 karma

Angela: No issues.

mle_the_savage5 karma

What are some of the best ways to support a friend with lymphedema?

uchealthorg7 karma

Angela: Understanding that lymphedema is physical but also emotional/psychological. They can have good days and bad days. Because it's a disfiguring disease, it can be difficult for them to manage some days.

taco_bout_fit5 karma

Are there any special precautions that you are having to take now due to the outbreak of COVID-19?

uchealthorg6 karma

Angela: Yes and no. Because I have lymphedema doesn't mean I'm more at risk for COVID-19. However, if you are prone to infections you do have to be more careful and take precautions. People that have extensive lymphatic abnormalities would definitely need to take precautions.

FatGuyFromSmashMouth5 karma

Three parter:

(1) As a fairly active person who’s spent the better part of the last two weeks “sheltering in place” in Los Angeles (and had their exercise regimen reduced to anxiously pacing back and forth and hitting refresh on google news) do you have any tips or recommendations and/or can you share your plans for staying active during a potential, protracted quarantine?

(2) In your uchealth profile you talk about doing tons of research as part of being an informed advocate for awareness and champion for your cause. How do you vet articles and literature to distinguish actual, scientifically sound research into emergent and novel medical procedures and treatments from medically unsubstantiated nonsense and unscrupulous snake oil salesmen?

(3) First thought, best thought: Favorite dinosaur? GO!

Thanks!

uchealthorg5 karma

Angela: 1. There are lots of opportunities for online workouts on YouTube and social media. My favorite is my trainer's Zoom classes he's put online. I have heard Orange Theory Fitness is also pushing classes for free online. Every day I do take a walk to get some fresh air.

  1. Great question. Reputable sources. The Lymphatic Education and Research Network website, lymphaticnetwork.org, has great information and resources coming from doctors and experts about the condition. Definitely stay away from sources you don't know.

  2. T-Rex. Yours?

Lasdert9145 karma

How did you know you had cancer in the first place? My wife is over 40 and she’s getting the regular checkups. She’s freaking out of her hair as she gets older because she survived lymphoma when she was a child.

uchealthorg6 karma

Angela: That's the thing. I didn't know. In hindsight, symptoms were there. However, I didn't miss check-ups and then one check-up I received a call from the doc to come see him. Even then I wasn't worried as in the past I had had abnormal pap smears. At that time, he told me that I had cervical cancer. My only symptom was spotting. I was 45 so I attributed that to getting older and what is normal.

90slaughtrack5 karma

How did you feel when you received the the diagnosis for lymphedema in addition to cervical cancer? Did you feel like you just defeated one battle to take on another? Did you feel more prepared to take it on than when you received your original diagnosis for cancer?

uchealthorg8 karma

Angela: Initially, I was really upset with my diagnosis of lymphedema. I had overcome cancer and I was cured and moved on. There is no cure for lymphedema and it felt worse. Knowing that there is no cure, I turned it around and dug deep in that I overcame cancer so I'm not going to let lymphedema win.

Norgeroff5 karma

What color is your toothbrush?

uchealthorg8 karma

Angela: It's white. I have a Sonicare. What color is your toothbrush?

M277358594 karma

I am unfamiliar with lymphedema and curious what are other health issues outside of the chronic swelling come with the disease?

uchealthorg8 karma

Angela: Other symptoms include a sense of heaviness and tingling in the limb. I always compare it to when your arm or foot falls asleep. Another symptom that I experienced was my skin stretching that it felt like it was going to burst.

maddiep814 karma

People are quick to judge based on appearance, age, etc. What do you wish the average person knew about lymphedema?

uchealthorg3 karma

Lymphedema is not obesity or a “fat disease”; it’s a disease of the lymphatic system. Lymphedema takes a toll emotionally, physically, and financially. It is estimated that up to 10 million Americans and 250 million people worldwide suffer from lymphedema, and there is no cure. More people are affected by these diseases in the U.S. than suffer from Multiple Sclerosis, Muscular Dystrophy, ALS, Parkinson's Disease, and AIDS – combined. Lymphedema affects an estimated 15% of all cancer survivors and up to 30% of breast cancer survivors. Those living with primary lymphedema are born with the disease but can develop symptoms at any time. Yet our community suffers from a lack of awareness, misdiagnoses, and a shortage of treatment facilities.

press-f-for-respect4 karma

Does it cause any pain? If so, is it constant, pulsating, etc. How do you relieve/ignore it?

uchealthorg5 karma

Angela: Initially, it was painful because it felt like my skin was going to rip open with the fluid building up in my leg. Once I started my therapy to get it under control, I no longer have pain.

-TrouserSnek3 karma

Angela, who’s your favorite co-worker? You can’t say Shannon.

uchealthorg5 karma

Angela: LOL. Cory is my favorite co-worker.

KingRasmen3 karma

I just want to say that you are incredibly strong, and a valuable person =D

My mother was diagnosed several years ago with Stage 4b cervical cancer. I drove her to and from radiation every day, and chemo every week during her treatment. She was put on immunotherapy after, as they couldn't remove the tumor surgically. She was to start a second series of chemo this prior November, unfortunately, after the first round, she developed swelling in her leg which was diagnosed as a blood clot, and passed in about 3 days. Because of your story, I now plan on going back through those medical records to see how well that diagnosis was made. I am not very skeptical of the blood clot diagnosis, but this is definitely interesting. I can see how the two could be confused because your description of your symptoms was a lot like my mother's.

She fought cancer hard. But, even I could tell after 3 and a half years, she was just tired.

Again, you are incredible, strong, and an inspiration. You've got this!

I, too, have a condition for which there is no cure. Having no cure to me makes it easier, because then it's just part of my normal life. It is my uniqueness. There is no cure for life, anyway :)


As for questions: What stage cancer were you at when diagnosed?

Does lymphedema correlate more strongly with those with longer survival rates, or is it mostly a factor of the number of lymph nodes removed?

Finally, pancakes or waffles?


Congratulations again on being awesome!!

And a huge thank you to UCHealth for being part of our society acting as the janitors, custodians, and mechanics of our own minds and bodies ;)

uchealthorg3 karma

First, I am sorry to hear of your mother’s passing; she sounds like she was a fierce fighter. You are a hero in my book, as a caregiver, it can take a toll. Yes, there are similarities in the presentation of a blood clot and lymphedema, in regards to the swelling. When my lymphedema presented, I initially was checked for a blood clot. Thank you for the kind words, and I agree our disease/condition makes us unique.

Stage 1b1

Possibly both. With survival rates among cancer patients improving, it comes with the risk of secondary lymphedema, and the cancer treatment of lymph node removal, radiation, cause a disruption to the lymphatic system which increases the chance of lymphedema.

Waffles and real maple syrup! Now, I want waffles.

Alex549us32 karma

Hi, this all sounds like it would be very expensive to get all that treatment for! Are you aware that UC Health has been suing thousands of patients every year? Do you think that a public hospital like UC Health should be doing that?

uchealthorg3 karma

Angela: I don't know anything about that.

worriedpatients0 karma

I'm worried about the coronavirus, do you know if UC Health will provide free testing and treatment to locals who just got fired a d lost health insurance?

uchealthorg3 karma

UCHealth: There is a shortage of tests across the country. For now, UCHealth providers are following guidance from the Colorado Department of Public Health and Environment and are testing only medical providers and people who are hospitalized. Learn more at uchealth.org/covid19.