Inflammatory Breast Cancer: Rare, Not Impossible | Tatiana Cordts | TEDxACU
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- Опубликовано: 7 июн 2018
- Inflammatory Breast Cancer is incredibly rare. So rare that, until her mom was diagnosed with IBC in 2016, Tatiana had never heard of it before. But instead of giving into the fear of facing a future without her mother, she chose to become an advocate for awareness in an effort to carry on her mother’s legacy.
In her talk, Tatiana educates the audience about Inflammatory Breast Cancer, shares her mother’s journey, and helps us understand why we should never give up on advocating for our health. Inflammatory Breast Cancer is incredibly rare. So rare that, until her mom was diagnosed with IBC in 2016, Tatiana had never heard of it before. But instead of giving into the fear of facing a future without her mother, she chose to become an advocate for awareness in an effort to carry on her mother’s legacy.
In her TEDxACU talk, Tatiana will educate the audience about Inflammatory Breast Cancer, share her mother’s journey, and help us understand why we should never give up on advocating for our health. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx
Tatiana you and your Mother saved my life. I googled my symptoms before my OBGYN appointment, your video popped up. My doctor of 15 years tried to send me home with Motrin. With conviction I was able to say this is rare but not impossible. I would not leave her office without a better treatment plan because I watched your video. With further testing and proper diagnosis, 3 weeks later I was in an infusion center receiving chemo for 1 year. I was stage 3C.
I am cancer free for 1 year today. Thank you.
How old were you? And congrats on being cancer free 🎉
Please i need your help
I hope the misdiagnosing doctors learned a humbling lesson. A wonderful TEDx Talk, thank you.
This needs to be shared a million plus times. Doctors always pass things off like it’s no big deal. Make them investigate your symptoms and keep asking questions.
maybe this is why it's so "rare"- because of all the misdiagnosis. Perhaps more people have had and died of it, but were told to not worry about it by their doctors- oh it's just a rash, etc.
My friend was diagnosed this week, thanks for caring and sharing...
I've had the same symptoms and it's been 4 months and now I'm going finally for a mammogram and ultrasound and I did look up IBC and I have pushed for testing! Dont be afraid to push your doctors you are your own advocate!
Jenn Radic hi
I hope that your tests are good results
Thank You
Good luck
How did it go? I'm going for my mammogram I've been avoiding today.
Thank you for this talk. I am going tomorrow for my first set of tests to rule out IBC. But I know something is wrong and this talk encourages me to keep checking to find answers. I appreciate you and your mom for helping spread the word about this disease as I had never heard of it before I started experiencing symptoms. Information is power.
As all cancers are on the rise, it seems reasonable that IBC would also become more common. Any physician who would tell a grown woman that she's wearing the wrong bra might be in need of a brain or a heart transplant possibly both. Keep fighting until you have the answer.
Thank you so much for sharing this story, it can help so many other!!
Thank you for sharing this. Great presentation. Prayers to you and your family, always.
Thank you for sharing this! You and esp your mom are so brave!! God bless!
Thank you for sharing, knowledge is power!
Thank you for sharing you mothers' courageous story , I am going through this at this moment and battling with this terrible disease . It brings great comfort to know that I am not alone and that there are people care to send out this message , Blessings
You are not alone, I've been diagnosed as of March 2021. This video brings me hope for myself and others.
Please what was your symptoms before diagnosis
Not alone, I am dealing with IBC diagnosed March 2022
Thank you for sharing your mother's journey
Thank you for the awareness. Bless you 💕
My mother was just diagnosed with IBC stage 3 :( This is so hard to deal with at the moment. I am grateful for this educated video.
Thank you for your story.
I needed to hear this. thank you
Excellent speaker.
You are very strong and resilient xxx
the doctor gave my wife 5 years we got 10 years out of her after 77 treatments if I would have done my homework I think we could have gotten another 10 years out of her the cancer was one step ahead of me
Great TED Talk. Very important and an inspiration 🙏
This is scaring me right now.. this video is the first thing that popped up when searching my current symptoms. Mammogram scheduled for this Wednesday and calling my doctor tomorrow. All the best to your mom, you are all so brave!
Are you ok?
I pray your mammography comes clear and there's nothing wrong 🙏
Did you get a diagnoses
Well? Going for mine today. Was supposed to work actually but It's my own (very small) business so I cancelled my client and am now gathering the courage to go to the imaging office. I've been itchy, one is inverted and leaks this awful smelling goo. Sorry if it's TMI but I'm just very scared.
IBC usually is not detectable on mammograms
Such a beautiful story - extremely inspiring!
Thanks for sharing your Moms story. I’ve Also have fought long and hard as my own patient advocate to get treatment for a rare condition. God bless ❤
Thank you Thank you soo much for this video
Currently in the same situation. Thank you for sharing.
Thank you sweetheart ❤
Thank you
God bless you and thanks💗
Thank you so much. God bless! ❤😎
Thank you for your video
Your mum is truly beautiful.
I have just been diagnosed after being told I was fine...thanks for sharing.
Full Speed Ahead I have my first appointment with an oncologist in one week and I am very scared it’s IBC. My doctor has not said herself that she thinks it is but after googling my symptoms and seeing this video I’m going to push for more tests
What were your symptoms and tests that showed everything was fine?
How did it go?
Great talk. I like how you have integrated medical information within the telling of your mom's story. It is a heartfelt way to learn about this awful disease.
Awareness is always so important, we should all be more educated on the human body and what can happen to it. Then we can act quickly when we get symptoms, with a better chance of survival. I know we all have admirations for medical doctors but they do sometimes get things wrong. We are in charge of our lives and our bodies so sometimes we have to speak up and push to get the right help. Your Mother would be very proud of her daughter and what you are going to educate people. Thank you x 😄
Thank you!🙏🏻
Good for awareness.
Yes, not all doctors know everything. And the power of research. Thank U for ur heartfelt story 🙏🏽💜
im scared....coz....i only search stuff like this when i think i have a problem ...
Well?
@@JamieYAYme that is a child.
Tatiana thank you so very much for sharing your story and your mother as well. My mother is 83 years old. She was diagnosed with IBC stage IV in May of 2018. It was misdiagnosed as well when her primary physician thought it was a rash. She switch doctors and lucky to find who thought it was IBC. She has an excellent team of specialist working with her. She is positive and doing well as the treatment is work. She is learning to live with IBC.
I will be sending prayers your way for you and your family. She sounds like a very tough lady. Thank you for sharing with me and I'm glad my TED talk could help in any way!
@Mystikal Wisdom Not very wise are you? Careful what you say lest you end up in a similar situation...
I am having symptoms as well and I am very scared. I have my first appointment with an oncologist in a week and now that I’ve seen this video I’m going to bring up IBC.
How did it go?
@@liveforlife21I hope everything turned out okay for you!
Well explained my !ove.
Thank you for sharing this. I never heard of IBC. Have some similar symptoms. Going to get a biopsy this week.
Thank you for sharing. I’m now fighting the battle of getting doctors to be more receptive of checking for IBC. I have symptoms and doctors want to just pass it off as me being over reactive.
Thank you for your courage,your strength,your faith and your ability to put up a fight against this disease we are more than conqueror we are overcomers through him. greater is he that is in u than he that is in this world🌞
As I listen to her testimony im afraid and don't understand my feeling.all she said about sign is with me.. I will undergo mammogram this week I hope my doctor diagnose me right..
Marites Barillo amen
Lost my mum to it almost 3 months ago and she was diagnosed very early from a biopsy after being told just a rash. After 10 months of being diagnosed she passed it’s so hard and I miss her so much
I am so sorry for your loss 😔🌷
Harriet Xxx So very, very sorry that you lost your mother :( I have symptoms of IBC. If it is not too painful for you to discuss, did your mother have any other symptoms besides the rash ? Also wondering why she passed in such a short time ?
Did she not treat it?
@@montecito98 How are you doing? Did you get an diagnosis?
I am so sorry for your loss 😢
I have a good friend who was diagnosed with this a few days ago. Thank you for this video. It helped me better understand the disease.
How is he or she now?
@@carlosp.valerio2523 She has an amazing support network. She started chemo a few days ago.
I have a rare neuro disorder called dystonia which is a movement disorder similar to Parkinson's. Almost everyone I have talked to who has this illness has had trouble getting a good doctor with knowledge of this condition. Many write us off as having functional dystonia(hysterically making it up.) It is so important to be your own advocate and never give up finding a good doc. I went to Mayo Clinic and they were a god-send. We have computers now so networking is important to share the info and latest treatments. An example of stupidity: I went to Stanford to get my brain stimulation device checked as it wasn't working right. The doc instead said I didn't have dystonia even though at least 6 docs from Mayo saying otherwise and it was a moot point as I was already treated and she failed to tell me the device had malfunctioned. They did the exact same surgery at Stanford!! This is the rule rather than the exception even 17 years in. Never give in and never give up til you find the best care available and get on sites to get to know others with the same illness.
I know of someone with dystonia
Beautiful!❤️
Thank you for sharing. A doctor should never laugh or show judgment towards a patient's concerns. Women should trust their guts and keep searching for answers because doctors make mistakes. I kept telling my Oncologist that I was having a lot of pain months before I even felt a lump. It wasn't IBC, but my symptoms matched exactly that at first. Thankfully, after a biopsy and double mastectomy I am staying on top of my health but only because I kept telling my doctor something felt wrong months before it showed on a mammogram or MRI. If I waited and shrugged it off things would have been a lot worse now.
Hey I have the symptoms and am terrified. When you say yours matched IBC what were those symptoms and what was your eventual diagnosis. Wishing you good health and hope you remain well. IBC is usually painless and almost never has a lump.
A youtube Andrea Mills, mother of nine who was breastfeeding and pregnant with her 10th child passed away last month with this. A month or so before she passed she was not feeling well. Went to er a few times. They told her her gallbladder was inflamed and took it out but noticed scarring on her liver. It was cancer. A couple weeks later they told her husband it was IBC. Now her husband is left raising nine kids. So sad.
Green House Homestead 😞
Whole reason I am here... Heard that she had this and was like I have never heard of this... And here I am. Definitely needs to be talked about more!
Thank you for sharing. I was scrolling through looking up some symptoms . I just finished my antibiotics. No changes. Currently waiting on a appointment phone call for a ultrasound. All my symptoms are leading me to believe it's IBC. Thank you again. I did need to hear this!!! Much Love.
angela wisniewski I just left the dr. Gave me antibiotics for the ‘infection’. I told her I would take them to Monday. If not effective by then I told her I want a skin biopsy!
Angela how did things turn out?
Is that better to direct in skin biopsy or go first to mammogram?
@@maritesbarillo7727 Make an appointment with an oncologist.
@@vishyswa how did it go with your appointment
I’m terrified, I have all the symptoms but I’m too poor to get examined....
May I know what is ur symptoms?
I am experiencing the same symptoms
i’m 15 and i’m getting these symptoms
aleida marina go to your doctor
I noticed this morning unusual redness in one spot around my areola. Never had something like that. It scared me right away. I breastfeed my daughter, she is around 17 months old... And I am scared... On monday I am starting to see doctors... I hope it's nothing...but my intuition sadly feels is something. 😢
I am having treatment for IBC just had mastaktumy.
🙌🏻
I am 31 years old. I just had my genetic test for cancer risk because of the same symptoms your mom had: skin rash (dark color), on-and-off pain, asymmetry, and orange skin area. 😞 Hopefully everything is ok. I have 2 autistic kids that need me. I am awaiting results.
Thanks! My daughter has negative stage 3, it's breaking my heart. Her Dad!
:( I'm so sorry. How old is she?
Pls what was her symptoms
❤️❤️❤️❤️
Smh absolutely heartbreaking. Doctors are so egotistical!
My sister has this 😢
Is your sister okay? I think I might have this.. if it’s undetectable thru mammogram I’m going straight to biopsy
got a call yesterday that this is what my mother has - seems to have started 10 days ago - biopsies happen this Friday - kinda scary - seems doctors at least were smarter than Tatiana's mother, but will see
Did you get it confirmed hopefully it wasn't cancer?
How sad to have cancer ♋️
Dermatologist. Don't go to anybody else. They know what it looks like.
Did the rash remain and grow larger? Or did the rash go away and return?
It stays. It does not go away at all.
I have a rash and it comes and goes. I've read that it can do that.
Can you have ibc without the rash?
How did it come to be
It really is unforgivable that her primary consultations with her Drs were ignored & she wasn't taken seriously!! Sorry,but id be furious & certainly let them know it!!
The physician laughed??? I am chocked!
E Jensen
Really?
If you only knew...
E Jensen I am not shocked at all, I am RN x 20 years ... I have worked with a lot of humble wonderful docs but also plenty of rude and arrogant docs who really don’t give a damn as long as their vacation homes are being paid for
I hate doctors that laugh because they think it's cute that you're worried about something that is "rare" . Rare really means nothing . Do the tests If its a possibility. Absolutely ridiculous to laugh at worrying about something that could kill you. 💔 it's not cute or silly to be concerned!!!
3 years begging for help . on Monday I finally see someone. Idk what may happen
I’m in my bf RUclips but same here I feel it every symthoms I finally getting a biotospy on the 27 th 🥺
How are y’all’s results?
Pain in lymph nodes bad idk of this is system
Haven't got help.tmr is my appointment
Was her rash itchy?
👏🙏👏🙏👏🙏👏❤❤❤
U cant trust what doctor or hospital say a woman knows when something is really wrong tho!!
I’m 19 and i just noticed symptoms
holy_lifexox thank u i did and it won’t kill me i bet something else would
@@unknowncreature3832 aw don't say that try to have a positive mind set don't worry you'll be ok 😊
Where does cancer ♋️🦀🦞come from
What diet did ur mom make it...
What causes cancer ♋️
By time they finds out u got this its too late u die when they could have saved u
1 % rate, '' EXTREMELY rare ?'' really ?? It might be for a person who directly/indirectly experiences sickness. However, there are lots of rare diseases. I personally have a hard time due to 0. 02 % possibility gallbladder cancer. A young lady, I am sorry, but I was just hurt listening to your word. You say 1/ 100. I talk of 2/ 100,000. You could say rare. She carelessly talks of "EXTREMELY rare diseases" without considering people who carry on much rare tears.
@Adam you said "Is that all you got, rewatch. 1/100 is still rare"
I know gallbladder cancer isn't usual, and some doctors say "very rare", but you will be surprised with the number of even youtubers who have much rare and incurable sorrow. 50 times less rare condition means it isn't extremely rare at all being compared with lots of various rare illnesses. There is a problem in the thoughtless expression of TEDx. Moreover, I talk of my feeling and 0. 02 % of my case the same as a person, who is 1 %, can say 1% is extremely rare.
The speaker didn’t decide on her own to refer to IBC as “rare.” It’s the language used by doctors and on many medical sites. ‘Rare and aggressive” is what I kept seeing when I started to research for my own purposes. Her main point that rare doesn’t mean impossible and to be a self-advocate is a good one. Odd to criticize the daughter of a survivor trying to do some good over using standard word choice.
@@mck1542 No your point is entirely wrong since I also said she could say rare. Furthermore, you hurt me again. You are able to be presumptuous because you are not involved with much rare diseases. It seems to be sooo normal that you talk of goodwill, but what you really do isn't different from a person, who thoughtlessly stabs others when they have hardship.
She has every right to call it rare. It is considered rare, considering death is almost always the case within 3-5 years. I am sorry you are going through gall bladder cancer.
It can become stage 4 cancer within 1 month if it's aggressive for IBC. Which this cancer is extremely aggressive. It doesn't make people special to have a more rare form of cancer, it should scare you, because treatments most likely won't work properly. It's an automatic stage 3 when it is found. You should think of the mothers loosing their children to brain cancer at 2. It may not be rare, but it is deadly. It should be taken seriously no matter the case. Don't come to a video, just to take away from others experiences.
Carelessly? I think she would know as well as anyone. Your point illustrates the very problem she is talking about. Did you listen? Her point is no one cares about these diseases because they are considered rare but they aren't impossible- as in there are a lot of people who suffer from so called "rare" diseases.
Thank you