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.

@TX.Cat.Whisperer

10 ай бұрын

How old were you? And congrats on being cancer free 🎉

@MrZai-eb7gc

2 ай бұрын

Please i need your help

I hope the misdiagnosing doctors learned a humbling lesson. A wonderful TEDx Talk, thank you.

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.

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.

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.

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.

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!

@customade4175

5 жыл бұрын

Jenn Radic hi

@customade4175

5 жыл бұрын

I hope that your tests are good results

@jennradic1014

5 жыл бұрын

Thank You

@jennradic1014

5 жыл бұрын

Good luck

@JamieYAYme

4 жыл бұрын

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.

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

@natureyogi2607

3 жыл бұрын

You are not alone, I've been diagnosed as of March 2021. This video brings me hope for myself and others.

@pascalineuguru8939

2 жыл бұрын

Please what was your symptoms before diagnosis

@maureensuggitt3217

Жыл бұрын

Not alone, I am dealing with IBC diagnosed March 2022

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

My friend was diagnosed this week, thanks for caring and sharing...

Your mum is truly beautiful.

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!

@jasminenelson9794

5 жыл бұрын

Are you ok?

@AyishahAref

4 жыл бұрын

I pray your mammography comes clear and there's nothing wrong 🙏

@casspeters620

4 жыл бұрын

Did you get a diagnoses

@JamieYAYme

4 жыл бұрын

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.

@stephanieal-sabah5898

4 жыл бұрын

IBC usually is not detectable on mammograms

I have just been diagnosed after being told I was fine...thanks for sharing.

@liveforlife21

4 жыл бұрын

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

@samanthahernandez7034

4 жыл бұрын

What were your symptoms and tests that showed everything was fine?

@juscause3087

Жыл бұрын

How did it go?

im scared....coz....i only search stuff like this when i think i have a problem ...

@JamieYAYme

4 жыл бұрын

Well?

@ookipuki

2 жыл бұрын

@@JamieYAYme that is a child.

Thank you for sharing your mother's journey

Thank you for the awareness. Bless you 💕

Thank you for your story.

Thank you for sharing, knowledge is power!

Thank you sweetheart ❤

Thank you so much for sharing this story, it can help so many other!!

Thank you Thank you soo much for this video

Thank you for sharing this. Great presentation. Prayers to you and your family, always.

Thank you

God bless you and thanks💗

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.

@tatianacordts3707

5 жыл бұрын

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!

@sunnydel4818

5 жыл бұрын

@Mystikal Wisdom Not very wise are you? Careful what you say lest you end up in a similar situation...

@liveforlife21

4 жыл бұрын

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.

@juscause3087

Жыл бұрын

How did it go?

@lasherry6275

11 ай бұрын

@@liveforlife21I hope everything turned out okay for you!

Thank you for sharing this! You and esp your mom are so brave!! God bless!

Thank you so much. God bless! ❤😎

You are very strong and resilient xxx

Good for awareness.

Great TED Talk. Very important and an inspiration 🙏

Such a beautiful story - extremely inspiring!

Thank you for your video

I needed to hear this. thank you

@robingarrett3171

5 жыл бұрын

Excellent speaker.

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.

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

@rebeccakathrynaube2942

5 жыл бұрын

I am so sorry for your loss 😔🌷

@montecito98

4 жыл бұрын

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 ?

@diwali333

4 жыл бұрын

Did she not treat it?

@floryespinoza5973

2 жыл бұрын

@@montecito98 How are you doing? Did you get an diagnosis?

@judieahmed98

11 ай бұрын

I am so sorry for your loss 😢

Thank you!🙏🏻

Currently in the same situation. Thank you for sharing.

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 ❤

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 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.

@Pretty60s

Жыл бұрын

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.

Well explained my !ove.

Yes, not all doctors know everything. And the power of research. Thank U for ur heartfelt story 🙏🏽💜

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.

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.

@carlosp.valerio2523

4 жыл бұрын

How is he or she now?

@KellyODo

4 жыл бұрын

@@carlosp.valerio2523 She has an amazing support network. She started chemo a few days ago.

Thank you for sharing this. I never heard of IBC. Have some similar symptoms. Going to get a biopsy this week.

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🌞

@maritesbarillo7727

4 жыл бұрын

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..

@Entergalactic

3 жыл бұрын

Marites Barillo amen

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.

@carlalb6182

4 жыл бұрын

Green House Homestead 😞

@jennifervinson2688

4 жыл бұрын

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!

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. 😢

Beautiful!❤️

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.

@heatherd5609

3 жыл бұрын

I know of someone with dystonia

I am experiencing the same symptoms

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.

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.

@ValerieHollifield

5 жыл бұрын

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!

@lindaf114

5 жыл бұрын

Angela how did things turn out?

@maritesbarillo7727

4 жыл бұрын

Is that better to direct in skin biopsy or go first to mammogram?

@vishyswa

4 жыл бұрын

@@maritesbarillo7727 Make an appointment with an oncologist.

@vanessaalcala9283

4 жыл бұрын

@@vishyswa how did it go with your appointment

i’m 15 and i’m getting these symptoms

@nicolejay272

4 жыл бұрын

aleida marina go to your doctor

How sad to have cancer ♋️

I’m terrified, I have all the symptoms but I’m too poor to get examined....

@RR-gi2we

3 жыл бұрын

May I know what is ur symptoms?

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!!

🙌🏻

Smh absolutely heartbreaking. Doctors are so egotistical!

Thanks! My daughter has negative stage 3, it's breaking my heart. Her Dad!

@yourerightimwrong4567

2 жыл бұрын

:( I'm so sorry. How old is she?

@pascalineuguru8939

2 жыл бұрын

Pls what was her symptoms

Dermatologist. Don't go to anybody else. They know what it looks like.

How did it come to be

My sister has this 😢

@zairegosain

Жыл бұрын

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

@juscause3087

Жыл бұрын

Did you get it confirmed hopefully it wasn't cancer?

The physician laughed??? I am chocked!

@dannac_8888

5 жыл бұрын

E Jensen Really? If you only knew...

@333AppalachiaEnergetics

5 жыл бұрын

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

@ookipuki

2 жыл бұрын

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

@shalemadsen3278

Жыл бұрын

I’m in my bf KZread but same here I feel it every symthoms I finally getting a biotospy on the 27 th 🥺

@dominicaguirre5207

Жыл бұрын

How are y’all’s results?

@madalynsharp9583

Жыл бұрын

Pain in lymph nodes bad idk of this is system

@madalynsharp9583

Жыл бұрын

Haven't got help.tmr is my appointment

👏🙏👏🙏👏🙏👏❤❤❤

U cant trust what doctor or hospital say a woman knows when something is really wrong tho!!

Did the rash remain and grow larger? Or did the rash go away and return?

@arianaljc

2 жыл бұрын

It stays. It does not go away at all.

@juscause3087

Жыл бұрын

I have a rash and it comes and goes. I've read that it can do that.

@michelerunyon9593

11 ай бұрын

Can you have ibc without the rash?

Was her rash itchy?

I’m 19 and i just noticed symptoms

@unknowncreature3832

3 жыл бұрын

holy_lifexox thank u i did and it won’t kill me i bet something else would

@shadyxox

3 жыл бұрын

@@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.

@gisk7846

4 жыл бұрын

@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.

@mck1542

3 жыл бұрын

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.

@gisk7846

3 жыл бұрын

@@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.

@arianaljc

2 жыл бұрын

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.

@pixality7902

2 жыл бұрын

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