We’d love to hear from you: what were some of your first symptoms? Leave us a comment below 👇 Want to share your story 👉 www.thepatientstory.com/share-your-story/?KZread&

@lorilyndalulu

Жыл бұрын

I first noticed my tumor when I turned over in my sleep and felt a tugging at my nipple area. This was during spring break at the beach, with my husband, youngest son, and some of his friends. No other women around. It was warm to the touch and swollen kind of like an engorged breast feeding moment. I was very diligent about having mammograms as my mother had breast cancer at a young age. I had 25 years of mammograms religiously. 11 months after my 25th mammogram, my tumor had grown to 11 cm. It was nowhere to be found on that last mammogram. That’s why I try to advocate for women to also do your self breast exams on the first of every month - they are as important as yearly mammograms. As they say, “feel them on the first“. 🫶🫶🫶

@punkyjuarez763

Жыл бұрын

Thank you for this video, I just barely reached out to the cancer center about an hour ago because I googled the symptoms that I have been having with my breast and every single link and article was IBC, and when I looked at the pictures, those pictures look just like mine and it terrified me so I reached out to the Cancer center and they emailed me some resources in my city so I can find a doctor and get this checked out. Before we ended our conversation, she told me that even stage 4 can be treated but that scared me because I didn't think it was that serious but the nurse I spoke to was concerned because of how severe my symptoms are and how long I've been dealing with them and not even knowing what it was. So I'm about to start a very scary journey and I'm terrified because I already have a rare autoimmune disease called dermatomiositis which causes pain and inflammation of the muscles and the skin so I just figured it was a rash from my disease and ignored it for over a year until yesterday when I noticed my other breast was purple as well. 😔 If anyone reads this, please keep me in your prayers and cross your fingers for me because I don't have anyone to lean on except for my daughter and I'm very scared. 🥺 Thank you again for this video, it really means a lot to me.

@scotchbarrel4429

8 ай бұрын

My partner has the symptoms, im now looking into it, so far not too many positive stories, appreciate you explaining your story. Appountment next week for the mammogram, for now were focused on getting her weight down, always knew weight could be a conteibuting factor, didnt think it would amount to IBC, im abit annoyed, hopefully the mammogram comes back with a minor result or curable result.

I discovered I had cancer right after my mother’s funeral. I had found something beforehand but was too busy as a caregiver to pay attention. I received a third notice in the mail to make a appointment for a mammogram, and finally went. Like you, I didn’t have a lump. I had thickened skin along one side of my breast. It was very flat and somewhat hard like a callous. I remember thinking that was very odd. I was diagnosed with a stage 3 aggressive cancer. I had chemo first, then surgery, then 25 radiation treatments. I now take a hormone pill. My sister and husband were my champions. I could not have done this alone. I think you are a brave and strong person, and very well spoken.

I’ve never heard of inflammatory breast cancer before. Thank you for sharing your story.

Not sure how I found myself on your post - but I just had to say what a brave, honest portrayal you have given. Your strength and way of expressing your fears and brutal honesty is graceful. Your love and consideration for your family and those around you shows. This all makes me think I would most definitely want to be a friend of yours. If our paths ever cross - you would have a friend in the US. I think your cancer has met its match!

@nikkimcgee629

Жыл бұрын

What a lovely thing to say. My family have been a huge support, especially my eldest daughter

@leeannisnor2877

Жыл бұрын

My younger sister was diagnosed initially with a strained muscle. She had her usual mammogram in November and nothing showed up. In January she went again to her GP for the same ‘ache’ in her left breast. She started noticing some inverting of that nipple. Walked in without an appointment to a breast health clinic and was diagnosed in 90 minutes and had her breast removed that afternoon. An MRI showed hot spots throughout her body. Inflammatory Breast Cancer stage 4.. She was gone by June. My heart breaks for her but beats happily for you and yours. May your journey continue to be positive and your life fulfilling.

@stelladowsett7151

Жыл бұрын

@@leeannisnor2877I’m so sorry for your loss❤

My breast cancer hurt as well. I wish doctors would investigate boob pain the way they investigate lumps.

@jackiehowdon5099

9 ай бұрын

My consultant told me that the sharp stabbing pains in my left breast were purely coincidental. Now the breast has been removed the pain has gone.

@pradnya3820

2 ай бұрын

​@@jackiehowdon5099really (

I found your comment 'I didn't tell people because I didn't want to handle their reaction - so insightful and resonated with me. It was exactly the reason I didn't tell my immediate family for seven months but i didnt know that that was the reason for not disclosing it. And also a very flat email to work . Just line manager . And colleagues again didn't tell because it was too draining to have to deal with their reaction . Thank you for sharing your story. It's helped me make sense of what I'm going through.

I can see why you love being a teacher as you told your story with grace & dignity. I wish you a full recovery & send my best wishes to you & your family.

I have had inflammatory breast cancer I was diagnosed in 2020 it took me coming to Phoenix hospital for this I had tried to get help but nobody would help it was hard to hear but I do understand and I am cancer free now but I do understand I’m so sorry about this it a but I thank you for your testimony and my prayers to you ❤

@Cyndy101

8 ай бұрын

I'm so happy to hear you are doing good. ❤️ I'm a breast cancer survivor of 5 years but it wasn't IBC. Stay well.🙏🏼❤💛

Watching this video was an amazing education in all the ups and downs a cancer patient goes through in the journey. I appreciate the brutal honesty in describing not only the physical, but mental side of things, too. Thank you for addressing the need to support spouses, significant others and/or caregivers in dealing with cancer. They are challenged, too. I'm sending much light and positive energy in your path to good health.

@nikkimcgee629

Жыл бұрын

Thankyou @jodiewilcox6772. I hope it does make people remember the partners

Thankyou for sharing your story, I am 36 and getting some of your symptoms in my left boob, I have just had a an ultrasound yesterday today iv been called back to GP as there was a lump detected in my right boob iv been considering demanding a tissue biopsy on left when they do the right biopsy, after hearing your story there is no doubt I’ll be demanding biopsy of both breasts, fingers crossed it’s nothing.. initial symptoms : left boob nipple tenderness, the lumps around nipple raised, slight bruised look around nipple for initial 2 - 3 days, ache, warmth, heaviness/fullness some days nothing others constant discomfort, darker colouring to nipple, will update on result

You are a truly amazing lady!

I wish you all the best, stay strong as you are! ❤

Your sweet for sharing your story, brave child.

Thank you Nikki❤

You're an inspiration ❤

You are such a strong lady!!! Would really like to hear how things are going for you. ❤

Ur so inspirational. 💕💕💕

Praying for you! 🙏🙏🙏

Thank you for being honest and speaking so frankly. You are easy to listen to, you have a good way with words and a lovely warm and level way of speaking. I wish you and your family the best.

What a strong inspirational lady. Bless you for sharing. Wishing you health and happiness moving forward xxx

You have given such good advice which l am sure will help many other women

I too had inflammatory breast cancer.diagnosed jan 2022. Still here. On estrogen blocker for another 9.5 years

@foziatabasum-pb4ri

24 күн бұрын

Hy i have also ibc

Oh my! I have had neuroendocrine carcinoma in my pancreas that had spread to my liver. That was 10 years ago. I also was told it was a very slow growing cancer. It had probably been there 10 years. I had a liver resection and 8 weeks later I had the Whipple procedure, an extremely serious and difficult surgery. Five years after I was cured from pancreatic cancer I got cancer in my femur, a chondrosarcoma, another very rare cancer not related to the neuroendocrine cancer.

@NoToYellowpigs

Жыл бұрын

Try to take milk kefir and those food that has probiotic and prebiotic. Nuts and seeds. Legumes, green vegetables,...take all nutritious food. And then try intermittent fasting (IF).

@pterakau

Жыл бұрын

You have also the metabolic treatment of Pr Thomas Seyfried on YT.

@oneloveoneheart

7 ай бұрын

I'm at the breast clinic Wednesday I have a lump, found out accidentally about 2 years ago I have a neuroendocrine tumour in my pituitary gland and also my kidney (angiomyolipoma) my endocrinologist thinks I have multiple endocrine neoplasia

Nikki, you express yourself so well. I enjoyed so much hearing everything you had to say. Good luck with everything.

@nikkimcgee629

Жыл бұрын

Thankyou @blueskyswan

Amazing❤ Nikki please keep confident that all be well soon!

@nikkimcgee629

Жыл бұрын

I have never lost that hope that all will be well . Thankyou!

Thank you Nikki, you have given your viewers an honest and detailed account of your medical problems straight up. I really admire you, you have done so well, so just keep on going there. You are such a relief from the American stuff on Utube, you say it how it is, but THEY bathe in it. You did what you did to help others and I applaud that, the Americans do it for users to subscribe, 'oh my wife has breast cancer', let's make a video. Ridiculous. They even do stuff in the car later, filming themselves with bad news. Who does that? But maybe it is fake, who knows and who cares, I never subscribe to that rubbish. However, YOU, with your story, can make a lot of difference to someone's life. Thank you.

Thank you for sharing your story. I hope you’re doing well.

@nikkimcgee629

Жыл бұрын

I am getting stronger every day. Thanks

What a fabulous video. This should be essential viewing for everyone. You are a true hero

@beckytaylor8041

Жыл бұрын

I agree 100%!

@nikkimcgee629

Жыл бұрын

Thankyou @philwoods3324 and @beckytaylor8041

ThanK you so much ❤

You seem like such a smart lady. Thank you for your wise words and the encouragement you are giving others. It’s a bit sad that we have to become experts in disease ourselves when something like this happens. I wish doctors were better educated in the different types of Breast Cancer. I have heard SO many accounts of girls being told not to worry and then going on and on with cancer growing for months or years. Very disheartening. I also feel that once you have been through treatment the oncologists need to be much better at monitoring for recurrence. So many times people slip through the cracks. It’s very scary and just feels unsafe for a lot of us.

@nikkimcgee629

Жыл бұрын

I have been lucky that I have experienced great treatment - but I still like to stay informed

I have an insane patents story I need to tell. If I’d only listen to doctors I’d be dead.

I'm learning through my jouney to listen to yourself. Your most likely right

Thank you for sharing your story I am going through very similar at the moment, I also heard breast pain is not usually a sign of breast cancer so I’ve been thinking cyst or something else I’ve had breast cysts before but this is different my nipples are now inverted so that’s a little alarming any way I’m getting another ultra sound and mammogram next month so I shall go from there.

Nikki's story highlights the fact that breast cancer doesn't always present with a noticeable lump, making it even more critical for everyone to be aware of the various symptoms and signs. Inflammatory Breast Cancer is an aggressive form of cancer that can progress rapidly, underscoring the urgency of seeking medical attention if any unusual changes in the breast or skin are noticed. 💜

@bdcorgimom

Жыл бұрын

With all the information out there about breast cancer it amazes me that people still don’t know the basics of what to look for.

@nikkimcgee629

Жыл бұрын

@@bdcorgimomI think the campaign around looking for lumps has become so successful that it can lead us to overlook other symptoms. Also when you are a woman approaching menopause or around your period your breasts do change. My symptoms were very slight

@cac2821

Жыл бұрын

@@bdcorgimom I had been in the medical field for years, took care of patients and my step mom had breast cancer ( rest her soul) and I did not know ( nor had I ever heard) of inflammatory breast cancer until a doctor mentioned it to me, until she seen my breast. Don’t down other people due to the lack of education provided on this.

@dierdriu

10 ай бұрын

@@bdcorgimom This isn't the "basics" of what most people are told. Most people are told to get regular mammograms and do self-exams for lumps--neither of which helps identify inflammatory breast cancer in most cases. Most people are used to being told that lumps or changes in their breasts are "fibrocystic" and related to menstrual cycle or breastfeeding. With all the information you clearly know, it amazes me that you're choosing to mock others instead of educating them.

All the best wishes 🙏 God is good Take care 💗

@nikkimcgee629

Жыл бұрын

Thankyou

Don't be so hard on yourself. Even if you had mentioned it to a GP you probably would have been Gaslighted again and told something else. I was asked to wait till I was 50 for a mammogram as it wasn't anything. We moved, changed GP and was diagnosed with stage 3 bc and immediate surgery. My little girl was my miracle child. She wasn't getting much milk either and I had problems nursing. It was ignored. My lobular cancer (in the milk ducts) was 13cm. I have been Gaslighted for years with different things that were finally diagnosed after I went private. Nothing wrong with using Google. Better to think the worst and hope for the best even if it's to rule something out.

@dammar117

Жыл бұрын

"Better to think the worst and hope for the best even if it's to rule something out"... Amen to that. My philosophy, too. I had a cancer scare last year, and I went private, rather than waiting weeks. Turned out to be benign. Best money I ever spent.

I'm not very religious, that said, god bless you

I'm not sure I heard correctly but it seems you feel that you aren't the same strong woman your husband married but I just want to say, please don't think that. You have to be strong to have handled all you've been through so far. Thank you for sharing your story and very possibly helping others with all the info you've provided. I really hope all your treatments are successful and everything will be okay ❤

Ladies please do annual check at radiologist! I do that last 20 years and i sleep without worries.

@lorilyndalulu

Жыл бұрын

Yes! But self-exams can also detect cancer when the mammo misses it. I had 25yrs of mammograms but my BC grew to 8cm in diameter in 11 months. Mine also hurt and had fever in it. Know your bodies, ladies and always advocate for yourself! 🫶

I’ve always been thin. When I had my very first mammogram taken by a woman who had a temper and didn’t seem to know what she was doing traumatized me, I figured, “If I have a lump, I’m obviously going to feel it. No more mammograms for me!” Fast forward a few decades when I got a left axillary lump, I didn’t feel a lump in my breast. So I thought all was fine, except other symptoms sent me to my doctor. He couldn’t feel a lump, either; but, like my gyn, he strongly urged me to get a mammogram. I finally agreed to it, and the lady doing the scan told me my left breast appeared larger. Then, when she was telling me the contact protocol for test results, she slipped and told me I’d be making another appointment. When I finally saw my scans, the mass looked huge. But nobody felt the lump. I’ve learned that no matter what kind of jerk you get for a mammogram, or whatever seemed to go wrong, NOBODY AND NOTHING is worth risking your life to avoid a repeat catastrophe by refusing appropriate and necessary medical testing and follow up. My biopsy went horribly; they wouldn’t wait for the pain shot to kick in and numb the area before cutting. And why do they always want to touch during a biopsy? I’m too shy to slap that lady and say, “bug off!”, or even quietly say “stop”. But even those horrible experiences aren’t worth refusing my scans or testing. It’s no excuse. Just get it done. Also, take a photo of your breasts and keep it on file. Take them from many angles. This will help you see if there is a difference, and will help doctors compare, also. Take notes. If one is larger, write it down. Don’t wait for someone else to notice changes. Buy a frontal button up shirt to wear to the mammogram, and don’t wear a bra. This will help you get in faster for breast procedures. Just inform the nurse checking you in, so you won’t have to get dressed in a gown. I think for my next appointment, I’m going to have them add “no unnecessary touching” to my chart. When I’m in pain, I can’t concentrate if someone is rubbing my back. It distracts me. Two more things: Don’t put yourself down. If you keep doing that, your brain is going to hear you. You aren’t stupid. I didn’t have enough to feed my kids, either; so I just fed formula. I didn’t even know the doctor could do something to increase milk volume. Who knows that? You did great!! Yes, your son saved your life, but you did, too! 2. I get occasional cracks on the corners on my mouth. Virgin coconut oil does wonders! It keeps them moist and prevents cracking, and I think there’s a healing element to it. Thank you so much for sharing your story! I always thought inflammatory breast cancer had to have a rash. I have a friend who got it. Her only symptom was every time she took a puff of cigarette, her nipple turned bright red, then back to its color, like a weird party trick. So when she went to the doctor, they immediately took her in and removed her breasts. This was many years ago, and she’s fine now.

Hang in there❤

@nikkimcgee629

Жыл бұрын

I am! Thanks

She talks about many symptoms like we all wouldn't realized them as such. Most were obvious and ones I've "always" know about. But courage and good luck!

@dierdriu

10 ай бұрын

She kept getting brushed aside, so obviously not everyone has "always" known about these symptoms--including some of her doctors. But hey, congratulations on knowing stuff. Here's your prize...

Be strong and most importantly keep trusting God and serve Him🙏🙏

Would love to hear from you.

How are you doing?

if you have an inflammatory breast cancer, does your breast hurt?do you have nipple discharge?

❤

How did they find the initial cancer? Was it a blood test? Colonoscopy?

@amandabass04

Жыл бұрын

It should be a mammogram and/or scan of the breast. Then biopsy

@nikkimcgee629

Жыл бұрын

The initial cancer was in the bowel and was found through a colonoscopy followed up by scans

I have a doctors appointment next Tuesday because I believe I have this as well. The sad thing is I don’t have health insurance so If I do have it I have no choice but to accept I’m dying from it, can’t even fight it.

Did you get genetic testing? It could answer questions and tell you what other cancers you should screen for. My genetic testing explained my breast cancer. It identified another type of cancer the doctors want to screen for more frequently, and guided my doctor to order an ultrasound screening as a baseline rather than in response to symptoms. The ultrasound identified another type of cancer that was surgically and nuclear treated. I highly recommend you get genetic testing

@nikkimcgee629

Жыл бұрын

I haven't has the genetic testing, although others in my family have.

@bojigirl5672

Жыл бұрын

@@nikkimcgee629 The second mutation I had is a bad one and none of my siblings has it. So relying on your siblings’ tests is not a safe bet. Good luck.

When l had the sore feet my dermatologist recommended using the steroid cream and wrapping them in glad wrap at night and this makes the treatment more effective ❤

@nikkimcgee629

Жыл бұрын

Thanks. I will try this - my feet are still sore

I feel like its important to state that You had Colon Cancer and that the breast cancer was secondary so that it does not confuse people looking up information on Inflammatory Breast Cancer as a primary cancer with their onset of symptoms. Inflammatory Breast Cancer does not present with a lump but a change in skin and swelling and redness and orange peel presentation. Not the same as many other types of breast cancer symptom presentation and not related to the primary colon cancer. I pray you are doing well now. I see this video was 5 months ago.

You are beautiful.

You did nothing wrong.

Trying every so hard to listen with integrity. However, you have a partner, you don't have mets, is this a delay, blah blah blah. You were also able bodied before your diagnosis. Being insistent with your Doctor. :D 3rd cancer diagnosis here. Been advocating "for myself" and my children for a really long time. Anyway, trying hard to empathise but, to me, you're just lucky really.

@user-gt2hr8yk4x

5 ай бұрын

first cancer diagnosis was osteosarcoma aged 19

@joycole2562

4 ай бұрын

No one who goes through cancer is lucky. Hang in there, Nikki!

@user-gt2hr8yk4x

4 ай бұрын

then you've not listened to a word I've said. That's ok.@@joycole2562

All these people that has Cancer returning.... Nothing to do with a trial injection program...at all. :/