My IBC Symptoms

Well up at 5 a.m. again.  It dawned on me that my symptoms weren’t overly obvious, and if I hadn’t been as aggressively pursuing an answer I could be in a much worse off condition.  Dr. Slovak, the surgeon who I was referred to after going to the ER lectured me at our first visit and said it would be very unlikely for me to have IBC (hadn’t seen my boob yet) because of my age -that it is usually in older women (NOT TRUE), and it’s bright red with a rash.  After his 10 minute lecture (I mentioned possible IBC when we first met and he asked me why I was in his office and this set him off), he looked at my breast then said and I quote ‘well I can see why you might think that, you do have the thickening of the nipple and a little bit of the peau d orange.  Let’s set up an U/S & mammogram’.  I then said ‘well I read that those tests usually won’t pick up IBC because there rarely are tumors with which to draw from right?’ he said yes that’s right but let’s start here and work our way up.  The Breast Scheduler made my u/s mam appt. for the Tuesday of NEXT week-and this was just Weds.  That is a long time away when you think you have this (or any) disease.  This wasn’t good enough so by way of my whining and pushing, they did end up getting me in to a different facility than theirs that day.  Everyone was very casual about it.. it was like my house was burning and I’m trying to rush them along but noone sees the fire but me.  As suspected they did see some nodules I guess is the term after the mammogram and U/S and the radiologist came in to say let’s biopsy this week.  And here I am. 

My symptoms started about 2 months ago- maybe a little longer but I might be off on it because like I said I thought nothing of them and didn’t pay attention. 

Stabbing pain was the beginning.  This wasn’t all the time, or even very often at first and came on mostly when I was sleeping.  I remember it waking me up a few times, and I would just change positions. I should have noticed it though because this pain is not the dull ache we feel during our cycle (everyone kept asking me about that) it felt like a little knife inside literally stabbing me.  So for me that was first- sharp pain, stabbing pain.

Then later I would say several weeks to a month I remember stumbling into the bathroom in the middle of the night and catching myself in the mirror and stopping to stare at my breast.  My nipple looked funny, it was bunched up pulling itself inward.  I remember thinking, hmmm that’s weird and going back to bed. 

Fast forward more weeks to a month and here I am.  The only thing that caught my attention to call someone and be worried was that the pain increased in a short matter of time, my breast had gotten bigger and my nipple was definitely looking pretty funny.  But it’s the pain that really got me, it was often and then ended up being constant.  We were at the Easter egg hunt the day before Easter and I’m standing to the sidelines getting ready to race and I told Ken ‘ my breast hurts pretty bad’ and he was like, it’s probably nothing.  Later that day I called the advice line and the nurse said to get to the ER within 3 days.  At first, she said 24 hours and then changed it but said if the pain increased or I noticed more symptoms get in ASAP.  Easter morning, the pain had increased so I went in.  So those were my symptoms, and I hear the tumors are large so I obviously should have been paying more attention and listening to my body but I had never heard of IBC before, and it is widely common that pain is not associated with breast cancer.  I intend to make sure everyone I know has heard of this and is aware.

Ok so my symptoms were stabbing pain first, then nipple inverting and a slight darkening of the nipple (it was just pulling upward it didn’t look like some of the pix i saw online), breast size increase along with ridges and thickness developing and then at the time of diagnosis texture change peau d orange just a little bit-it is still just slight.

I did not and still do not have:  rash, itching, red color like some pix or even much of a red tent to my breast.  There wasn’t any more heat being generated than my other breast, no nipple discharge then or now. 

Also, the antibiotic that the ER doc put me on didn’t change anything other than some of the swelling going down.  i did notice it getting softer and not as hard as a rock, the doctor said it could be because maybe there was an infection along with everything else going on but who knows.  I have seen some of the pix of IBC online, and my breast doesn’t really resemble alot of them so I think it is important for everyone to know all about the symptoms so they don’t get misdiagnosed as mastitis over and over.

65 thoughts on “My IBC Symptoms

  1. Juliett July 30, 2009 at 10:05 am Reply

    Lyn,
    I came across your weblog while researching (as I have done ceaselessly now for 8 weeks) information on ibc. I simply had to write you (a fellow writer myself!) to THANK YOU for your time, courage, resiliency and out-right awesome attitude in creating this blog and stating a lot of what you do. Specifically, how your symptoms weren’t “typical” (as if there ARE typical symptoms of ibc!) and your determination to get the appropriate testing/biopsy. I am struggling myself right now with a strong suspicion that I have IBC, and have for 8 weeks now, with NO ONE doing anything. I’m 32, no children, and my symtpoms are now bilateral. As soon as I say this on the phone to a nurse, or before the doc even looks at my tata’s, I get the whole berade of the rarity of ibc, my young age, and throw in bilateral presentation, and they act as tho me growing a penis would be more likey than ibc of both breasts. It’s been terribly frustrating, and the biggest issue I too have had is that I don’t have prominent “redness.” This seems to be what all the docs “hang” on. They are slightly pink in areas, but quite faded. Everything else is there- especially the pea d’orange and dimpling/ridging of the skin- I call it skin crud! I’ve had all the garden variety tests- u/s, mammo, even breast MRI- all “negative” of sorts, with the exception of very dense breasts and “prominent asymmetrical background enhancement” on the MRI. No follow up ordered by doc. I continue to get worse, and more and more scared by the day. I am tryinig to “demand” a biopsy, but you can’t just “do” that- it has to be ordered by a doc. I’ve made an appt with a specialist I saw a month ago for follow up (who proceeded to tell me that my symptoms and “diagnosis” were AGING! At 32?? Wow.), and am hoping that I can convince her to get me a biopsy. I don’t know what else to do- as you know, nothing can definitely rule this out except a biopsy. So, long story long, I want to thank you for your blog here- I just made this appt today, and then had “dialers remorse” I guess, as I was feeling crazy and thinking- if the docs aren’t concerned, why am I? Anyways, I found your site, and your strength comes thru and speaks strongly to me. It’s made me feel that I’m doing the right thing- no matter what the results.
    Any tips you might have to share with me on how to delicately “insist and demand” a biopsy is well appreciated!
    Keep up the good fight, Lyn. You are inspiring. My prayers are truly with you.
    Thank you for reading this. Feel free to email me if you wish. j9e9d9@hotmail.com
    Juliett

    • Lyn July 30, 2009 at 10:33 am Reply

      Thank you so much for your kind words and support. I sent you a private email to discuss.

      Lyn

    • Cory June 16, 2014 at 5:19 pm Reply

      i’m going through the same problems. Im a mother of 4 and these doctors,specialist don’t care, or we have bad insurance and the insurance company’s strong arm these doctors to be vague about whats wrong and get us out the door or think we are too young, how does that make sense when Kids get cancer and older people do but it doesn’t affect women 20-60 ? It zero sense . Anyone any age can get cancer. Back to IBC. Most Dr’s don’t have the knowledge of ibc and its symptoms. so they go by the old standard ,NO Lump. No Cancer. These terms need to change , We have lost to many in this battle of Cancer. i have all symptoms of IBC . and they say oh come back in 6 months. so i wrote a cancer center and they said to go to a dermatologist and they would do a biopsy in a heartbeat. im going there asap . i will let you know what happens , good luck. i wish all of you the best and we all need to stand up together, these doctors dpt care about us, but we have [people that do. We matter.!!

  2. Helen December 5, 2009 at 11:40 am Reply

    Hi Lyn. Thanks for your blog. I just sent an email to Juliette, here it is. I hope that you are doing well.
    Helen
    aparadiseflower@yahoo.com

    Hi Juliette
    My name is Helen and I just read your post on an IBC symptoms blog.
    I want to know if you have gotten any help with your breast symptoms, and how you are doing. I am in the same boat recently with weird breast pains, itching, and a birthmark-looking rash that is not going away with the prescribed cream my doctor gave me.
    I am up to here with these doctors making me think I am crazy! You won’t believe what I have been through this month.

    I FINALLY got a mammogram done this past Thursday, follow up will be this coming friday. I still want an MRI and biopsy done. These doctors tell me that my breast has to practically look like an alien before they do something, and from what I have been reading, not everyone gets the typical IBC boobies.

    • Lyn January 26, 2010 at 4:51 am Reply

      Sent you an email:) Also for everyone, Juliette did NOT have IBC. This was wonderful news and just shows how careful we have to be.

      • Renee February 9, 2011 at 9:29 am

        So glad to hear about Juliett…am experiencing similar but slightly different symptoms and really scared! Mine is also both breasts with a red raised itchy rash. Occasional dull pain and a bigger pain in my head/heart as I wait to see if the creams will rid me of my problems.

  3. Kayln January 25, 2010 at 5:42 pm Reply

    Lyn and Juliett- I am 22 years of age and have large breast. I’ve been doing my research on my symptoms and came across your blog. Boy does this sound familiar!?! This has been going on for a week now, but about a month ago I had symptoms that somewhat faded away. Wether they actually did, or if my mind was convencing itself that is was nothing is the question. My right breast is significantly larger than the other, expecially towards my armpit. It’s noticable even through a bra and shirt. It’s very sore to the touch and even just from the vibration of walking. Also about 45-50% of it is one big hard area. I have no redness or orange-peel apearance however. I have a doctors appointment tomorrow afternoon. I have gone to the same doc since I was a toddler and know his style well. I know he is going to look at me like a drama queen and say come back in a month if the pain/ swelling persist. But after research and both of your stories, I will NOT stand for it. I’m not going to have this brushed off and them die in 5 years because of a misdiagnosis. I’m two weeks away from my period and I’m not pregnant. Do you think I should be as conserned? I just don’t wanna be one of those statistics of women who had IBC or any type of breast issue that went unoticed. Look foward to hearing from you! Good luck to you both

  4. christie May 20, 2010 at 8:33 am Reply

    hi my name is christie and i am 33 , i have been having some symptoms for a little over two weeks now. Went to doc the first week, when i noticeds incredible itching and redness on right breast. she looked at it and said contact dermatits, i did not believe her because there was not bumps or rash there.gave me hydro to put on it and said if it did not clear up in a couple of days to go to a dermat., then i started to look up some pics and info on breast cancer and just thought that maybe a u/s would show something , had to beg to get that , and went in yesterday for u/s and dr said he said nothing, and i mentioned the pain and he said to me that bc does not cause pain and it was probably hormonal, i told him i had a hysterectomy 4 yrs ago so i know that it was not from that, i have some swelling, slight pink , and bumps that started like a bug bite but are now a raised welt along the side of the breast and crease of the inside, they itch and hurt , i feel pain all the time in the whole thing, and they really hurt, i took a pic and the redness is really there, the left breast does not look this way , what should i do and who should i go to now? they told me to wait 3-4 weeks to see if it clears up .

    • Lyn May 27, 2010 at 4:46 am Reply

      I sent you a private email, but no response. Hoping you are well!

  5. Nance June 26, 2010 at 4:05 pm Reply

    Hey. I know I’m not suppose to freak out or anything but I am getting a bit worried…
    I’m a 17 year old female and I have this really bad rash on the underside of my right breast…
    I know its not normal cause this has never happened before and it doesnt really look like a rash- its more concentrated and isn’t really spread out.
    Anyways, I know you’re not a doctor or anything, but you seem like you know a great deal about IBC and my symptoms seem to very similiar to yours and the ones I researched…
    But I don’t want to freak out and freak out my family about something that can easily be a simple rash.
    Do you have any suggestions?

    • Lyn June 26, 2010 at 4:11 pm Reply

      Sent you a private email- but yes, Do not freak out!

  6. Dana October 7, 2010 at 11:15 am Reply

    Thank you for this website.

    I am completely worried I have IBC and cannot get into the Dr for a few weeks. I was wondering if I could ask you a few questions?!

    I am 28, I had Papillary thyroid cancer in 2005 and had a total thyroidectomy. (Well I had a partial and the tumour was 3x3x3.5 cms so a few weeks later they went back in to remove the rest. I “heard” that breast cancer “might” be associated with thyroid cancer.

    I have a rash on my right breast. I think I had a rash like this on the same breast about a year ago, and it went away. Sept 24 of the year I noticed a rash on the right breast again, same spot as before. I thought it went away a little bit, but maybe it was wishful thinking?! Hoping it was gone?! Anyway – it itches a bit, and it’s like little raised dots. I haven’t really put anything on it yet – I did maybe once or twice put hydrocortizone cream on it. I don’t know what to think. It’s not swollen, it’s not bigger than the other breast……I don’t know what to think or do.

    Thanks for any advice.
    Dana

  7. jhearn2 February 2, 2011 at 12:32 pm Reply

    HI and thanks for sharing your blog! I am going through some testing right now for breast diagnosed nodules/tumor. I am only 28 and a mommy of a 1 year old, but I have fast-growing, painless lump. I did notice that one of my breast milk ducts never leaked white milk, only yellowish thick fluids. The biopsy of the tumor punctured a duct and lo and behold- that same duct that made the yellow fluid bleeds from the puncture. So I am not sure what is going on. There is a new lump kind-of deep, about the size of a pea forming closer to my chest midline near the chest wall. This time it has been hurting me, sometimes when I take a deep breath. Neither of them have ever hurt during my menstrual cycle. This new one feels like someone is stabbing me and the sharp pain radiates up and down my chest. My blog is here> http://jennhearn.wordpress.com/

    • Lyn February 9, 2011 at 6:59 am Reply

      I hope you let me know how it’s going, and what the outcome was though I’m sure you are fine.

  8. Megan February 27, 2011 at 10:20 am Reply

    I am 20 years old and the day after Christmas, I started noticing that my left breast was sore, heavy, swollen and warm. By the 30 of December, it was a cup size larger, quite painful, hot, slightly red. No peau d’ orange or apparent mass or skin thickening. I went to the NP at OB office and she ordered mammo and diagnostic ultrasound. The radiologist walked in and said “20 year olds’t don’t get breast cancer, except for the two I saw who died”. How reassuring. Long story short after two rounds of antibiotics with no avail and a breast that is continuing to enlarge I went to the NP at my hemotologist/oncologist office ( I have iron def. anemia) and she sent me to a breast surgeon. The breast surgeon convinced the insurance to approve MRI which showed ( and this was less than 30 days from the US that showed only increased density of L breast) showed three lesion of heterogeneous, patchy enhancement with edema and skin thickening and showed L was larger than R) one of these lesions was 2.4 cm. These all appeared in under 30 days! I had a follow up ultrasound done 4 days later and they found the same three lesions which appeared malignant still no palp. mass. I had a vacuum assisted biopsy done which was inconclusive. I had excisional biopsy done last week, also inconclusive. I have requested an appt. at MD Anderson’s Morgan Welch IBC center in Houston. I am glad to know that some other people do not have “huge” breasts or palp. lymph nodes. They haven’t looked at mine in three weeks so who knows what they look like now. I am full breasted to begin with (d cup) so while it’s obvious if you look at both boobs the left is bigger, if you look at the individually, its harder to tell. Feel free to e-mail at.

    To all the other’s on here who are young, I perfectly understand the thing of having docs tell you you are too young! It is ANNOYING!

    Here is a little sanity poem:

    God grant me the serenity to except the things I cannot change,
    the courage to change those things I can,
    and the wisdom to hide the bodies of the doctors I shot,
    when they said “your perfectly healthy, its all in your head!”

    -Author unknown

    Megan

  9. Cecilia May 9, 2011 at 8:34 pm Reply

    I’m 37 and scared. I don’t have insurance and I have the classic signs of ibc. Saw a doc today who referred me for a diagnostic Mamo and u/s for Monday the 16. I put this off too long to see doc now I feel like waiting until Monday is gambling time- your thoughts

    • Lyn May 10, 2011 at 3:58 am Reply

      Take a deep breath first of all. Call around today and see if you can get in anywhere else, you have a referral and if you say that you are being scanned for possible IBC, they may work you in. That’s what I did. Be pushy, take control and don’t take no for an answer. Let me know how it goes- and I’m praying you are not a new member of our club.

      • Cecilia May 10, 2011 at 7:39 pm

        Lyn, I had a diagnostic Mamo today. The nurse first says she’s never seen anyone that has ibc as long as shes been there. I told her, well it is rare. Then after Mamo doc says the results are “stable” what does this mean? He also says your too young- my response Cancer has no age – my maternal aunt had cancer in her mid 30s. She needed a double mastectomy. I told the doc my understanding of ibc is it may not be detectae through Mamo- by the way he never saw my breast. He appeared defensive. I went back to ob/Gyn who referred me to breast surgeon. Husband wants biopsy and blood work – he doesn’t want to leave anything to chance. Thanks for the advice & prayers- Cecilia

  10. Lyn May 11, 2011 at 4:27 am Reply

    Good job on the mammo, I also had the same reaction the first 2 doctors I encountered. They really just don’t know what they are talking about. The only way to know for sure, is with a PUNCH BIOPSY. IBC doesn’t usually show on mammograms because it’s in the skin and tissues not necessarily a tumor. Make sure they do that on an area where the skin is discolored or reddish or itchy. Good luck and keep me posted.

    • Cecilia May 11, 2011 at 4:52 am Reply

      Lyn – I had read many of your posts in the last few days and I am happy to read you are cancer free! What a Blessing!

      My fear is not getting to it on time. Looking at my breast I suppose without the inverted nipples and no peeling of the skin or noticable symptoms- I feel as if no one is taking me seriously except for the ob/gyn who saw me and referred me to ease my anxiety. The discoloration could be brought on by the itching? It’s not red or pink, but brown like? They are putting this appt. out to Tuesday – 5/17. Is IBC so aggresive that 1 week is too long? If the symptoms haven’t worsened should i then not be worried? I will ask for a punch biopsy? Does this also show up in blood exams?
      Your wisdom is appeciated! God Bless, Cecilia

  11. Lyn May 11, 2011 at 5:34 am Reply

    A week is too long if IBC is suspected. try to get in sooner, but if that’s the absolute earliest then it will have to do. They can punch anywhere it’s discolored or itchy, it doesn’t have to be red. My breast wasn’t red either. Take a deep breath and try not to stress. The odds of you having IBC are slim, so just hold on to that thought but push the doctors to get you in ASAP. God bless!

    • Cecilia May 18, 2011 at 1:13 pm Reply

      Lyn, just wanted to send an update. My exams were negative and I am fortunate not to have any breast disease. Thank you for your kind words. I pray your health improves and the Lord blesses you with many years to enjoy your family. God Bless, Cecilia

  12. Marie May 17, 2011 at 3:57 am Reply

    Hi lyn, I’ve been having Breast Pain for 3 months in my right breast, i’ve been diagnosed from fibrocytic breast to a pulled muscle, I have had the itching and swollen lymphnodes and pain under my armpits but my breast has not increased in size I have a small papable lump the size of a bb in my breast also for a year now, it has not increased in size or decreased , my Question to you is ” do IBC always cause the diseased Breast to increase in size?

    • Lyn May 18, 2011 at 7:07 am Reply

      Hi there, I’m sorry you are experiencing this. No it does not always cause a breast to increase in size. There isn’t a steady rule that IBC conforms to, my friend Lori was diagnosed because her back hurt. I am not a doctor, but my opinion is that if it’s been a year that you’ve noticed this it is not IBC. It is always best to be seen by a breast specialist just to make sure though, so try to get yourself in and relieve some of the doubts and stress. Good luck and let me know how it goes:)

  13. Marie May 23, 2011 at 9:56 am Reply

    Hey Lyn thanks for replying to my comment, I have it looked at but I’m on my 4th opinion now with a Breast Specialist, I have a appointment for a Diagnostic Mammogram May 25th, because I am still having pains and, no one has offered me a Mammogram until now, because of my age. I have been under alot of stress and depression lately over this and I’m Terrified because I am a single Mom with Three Children to live for and no Family Support, I pray that Everything turns out ok.

  14. Nicole July 6, 2011 at 8:58 am Reply

    hi lady’s, I have a question maybe someone could help me answer. I have the same pinkish, brown, ulcerated nodules some of you are describing. They all the sudden just started spreading. I have been to the breast doc twice and they basically make me feel as though i am nuts. I had a hysterectomy about five months ago and i noticed about four days ago my breast are very sore and swollen. I had a skin biopsy done a week ago after waiting a year to see the dermatologist and the stupid results said hyperplasia with hyperpigmentation of skin. I have been on about five different antibiotic’s and two different creams and nothing is helping, could someone please give me some advice? take care of yourselves and i will be praying for you all!

  15. jodie kirkup April 9, 2012 at 7:21 am Reply

    hi there im really worried i may have IBC first i noticed a small scaly patch that was thick with red spots on it was really itchy also my boob looked like it had aged by 20 years also alot bigger than other i do have pictures to show this i put my syntoms on Google and IBC come up so went doctors wasn’t happy as she said i haven’t got cancer you need a lump which is WRONG tryed telling her but wouldn’t liston gave me some cream sent me of still didnt feel write so saw another doctor how said i had a bit of swelng to nipple and a small dry patch near nipple saw a breast specialist that gave me a ultra sound and said was all clear and that i just have bit of dry skin use cream and only slight change n size due to breastfeeding.week after appointment started getting stabbing pains not all the times just once or twice a day looks more red and scaly and got pin pricks in that area skin feels strange like winkled some times warm to touch redness comes and goes i got another appointment with diffrent hospital on the 16 this month taking so long 2 week waiting so from start been about 8 wks seeing different docs ect also on antibiotics i getting really worried now and keep looking at me boobs getting bit obsessive now

  16. Jayde September 2, 2012 at 3:15 pm Reply

    Hi…I’m a 30 year old Mum of two…finished breastfeeding about 9months ago. I started getting rashes underneath my right breast about 5months ago and the general area – not just where the rash is feels ‘irritated’, I wouldn’t necessarily say itchy. The last couple of weeks I now have pain throbbing in the same breast…am seeing a Dr tomorrow….a little worried…

  17. Kim Mendes October 30, 2012 at 10:19 am Reply

    Hello Lyn – thank you for your blog. It is comforting to hear from person who has gone through IBC than to look on the internet for “typical” signs and symptoms. I am a 12 year breast cancer survivor (had it at 26), but it was not IBC. Just this past spring I noticed that my nipple was red and slightly pointed down (not a lot, but different than normal). I had a little bit of discharge,but nothing to crazy. I had some pain, but not a whole lot. More irritating than painful. Since I had cancer already, I thought I better get it checked out to be on the safe side. The doctor said, there are no lumps, it isn’t red, yadayadayada….blah, blah, blah…basically it is most likely that you are getting older and your breast are most likely changing. Not exactly happy with that response, I called my cancer clinic and told them about my symptoms. It just so happened it was right around the time for my yearly mammogram, so they said go for that then come see them.

    Well, I went to see them and they said there was nothing on the slides. I was a bit skeptical since a mammogram did not pick up my cancer tumor 12 years ago because my breasts are too dense!! Also they gave me the, your breasts are not red or hot and you don’t have the peau d’orange. Also, they couldn’t feel any lumps….so I must be ok. Needless to say, I was not happy, but I figured they are the doctors, so they know what they are doing. They did tell me to come back in September for a follow up.

    Well, over the course of the summer and fall my breast went from a size B, to a C, to a D! I had sharp shooting pain (from nipple to my chest wall) that sometimes is so painful I have to take my Tylenol 3′s and it wakes me up at night. I have some of the ridging peau d’orange going on too. My nipple is still red and looks a bit weird. So, I go back to the cancer clinic and they order an MRI, “but I don’t have anything to worry about, no lumps and no redness” (ugh!!!!). Can you say frustration!!! I got a call last week that the MRI shows something, what they think is an “enclosed infection” (?). They have scheduled me to see a surgeon next week, because they want to do a biopsy, just to be cautious. They make me feel like I am nuts for being scared and thinking the worst. They keep going over the fact that I don’t have the “typical” symptoms, so don’t worry! Ha-ha, I wish it was that easy. It does make me feel a little better reading your symptoms, because you did not have the “typical” ones either.

    I really hope the docs are right and it is some weird infection (they have me on these horribly strong anti-biotics that don’t seem to be doing anything but make me feel worse!). Thanks for sharing your story, it is nice to hear from someone who has been through IBC and can relay their experience. Much more informative than any website I have been to so far.

    Thanks,
    Kim
    12 year cancer survivor

  18. Carol December 2, 2012 at 7:19 pm Reply

    Lyn,

    I am a four year tnbc survivor. In the last few weeks I have noticed some peculiar things in one of my breasts. I have looked through tons of pictures and read tons of sites. Because I have walked this road before and know the dangers of ignoring even simple signs I am trying to put my mind at ease.
    Your blog is the first I have come across stating you didn’t/ don’t have the a-typical signs. I do have a regular mammo scheduled in February. Here is what is concerning me. my nipple has become almost a dark purple color, and has started to turn/pull over to the side slightly. that breast is a little more full as well…. but here is what is getting my attention…. it is as well what got my attention initially with my first diagnosis (by the way I am now 40) Have sharp pains randomly in my nipple as well as pinching sharp pains in the side of my breast. Almost like someone is sticking me with a needle. I realize you are not a doctor, but when you walk a specific path you learn all kinds of things that other people don’t know unless they walk it or talk to someone who has. I am trying not to stress about it, but each time I have this pain, which is almost daily I worry. So I am just curious what your thoughts are on this.

    Thanks!
    Carol -

  19. Vanessa December 9, 2012 at 9:01 am Reply

    Omg thanks- I woke up with a red “bug bite” but that was a week ago… Should have cleared up by now. And now I have bad stabbing pain above my nipple. On the same breast… Hope I didn’t jinx myself cause I just said today “gee my boobie hurts, well at least it’s not breast cancer cause breast cancer doesn’t hurt…”
    Are you being treated now?
    Good luck

  20. Allie December 13, 2012 at 3:33 pm Reply

    Thank you for sharing your story. I have been experiencing weird issues with breast. Mammo neg and us. But rash,itching and pain getting worse. I keep be told not typical ibc. I have been on antibiotics the only thing it helped was decreasing my lymph node a little. My nipple is not inverted does that mean probably not?

  21. Mariana January 4, 2013 at 9:47 pm Reply

    Hello lyn :) thank you for sharing your story.
    I’m 18 and 9 months pregnant, a few weeks ago I was diagnosed with mastitis. I had gone into the ER due to the stabbing pain I felt in my breast and bloody discharge I was having. I was prescribed antibiotics and sent on my way. The antibiotics were rather useless as they just made the swelling go down a bit. My right breast is a whole size bigger than the left, I have the bruised orange-peel look, the weird swollen half inverted nipple, and the burning in my breast persists. I’m scheduled for an ultrasound on my breast this coming week, but I feel like a biopsy is needed too. I have doctors baffled every time I tell them the situation. I hear “you’re pregnant, they’re just hormonal changes” then they feel it and they don’t know what to say. I’d love it if we could talk, there’s not many people to turn to in a situation like this. My email is marianaugalde_55@yahoo.com :)

  22. Teya May 11, 2013 at 6:34 pm Reply

    Well, I had all the same issues. Due top revues bout with breast cancer, was concerned when skin thickening noticed. Went to see my oncologist for scheduled yearly check up. It is definitely not cancer, he said a rash if it doesn’t clear up I two weesks see your family doctor. Three weeks later I went o a walk I clinic much closer to home. It’s an infection, mastitis, he said and preset ribbed antibiotics. A week or two later, things no better. Off to family doctor. Oh, I think you needed a longer dose of antibiotics. Take these come back in two weeks. No improvement. That is when she scheduled a meeting with a breast surgeon, who told me it was most likely a tough infection and would need to be treated with intravenous antibiotics. But he did decide to do a biopsy.devastating news a week later, no infection, but inflammatory breast cancer. By this time it had progressed to stage fur, so I am screwed. Finishing last chemo Mnday, at least tilnext time thank god I love in Canada so I do not have to battle with insurance companies, but simply go to thr world renowned Princess Margaret Cancer Centre inToronto. Still I am angry, sad, and devastated.

  23. Armida June 6, 2013 at 4:45 pm Reply

    Hello Lyn. I see that the last post was back in January, 2013 and it’s already June. So I don’t now if you’re still answering these posts, but here goes my story anyways. For the past couple of weeks I’ve had an increasing feeling of fullness and tenderness in my left breast. I’m a side/tummy sleeper, so it became most noticeable at night. Now the pain is constant and is stabbing in nature, centered around my areola/nipple. The left breast is perceptibly larger than the right one but it isn’t red or pink. I had a hysterectomy (fibroid tumors) 4 yrs. ago. I should mention that the onset of pain was preceded by weeks of on and off intense itching of my nipple. I’m turning 50 in August. My last mammo (3 yrs. ago) showed fibrous/dense breasts with calcium deposits. My only sister had breast cancer at age 37. She’s now 45. Lots of cancer of varying types including ovarian and uterine on my Dad’s side. Dad died of pancreatic cancer in 2011, his sister had died of it some years earlier. Both his parents and all of his Uncles died of cancer. My one and only Grandson is currently fighting childhood leukemia having been diagnosed last year just before his 4th birthday. So I figure it was the right decision to go see my PCP today. She examined my breast, and quickly asked, “any breast cancer in your family?” I said, “yeah, my sister when she was 37″. Doctor responds, “Oh, Jesus! I want you to get a diagnostic mammogram and ultrasound ASAP.” The soonest appt. available is this coming Monday, June 10th at 3:45 PM. At the dinner table tonight, I mentioned to my husband the breast pain and that the doctor wants the mammogram done ASAP. His response was to ask me the name of the brand of a food we were eating! He never asked anything about what I had just told him nor showed the slightest interest or concern! Mind you, he is fully aware of my family’s cancer history. So now I have to go through the long wait til Monday alone and unsupported. I keep repeating the mantra, “it’s probably nothing!”, but inside I’m actually worried. Any response from you or other posters would be welcome. I feel so incredibly alone right now.

    • Lyn April 24, 2014 at 4:23 am Reply

      I am sorry- it’s true that I had to take a hiatus as it gets overwhelming but I pray you are fine- and I will check up on you.

  24. Emma Winder June 21, 2013 at 9:09 am Reply

    Hi Lyn

    I have come across your blog while researching ibc. Im a 30 year old mom of too and am petrified I have ibc. My left breast is enlarged and warm to the touch. It is not red but is tender and although I do not have orange peel they do look more wrinkly, like stretch marks. I went to the doctor and she just said it was hormonal but it has been a few months and doesn’t not alter when I am off my period. So scared.

  25. Luana terry August 5, 2013 at 12:31 pm Reply

    I have exact same symtoms. Er put me on antibiorics for cellulitis. They did a ultrasound. When i asked them if their diagnosis could be weong, they said yes. I told them i feared ibc and she said well we’ll see how the antibiorics do. Then referred me to gyn. I go this coming thurs. i feel in my not so brave heart that i have ibc. I am so scared. So far the meds have not changed any if my symtoms.

  26. Dana August 20, 2013 at 2:52 pm Reply

    Hello, I am 31 yrs old and in March woke up with a pencil eraser sized reddened area on my right breast, as the months went on it became bigger. It had dawned on me one day that I had horrible itching in that very same spot for what seemed to be a couple of weeks prior to this area appearing. Now it is August, the area is the size of a quarter and a new area has started. there are days that about 1/3 of my breast is red, then days it is just the rashy areas.. I have horrible aching sometimes shooting pains in my breast daily and my lymph node in my armpit is swollen and very painful, my mammogram showed asymmetric density , u/s showed a thickening that had not reached my breast tissue, this was all in May. On the 28th I will go for my biopsies.. I am counting down the days. Every women has different symptoms, I do not have an inverted nipple though there is some small changes with my nipple and areola. I guess my question is, can it progress this slow? 6 months isn’t slow but from what I’ve read it seems ladies are having these changes within weeks or days??? my email is danelana@yahoo.com

  27. Fiona September 29, 2013 at 6:24 pm Reply

    Hello Lyn I am years of age and at present quite terrified. For the last 2 weeks now I have had the red tinge in both my breasts. On further examination you can see little red capillaries under the skin. Thought this may have something to do with my cycles. It has now been a week since my period and the redness is still slightly there. I have noticed that this becomes worse after showering. My Doctor doesn’t seem to concerned. What are your thoughts. Have you heard of anyone else haveing this kind of redness. No other syptoms.

    • Lyn April 24, 2014 at 4:21 am Reply

      I believe I sent your info to a pal of mine, I hope that it helped

  28. Dawn October 3, 2013 at 4:37 am Reply

    Hi, I just found your blog and haven’t even finished your introduction of “symptoms” and had to stop and comment. First, I hope you are doing fantastic. And your analogy of your “house on fire and no one else noticing” is so Right On! Your house WAS on fire. Thank goodness you are a smart and savvy young lady. Ok, I will continue on and read. Oh, and I don’t like this surgeon guy one bit.. . .

    • Lyn April 24, 2014 at 4:21 am Reply

      Thank you so very much- I had to take a hiatus from this blog for a bit but I so appreciate all of the support

  29. Lori November 3, 2013 at 3:12 am Reply

    Thank you for writing this, it gives me hope that I am not crazy. Two years ago I found a mass in my left breast, Dr sent me for a mammo and us calls me and tells me it is a begnin tumor. I was 31 yrs old at the time. I took this to heart that it was nothing and paid no attention to it for almost the next two years. This summer my boon would hurt every once in a while and itch to the point of embarrassment…because I would want to itch in public…I now know why men scratch in public if it itches you have too. Peeling skin on the nipple with no sunburn concerned me, but Dr said I may not have realized I burned through my bathing suit…yep I fell for it…so by mid August my left breast felt like it was full of milk…not breastfeeding or pregnant…had ablation surgery and tubal litigation in 2011 have had a monthly since…so definitely not producing any milk…dr tells me it is normal for breast to change and feel heavier as we get older….as much as I would love for my poor barely B sized breast to grow I just knew it wouldn’t happen in one breast…I decided right then and there to find a new Dr …in my usual typical fashion…I put it off, by end of September my breast hurt so much at one point I thought I was having a heart attack or mini strokes…off to the ER because it runs in the family….My heart is perfectly healthy and fine during the ultrasound of my heart they could not get a good read from my the left side of my breast to my armpit…the breast was to dense I laughed thinking it was a joke…size B to dense barely out of the little girls training bra…the tech looks at me very seriously and tells me to make an appt asap with my gyn…I leave there and go back to work trying to finish a very big milestone for the company and start taking Aleve like it is candy because my left breast hurts all the time now and has small red bumps around the nipple appearing…I then found myself one morning staring at my breast because it is peaking clear liquid and I think this is not right…so I found a Dr closer to my home because I work out of my home….can’t miss work…that was last week…she took blood samples to test for hormone levels…thyroid and white cell count…she also did a blood test on the liquid coming out of my breast..no blood she said that was good…along with a papsmear of the fluid coming out and one for something else I m about sure about…I also have a script for diagnostic mammo and us …on the 12th this month….we have to wait until they receive the images from my last mammo and us which I will pick up next Tuesday myself because it is faster then their delivery….I am praying everyday that it is not cancerous or ibc….but something deep inside me tells me different that I need to open my eyes…which now a day’s is harder because I always so tired…which is not normal for me…I pray for all the woman that have IBC and bc…when I know something I will post back here…I hope this helps others to listen to there bodies and if you don’t think the Dr is right find another doing put it off….I have two children 17 and 5 and can’t imagine not being there for them because I didn’t listen to my body and believed a Dr ….right now I’m just going to pray that it will all work out

    • Lyn April 24, 2014 at 4:20 am Reply

      I sent your info to an IBC pal of mine- hopefully it helped

  30. Amy Fargo December 14, 2013 at 5:03 pm Reply

    Hi Lyn,

    Thank you for your blog.. I googled my symptoms and your log came up.. Over the past year I have noticed that my breast are very sore to the touch I have swollen glands that are very large under my armpits and smaller swollen glands on the top and sides of my breast. Every month that goes by the pain gets increasingly worse. My breast are swollen for weeks and maybe one week out of the month I’m fine. I am 39 years old. I’ve noticed I have been irritable, lower back, shoulder, and neck pain just within the last couple of weeks. This week the pain is the worse its ever been. My shoulder and armpit hurts to move. I do not see any abnormality of my breast. They are very hot to touch and itchy at times.. I have been feeling very tired, dizzy the last couple of weeks when I stand up quickly. I have noticed very dry skin on my scalp and its red and irritated. I was wondering if any of these symtoms sound familiar? I have had a mammogram and sonogram, it was negative. The doctors noticed that I had a lot of lymph nodes. I have also noticed a change in my skin. I have become very pale.. Should I be worried? I do have a clear discharge in both breast but have always had for years. Any feedback would be greatly appreciated.. Starting to get worried.. Thank you so much for your blog..
    Warmest regards

    Amy

    • Lyn April 24, 2014 at 4:19 am Reply

      I sent your info to an iBC pal of mine in December, hopefully that helped you.

  31. Mr Becker December 25, 2013 at 5:51 pm Reply

    Thank you lyn for sharing your experience with us

    • Lyn April 24, 2014 at 4:17 am Reply

      My pleasure!

  32. Moxie January 9, 2014 at 3:00 am Reply

    Helo… I’m 20. I noticd ma left breast is bigger dan ma right and am filin a lump wch pains m weneva i touch t. I dnt knw any breast clinic arnd nd nobdy to talk to. I nid ur advice… Thnks

    • Lyn April 24, 2014 at 4:16 am Reply

      I will email you

  33. Jacqueline D January 25, 2014 at 1:07 pm Reply

    Hello, please I must say first i had tears in my eyes when I found this page and read the stories/experience of each special lady. I am 39. I have had a complete hysterectomy the end of 2012 due to massive cysts all over my overies and cervix as well asa very thickened endometrial stripe. Terns out i had pre-cancerous cells on my right ovary.
    I have a very very strong family history leading to death on both sides of my family. Ovarian cancer, breast cancer, lung cancer, uterine cancer and bone cancer. My mother, all my aunts on my mothers side, both my grandmothers, all passed from it.
    I have 3 olderer daughters, my oldest 20.
    Recently (5 weeks ago) i noticed a quarter sized lump by my nipple when i was showering. I panicked. I checked myself because my breasts bilaterally have been feeling more solid and tender.
    My nipples have felt hard and i also have been having terrible ht headaches for 3 or more months.
    After noticing the lump i layed on my bed and i could no longer feel it but it was tender but tolerable.
    Now, for the last 3 weeks i have bilateral red, itchy, scaby and textured rashed all over my breasts.
    I am very scared.
    No changes environmentaly at all. No diet change. No change in medications. (Im diabetic anf hypothyroidism).
    I have been applying medicated skin rash ointment and as soon as the numbness goes away i am ready to cry from the tight, stabbing pain.
    Please any information would be helpful.
    I do not have insurance.
    I can go to the hospital if needed.
    My heartrate stays high at 115 and above. Not normal. I have been ill for 3 weeks.
    No fever really, jusy aches and upset stomach.
    Thank you for any advise. I live in a very tiny town but we do have a larger hospital.
    Thank you,
    Jacqueline

    • Lyn April 24, 2014 at 4:15 am Reply

      Thank you very much, and I apologize for the delayed response. I will email you privately.

  34. Jennifer Buteau February 6, 2014 at 8:07 am Reply

    Hi I’m considering I have this and go to ER cause I just moved to another state and don’t have coverage. But the past about 3 months but mostly last 2 especially of 2 weeks of period my breast always swell alittle and tender, but now my right especially towards arm pit, is very warm, sore, more swollen then left, and past 4 days get random little stabbing pain, like writing a letter, flipping a egg, and it hurts but then goes away and it just still aches, hot swollen. There is a lumpyness I just assumed is a cyst I’m 37 years old. I did have a rare vulvar cancer 3 yrs so removed. What do you think? Thank you

    • Lyn April 24, 2014 at 4:14 am Reply

      I will email you privately

  35. Katie Luedtke February 10, 2014 at 7:11 am Reply

    Hi lyn. I am 44 and just had a double masectomy. I am feeling the burning sensation in my chest, which actually goes all the way to my back. I had this before the surgery but no redness. I was not diagnosed with ibc but am quite concerned with how quick ibc spreads if this is what it is. I haven’t had any chemo yet – they will schedule in a few weeks. Would my dr now know if I have ibc,from my biopsy and
    Testing my breast tissue? Thanks. Katie

    • Lyn April 24, 2014 at 4:14 am Reply

      I will send you a private email

  36. Renee March 18, 2014 at 1:29 am Reply

    I woke up about a month ago with what looked like a spider bite and I wrote it off as one when it disappeared after several days. But then, about 4-7 days ago the spot came back and I think in exactly the same place. It is not painful, nor does it itch but it does cause me some concern. I went much too long last year with a spot on my forehead that turned out to be basil cell carcinoma. I have a follow up with my dermatologist this month but am scouring the internet for answers. I really hope it is not IBC but instead a cyst or something not so serious. But I learned my lesson not to wait to go to the doctor (even though I still don’t totally trust them and know there is way too much they don’t know). Anyhow, it seems to get just a little bit worse every day. I did read some spider bites do that and stop after about 10 days and then they start to heal. I don’t know what to think but it’s great to see so many people looking for answers and getting support. Oh, I’m 46.

    • Lyn April 24, 2014 at 4:13 am Reply

      I will send you a private email.

  37. suhana March 26, 2014 at 2:41 am Reply

    Hey! I really need help. Im 20 years old and since the past 4 days i have unbearable pain in all parts of my breast but especially beneath the nipples in both of them. I couldnt tell my mom so i went to a doctor and she said my tissues seem to be inflammed.
    there arent arent other symptoms but stabbing pain !
    PLEASE HELP IM EXTREMELY PARANOID

    • Lyn April 24, 2014 at 4:11 am Reply

      I am sorry for the time span, but I will send you a private email.

  38. Lisa Lee June 22, 2014 at 4:16 am Reply

    God Bless You. Hope you’re feeling better these days. One question…Was the pain in the nipple like fire stabbing needles? I’m having some issues and can’t find no answers.

    • Lyn July 11, 2014 at 7:42 am Reply

      Yes.. yes it was!

  39. Jennifer Harley June 30, 2014 at 1:06 am Reply

    Lyn,

    I hope you are doing well! I ran across this blog and thought I would reach out to you. I am almost 43 years old. For the past 6 months, I have noticed that my right breast increased in size. It seemed immediate and very noticable. It was always a concern and embarrassing, but never really worried me. I had a Mammogram in April 2014 and each year for the past 4 years. 2 years ago, they saw something on my right breast Mammogram and sent me in for a closer look (I believe it was called a compression U/S of that particular spot). It came back as nothing. This week, my right breast began itching like crazy. I am also experiencing a “burny feeling” of my right breast. I also noticed 4 bug-bite looking spots on my breast. I have read that 1 bug bite looking spot seems to be a symptom, but have not read anything about anyone having 4 at one time. ????? I do have what looks like a big brownish, birthmark-like area under my right breast…I am not sure if this is from me having big breasts and possibly from it just being Summer-time. The area is pretty big. ???? I do not have any changes to the nipple or have any of the orange peel appearance symptoms. I am getting worried more and more by the minute. Where should I start? Does this sound like IBC? Should I start with my OBGYN doctor?

    • Lyn July 11, 2014 at 7:43 am Reply

      Please see your doctor!!

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