HELP! Support needed...could I have IBC?

Catmandu

This past Wednesday I woke up with a swollen left breast that was very itchy just below the areola and of course I scratched and thought it was some kind of bug bite or something.  It continued to drive me crazy itching but didn't change at all until I woke up Saturday and my breast was more swollen, warm, has a rash look, maybe from my scratching, and what I would call a red plaque or welt looking thing all across the bottom of my breast as well as flattening (not inverted) of the nipple and the areola is much bigger than my right breast now.  Now on Sunday, the area has an orange peel appearance, has a heaviness feeling, and intermittent little pains kinda like pins and needles feeling going on now.  I have had no fever and do not feel bad otherwise.  I just moved recently 2 states from my life long home.  I have looked up a breast specialist and will try to get in tomorrow because I know this needs checked out ASAP, although they did not have IBC, both my grandmothers had BC.  Everything I have read seems that almost everyone has an issue getting a biopsy.  I don't know if I will have problems getting the doctor to listen to my concerns or not, but I would rather know what is going on exactly versus let try this approach in case it is IBC.  Does it sound as if this could be IBC or am I just overreacting?  Any help, advice, support, would be greatly appreciated. Thank you!

HollyinMich

Catmandu, so very sorry you are having these issues with your breast.  You are correct in getting to see a doctor immediately and you are not over reacting.  The symptoms appear very quickly and progress quickly as well.  Punch biopsies are not always reliable because thay can completly miss the cancerous area of the skin, I would push for a beast MRI first.  This is the best imaging technique for finding IBC and can guide the docs to the proper area to perform the biopsy.

Here is a link that will provide you with more information regarding IBC.  http://www.eraseibc.org/  You can print out some of the information and bring it with you to your doctor if you think you might find some resistance.  Sometimes it helps to hand them some information on it to push your point accross.

Wishing you all the best! 

HollyinMich

I should add also that there is a printable brochure with information on the site in a pdf file that would probably be the best thing for you to take with you.  You can find it here http://www.eraseibc.org/pdf/brochure.pdf.

Catmandu

Thank you!  On Wednesday I thought nothing of this but with this progression of different stuff happening so fast, I am extremely worried about IBC.  I have a 17 year old daughter with severe bi-polar depression and she needs me in her life because no one else will even try to help her or understand her.  I have to make sure whatever this is that it is taken care of ASAP!  I still haven't convinced myself that this is a possibility but I think I do have a lot of symptoms!  Praying for the best outcome!

HollyinMich

Catmandu, I am praying for you also.  I have a 9 year old daughter so I completely understand your fears.  God bless and please let us know what you find out.

chester2010

Catmandu: This may prove to be nothing but you really need to get any rash or swelling checked out with a good breast specialist and I hope you can get an appointment quickly.  Good luck.  Your daughter needs you to be healthy and not worrying.

Catmandu

Couldn't get in to anywhere anytime soon, so I went to a new ER Urgent Care and told him everything.  He says...it looks like mastitis, but he understood where I was coming from I think because he also got me in to a breast specialist tomorrow morning.  I hope he is right and it is just an infection, but with this...I just want to be sure!

HollyinMich

So happy to hear that they took your concerns seriously and referred you to a breast specialist!  IBC is often misdiagnosed as mastitis.  That was my doc's first thought too.  Hoping right along with you that it is only an infection.  Please keep us updated.

ibcmets

Glad you're seeing a breast specialist.  Hope your ER doctor is right.  Best Wishes

Terri

Catmandu

Can your symptoms or some of them anyway wax and wane some?  I still have swelling, reddness, itching, orange peel looking skin, however, my nipple doesn't seem as flattened today!  I think I may be obsessing but I am looking for every glimmer of hope that I can!

HollyinMich

I didn't notice that type of thing with my nipple, but everyone is different.  I did notice however that my redness would be less in the morning and get worse in the evening and somedays it seemed less or more red than others.  It's hard not to obsess, try doing something that will keep your mind occupied tonight and relax.  I know it's easier said than done, lol.  But it doesn't hurt to try. 

Catmandu

Thanks Holly!  You are an awesome person! 

HollyinMich

You're very welcome and thank you! 

mrsnjband

Holly,

Thanks for link for the printable brochure. I have wanted something to hand out to people about IBC and didn't know of one. Thanks! NJ 

HollyinMich

You're welcome NJ!  I thought about creating a thread specifically with some links to different sites for IBC education and awareness and asking it to be pinned but I'm not sure how BCO would react to a lot of the info coming from other sites.  I guess I could just ask them, lol.

tlarnold

Holly have given you all some wonderful advice and support. Please don't let someone just tell you all is well. IBC is serious and proper tests are key to your health.

Catmandu

Specialist wants me to have a diagnostic mammogram - on both breast??  she said then they can do a punch biopsy if the mammo shows any thickening.  If it doesn't and my swelling, redness and rash aren't any better, then she will get an MRI right away.  She didn't say it was definitely an infection, just "lets get these tests done and we will go from there".  I wish they just could have done it today.  I have to call in the morning and schedule it but they will see me right after.  Be nice if medicine worked faster to either prepare you or give you relief from your worrying!

HollyinMich

Catmandu, the waiting and going through tests really is the worst part.  Many of the ladies here have termed it "scanxiety" and it certainly fits!  Yes, they typically do a mammo on both breasts it helps them to compare the two for changes.  It's so good to hear that they are taking this seriously though.  I hear all to often that women are told it's mastitis, send them on their way with antibiotics and weeks to months pass before someone takes them seriously.  Unfortunately, with this disease time is of the essence.  Sounds like you have an excellent specialist!  Sending you lots of virtual hugs through this very difficult time of scanxiety!

Catmandu

I like that!  Thank you for the hugs I really need them!  I just started a new job, 2 states away from all my family and friends....5 hour drive....so it helps to have someone to talk to on here and not feel so alone

HollyinMich

I can certainly understand the need to reach out, and it's especially helpful if they have been in those shoes!  You are very welcome and I am happy that I've been able to be here for you! 

Catmandu

My rash is a lot less red today!  Could this mean that it is just an infection?  I have a mammogram set up for Friday, and will keep that appointment anyway because I was supposed to get one for the last 2 years but kept forgetting about it...I know BAD GIRL!  Something I will never put off again though after this scare that is for sure!

Catmandu

Now I am have a sharp pain intermittent in the same area of my breast over and over!  Is this yet another symptom of IBC or not?  It is driving me crazy

HollyinMich

I don't want to say anything that scares you because everyone's symptoms with IBC can vary so different so please take anything that I post as just that my experience.  Personally, my redness was never consistant.  Some days it was more red than others, some days the redness was less in the morning than in the evening and some days the warmth to my breast was more noticable than others.  The itching and pain varied a lot too.  This may have all been related to my symptoms appearing in the Summer, because I certainly noticed that they were much worse if I was hot and would lessen in the mornings when my body was cooler.  

As far as the pain went, again this varied, but toward the end when things were getting worse before my diagnosis I had an almost constant ache.  On top of that and before the constant ache I would get sharp, shooting, stabbing kind of pains that would literally take my breath away.  I could be in mid-sentence and I would have to stop talking until it passed.

I didn't get diagnosed right away either because at the time all of this started happening I didn't have health insurance.  It was a good 4 months that had passed between the time I first noticed something wasn't right until I had insurance and could get it checked out.  Then it was about another month after tests before I started chemo.  So my most vivd memories are toward the end when it was pretty painful and very red.  We had begun calling my boob the angry boob, because it was so very swollen and red!

My intent really isn't to scare you or cause you any more concern, but that was my experience with symptoms.  Lol and I didn't even get into some of the other changes with skin appearance and my nipple!  So take it for what it's worth, not everyone's symptoms are exactly the same.  Don't loose hope that it may not be IBC, but still pursue all the testing to figure what ever this may be!  Lots of hugs and go have yourself a glass of wine and maybe a nice soak in the tub to help relax. 

IBCpatientsdaughter

Yes it is.  (Hi I am new to this site)  I would rather scare the bejeebers out of you than say it could just be an infection.  PLEASE  DO NOT WASTE ANY TIME!  The mammogram showed nothing on my mom.  Same symptoms as you are having now. But it turned out IBC. IT TOOK FOREVER TO GET THE DIAGNOSIS, EVEN WHEN WE KNEW WHAT IT WAS!!!  The standard treatment is Chemo, surgery and then radiation with poor prognosis.  My mom is going to a place in Arizona called Euro-Med.  It is another way to administer the chemo.  YOU MUST LOOK INTO THIS.  Mom is 77 with a pacemaker.  She cannot go through all the stuff the mainstream oncologists say you have to do.  This treatment is a low dose chemo that is potentiated with insulin.  There are a lot of websites that pooh-pooh this treatment, but it works.  My mom is getting better.  Please google  Euro-Med in Phoenix AZ.  I am so sorry you are going through this awful stuff.  I pray it is not cancer, but really, Girl.  It very well could be.  JUST HURRY and get treatment started!  Whatever type you decide on.  

HollyinMich

IBCpatientsdaughter - Hi and welcome to the sight.  I understand that your mother maybe recieving treatment at the place you mentioned with wonderful results and that you may feel like shouting it from the rooftops but please be careful with name dropping medical facilities.  BCO has a very stict anti-spamming and advertising rules for this community and your post could be construed that way especially since you have just joined.  Additionally your statement that the current protocol for IBC has poor prognosis is very incorrect.  The prognosis with the current standard of care (chemo, surgery and then radiation) has actually increased the chance of survival quite dramatically over the last 5 to 10 years.  I speak this from personal experience and know many, many other women who were a part of the trials for what is now the standard and are 10+ years survivors.

IBCpatientsdaughter

Oh I forgot to tell you... MAKE SURE they do an ultrasound!!  I know I keep yelling at you.  Please forgive me.  I JUST CARE!!!  This disease SUCKS!!!  Ultra sound can see what the mamo won't.  They misdiagnose IBC ALL THE TIME because mamo doesn't pick it up!   I am sorry for yelling.  My mom has gone through HELL.   I don't want to see anyone else go through all the riduculous run around she went through.  If you have had recent big time stress, this could very well have triggered it.  With my mom, she had a heart attack in Aug 09, my dad was very ill and passed away in April, and Mom had her first sign of "something wrong" in August of 10.  She has been going to treatment since the first of September.  I hate to assume, but really,  prepare for the worst and pray for the best.   I really hope it is not cancer.  If it is, though, please keep in contact.  Maybe Arizona is the best place for you and your daughter.  Who knows, maybe her bipolar could be looked at here.  Have you looked into the wheat and/or sugar effects of bipolar? I'm sorry, I sure don't know it all, but I have spent a lot of hours researching IBC  and other stuff.  Sometimes I come across very interesting things about  gluten (wheat mainly) and sugar, and the bad stuff they can do to people. ( see, I took your mind off your breast for just a minute!) 

IBCpatientsdaughter

Hi Holly,  Thanks I will be more careful with "name dropping".  It is a crazy disease and it has made ME crazy, too.  My mom's original oncologist team only gave her 15% survival of 5 years after all the chemo and surgery and radiation.  It is so  so scary.  I don't want to lose my mom. So we searched and researched looking for something that would have a better prognosis.  With my mom's having a pacemaker and all, the regular protocol was not good.  The doctors said  "Well, you probably will make it throught the treatments...."  yikes.  We didn't like the sound of that.  When we did talk to the "other" doctors about their treatment it was a gentler choice.   The scary part is the chemo.  There are so many older people who cannot tollerate it, and some even die because of it.  The treatment my mom is getting is 10%.  Some people don't even lose their hair!  Mom did, though.  

Catmandu

Thanks Holly...your words of encouragement really help and I am glad you shared your symptoms because I sometimes feel like maybe I am just crazy!  It also helps to know that this pain could be a symptom and not just my imagination or something.  Several years ago my daughter talked me into this dolphin tattoo on my back....I don't know what I was thinking, I am not a tattoo kinda girl...but anyway this pain is staying in the same area and feels like that little needle when you get a tattoo...it is making me semi-crazy! 

Patients Daughter - I am very sorry that your mother is going through this...I hope for the best for her.  My options to travel away from where I live are not the best.  I just started a new job and they are being great about these appointments....Glad I had a month to show them what I can do so they don't just fire me lol.  I fully intend on seeing this through to a biopsy just to make sure and my new doctor seems very understanding as to why I am so adamant about this.  I am a medical coder so I tend to know a little more about diseases than any person other than a doctor should!  She did say that sometimes it does show on a mammogram as a white sheet versus the traditional white spot with a lump and those who know what they are looking for will spot it, so it is worth a try....good thing I have great insurance....thank the good Lord for a small favor.  I will make sure to let you girls know what the mammo says as soon as I know.  It is scheduled for Friday afternoon and then I can't see the doctor again until Tuesday....then again if this is like some docs I have worked with...if they see something they will call right away and get me in earlier....I hope that is how she is too:)  Thanks for being my sounding board because I am alone at home right now with my daughter in ohio visiting my husband and her big sister!  Hugs!

IBCpatientsdaughter

Catmandu, HUGS to you, too!  Sorry I get in such a panic about this.  Like I said before, I am a little crazy!  I am looking forward to hearing from you soon.   (  I am glad Holly is here to rein me in!  )

Catmandu

Hey it's ok...Im in a panic too...I love Holly's work---scanxiety---that's exactly what it is and all these crazy symptoms and everyone else saying that its probably nothing because it is RARE!  Seriously--rare things happen to some people or else they wouldn't exist!  Some people are ignorant.  Still hoping this is nothing serious but I am taking it serious until someone proves it to me!  Guilty until proven innocent when it comes to your life! lol

HollyinMich

IBCpatientsdaughter - I am surprised that your mother's original oncologist quoted those statistics to you.  Those are absolutely incorrect!  The older statistics (10 years ago) are even higher than 15% survival to 5 years.  Those statistics were 30% to survive 5 years post diagnosis.  With the newer statistics it is up to 40%.  I know 40% still doesn't sound great but when you take into consideration how aggressive this disease is it's definitely a step in the right direction.  I suspect also that it will continue to increase as more and more women are living longer after IBC.

I can understand your excitability over this disease for sure!  I just don't want to see you start off on the wrong foot.  

Catmandu - Glad my post made you feel better!  I know I thought I was going crazy too, lol.  Was starting to wonder at times if I was imagining things!