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

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, 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.

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

Terri

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. 

You're very welcome and thank you! 

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.

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 - 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.

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, 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!  )

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!