Learning about IBC

Tundra

Hello

 I'm usually such a real "researcher" about things. I guess it's my background, and my way of dealing with things.

But I'm finding that it's difficult to find information on IBC (I guess because it's rare).

It seems too like a particular challenge for us to get informed about it all and just bc in general, because we're diagnosed and then treatment starts so quickly.

How did you gals get so well-informed on IBC? The usual BC info sources often do not seem to apply, and when they include IBC it seems like vague info to me.

Do you know of any good resources; websites, books, etc.

I found this one in one of the threads here: http://www.ibcsupport.org/

I'm finding it kind of nerve-wracking to read so far.

Thank you very much in advance

Am I also right to get the feeling that many of the IBC'ers on here are "young" -- e.g. mid-30s like me?

ibcmets

You could try www.eraseibc.com.  It may have some more info that's easier to follow.  You're right, their is not a lot out there.  On any bc site, you can type in inflammatory & see what comes up.

Terri

leisaparis

Hi, I'm 46. Was dx right before my 45th birthday. No cancer in my family what so ever. I haven't found but the 2 previous sight either and I find the ibcsupport.org very confusing. Thought it was just my chemo brain not being able to figure it out. So I've tried it a few times and I have the same trouble every time. Some women think it's just great, but I guess it's not for me, cuz I can't figure it out. Haven't really tried the other one but once. I usually get most of my info on here. If you find some good sight, please come back here and let meknow. Thanks, Leisa

anonymice

I got my info from my oncologist, mostly, because the internet info isn't updated enough.  

Yes, younger women get IBC more frequently, unfortunately.  

My oncologist is very well-versed in it and has some long-term survivor patients.  He told me that one recent difference in treatment has been the use of neoadjuvant chemo.  That is chemo before surgery.  I have just finished my fourth AC treatment and no longer can see or feel any cancer, which is such a relief.  I am going on to 3 months of taxol and herceptin.  That will be the other big difference in treatment that the internet can't address well, your receptor status and the newest and best drugs to treat your individual disease.  There is also very promising (amazing actually) trial for triple negative I read about today.

Ling29

Hi, I am 29 and was just diagnosed with IBC almost a week ago. So far, most of the information I read is about general breast cancer, and the main information I receive about IBC is that it is very aggressive.  Many have told me the treatment for IBC has improved a lot in the last few years, and I certainly hope it's the case.  I am kind of avoiding reading too much specific things about IBC right now because I am worried some past statistics may scare me off. I also find ibcsupport.org a bit confusing too, so I am mostly getting my information here.

leisaparis

I'm really sorry that yo have this crappy disease. But I'm glad that someone else finds that sight a little confusing. I thought it was just me. Hopefully we can find sonmething NOT so confusing to get information from. Good luck & God Bless

Tundra

Thanks everyone for the replies I will look into them.

Ling, so sorry to hear that you joined the group too. Your decription of your approach to it so far sounds like mine! I've been trying to avoid getting to flipped out about it. Just trying to put a support system in place and being good with scheduling my next tests, etc.

It's a lot to take in eh? At this point I've been feeling like I could use a psychologist more than anything else, just to help me process it all.

I'll be around here is you ever want to chat.

And once again, between here and ibcsupport, I'm really starting to think that IBC affects a pretty skewed amount of young people compared to other forms of BC.

I feel like about 80% of the women I've discussed it with were diagnosed in their early to mid-30s.

germangal

check out www.cancer.org - they have information about IBC under "breast cancer."  You might also check out the websites at MD Anderson, Fox Chase Cancer Center and Dana-Farber Cancer Institute.

lorieg

There is a lot out there if you are searching, but I am in the medical field so I tend to stick to the medical journals and more scientific research stuff.  A lot of it I frankly find on google.... links/abstracts for journal articles that I then have to go and find.  I can handle it much better now than when first diagnosed.  Every article starts with giving you the crappy IBC statistics so I still to this day skim through those parts.  I got it by now, IBC sucks!  lol. 

Tundra

lorieg.... hahaha.

I have an academic background so I try to stick to the proper journal articles too.

 And... yes, I too kind of just skip over the stats stuff. 

 thanks for the recommendation

lorieg

BTW, if I didn't mention before ibcsupport.org is a great resource, bu I think I have seen you on there already??  Ignore the arguments going on there currently.  It is normally a great place to be, and there are a lot of amazing people who post often.

Tundra

Thanks Lori. Yes, I'm on there too :-)

I feel behind a bit there the last couple of days because I've been too busy, but thanks for the warning; people generally seem nice there.

I just noticed that you and I are around the same age. I just turned 35. There really do seem to be a lot of "younger" women with IBC.