Mom diagnosed with IBC.... Terrified!!

We will not be able to tell you if it is survivable or not. However, I presented with mets in 2009, IBC and I am still here. Fine one day and there the next is typical of IBC.. If there were mets your mother wouldn't be surgical. I was not surgical until chemo killed some distant stuff. They told me that up front.

I will pray for your family. Don't be by yourself in holding it all together. The family that prays, crys and laughs together stays together. I say this because one of my daughters will not even call me unless she can be artificially happy. I can tell through her fake laughs that she is hurting. Cry with your mother, it will do both of you some good.

Nicki,

Sorry about your Mom's diagnosis. I presented with ibc & bone mets from the start and doing well.  I'm ER/PR+, her2- and now on Zometa for the bones & Femara.  I had 8 months of strong chemo that was tolerable & a year after being stable; I had a BMX with recontruction.  It's been 2.5 years and I'm doing great.

Saying prayers for your Mom, Sally.

Terri

Nicki, hopefully your Mom is a stage IIIB and not a stage IV (cancer has spread to organs). I am a member of several online IBC support groups, and we have many women who are "surviving" just fine after their diagnosis. I know Sean and Terri from the other support groups. As Sean stated, there are now IBC specific cancer centers in the US. Dana Farber in Boston and Duke in North Carolina come to mind, in addition to Fox Chase in Philly and MD Anderson in Houston. 

I am a volunteer with the Inflammatory Breast Cancer Foundation (www.eraseibc.com) and the current Vice President. You can get many answers at our website, as well as looking at podcasts from our monthly radio show (you can watch, listen and chat online when we are recording the third Wednesday of the month at 9pm ET). Some of our guests have been IBC doctors (oncologists and surgeons), researchers, and other IBC-related people (i.e., videographer who made "The IBC Project" documentary). Believe me, most of us with IBC have plenty to be mad about at times, but we MUST continue to educate the general public and the medical profession every chance we get. Even my own doctors did not know about IBC back in 2007. They know now.  

Nicki,

It seems as you are the perfect person to help your mother through this awful disease. Sorry you had to come to our board, but glad you found us. Post as often as you have a question or need your spirits lifted up. That's what we are here for. I also think that the people on this board understand more because they are there in the same place.

MD Anderson, great place to be!!!!

It's normal to be sad and freaked out and for things to seem to go slow. All of your concerns are normal and if you were not saying them I would wonder about your mental state.

Your Mom's behavior sounds good. I have noticed that if I can joke or laugh then the people around me can and the day is much better for all, including me. There are cry times and always will be as none of us want to deal with this disease. Hopefuly they have let your mother have some ativan, (anti anxiety), or something along that line.

It is also much easier for all of us to talk here. Keep in tough.

Nicki,

Sounds like you found a good place for treatment. 5 weeks does feel like a long time.  It took 2 months for me which is relatively fast. Some women can't get in to see a specialist for months.

They will need to do the chemo first to kill the cancer & then do the surgery.  With inflammatory breast cancer it affects the lymph vessels to the skin which it what causes the rash or red bumps in your mom's case.  If they do the surgery first they won't know if they got all of it, thus chemo first then surgery.  Then rads after surgery to make sure the kill anything left behind. 

Hoping that is hasn't spread. NJ 

Nicki,

You're a great daughter to be there for your Mom.  I'm glad her organs are cancer free.  Chemo has changed in the last 10-20 years and your Mom should do just fine.  She may not be so hungry on chemo; but I loved a light chicken soup with crackers.  It should be painless.  My eyes started to tear a lot on chemo and my onc told me to take benadryl at home; which helped.   I took B6 & B12 to alleviate neuropathy; but ask her onc about any vitamins or anything else she wants to take.  My onc had me take Emmend and compazine; which totally prevented any nauseousness.

I hope your Mom does very well with her treatments.

Terri

Nicki,

Keep us posted about side effects. I now have a new onc who treats them and wish I would have changed in the middle of my first treatment. I like being able to walk when the neuropathy gets bad. There is medication for it that they can give her and increase the dose until it works.

I also preffered Zofran for the stomach as it dosen't make me sleepy.

Nicki,

Glad your Mom is getting the help she needs. I believe she may be on steroids while she on chemo. I was and it is very hard to sleep on this stuff.  When my blood pressure went up; they also gave me water.  Sometimes we are just a bit dehydrated.  She seems to be handling the chemo well.    They may scan her every 3 months for awhile to see how the medication is working.   It's good news your Mom is not at stage IV.  This means it has not spread. 

I've taken vitamin B6 & B12 while on chemo and it helped with neuropathy, energy levels and I had no nail problems on taxotere, cytoxin & adriamyacin.  I had it for 8 months.  You will always have to check with onc regarding any vitamins or other medication she takes.  I later went on ambien to help with sleep.  In the beginning a natural supplement called Melatonin (over the counter) helped me sleep and my onc always knew what I was taking.  I also took benadryl  when I would tear a lot from my eyes to help dry up the fluids and bloody noses caused by the medication.

Wishing continued success with your Mom's treatments. 

Terri

I am new to this forum, and have not been dx yet. I started having this pain in my upper left part of my breast, on and off, no redness or increase in size, but bouts of sharp pain. I put it off for  a month, thinking it was breast implant related, plus, thinking "breast cancer...not me" so I made a call and couldn't belive I got in the next day, which was yesterday. She did a breast exam, no lumps detected, and ordered a mamo with ultrasound, she mentioned ibc, but does not think I have it, because there is no redness or swelling or hot to the touch; today pain is worse plus, I read posts from all of you yesterday and today, before joining.......you women are so strong. My dh is the only one that knows, but not my mother I wish I could tell her, but because she will think it's breast implant related, and didn't want me to get them in the first place (3 years ago, the redo) would be angry and ofcourse my sil is an RN who said "women with breast implants have more breast cancer" I said, that I think because they are more intune with there breasts and get checked more, it is realy a coincidence. So, I am alone, I have 5 kids to raise, and my oldest 2 already lost their father to a car accident  10 years ago (my first husband). I wouldn't care if I got a masectomy, I never had boobs before implants anyway, why I got implants. I am so scared as all of you have been and may still be. I don't know where to get support, and my husband is like, don't worry, because I don't know yet, it's hard not to. I think about breast cancer, and it can strike anyone, and ibc, anyone. An organization I am in just raised money as we do every year for the susan komen foundation, and we do so every year. My doctor office just called and told me to go in the ER, which is part of the largest military hospital, I am scared to go......What were your syptoms getting ibc, were they classic, what you read online??

No increase in size, and not itchy, or rash I did go to the ER, but the doctor said he does not even think it is, but maybe muscular. You are so sweet for the reassurance. I think the worry is more than any pain, it's sickening. They didn't run tests, because he did not want radiologists who do not normally look at breast mamos. to do it, and told me to keep my scheduled appt. for Jan. 5th.

Niki,

So glad to hear your mom is doing well.  I am going great. 

I did my reconstruction last year & I so happy that I did it.

Glad I saw your updated post! NJ