Sister has no HI and may have IBC

Rinna73

In fact, it's almost a done deal that she has IBC.

Hello, all. I'm new to the forum. I'm here on behalf of my sister who's too overwhelmed with stress to talk to anyone right now. 

She started to notice the lump beneath her armpit around Christmas of last year. By the end of that month, on her 32nd birthday, she was constantly throwing up and dropping weight because she couldn't keep her food down. Since she has no health insurance, she's currenlty covered by the publicably funded program of Los Angeles county, and she has been shuffled through the system, wasting time trying to get someone to treat her, and getting turned away by overcrowded county hospital, until she finally got help at a decent hospital about two hours away from where she lives. 

If the first hospital had taken her symptoms seriously, she would be in treatment right now, instead of waiting for her second biopsy results. We just found out today that the first biopsy came out inconclusive, and we'll have to go back tomorrow to do another one. But the doctors are certain this is IBC. The doctor's impression was that she is at stage III. We'll have to wait another week for the results of the second biopsy to come in, and it's already been over month since she first noticed the lump. 

I'm worried and scared, but ready to go to hell and back for her. I pray to god every day she's not at stage IV. Do any of you know how long it takes to jump from III to IV? 

Moderators

Rinna, if your sister finds that she's facing treatment, and is without insurance, the Paying for Treatment Without Insurance section of the main Breastcancer.org site lists a number of resources that may be helpful for her.

The Paying for Your Care section also has information on some of the other services available.

Best wishes to you both,

• The Mods

Rinna73

Thank you so much for your reply. I've been up all night looking at articles and going to various websites. You two are a godsend. 

Bon, your post has confirmed my WORST fears. Even though it's not my cancer, I'm fighting as though it were. But I have more beasts to face than the cancer itself and the delay in immediate treatment. 

My family is driving me CRAZY! Mostly my mother. My mother has chronic pulmonary condition--due to years of smoking--is the only driver in the family, and has NOT once taken serious steps to treat her shortness of breath for the long term, even with available means to do so. My sister has no other transportation to the hospital that is currently treating her, and has to rely on my mother for rides. My mother has been complaining how the excessive driving is taking a toll on HER health. After my sister's biopsy report today came back inconclusive, requiring another test set up for tomorrow, I offered to pay for a motel room near the hospital where my whole family could stay overnight. But my mother said she could make the trip tomorrow. She didn't want to stay in a motel room. I trusted her. 

But then she has my sick sister call me to say she can't make the appointment tomorrow. My mother and sister are settled on doing the test on Thursday, but there is no guarantee they can reschedule. I offered to go with my sister on the bus, but she refused. This made me NUTS. My sister says she's taking it seriously. My mother claims she's take it seriously. But they're both so maddingly slow to react. We don't have a day to waste! I wish they would see that. 

I never got my driver's license, but I've signed up for lessons specifically for this purpose. I swear, this fight has barely started and I'm already stressed out. 

Cheer2

Hello rina??i have a question for you you said your sister first noticed the bump in this december or last december??sorry just got a lil confused. So i wonder untill when can you stop thinking its ibc..sorry hope you understand what im trying to say

Rinna73

Bon! Please don't apologize. Thank you so much for your last post. I do feel better now. 

I was really rattled last night because my sister's results came back inconclusive, and no matter how happy I started to get, believing that the benign result meant she didn't have cancer, a little voice in my head was saying that this was just another delay. 

As for income, it will all get cleared up once she gets her prognosis. Then she'll be established with mediCal right away, have access to assistance with rides, and so fort. Thanks for suggesting Dial-A-Ride. I've never heard of it before. I'm going to try for it the next time something this unncessary happens. 

Hey, Cheer. 

She noticed the lump in December of 2012, so over two months back. I just want to break down in tears every day she goes without treatment. I thought the doctors and the complexities of bureauracracy would be the hardest things to fight, but right now the hard part is my own family. I feel a bit hopeless when it comes to them. 

But thanks again for clarifying, Bon. Being able to talk about this with sane people makes me feel much better. 

Claudia413

Rinna,

There's no need to panic. Many of my IBC sisters were mis-diagnosed for months before they got a correct diagnosis.  What you need to make sure is that your sister gets the proper treatment. Be sure to post here about what her treatment will be; the main thing to remember is that IBC is treated with chemo first, usually followed by surgery, then radiation. Sometimes more chemo is needed. Come back here and pass it by the members.  

If you want to, you can check out www.eraseIBC.com (The Inflammatory Breast Cancer Foundation) and read the information about IBC and listen to some of the podcasts of our radio shows. We have interviewed the IBC specialists and researchers for 4 years now. Also, I am the Vice President of the Foundation and have been NED (no evidence of disease or no expiration date) since my treatment finished in 2008.  We're all terrified at first, then the terror comes and goes.  Listen to the voices of the members here and ask questions. You will get answers.