Learning How to Battle IBC through YOU

autumnreigns

 Hello ...

I am new to all this, blogs, message boards, chat rooms, computors in general and most of all IBC.  Please bear with me.   I made my first attempt to reach out to someone on another thread as a reply and have since realized I did this wrong.  So here I am.  I would like to introduce myself to the group here so that you have a understanding of who I am and my position.  I also want to thank Jen and Bonnie for reaching out to me and making me feel a bit better about things, thank you.  So much has happened in such a short period of time.  Thats the thing with this IBC, so fast, so very fast.  I am learning so much from reading all these threads.  So much information to pack into such a short time. I am learning so much, much more on this message board than most the certified informational sites by clinics that I have been to.  My daughters symptoms are as you all write, they litterally appear over night, first one than another. Please for give my lengthy introduction but I thought I would just copy and post what I had written on another thread and in a private message so that all could read.  Then I would like to ask more questions if you aren't to irratated by my ineptness already to answer

 Apr 23, 2010 10:22 am autumnreigns wrote:

Hello...I am new to all of this.  I am a mother who is extremely worried.  My 23 yr old daughter has just been told that she may have IBC and they are testing on monday, she apparently has 5 of the symptoms associated with the disease.  She has a 3 yr old and a 1 yr old.  She is so young.  I have been going nuts on the internet trying to glean all the information I can about this form of breast cancer.  Everything that I found scares me even more.  I have not cried so hard since my mother passed away 7 yrs ago.  I pray that I will not have to bury my child also.  I am desprately seeking information and others who are dealing with this disease and mothers who are suffering the pain of having a child with this disease.  I do not show my fear or tears to her, I know she needs me to be strong.  Inside I am breaking so hard for her.  I need someone to talk to so that I may better help her.

Private message Response:

Hello Jen...thank you for the response. Bare with me please because I am also new to all this internet stuff, it took me a while to figure out how to find and reply to a private message. I hope I am doing this correctly.
This all started about 2 months ago. I have 5 children, 2 boys 30 and 28, and 3 girls, 25 and twin 23 yr olds. This is one of my twins, 23 yr old. She lives in a small town in ILL. of 7 thousand people, with her husband and 2 young children, 1800 miles away from me (which also makes this difficult being so far away). In Feb. she was talking to me on the phone telling me that lately she has been extremely emotional and crying a lot fearing death, that she keeps thinking of dying and what would happen to her children. She said she cannot seem to reason these thoughts away and the death feeling kept overwhelming her. I told her that it was normal, that as we all grow up into adults, especially when we have our own children, we seem to think of mortallity more and what could happen. I told her not to worry that she was normal and this would all pass.
About a week ago I was watching Mystery diagnosis, I don't watch regularly but just happened to watch that day, the program was about a young woman who didn't know what was happening to her and she had just undergone a breast reduction and passed the symptoms off as after surgery pains etc. then soon realized something more was happening, IBC. The next day I was watching another channel and a program was on dealing with the same thing, IBC, but different young woman, I thought how odd that I would see 2 programs dealing with this. Two days later my daughter calls me and starts discribing things going on with her breast that she was concerned about. As she was telling me that her left breast was extremely large, she had a burning and itching feeling especially around the nipple and dry flakey skin...I thought to myself I had just seen all this on those 2 programs. I told her to immediately make a appt. with her OBGYN and go in to see what was happening and to mention the symptoms that are simalar to IBC.
Her doctor was extremely concerned and has ordered a mamogram and appt with a specialist in another county. This is to occur this comming Monday. Her doctor also said she wants her to go to the Breast Cancer Center in St.Louis to be seen. It has not been confirmed as of yet, but her doctor is pretty sure that this is what is going on and the tests are needed to confirm.
In just the 2 days that have passed she has developed another symptom, redish colored skin that has an orange peel look to it with the pits like deep deep pores. The enlarged left breast with burning and itching (extreme itching) flaking skin, very dry, and now redish and pitted appearance, all are symptoms of IBC.
Although not confirmed by medical testing as of yet, we are very fearful that this is what we are dealing with. It was all so strange the way it came about, her fears of death, then me seeing the 2 shows, and knowing that what she was telling me was needing immediate attention from her doctor. If I hadn't of seen those shows we may never had though that something serious could be happening and she may have put off seeing a doctor untill she was in serious pain or something.
I have been busy trying to find as much information as I can on IBC, and what I am finding is frightening. No one in our family history has ever had breast cancer of any form.
Her older sister (25yr old), hearing about all this felt she needed to be checked even though she has no symptoms, she went immediatly to her doctor to be examined seeking a clean bill of health and they found a lump! Worried now that she may have a different type of cancer. She is having a ultrasound done today to see if it is serious or possibly just a cyst. More than likely it is a cyst, she otherwise has had no problems or issues healthwise.
I am just spinning not knowing what is going to happen next. My younger daughter probably has the IBC. Her own doctor was fairly certain that is what is happening, but wants the medical confirmation before she will actually say it. She did say though, it was good it was found so quickly, that this is in her favor.
So now we just have to sit and wait, hopefully not more than a week. My stomach is in knotts! In the meantime I am trying to educate myself on this as much as possible and I wanted to talk with others who have actually gone through this so that I might learn how to better help my daughter.
Thank you for listening and responding
Autumn

Autumn
So sorry you are all going through this. This site is a wonderful place for both info and support. I believe there is a seperate thread / forum for IBC. I know it's hard, but try to take it one step at a time. It is good that they caught it early, if this is indeed IBC. Another thing to remember - there are many new treatments for this and all types of BC. If you browse the forums here, look at the signature lines of the people who post. Most will list their diagnosis and the date they were diagnosed. It was a HUGE comfort to me to see so many that had a diagnosis a long time ago.
Try and be there for her as much as you can - but remember, you are going through this as well. So make sure there are people there for you too. Keep me posted, and feel free to send me a message ANYTIME. Keep the faith

autumnreigns

Now.after all that reading (almost a novel) Here is on of my first questions that hasn't been answered through reading threads and posts.

I was told that invassive procedures such as a surgical procedure on the breast that is IBC positive, could do more harm than good.  I was told that once AIR hits the cancerous site that it spreads like wild fire.  Is there truth to that? If so, is a needle biopsy the best way to confirm if you have IBC?  What would you sugest I inform my daughter to ask when she goes in on Monday to test?  Also she is being sent for a mamogram, but from what I have gleaned, that IBC rarely shows up...what should I tell my daughter to request as far as x-ray, sonogram, etc. and forms of testing?

ibcmets

Autumn,

She will need a surgical biopsy to detect ibc.  I have ibc w/bone mets.  I also had a 3.5cm tumor so it was easier to detect, most do not have tumors.  My oncologist also does not want me to have surgery or radiation due to the bone mets.  It was not localized upon diagnosis, so he feels there is no need for surgery.  IBC for the most part is aggressive and chemo is usually the first treatment.  I went through 8 chemos (3-adriamyacin,8 taxotere & 8 cytoxin) for about 5 yours every 3 weeks.  I also have had Zometa infusions once per month for the bone metastasis.  This started 6/09.  Today, my scans are clear of disease.  I am on Femara to prevent the production of estrogen since I'm ER+ and I will continue monthly Zometa to keep the bone mets away.  I wish the best for you and your daughter.

Terri

cwrightrn

Autumnreigns--what a wonderful mom you are!  You have come to the right place for support but remember that we are also in our own journey and can only share from experience what has happened with us or what we have discovered in our journey.  IBC is a clinical diagnosis--for me, I had a bit of a rash and a week to the day later my breast was huge, red, swollen.  I had a mammogram/ ultrasound and needle biopsy.  A week later when they were putting in my port for chemo they did a skin biopsy too.  

One thing I want you to know is that survivability depends on many factors, not the least of which is how quickly IBC is discovered, diagnosed and treated.  It depends on how far it has spread at diagnosis--some IBC'ers start at stage III, some stage IV.  There are also hormone related factors: ER, PR and also Her2 status.  All of these things will help the oncologist narrow in on the course of treatment.  Usually, for those that are stage III, it is chemo first, then surgery, then radiation.  Please do not let the statistics from websites scare you....a lot of it is outdated material.....and only God knows our future. 

Many of us, on our profile pages have kept a list of our biopsies,scans, treatment plans, etc... Feel free to click on any of our names and take a look at that.  You mentioned you have been in touch with Bonnie, she is a great resource!

Blessings and hugs

Carole 

ebann

I was diagnosis with IBC in 2008. I have made it to my one year cancerversary! There is hope and it can happen. There are many survivors of IBC. I went through 1 year of chemo along with surgery, then chemo again with radiation at the same time. They removed a 12.5cm tumor from my breast. That is the size of a baseball. I am triple negative. Which means my chances are higher in recurrence and I can only have chemo if I have cancer and cannot take any hormones. I woke up one day and my breast was swollen. I went to my doctor and he misdiagnosis me with masitis and gave me on antiboitics. My breast never changed only got worse. Finally after a month he sent me to get a mammogram and a ultrasound. But they did not detect anything wrong. So they scheduled me to see a breast surgeon. My breast surgeon said, it is more likely IBC. Which I had a feeling it was from all that I researched. She did a biopsy that day in her office. Sure enough that is what it was. You have no time to think. Next thing I was seeing my oncologist and off to pet scans, muga scans and then a port put in and start of chemo. This all happened in four days. I can tell you it is scary. You cannot help but wonder how your life is going to turn out. So many things are happening all at once.  

It is true that invasive cannot be done surgically at first. That is why you do chemo to shrink the mass that has started. Then after the mass has shrinked they will go in and do surgery. This puts the tumor in a good place to remove. You will find this out with another pet scan before the surgery will take place. Usually with IBC you cannot have reconstruction until after a year from the date when radiation is done.

As far as test go, biopsy is good to have and best confirmation. Along with an MRI. They will probablly set all this up once they get confirmation from the biopsy. The hardest thing is the waiting game. Have faith encourage her and let her know that you are there for her. I had a 30% survival rate. Percentages and statistic are nothing. You can go beyond that. If your daughter needs anyone to talk to or email she can contact me and I will be happy to talk to her. Just PM me and I will send you the information. My prayers go out to you and I wish you all the very best. Hang in there!  

leisaparis

Hi there,

 I will chime in here as well. Like someone else already said we are all different. Our experiences are different, and our treatments are all different even though we all have IBC. Everything really depends on how fast it is caught and treatment is started. Most of us I think have started a journal. That helps with remembering dates, treatments, etc...I didn't know this at first, but it does help. Have her get copies of all her reports. That also helps to keep things straight, espically when they send you to 3 different places in the same day. You don't have to keep repeating yourself, you can just show them the reports.

For me personally, it went very fast. Sometimes you feel like you don't have time to think. Mine started on a Thursday night. My husband was looking at me when we were getting ready for bed and said "What the hell is wrong with your boob?" I said, "What do you mean, what's wrong with my boob?" He said "Your nipple is sinking in." I went and looked at it in the mirror. Sure enough my nipple had sunk into my breast(right side). I told him I was about to start my period and maybe it had something to do with that. When it's my time, by body does really weird stuff. Has all my life, so I wasn't really to worried about it.

 By the weekend it started to have more and more symptoms. So I made an appointment on Monday for the following Wednesday. I also started to look things up on the internet. Put in my symptoms and it came back as IBC. Then I started to research that. Found this sight and have been here ever since.

My physician was very good, his wife had breast cancer and he knew what he was looking at when I saw him on Wed. He told me that day I had IBC. Of course he couldn't be 100% without a biopsy, so he said he was 98%. He set me up with an Oncologist ( the one his wife goes to ) and a mamogram for that Friday. As you have heard, a mamogram does not show IBC, neither does a sonogram. The oncologist agreed with my dr. and set up an appointment with a surgeon and a biopsy. I went for that on the following Monday. The punch biopsy was on my lymph node on the right and 2 places on the boob itself. One right at the nipple(or should I say under the nipple) and the second was @ an inch below the nipple. I had to come back on that Wednesday for the official results. Which of course was IBC. Then back on Thursday to have a port put in. So from the time I had my appointment with my dr, and the official diagnoses was 1 week.

With my oncologist and all my other factors we started chemo on that Friday ( Taxotere & Herceptin). From that Monday of the biopsy to that Friday of the first chemo I had an EKG, cat scan, echocardiogram, another mamogram, sonogram and a necular full body scan. Did 12 weeks of chemo then was suppose to have surgery. However when the first 12 weeks were up my oncologist decided to have me do another 12 weeks of chemo ( a different kind-Herceptin,Epirubicin,Cytoxan & 5-FU). They had been doing some studies and if they gave me this chemo before radiation it dropped the chances by 35% of me getting Leukemia. So of course I was all for that. Sure don't want Leukemia after all this other crap is done.

So after all that, had surgery on April 8th. Went fine, not a lot of pain. Still don't have full range of motion yet, but am doing my excercises so it shouldn't be long. Have 6 weeks off work, will have to go back on May 24th. Should be ready by then, if not sooner. I'm not gonna rush it though. I work in a window manufacturing plant ( Pella ), so will need to be able to lift and flip windows. Should start radiation in a couple weeks. Have 5 days a week for 6 weeks of that. Started on Herceptin the 23rd. Have to do that for a year. I can either do every week or do once every 3 weeks. Started with once a week for now till I go back to work then will probably switch to once every 3 weeks( bigger dose).

Any questions you have, please feel free. I know this can be very scarry. Husbands and friends are nice but just don't know exactally what is going on and can not really answer. Anyone on here can give you answers. Tell your daughter...get a biopsy. It's the only way to know 100%. Good Luck and God Bless. There are many survivors on here so it's not the death sentence it use to be.

Leisa