IBC new to board

ehop337

My name is Elissa I was diagnosed in Feb 2013 IBC stage 3c  I am almost done with chemo my surgery is scheduled the end of Aug... I was glad to find this board being that this type of cancer is rare and not a lot of people understand what we go through my sister is a breast cancer survior also but not IBC ..   I also wanted to say that I am here for anyone who need support ...

Moderators

Hi ehop337 and welcome to BCO!

We're happy to have you here, though we hate that you have to be here. We're sure you'll find this place a very informative, supportive and caring space!

Welcome again, and please let us know if you need any help or have questions!

The Mods

ibcmets

Elissa,

Thank you for coming here and offering your help to those going through ibc.  I'm 4years out from stage IV ibc with bone mets and doing well on Zometa and Femara.  This is such a great site for information and help.  We all learn from one another.

Hope all treatment goes well.

Terri

ehop337

Terri,

Thank you I am so happy to be able to connect with people who is going or have been through IBC . I hope to be able to share new ways to cope with IBC .... I am doing well much better than expected . I am only 36 and IBC was missed by a mamomgram .My whole breast was basically red, swollen  with tumors that leaked I was on heavy pain medication for four months. I don't leak anymore and hardly no more pain . They were not sure if they could operate but I am scheduled for two more taxol chemo treatments and the surgery .

Elissa

Kicks

I only knoe for sure what my TX plan was but was very different than waiting so long.  I started A/C less than 3 weeks after DX.  2 weeks after last A/C I had surgery.  3 weeks later I started 12 weekly Taxol.  A week after last Taxol started 25 radsd.  Also started Femara (it was n't generic then)  a week after starting rad.s.

For me - there was 'nothing' one night but the next night I had enlarged node under arm.  My PA was on vacation so it took me a week to see her.  Saw her at 11, was getting a new mammo  (and sono) at 1.  Had biopsy done and path back next morning - IBC..  I was told point blank that as IBC there was no way that surgeon coul;d get 'it' then.  Did 4 DD A/C and he was able to do surgery.  I then did 12 weekly Taxol and 25 radds.  This Aug ill be 4 yrs since DX and as far as I knnow I'm still NED.

Nothing I've been through in the last 4 yrs has made any difference in what I do or how I live other than to be thankful for every sunrise.

ehop337

Bonnie,

Hi I am Triple Negative I am so glad to be able to share with other women who have IBC.

Nel138281

Hi Elissa,

There is another thread  "Calling all IBC er's treament, prognosis,surgery"  Think that is the name, if not pretty close.  Receiving and giving support, what the boards are all about.  I am almost 2 yearsout, have my first follow up this week, feel well and getting back on track with everything.  Stay in touch

Be well

Nel

ehop337

Thanks Nel I will check it out ...

tae

I'm waiting on a definitive IBC dx sometime tomorrow - needle biopsy of the lymph node was done late yesterday afternoon, following symptoms for about 2 months (which I never dreamt was an issue - always thinking of a "lump" instead, and waited for my annual visit - was also extremely busy with my two oldest daughters delivering my very first two grandbabies far away from home, one the end of April and the other the middle of May, and my third oldest graduating high school in May).  Had my gyn visit 8 days ago, the mammogram (abnormal) last Friday, June 28, got results the same day and the statement 'looks like inflammatory breast cancer' while I was in a car with my youngest daughter, child #4, while she took her driving test as she turns 16 two weeks from today!  Had to wait all weekend for an appointment with the surgeon yesterday, when I got the biopsy.  I have an MRI tomorrow morning, and then just waiting for the results and plan of treatment. (I think)  I've been fairly calm, but am noticing some panic/anxiety symptoms today.  I think it's knowing I'll have to tell my four children tomorrow, and I honestly don't know what to say or how to protect them from the impact.  Any advice?

ehop337

My advice is to be strong don't panic they have made a lot of progress with IBC I remember not wanting to tell my family because my sister had breast cancer a year earlier I will Pray for strength and healing I hope for the best for you I have 2 more chemo treatments This has been hard but I remind myself everyday to fight be positive and don't get down Your Children an family will be there for you

tae

Biopsy was positive for cancer.  Now waiting on the results of the MRI, and further "pathology" on the biopsy fluid. Still not sure if they're calling it IBC, or not.  Is that what the MRI/path will tell them? Likely to see the oncologist on Monday - the holiday is messing with everything, of course.  But my oldest daughter, SIL, and grandson are here to cheer me up.  Good medicine!  I'll be asking lots of questions.  Thank you for hearing me.

Milly43

Ehop337 hi I have seen your post about ibc another member told me to come and have a look which is what I have done I have only been diagnosed for just over 2 weeks ago I have ibc that's all I know I don't know about all the other words that go on the end of it all but I'm sure they will tell me I'm at the hospital tomorrow for my first appointment with the nurse and others ect I start my chemo on the 16th I have to say its all very scary but I'm sure given time I will lean everything like u I would love to hear about what happened to You from the start it got missed back in April and now we are in July I find that hard to deal with they had missed all that time from when I first went to see him until now but like I said thankyou for your post I would love to hear from you take care big hugs x

ehop337

Milly43 Hello I know how scared you are I was scared of everything that threw at me . I was diagnosed at the hospital in February . They treated me for a infection but after they got the results form my biopsy. Then I had a CT scan and PET Scan and they confirmed I had IBC and that it had not speard to my bones. I had a Mugg Scan also to check my heart to see how healthy it was . I got my  1st chemo about 3 weeks after I was diagnosed they  said I was going to get 8 total 4 A/C and 4 Taxtotere one every weeks . I responded well to the chemo although the A/C treatments made me sick for about 7 days My breast leaked for about 3 months the chemo started to dry up the tumors and they started to die I had to have my breast surgeon cut they off because the rotten flesh smell was awful . I have one more Taxotere on the 17th then I will have my mastectomy August 21st then 6 weeks of radiation . Lord knows I ready to move on from this. Bigs hugs to you too I am here when you need to vent or talk or cry