Your Story?!

LydiaR

Hello everybody,

I'm 24 and was diagnosed with IBC last august, just a month after I got married and found out we are having a baby. By now I'm 7 months pregnant and finished 6 rounds of FAC chemo but I'm going to start weekly Taxol until my baby is here.  

It has been a very depressing road so far because everybody just tells me how aggressive and rare this type of BC is and when you try to read stuff about it online, you only hear "sad stories". So I was wondering if there are any "good stories" on here. I would like to hear about experiences from survivers and how you have dealt with the whole situation. 

Kicks

First - I'm not young - I was DX IBC at 63 in Aug of 09.  It's only been 4+ yrs, but my 'story' is a good one I think.  As far as I know (have no reason to think otherwise), I'm still NED (No Evidence of Disease) and life is just as great, active and promising as it ever has been.

IBC IS rare and very aggressive but I am a very strong believer in the power of positive thought/faith (different to each of use).  All roads we travel are different and often 'rough' (sometimes incrediably rough)  but what we don't allow to break us, makes us stronger and gives strength to us AND our loved ones. 

I found an enlarged node under arm one night in bath.  My PA was on vacation so it took me a week to see her - I didn't want to see anyone else.  Saw her at 11 that Thurs, she had me at radiology at 1 that afternoon for a new mammo (last had been 'clear' less than 2 mths before).  Had a mammo, told to wait in waiting room, then called back in for a sono and told to wait in that room.  Dr. D came in and said he had to do biopsies.  He called me the next morning at 8 with the path - IBC, which was what my PA and Dr D were expecting..  Mon saw surgeon, Wed saw rads Dr and Thurs saw chemo Dr.  Lots of scans and test, on day 16 post DX port implant and next day started 4 DD A/C.  2 weeks after last A/C had UMX, 3 weeks later started 12 weekly Taxol.  A week after last Taxol, started 25 rads and a week after first rad started Femara.  I have had/have fantastic Drs who I am so thankfuly for - without them who knows?.

IBC and all that goes with it, has not slowed me down at all - I am just as active as I ever have been.  Am I a "Pollyanna" - no - there are some times that are somewhat a bit down, especially during winter (I'm SAD - Seasonal Affective Disorder - for MANY yrs and I've had to fight it a lot this year, winter has been more BRUTAL here than  usual).  Thanks to my 'Babies' (horses/dogs/rabbit), Hubby and Son, they do not let me stay down (or get too down) for long.

"One Size Fits All" does not apply to us.  We are each SO unique!  ASK, Read everything anyone can give you BUT do not assume that your journey will be the same as anyone elses has been/is along the IBC Road.  Process everything and use what applies to you and yours along this journey that is what it is - as is all of LIFE. 

Faith316

I was initially dx with DCIS and IDC in April 2008.  Had a lumpectomy and axillary node dissection finding 2 of the 8 nodes they took were malignant.  I took 4 rounds of AC followed by 12 weekly Taxol and Herceptin.  After that, switched to Herceptin every 3 weeks.  I also had 30 rads treatments.

While in the midst of radiation and still on Herceptin, I had a lot of symptoms that I thought might be IBC.  My doctors all told me, no way, you have had too much chemo and radiation for it to be possible to be diagnosed with more cancer while still in treatment for the first diagnosis.  Some of them thought my symptoms were side effects from radiation.  I was very burned from radiation, had an awful looking rash, thickened skin, flattened nipple as a result of the thickened skin, and what I now know was peau d'orange.  My breast was also hot, red and swollen.  I insisted on a biopsy.  So, in June 2009, they did a punch biopsy and a wide excisional biopsy both of which indicated IBC.

My local doctor sent me to MD Anderson in Houston, TX.  My onc there stopped the Herceptin and started me on Xeloda and Tykerb.  A month later back at MDA, my symptoms were all SO much improved and my PET/CT showed NED!  I stayed on the Xeloda for 6 months.  Then had a uni-mx and another axillary node dissection.  The pathology showed no evidence of disease.  (This was in Feb. 2010.)

Although I am still on Tykerb, (for 4-1/2 years so far), I remain NED.  

So, 6 years after my initial dx, I am doing great!  Yes, IBC is a scary diagnosis, but it is NOT a death sentence.  I am proof of that!

Good luck!

ibcmets

Lydia,

I wanted to tell you about youngsurvival.org.  They have lots of women under 40 who you can communicate with.  You are certainly welcome here and this is a very active board.  I know this can not be easy especially being pregnant.  Wishing you a healthy pregnancy & that all your treatments work well.  I'm 4.5 years out with ibc & bone mets and doing well.  

Terri