Inflammatory Breast Cancer Stage 3

mc2001 said:

Hi,
I recommend the chat room on this web site. THere are a lot of great people in the chat room and I am sure there is someone that would like to help. God bless.

kathrynm said:

There are 2 sites specifically directed to those with inflammatory breast cancer and their caregivers. They are ibcresearch.org and ibcsupport.org. Both of these have active email lists and searchable archives. I was diagnosed with IBC in 2001 at age 54 and these lists and their members were like a lifeline to me. Please take a look at them.

Hi kathryn,

Congratulations.  I truly consider you a long term survivor being diagnosed with IBC in 2001.  My daughter was dx'd at the end of Aug 2013 with IDC, subtype IBC, TNBC, stage IIIB, grade 3 with mets in 1 of 14 lymph nodes at the age of 35.  She first had chemo with adrimyacin and cytoxin and then taxol, then left breast mast, then radiation.  She had seen one dr and then went to a 2nd facility for another opinion/treatment options and now being seen by drs at U-M where she is going to have her other breast removed soon.  First dr refused to do double mast.  Second dr promised a clinical trial, then denied it.  She was rejected from a trial at Karmanos in Detroit due to elevated liver enzymes at the time.  Now is receiving trial doses of Metformin and Omega 3's from fam dr who is acting as compassionate care clinical trial dr and monitoring her.  I am wondering what, if any were the similarities between your dx and hers.  And any similarities with treatments?  What actions did you take, personally in your life to rid yourself of this monster of a disease?  Can you give my daughter any suggestions on what to do in her life to become a long term survivor such as yourself.  She has two little girls ages 4 and six, and of course, would like to continue to be here for them.  We would appreciate any input you can give, since we know absolutely no one with the dx of IBC, TNBC.  Most people have never even heard of her type of cancer.  I wish you continued good health and happiness.

chaycollins

Rague said:

Live Every Minute To The Utmost

chaycollins - It is highly unlikely you will get a reply from kathrynm as she has only posted once here and that was 11 yrs ago.  She has not been back to the site since the 2008 either.

A little info on IBC - it is only between 1% - 5% of all DXd types of BC so is rare.  Many Drs have never seen it.  So while research is going on a bit more now than in the past and the 'stats' are getting better.

I am a 5 1/2 yr IBC survivor and am still NED.  (IBC, Stage IIIC, ER+/PR-, HER2- 19 positive nodes).  In my case, I found an enlarged node(about size of an almond) under my arm one night that had not been there the night before.  My PA was on vacation so it took me a week to get in to see her.  In that week it had enlarged.  I saw her at 11 that Thurs and Iand she had me at the Radiology Clinic at 1 that afternoon for a new mammo (mine was less than 2 mths old).  The mammo immediately turned into an US and biopsies.  The Radiologist called me the next morning (Fri) at 8 with the path report - IBC.  On Mon, I saw my Surgeon, Wed my Rads Dr, Thurs my Chemo Dr and then lots of scans and tests (and a biopsy on a spot that had 'lit up' on PET along my jaw bone - nothing showed in the biopsy), port implant and 17 days after DX I started neoadjuvant A/C.  In those 17 days other 'signs' did developed, breast enlarged, nipple inverted, peau d'orange developed, node continued to enlarge but I never had any redness/rash or pain.

My TX plan was different than almost every other IBCer I 'seen' had.  Most do 2 different Chemo neoadjuvant - I didn't.  I did 4 DD A/C neoadjuvant, 2 weeks later had UMX and 3 weeks later started 12 weekly Taxol adjuvant and a week after last Taxol started rads and a week later Femara.  The idea was to get it to form a 'lump with margins' (IBC usually forms as a 'nest' or 'bands' instead of a 'lump') which it did. As I was told as long as the A/C worked and got it to form (and shrink) so surgeon had a chance of 'getting it', then surgery would be next and then Taxol to follow up to attack anything that might have been 'lurking around' but not showing up.  In other words - get it under control, cut it out, and then a second attack as 'insurance' and the rads as a back up.  It made sense to me and did work for me.

HMM - what got me through those days and the yrs since?  My family and my Faith.  I was older as was 63 when DXd (Aug '09).  Hubby took over all home chores, cooking, and our dogs and my bunny.  Son took over all horse/barn chores, so I only had to do what I wanted to/felt like doing but never made me feel like they thought I couldn't. Just allowed me to do what I wanted/felt like doing without having to worry that 'things' were not taken care of.  They were very proactive into getting me 'out' and doing stuff.  3 days after I did my 2nd A/C they had me out at a 'Mud Big' driving the my IH Scout I had given to Son for mud noggin.  I drove in the 'Powder Puff' class so was just against other women but I did a better run than Son had done in his runs.  Yeah, I know this is not something everyone would want to do or have an opportunity to but I am a VERY active 'outdoor' woman so it was great for me.

Other thoughts - stay away from 'negative' people.  Especially those who tell 'old geezer yarns' about some person they 'heard about'  or their 'cousin's neighbor's friend' (or 'whatever') who 'had the same cancer and lived 2 weeks'.  

Stay positive and active and treasure every second with loved ones and give them everything 'you' can while 'you' can.  

No one has any 'guarantee' what 'tomorrow' will bring!  Live each day/minute to the utmost.  

Susan

Winyan - The Power Withing

Just want to say a big "Thanks" to Rague for answering my post.  I totally did not understand what I was doing when I answered Kathryn's post.  I am so new to this and feel pretty much like an outsider.  Hopefully, I will soon get the hang of it and bedome a real pro.  I have been feeling rather down lately and was looking for some encouragement and hope.  I really appreciate that you shared your story for me to read.  You seem like an upbeat person and I believe you are right about staying away from negative people and gravitating toward positives.  When a person is feeling down, there is nothing like being around happy people to get you out of the slump.  You sound like a very active person.  My daughter and I, both, love the outdoors too.  I especially love flowers, live in the country, so have lots of flower beds to tend to and spend whole days outside in the summer.  This summer, I hope to help my daughter care for her flower beds.  I also enjoy long bike rides on summer mornings.

I am glad to hear that you are 5 1/2 yrs out from your dx.  We celebrated my daughter's 1 yr NED last Aug. and hope to celebrate the 2 yr mark this Aug.  She is still waiting for that surgery date to have her other breast removed as a preventive and reconstruction of both, and was told she will be recovering for 6 - 8 wks.  That will keep me very busy caring for her and the girls during that time, and that is what family does.

It may be hard to believe, but I was very excited that you answered my post.  It makes me feel like I found a place to share.  I wish you continued good health and keep on enjoying that outdoor life.

chaycollins