My story is long (apologies to all)... but I feel that it is important to pass the word on about IBC (inflammatory breast cancer) which is the rarest and deadliest form of breast cancer. Time will tell how Herceptin has impacted my treatment
and "survivorship".
My name is Dede , and I'm 46 yr old, married, w/ 2 kids (16 & 14 yrs old). My husband and I live in Lima , NY (about 20 miles south of Rochester , NY ). I am an RN, but currently work in advertising (that's another story in itself!)
My "story" begins back on 3/3/00 when I came home from camping w/ the Girl Scouts to find that my left breast was swollen (appeared to be engorged)... no redness, no real discomfort, slightly warmer than the right breast. I saw my internist 3 days later... went on 10 days of Keflex ... mammogram and ultrasound
showed slight thickening of the left breast (and suggested a repeat mammo and u/s in 2 months)... when there was no improvement w/ antibiotics after 10 days, I went to a surgeon (who for 3 weeks was proactive in ruling out everything but Ca). He was convinced that this was not cancer. (I hold no ill will against him. He saw me 1-2 times/week for 3 weeks, and finally resorted to a biopsy .. which revealed the inevitable, unfortunately.)
I learned of my diagnosis on 4/10/00 , pre-chemo scans were all negative, and on 4/14/00 I received my first dose of Adriamycin and Cytoxin . I received a total of 4 courses of A/C, then on to 4 courses Taxol. My chemo treatments were given every 3 weeks. After chemo, my scans all remained negative, so I had a left
modified radical mastectomy (without reconstruction) on 10/6/00 ... the pathology report was nasty, which was expected. Grade 3, ER/PR neg , Her2/neu 3+, 2+ nodes. BUT! The margins were clear, so I'm pleased w/ that.
About a month later, I started radiation... of which I got 33 treatments over 6 weeks. That wasn't bad, really. Just very tiring. I finished up rad's on 12/18/00 . Because of my Her2/neu status (and the whole picture), I had a mediport inserted in November 2000 and started weekly IV Herceptin treatments. I'll
tell you, those treatments were a breeze... only side effects included very transient fatigue... Since my disease has not yet metastasized (beyond the skin), I received weekly Herceptin infusions for a year. My final treatment was given on
11/21/01 .
I am soooo relieved and proud to say that I've remained disease-free, or should I put it, no “evidence of disease”. The plan for the next year includes seeing my oncologist every 4-6 weeks and to report anything unusual such as persistent pain. (No other testing, per my onc .) I will keep my mediport in my chest
for a year. My oncologist tells me that after another year, I can consider myself “out of the woods”. So, I'm not free and clear yet!
On a different front, when I had my annual gyn check up in July 2001, my gyn found 1-3 ovarian cysts by ultrasound and a slightly elevated tumor marker (Ca-125 blood test) for ovarian ca. Because of my own history of aggressive breast cancer and that fact that my Mother died of ovarian ca, I was followed very
closely for the past several months to evaluate these cysts and blood test further. As it turns out, I had a hysterectomy and oophorectomy ( aka ovaries removed) on 11/29/01 . Pathology was negative! We are all relieved that we can close that chapter in my life! I am recuperating just fine at home!
Please feel free to write to me if you have any questions or if you just feel like chatting... I'm told that I'm a good listener.
Update 12/13/ 01 :
GUESS WHAT??!! I received word from my oncologist today....
THE WORD.... R-E-M-I-S-S-I-O- N !!!!
He said "that means we do not see any tumors and there is a hope that it will stay away."
I never thought I would hear the word... nor did I expect to add NED after my name.
Remission... and what it means. I will remember this moment forever.
Today, I CELEBRATE my early Christmas gift... it's the best gift of my life.
