I like that expression "I'm still dancing with NED" - may you continue to dance for for a long and healthy time.
- Paw Paw, MI
- Member Since Sep 2012
Their Diagnoses (1)
- Survivor: Inflammatory Breast Cancer
- Patient Info: Finished active treatment more than 5 years ago, Diagnosed: over 10 years ago, Female, Age: 60, Stage IIIC, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes
- View this journey (9 Experiences)
ruthieq wrote on ibcword's wall
Hi! I am a 10 yr survivor of IBC stage IIIc. ER/PR +, Her 2 -. Im here to let you all know that I know even 20-25 yr survivors so don't lose hope!
I am wondering why you're on tamoxiphen when the aromatse inhibitors work so much better with no danger of clots. Granted there are those that have bone aches, but femara for me had been the least side effect bringer of them all.
As far as no one knowing about IBC, this is unfortunately true. Many doctors have never seen it, and sometimes the thought is if Ive never seen it, it must not be that prominent. The good news is there are those who are funding IBC research and getting information out there to oncologists and other specialties thru conferences and advocates going to local hospitals. Check out the website www.theibcnetwork.org for more information. They have done great things in the last 5 yrs Ive been supporting them, and Terry is a triple negative survivor.
There really is hope for our "Rare" condition. Not so rare as the medical community is educated to recognizing symptoms. Instead of jumping to the conclusion of infection, they are actually taking a second look and acurately diagnosing patients sooner. As we all know time is life. Hope always!
ruthieq posted an update
I am doing well. recent labs have all come back relatively normal. I'm a tad anemic otherwise ok. I am slowly recovering from Back surgery I had in Feb this year, a laminectomy, for pinched and crowded nerves to my legs. Starting PT next week to get back on schedule to exercise and lose weight, for both my general health after IBC and for my RA issues that creep up from time to time. My cancer is still in remission and I'm still dancing with NED. Its been 8 yrs since diagnosis!