Treatment without IBC clinic?

Windermeremom

I was diagnosed with IBC in December of 2014. My treatment plan is 4 cycles of Cytoxan + Adriamycin and 6 cycles of Taxotere + Perjeta + Herceptin. The chemo seems to be doing it's job as the mass is shrinking. I am now more concerned about the surgery and radiation since IBC is so rare. I am considering making the trip to one of the clinics in Texas or Philly for their experience, but since I live in Florida it will be a challenge. Has anyone had a good experience with a surgeon and/or radiation oncologist that was experienced in IBC in Florida or Georgia? I am also wondering if anyone has had an IBC clinic consult with their own local surgeon and RO successfully?

Kicks

In FL today, there should be plenty of facilities with IBC knowledge/expertise.

I was DXd IBC 5 1/2+ yrs ago and even though I live out in the 'boonies' just east of the Black Hills - I had fantastic care and am still NED. You have many facilities in FL. (Oh bye the bye - I happen to be a Native Floridian.)

Moderators

Hi Windermeremom-

We want to welcome you to our community here at BCO. We're glad you've joined us, and hope you find the support and information you're looking for!

The Mayo Clinic has a facility in Jacksonville, FL, appointments can be made via their website: www.mayoclinic.org. There's also the Florida Hospital Cancer Institute: https://www.floridahospitalcancer.com/cancer-progr.... We're sure you'll receive the best care possible at either of these centers. It would be worth scheduling a consult, at the very least!

Please keep us posted, and let is know if there's anything we can assist you with!

The Mods

Windermeremom

Just to update my own post for any ladies in Florida that are fighting IBC, I did find a terrific surgeon at Moffitt Cancer Center in Tampa. Her name is Dr. Susan Hoover and she assured me that she has treated "numerous" cases of IBC while at Moffitt and while she was at MD Anderson Houston in the past. She also told me that Moffitt's Women's Center sees IBC fairly often. I felt more comfortable going there b/c the entire team, including radiology, seemed experienced with my "rare" dx. Although I did not have a complete response to chemo, my 11cmmass was down to 1.5 cm at time of surgery. No nodes had active cancer, so I am happy to report that I am now NED!

Nel138281

Wahoo!!!!