Hello MommaCandy,
Your experience sounds very much like mine. I was not a Mayo Clinic patient at first. I started with a local doc in my hometown. Pelvic ultrasound showed no masses. My main cancer burden was in the omentum. First look surgery showed widespread cancer, like sesame seeds throughout my abdomen, the caking of the omentum, but no big tumors anywhere else. So I had 3 cycles of chemo, then surgery, then 3 more cycles of chemo. I, too, cut my hair very short before it fell out, and I think it was easier to handle that way. My chemo was carboplatin, paclitaxel, and Avastin. (This was 2 years ago.) They premedicated me with powerful anti-nausea meds before each cycle of chemo. I feel very fortunate that I had no nausea at all. The only side effects I had were hair loss and mild pins and needles in my fingers and toes.
After the first 3 cycles of chemo, I went for the definitive surgery. He only removed my tubes and ovaries. He did not remove my omentum, uterus, or appendix, like I expected.
I decided to go to Mayo Clinic for a second opinion. I fully expected them to say, “Your treatment was appropriate. We would have done the same thing.” But they didn’t.
The Mayo surgeon said, “Your surgery is what I would have done for an 85-year-old.” (I was 61.) “The surgery you had was BELOW STANDARD OF CARE.” 😳 The Mayo surgeon offered aggressive surgery (removing omentum, uterus, and appendix) plus HIPEC (heated intraperitoneal chemotherapy). I said, “Yes, please.” Afterward, I saw the local guy, and he said, “You could be cured!”
I was so stunned by that, I couldn’t think straight. I wish I had said, “The why didn’t YOU do all this?” I never saw him again. I’ve been with Mayo ever since.
I just wanted to share my story since yours sounds so similar to mine. I hope chemo goes smoothly for you. Before you have your definitive debulking surgery, I recommend asking what they plan to remove. (But if you are seeing a Mayo doctor, they are probably going to be very thorough!)
Turns out, I’m not cured. I am going through chemo again now for recurrence. Same chemo drugs, but worse side effects. Apparently, side effects are cumulative. After the first cycle, I had to be hospitalized for neutropenic fever. Got a bad mouth sore. Everything tasted like wet cardboard. Neuropathy worse. But no nausea, for which I am eternally grateful!
I hope your treatment goes well and that you feel well-cared for.
Take care,
—Laurie