Afraid I may have IBC after mastectomy for ILC

Also, there is some pain. It's not a sharp pain, more of a constant ache. I know that IBC symptoms worsen quickly, and I feel like just going to the ER and telling them to figure this out immediately. I know that's not reasonable, and I won't go. But dang, I never freak out. I don't feel like I'll be able to sleep tonight.

I went to the ER today. I have more ridges today than yesterday, pain across my back, in my shoulder blades, which is an ache not a sharp pain. The area on my chest that has the deep ridges continues to itch and has a red area that's about 5" in diameter.

Chest x-ray and blood work were fine. They called my oncologist, and he wants me to call my breast surgeon tomorrow to schedule a punch biopsy. He also was concerned about the possibility of IBC.

I'll call her first thing in the morning, and she's usually really good about getting me in quickly.

My dad and sister have both had shingles. This doesn't sound like what they had at all, and the ER doctor doesn't believe it's an infection. They did give me a strong anti-inflammatory through IV.

My cancer was in the left breast. Cellulitis was on the right. Mastectomy was bilateral, so both sides were surgical. I still haven't had a fever at all, and my white count today was normal, so they don't believe I have any type of infection.

Hopefully I'll know more within a couple of days.

I'm glad you mentioned shingles. I don't think that's what this is, but I did have chicken pox as a child, and know that I could get shingles. My family members who have had it have said it's really miserable.

So you reminded me that I really need to get the shingles vaccination. Shingles is the last thing I need, and with a compromised immune system, we need to think ahead.

Thanks!

Denise

I would say that I'm livid, but that would be a huge understatement. I can't think of a word for how I feel. This will probably be long, but I have to get it out.

I called my breast surgeon as soon as her office opened this morning. Her nurse said she would talk to my surgeon and get back to me. I explained the ridges and puckering, itching, redness, pain. Also told her that the ER doctor said I had to follow up with my surgeon today, and that they called my oncologist and he said I needed to have a punch biopsy.

When the nurse called me back, she said that my surgeon said she is not worried at all, and that I was already scheduled to see her on December 31.

I told the nurse that I was very concerned, because of what the ER doctor and my oncologist had recommended, and that I really want the biopsy, even if my surgeon doesn't see first.

The nurse talked to my surgeon and called me back again. She said that they were sorry my oncologist had said that I needed a biopsy, and that he shouldn't have said that without saying me. I reminded her that my surgeon is saying not to worry, also without seeing me.

I asked why I was told to watch for specific signs, but when I see those signs and call the office, they say it's nothing to worry about. Without even seeing me. She said that my surgeon explained that puckering and redness are common after surgery, and I reminded her that my mastectomy was almost 2 years ago, and these symptoms just began appearing on Friday night. There have been changes every day.

So - she talked to my surgeon again, and called me back one more time. My surgeon is willing to let me see her nurse practitioner on 11/25. No exam by my surgeon, no biopsy. There is another breast surgeon in the practice, but my surgeon is the director of the comprehensive breast program at the cancer center, so the other surgeon works for her. I did ask if I could see the other surgeon, and was told she has no openings until March.

Some background. When I was initially diagnosed, I told my surgeon I wanted to have a bilateral mastectomy. She was against it, and said that risk of recurrence is the same with lumpectomy as with mastectomy. Then I told her I did not want reconstruction. She was very upset, and said that women who don't have reconstructive surgery do not have good quality of life. I wouldn't even be able to go to the beach! Apparently she thinks women are shallow creatures.

A week after my mastectomy, I had a fever and pain in the incision. I called her office because the fever was 101.7. I had been told to call if I had a fever higher than 100.5. She said it was nothing to worry about.

I called again a couple days later because my fever was higher and the pain was worse. After calling a few more times over the course of two weeks, my husband called one night to say that the area was very red, very hot and my temp was almost 104. My surgeon said that she would call in a prescription for pain reliever and antibiotics, that I didn't need to go to the ER

I went to the ER anyhow, and was diagnosed with cellulitis and a staph infection in the mastectomy incision. When the ER doctor called my surgeon, she said not to admit me. Fortunately, he told me to say the word and he would admit me despite her advice. I told him I would not go home until I was treated satisfactorily. So he admitted me and started me on IV antiobiotics and Dilaudid.

My surgeon visited me the next day, and said I hadn't needed to be admitted, she could have prescribed these same antibiotics at home. After she left, I asked the hospital nurse if these antibiotics could have been taken orally, at home. She said that they could not. I was on superantibiotics, which can only be administered through IV.

On day two, my surgeon visited again, and discussed the infection in my incision. She said one option would be to open the incision and clean out the infection, but it didn't look that bad. She asked me what she should do. I told that she was the doctor and SHE should be telling ME what I should do. She just looked at my husband like she was waiting for an answer from him. He said to open the incision and clean the infection out.

I ended up having a pocket of infection that was 2" wide and 3" deep. I was in the hospital for 3 days, and had a visiting nurse visit my home for 3 weeks. The incision had to be left open, and packed with saline soaked gauze twice a day, which I couldn't do myself. I was just a few weeks out from the mastectomy.

After all of this, I planned to find a new surgeon, but the cancer center I go to is really very good, I love my oncologist who practices there, the nurses in the infusion were awesome during my months of chemo.

So now - I have to decide about finding another surgeon, which obviously I should have done nearly 2 years ago. That means leaving this cancer center, finding a new oncologist, new everything.

I'm so frustrated I could scream. And I still don't have an appointment to be seen until the 25th with her nurse practitioner., and she refuses to do a biopsy.

Apparently I'm a difficult patient because I chose to have a mastectomy against my surgeon's advice, I chose no reconstruction against my surgeon's advice, and I chose to go to the ER against my surgeon's advice.

I'm 57, strong and confident, and don't need boobs to have adequate quality of life. Too bad that doesn't sit well with her.

Okay, I think my rant is over. I'll let you know if it turns out otherwise.

Denise