Possible IBC

Hi Monarchwalker79,

I am sort of in a similar boat as you. I was diagnosed in Feb with IDC, had a lumpectomy, radiation for 4 weeks and then hormone femura for the next 5 years. In July my breast was pink and tender and I thought it was just healing. I saw my Oncologist because I thought I had found another lump in my other armpit. He was more worried about the pink breast and put me on Keflex. I saw him on a Thursday and over the weekend Sunday it got worse. I called on Monday and he said go straight to the ER, you need IV antibiotics. They admitted me and I spent 5 days there. Everyone was thinking cellulitis. The antibiotics helped some and they kept me on them for 2 more rounds of 2 weeks. The pink was still coming and going and the swelling and itching. They stopped the antibiotics and the Onc and infectious disease dr. both felt a biopsy was warranted. So they sent me back to my surgeon. He looked at it and didn't think it was IBC. He is not a breast surgeon but a general surgeon. He also did not catch my lymphedema when I pointed it out and questioned if I had it. He said no and it turned out I was stage 1. Anyhow I digress. He said he would do the biopsy. I also had a skin lesion that appeared after the surgery and it has not healed in the last 6 months so he is taking that out too.
He said, "Now they want me to do this biopsy to rule out Inflammatory breast cancer but I've seen some and don't think you have it". So I'm thinking they would just numb the area and do a punch biopsy. But I come to find out they knock me out and he's doing an excisional biopsy. He said he would go in deep to take the biopsy. So that happens this Tuesday the 24. I'm still itching and the nipple retracts if you grab around the areoli.

So I have many of the same feelings as you do. Are you going to a breast clinic? I've found that doing that seems for me to have everything and everyone in the same place and that's what they deal with.
Have you had the biopsy yet? Please post and let us know what happens. Thinking of you and sending positive thoughts and hugs!

Patty

Hi Allison,,
Thanks for your kind words. I don't have to be there till 10:15 so after sleeping on and off,..here I am. I know Oct. 9th seems like a long way off but I pray it goes quickly. One thing that helped me get through surgery, radiation, etc...was I started doing puzzles. It's amazing what it does..you literally get lost in the puzzle and don't think about everything else. I know that the only way I'm getting this biopsy is that my Onc and infectious disease specialist said that was the next step. Otherwise my BC is doing it more to humor everyone. Don't get me wrong, he's a good surgeon but since he missed my lymphedema...I can't help but wonder about this. My pink in the breast seems to come and go and I too have a raised red spot on my nipple. It's just there. Most of my thinkness is on the bottom half underneath.
I'm so glad you're seeing a breast surgeon. You can't get any better than that. My surgeon, although a general; surgeon works with the breast clinic and is required to do a large number of brreast surgery to be affiliated with them.
I too agree about this sight. I'm just trying to educate myself as much as I can. The more I know the better prepared I am.
I will let you know how it goes. Please keep me posted on how it goes for you and Please know I'm here if you just need to walk, vent or whatever.
Hang in there!

Patty

Hi Allison,

Did you call your dr. to move up the biopsy? I know the waiting is the most difficult. I guess because of what's unknown. Please let me know where you're at with everything.
Now to update you on me. I had the biopsy Sept 22. He did an incisional biopsy to the right of the nipple. I also had a skin lesion on the opposite side of the breast (same BC breast) and he took a chunk of that. The incisional one which was done to rule out IBC came back benign. It was benign with some fibrosis and inflammation. The skin lesion came back malignant but for invasive squamous cell carcinoma.
In researching it seems that this kind of cancer is rare and mostly appears in older woman. I just got the results yesterday and saw the surgeon. It was a relatively small lesion 1.3 x 0.4 x 0.4 cm. It has spread to the margin so he has to go back in and take more out. He doesn't think I need any other treatment, and said they would watch me close.
I really would have just done a mx to get rid of it all but the surgeon (who is a great guy and good) is old school and gave me every reason why not to do the mx. As he said he talked me out of it. I said, yes for the second time.
A lot of what he said was true and included all the risks. I had really hoped to get a reduction in all this but I think I have to come to terms with that not happening.
I see my oncologist first thing Monday and will feel better after that. From what I've read this often reoccurs and chemo is often warranted.
It just amazes me that I am diagnosed with two cancers in 7 months! Ugh.
As for you...try not to think IBC. I felt sure that's what mine was and it turned out to be from the radiation. I will keep you in my prayers.
So they will call me today to schedule for next week.
I have a dear friend in Montreal so I understand a bit of your medical system. I;m not good at waiting either.
Let me know how it goes!

Hugs,

Patty

MonarchWalk, because IBC starts in the dermal lymphatic layer, essentially in your skin, it doesn't take much for it to break through the skin and fungate. The open wound can get infected (very important to keep it clean and lightly covered), or it could be dead tissue from the cancer literally eating your skin and not actually puss. Mine fungated in an amazingly short amount of time. Any tumor that is close to the skin can break through too, but it sounds like you don't have a mass.

I'm glad they did a punch biopsy and that they knew to take multiple samples. I truly hope you just have an infection or something else benign, but if it does turn out to be IBC with a fungating wound, feel free to PM me if you want to talk, or pop over to the IBC Lounge where you'll find incredibly support.