Diagnosed with DCIS and IDC in May now having symptoms of IBC

Anonymous

Diagnosed with DCIS and IDC in May now having symptoms of IBC

LisaMarie787

At the age of 48, pre-menopausal in May I was diagnosed with DCIS and IDC the IDC was Stage 1, clear lymph node. I finished 6 weeks of radiation 2 months ago, no chemo, (positive for estrogen receptors, progesterone receptors). Due to family history of uterine and ovarian cancer, having menstrual issues and having the bc hormone positive, my Doctor said it would be a good idea to have a hysterectomy. That is scheduled for November 7th. In preparation for surgery, I thought I should have my heart checked, my Mom had 2 heart attacks and my sister 1 year older had a blockage that was found with a CT calcium sore test. The hospital was giving these tests free of charge so I figured I will have that done before surgery so I didn't have to worry. My score was not bad (76.16) but the CT report showed a 6.4 cm fluid mass in the same breast with the cancer. I understand this is probably a seroma, however there was adjacent calcification, and skin thickening was also found, so a mammogram and ultrasound was recommended. This was on 10/5, I had the report sent to my breast doctor and I am going in for the mammogram tomorrow.

I have had redness and some swelling throughout radiation but last week I noticed pain, more swelling, warmth, burning, soreness around the nipple and pitting of the same breast along with pain under my arm and glands on my neck are sore and swollen. The breast swelling is worse than it was when I was going through radiation. I am concerned that I have Inflammatory BC and I am very worried and scared.

Has anyone had these symptoms without it turning out to be IBC? I keep trying to debunk my fears of it being IBC but haven't been able to. I do not think it is an infection as I do not have a fever.

hopeful_36

LisaMarie, sorry about your situation.

A week ago during consultation with a radiation oncologist for my case, she was listing the side effect of radiation exactly the way you've described it - swelling and pain in neck and other areas exposed to radiation. She said women have hard time breathing and are frequently put on steroids for the side effects. Don't num yourself with the fears, and see a radiologist to have her check for the rad side effects.

Sending you healing thoughts.

LisaMarie787

see that's the thing that's what I'm afraid they're going to blow this off as radiation however I finished radiation 2 months ago today and did not have these symptoms now along with the CAT scan showing thickening of the skin calcification and the inflammation I am having is worse than it ever has been. i very concerning I had plenty of symptoms during radiation including swelling however this is new. The pain is different the inflammation is different.

Hadiya

LisaMarie78, I hope everything turned out okay! Sending love to you!

LisaMarie787

So an update... in May 2018 they removed the seroma surgically because it was drained 4 times and would return quickly. Then 3 weeks later they moved some tissue and muscle from under my arm to fill the huge hole left from the seroma. Didn't really have many problems from the surgery...I hate the way the breast is now...I do not understand why it is so different ...that is not the issue, my last surgery check up the dr said i should see him in about a year (this is the plastic surgeon, not my breast surgeon who removed the cancer). So on the 20th I went to get in the shower and noticed something on my nipple...turned out to be dried blood. I washed it off in the shower and didn't have anything on the surface that would point to a skin lesion or anything like that. However blood did start coming out of the nipple. I messaged the plastic surgeon's office and let them know. They called me right back and wanted me to come in to be looked at. I went in and they said they want to do an ultrasound to see if maybe another seroma formed or a hematoma from surgery was causing the bleeding. 2 days later they did a mammogram...took 6 images and then said they will review them to see if an ultrasound was needed. 30 minutes later they said they want to do the ultrasound...The ultrasound showed thickening of the skin (up to 6mm) but saw no seroma or hematoma or infection. The dr. doing the US said she was going to talk with her colleagues to see what the nexts steps were... she came back 15 minutes later and said there was nothing showing the blood is coming from the surgery or anything related to the surgery, they do not know if the cancer is back and having blood coming from the nipple is concerning and the action plan is: Get a surgery consult, get a breast MRI and a punch biopsy. I no longer think it is IBC b/c that is so aggressive that it would be really bad now... I am thinking maybe Paget's Disease.... I go to my surgeon Tuesday.................. Has any one had DCIS and IDC then later got Pagets?