My mom thought she had shingles and it was really IBC

bengallover77

My mom is 74 years old, very private, hates doctors and only recently in the last two years started seeing a doctor for the first time in 35 years due to her having polythecemia vera a blood disorder. She has never had a mammogram or any routine medical care because she refused although she had great insurance. My mom told me a couple of weeks ago that she had shingles on her breast, chest and side since February but they had gotten worse. She only told me because they were hurting so badly. I talk to her multiple times a day and see her 3-4 days each week. She wouldn't show me and refused to tell her hemotologist about it. I did call him and they called in an antiviral. She didn't get any better so they called in another round of antivirals, then we had a follow up appointment for her lab work for her PV. I decided to go so I could mention her shingles, the PA looked at her side and knew immediately they were not shingles. She had her lay down to do an exam and for the first time I saw her breast, which had an extensive ulcerative mass covering most of the area. Within 30 minutes we were at a surgeons office having a biopsy. We will have a PET scan tomorrow. I can't for the life of me understand how she knew this was there and didn't tell me, she sees her hematologist every 4 weeks too. The mass look very bad. I honestly have never seen anything like it and I am terrified. She just said she never looked it at and claims it only got that bad in April. She uses a walker and doesn't get around well, she lives at home with my dad who is in great shape and health, but she doesn't really let him help her. I have been doing all the research I can so I know what to ask the doctor when we go for the results. She is in pain from her lesion and today I did get the doctor to prescribe a low dose narcotic to help with the pain. I am just absolutely crushed and devastated, I don't want her to suffer and I want her here because she is my very best friend. I need to know what information I should be finding out from her doctors and what I should be making sure is done. I have a legal/medical background so I know to get copies of her records and stay on top of everything. I am trying to convince her to go to a major cancer hospital but right now she just wants to see doctors where we live. She has said she wants to do chemo and radiation, so that is good she wants to try to fight this horrible disease. Any advice on what I should be doing for her right now, any informational resources that you have found helpful and what I should be asking her doctors. Thank you.

exbrnxgrl

bengallover,

I am so sorry to hear about your mother’s diagnosis. You sound like a wonderful daughter and your mom is very lucky to have you in her corner. That being said, I know very little about IBC but hope that you’ll get more replies as my post will “bump” your comment up on the active topics list. In the meantime, you can search through the IBC forum and read threads that might be pertinent to your moms situation. Wishing all of you the best.

Missmom79

I’m sorry to hear your mom has IBC. Hopefully since it has been six months since her finding it, it has not spread. I can’t think of anything you should be doing right now other than seeing what the Petscan details and what her line of treatment will be and if she can withstand treatment given her age. My grandmother was diagnosed with IBC in her 60’s and hers had spread to her bone by the time she went to the dr. She didn’t die of cancer but a massive heart attack I think due to the treatment. The treatment is ruff on our bodies. One step and one day at a time is my advice to you and your mom. That’s how I got through it. Prayers