Advice for a possible IBC turnout

LonelyHeartsClub

I am 24. About a month or two ago, I went to "pick" at blackheads or pimples on my left boob, and noticed the skin pore was really deep. Felt like rubber(?); It was just weird skin; it itched for a while before I forgot about it. (I think on purpose since I no longer decided to pick there anymore out of worry). About less than a week ago I noticed my skin had become red where the skin was thick and pitting. I broke down and googled the symptoms, terrified at what I found. Inflammatory Breast Cancer?‽ My insurance is state issued Medicaid, so you can imagine the hassle just finding a doctor. After many failed attempts, I finally found an office not an hour away that took my insurance. The woman did a Breast exam but didn't seem very thorough. Didn't look up close and see what I feel she needed to. Even still, she came to the conclusion I should be sent for a diagnostic ultrasound and bi lateral mammogram. The problem with all this is my symptoms point to IBC. My breast was red less than a week ago but now it's almost a purple tint— since then I've noticed a (on left) thickened nipple, slight chest pain on left, dimpled skin right by nipple along with thickened, rubber skin, and it feels hot on the INSIDE. Not the outside. Like a sunburn would.

Today is Sunday morning. My appointment for my ultrasound and mammogram is Tuesday at 2pm. When I made this appointment the woman on the other end of the phone said something towards "I can schedule you for both, but due to your age, they usually don't do a mammogram". I was shocked but persisted with "well, my doctor ordered it..." or something of the sort, and she said "all right no problem, I'm scheduling you for both."

That right there is my biggest fear right now. That they'll doubt me and try me on a couple rounds of antibiotics that I've read about. I've heard that only a biopsy can diagnose IBC, sooo- Can I ask for a biopsy while I'm there for the other two tests? If I tell them how it's worsened? I'm so scared but I'm also anxiety ridden, so it's hard for me to speak up against people who are waaay more intelligent than I am. Do you think the technician would order it if the evidence is there? I'm afraid I'm just going to die in my sleep. I just want this all to be a nightmare.

Edited to mention that my grandma on my dads side had breast cancer, along with my grandpa who had luekimia (spell check?). On my mothers side, my mom died of small cell lung cancer and my grand mother died of oral cancer. It's pretty sickly in this tree. I guess I'm just looking for support, and answers to how to push for a biopsy and how to get one ASAP.

LonelyHeartsClub

bump

Does anyone know if any active cancer forums? Thank you. I tried googling but to no avail.

jo6359

Try the thread waiting for diagnosis?

Vanessam29

did you end up getting your mammo? Around the same ago and no one at all will give me one. Got 3 MRI's instead.

LonelyHeartsClub

I will be going today at 2pm. It is 9:47am my time currently. When I get back I will update you!!

I'm very sorry to hear you aren't getting the care you think you should. Have you specifically asked for one? Are you showing symptoms? Maybe you should try a different doctor if at all possible?

LonelyHeartsClub

update;;

I went and they only did an ultrasound. They are referring me to a dermatologist for a punch biopsy so I will update on this thread after that. Will be going to the doctors tomorrow to review the ultrasound. I did hear the doctor murmur to the nurse “Pagets? What do you do when it's sourced at the nipple..." They mentioned trying to put me on antibiotics. Kinda expected that after flipping through this forum.

As for you, Vanessa M, I want to reassure you that you're probably okay. I would still push for whatever you believe you need, but I spoke with a women who runs the largest IBC charity in the world and she said an MRI is the only definite way to know if you have IBC or not- and even then 25% are often misdiagnosed. But if they've done 3 MRIs for you, the best way to detect it, and they have yet to say anything I think you should feel a bit better. Keep me updated. I hope you're okay.

Sherri000

I'm chronically ill and have been advocating for myself for a long time. It is very hard but you have to fight for yourself. Your doctor ordered a mammogram and you should have been given one. Period. Call your doctor and let them know you were refused the mammogram. Get a referral to a different imaging center and let the doctor know you will be fighting for that mammogram. If you need to get a new doctor or a second opinion do that. You can try the antibiotics as well and go to the dermatologist but don't give up on getting that mammogram. It's your right to have, especially if your doctor ordered it.

I realize a lot of people struggle to stand up to doctors. It's hard when you don't have the medical knowledge. But I assure you, doctors don't always know as much as we think they do. And they are overloaded with patients and are working in a crappy system with insurance. The only one who can stand up for you is you.

So even though you are young, you still know your body, much better than anyone else. While we can get ourselves worked up and scared over things, sometimes we are correct. And we will do better to have that peace of mind. The odds that you have cancer at your age is low but not impossible, especially if your family has some cancer. No matter how they treat you, stick to what feels right for you. Insist and fight and go to another doctor if need be. I know its a hassle and wears you down. If it turns out to be nothing serious then you will be relieved and will go about your life. But if it is something that needs to be treated you will be happy you fought for yourself.
Good luck!