Troubling Symptoms 9 Months After All Clear

gelsgea

Hello All! Lurking this forum was such a tremendous help to me last year when I found my first lump. I've been reading stories of missed cancers in dense breast tissue and figured I'd post my concerns/questions/anxiety here while I wait for my next appointment.

Found a rather large lump about 12 months ago while laying in bed. Had never done a self breast exam before so I kept looking and found several more. Visited OB/GYN who confirmed several palpable masses and referred me to imaging. Imaging has a hard time because I have very dense breast tissue and cannot see the masses identified by my doctor and myself. Mammogram/Tomo and then ultrasound. US finds 8mm mass below the nipple nowhere near the masses I'd found. Irregular margins, BIRAD 4. I do a core guided needle biopsy with two incredibly distracted nurses. Comes back negative and my doctor suggests I follow up with MRI.

Meanwhile, I move across the state for husband's work and sort of forget about it. About two months ago a headache starts (still have it) and I begin losing weight pretty rapidly (down 28lbs since biopsy). Oddly, I have to go bra shopping because my breasts are growing while I lose weight. But then it kind of occurs to me that it's just my right breast that's growing. I'm 33, family history of breast cancer on both sides, non-smoker, fairly healthy but I have severe osteoarthritis in my hips & knees so I take pain medicine regularly. Nothing too strong but enough that I don't feel my bones crunching together. Well about 4 weeks ago I decided to stop pain meds to see if maybe it would help my headaches (it didn't). But what it did do was allow me to feel the burning, horrible pain in my right breast. It feels like the pain is boring into my bone. If doctors told me I had a beetle eating through my arm, I'd believe them.

Start feeling around on right breast to see if there's a lump or obvious cause for pain. It's far on the right (almost not on breast and toward armpit) then I find something weird, right under my arm (the flappy loose arm skin area) I notice rock hard lumps. Feel around and follow what seems like breadcrumbs under my arm, onto my chest and toward my ribs. It's my lymph nodes. And they're gigantic and swollen and sort of rock hard. It's been 4 weeks with the swollen nodes (4 weeks of me being aware) and they've only become more painful. My right arm hurts so badly I can barely use a mouse at work. The pain seems to be radiating toward my ribs/lungs too and up my neck on the right side. My right breast is burning hot and the skin under my arm is looking dimpled (not quite my breast though) and my skin looks....not right. It's not quite red or rashy but almost like a faint bruise. A week ago I started getting sausage fingers (horrible swelling out of nowhere) and then 2 blood vessels randomly broke causing bruises the size of oranges on my legs (no actual injury). Had CBC done last week (doctor went on vacation and hasn't returned) but I looked at my chart online and RBC, Hemoglobin, Hemocrit etc. are all low. Several numbers are far below the "normal low." Sorry for the tangent, but I'm pretty well convinced I have breast cancer.

After reading so many stories, what can I do to advocate for myself if it seems like they're going to dismiss me without doing thorough enough testing? I was given the all-clear via biopsy 9 months ago but have had a pretty nagging feeling that they possibly missed something. Does any of this set off alarms or have I been spending too much time on the internet? My breast surgeon who handled the biopsy etc last time seemed concerned enough to squeeze me in this Weds. I'm a horrible self advocate and stupidly didn't do the MRI last time. Any advice?

Sara536

I'm sorry you missed the MRI. Please don't miss the new appt. With so many symptoms, I would be very concerned. Even though the biopsy was clear, it doesn't mean all clear. If your doctor suggested an MRI it doesn't sound like he/she was dismissing your symptoms last time. A doctor orders an MRI because an MRI can pick up things that don't show up on a mammo or a biopsy or an ultrasound. They do that beause they don't want to “miss something" any more than you do. Your surgeon isn't dismissing you either. We can't diagnose you but, for all it's worth, I think it's possible you might have an infection which could also cause enlarged lymph nodes, redness, and warmth. An MRI isn't invasive (other than possibly an injection of a contrast dye into a vein in your arm). It does not use x-rays either, but you could be in a slightly uncomfortable position on the table. A small price to pay..... I sure hope this turns out to be something other than cancer- Sending you some ((hugs))💓 PS: If you are feeling very nervous and overwhelmed, you might call ahead and ask for some ativan or diazapam to takebefore the proceedure but wait till you get there unless someone else is driving you.