Detecting cancer in women with dense breasts: MRI?

Well said! Those categorized as A density are okay- until they aren’t. A means the breast is completely fatty with no occulsions so everything can be seen. They are the lucky ones but there aren’t that many women with no density. B is a partial density. Not all through the breast but don’t be fooled. Cancer can still hide in that. I’m a C- heterogeneous and D is extremely dense. Both my grown daughters are rated D. They both called their docs and were immediately set up for additional screening on an annual basis.

Also don’t be fooled if you think no one in your family has had breast cancer and, therefore, you won’t get it. It may be back in your lineage and you don’t know it because they didn’t talk about breast cancer. It starts somewhere!

So, this is gonna be a bit complicated, but I have to know what women out there may have experienced what I am experiencing. First of all, I have PCOS, a pituitary growth (tumor) which my Mama also had, so it’s in my genes. I also have a meningioma in my brain (as well as neuropathy, arthritis throughout every joint in my body, degenerative disc and bone disease, spinal stenosis on my cervical spine (neck), muscle spasms and am suppose to be having a biopsy done of my muscles) and a few other issues. I don’t know if all this is connected or separate issues, but my labs show an autoimmune disease (they thought Lupus, but now they aren’t sure). I don’t know what density my breast tissue is, but I know they’re highly dense, enough for them to typically call me back in to do a repeat mammogram. My Mama had stage 4 metastatic breast cancer, one entire breast was a mass, and it had spread to her hips and femur. They tested her to see if it was genetic and no genetic gene was found. We were told that most women that get breast cancer have no genetic gene, it happens mostly on a random basis. So here’s one of my many issues. I am an odd patient, meaning I am often referred to as an enigma (must’ve inherited that from my Daddy). My pituitary tumor is only detectable by MRI Imaging. When they do bloodwork, my prolactin level is ALWAYS normal. It was only detected because my Mom had it and I was producing milk, so the doctor I had at the time decided to do an MRI per my request. Sure enough there it was. My labs often do not show certain issues, I need further testing when there is a suspicion to rule things out, but Drs don’t want to do the further tests because my labs are either “normal, inconclusive, or don’t match certain symptoms which should accompany such suspicions” so they scratch their heads and send me in my way saying “I’ll see you in 3 months and we will run tests again or see if you still have these symptoms.” Well, this is gross, but my pituitary hasn’t been checked for over 3 years, typically it is monitored once a year, and now I have something going on with my right breast which has my Dr “baffled” (his words). I told him my breast has some leakage, of course I have to milk it a little, and the leakage comes from a few small holes (where milk typically comes), from one hole it’s white, similar to milk, BUT, from two other holes it appears black, like dark black, but on a tissue it’s like a dark dark green, almost black. He is so confused. So everything that happens to me, and is currently going on, it a mystery. My bones hurt, my muscles spasm, my joints kill me, my nerves are damaged, I have autoimmune disease…but I don’t have autoimmune disease, my back kills me, my neck kills me, I’m severely fatigued, often feel toxic, my memory is screwed, my vision and hearing are worsening quickly, I have breast leakage, a family history of these issues, but all I am being told is “wait and see, wait and see, wait and see.” Meanwhile…here I sit, sick, full body pain, muscle’s killing me, with VERY limited mobility.

I’m so frustrated. I don’t know what to do. 🙁

I always get called back for a repeat mammo on one breast or the other due to density. When I asked my Dr to do other imaging (I hate and do not trust blasting my boobs with radiation, or having my breast tissues smashed, it can’t be good, plus to be called back all the time is frustrating). She told me “insurance won’t pay for other imaging, plus this is ALWAYS where we start. I am FORCED to have mammograms. I HATE THEM. Plus, my Mama had stage 4 metastatic breast cancer, and it wasn’t detected until she was incurable, but “treatable.” Mama is in Heaven with JESUS now. I have some strange issue with my breast now that has my Dr “baffled” and with my PCOS and pituitary growth (tumor) and meningioma (another brain tumor), plus my Mama having “non genetic” breast cancer, he sends me away and says “I have to research this, I’ve never seen anything like this. Come back in a month and we will see if you still have this colored leakage coming from your breast, and we will go from there. I am just baffled.” No tests, no screening, nothing. And I have dark dark green, almost black, leakage coming from my right breast, and both breast are very tender. What to do? I’ve been so sick for a long time, and am in pain from my head to my toes. I don’t know what to think or what to do. I’m on here trying to find out if any women with breast cancer have had to go through any of these things prior to diagnosis? I’m so tired of being bounced around from specialist to specialist with everyone telling me to wait…and scratching their head. Also, they say I have some autoimmune disease…but at the same time I don’t have autoimmune disease, though THAT is showing in my labs. Are these issues connected, separate, does the leakage in my breast need to be tested, I have NO idea. Dr said “it doesn’t look like infection, so I don’t know what to do or think. We do need to rule out breast cancer…but let’s wait because I really don’t know what to do right now. See you next month!” UGH. 😫

Exactly. We need more self advocating!

I think there is a group Densebreadts.org going to look
It up and get involved!

PS: my local breast center in NJ will do MRI for $400 if no insurance. It’s a good idea to get to know the cost in your area.

Good luck 🌸

What a tough road for you. I’m so sorry you are going through all of this!

Your journey is a difficult one and is causing emotional as well as physical pain. I’m sorry that you are struggling so. I had a difficult undiagnosed health concern for 18 very long months a decade ago. It’s traumatic.

I was able to keep going until I found a doc who “got me”. He was an infectious disease doc who talked to me the way TV’s Dr. House would … and he figured I had a neutral toxin from fish feeding off dying coral reefs! The point is… you need to find the doc who can sit with you and figure it out and not dismiss you for three more months.

Are you near or can you get to a Mayo or Cleveland Clinic ? A John’s Hopkins or Brigham and Woman’s or any of these well known research centers? Or, if not, maybe changing your local doctor (s) may be a chance for a fresh look at your profile.

The state of our health system is fragile right now after 3 years of a pandemic and I know it’s difficult to get appointments but as you have to wait 3 mos. For your doc maybe there is another opportunity for you.

I’m sorry to hear that you are waiting in pain and feeling demoralized; I get it … but it’s Time to get proactive. I’m rooting for you 🙏🌸🙏

Get to a walk in clinic...even emerge can get you tests.

@queenbekahboo, you do have a lot going on. It must be so frustrating to be so unwell, know that you have several underlying conditions, and to not get answers. I know that you said you've been shunted from specialist to specialist, but remain without answers. I wonder if you have been to Mayo Clinic or a university medical center where the specialists work together. It sounds like you need coordinated care with a multi-disciplinary team. Might that be a possibility for you for you to request an appointment at Mayo Clinic? Or do you live near a large university medical center?

I’m 48 and have always been “deemed” as having heterogeneous breasts. I haven’t missed a year. They would only do ultrasound and 3D mammogram . Two biopsy as well.
Over the 8 years… multiple call backs. This year…they cleared my left breast but told me my right breast had cancer. My faith was really never with them. I decided to go to a bigger city an hour away to speak to breast surgeon. They ran their tests which were an mri and cat scan. They found cancer in my left breast and it was a bigger size then the right. I’m not blaming the radiologist. We just need them to give us MRIs to begin with. I’m thankful that it’s stage 1. It still blows my mind that I was cleared on one. I’m having DMX on 4/19 and I will fight every year for a MRI to check the areas around the breasts, underarms and chest wall. What’s scary is the thought they would have cleared both breasts.

We always have to SELF ADVOCATE! So glad you got your second opinion… and an MRI. You likely saved your own life… as did I !

Blessings on your journey🌸