MRI Questions

WanderingGypsy

So, I recently had a mammogram (3D) and ultrasound. Woke up one night with pain in left breast, unusual for me. My doc ordered a diagnostic mammo and san ultrasound. Both came back as normal - I go to a great place that gives you the results immediately.
A week later I got a report from the mammo center stating my mammogram and US results are normal. But they're also stating I now need to get a screening MRI -ASAP. I have level 4 breast density and my report also stated I have a high risk of developing BC in my lifetime and this is the reason for the screening.
Has this been anyone's experience? An MRI seems excessive, especially given that my other tests were benign. I haven't had any issues other than a benign fibroadenoma removed when I was 24 (I'm 42 now).
Since I don't have great insurance I decided to use the 23 and me kit to do the BRCA testing. I figured if it's negative then I might not need all these tests.
Any stories of experience you've had with screening/diagnosis would be GREATLY appreciated. Thank you.

Aram

Mammogram is not a great tool for people with breast density 4. On the day I did my biopsy, I also had a mamogram which came back with BIRADS 0 meaning incomplete, as I have breast density 4 as well. The best diagnostic tool for dense breasts is breast MRI which unfortunately I wasn't offered even when I asked. Their recommendation seems to match current best practices for dense breasts.

Good luck

exbrnxgrl

MRI’s are often recommended for dense breasts so, yes, you should have an MRI. As for self testing for bc related genes, that would have nothing to do with an MRI . The vast majority of breast cancers have no known genetic connection! There are well over 30 genes that have bc connections so the state of genetic testing has gone way beyond the BRCA genes. Additionally, I do not know if 23 and me provides genetic counseling. Genetics are something many of us think we understand but it is far more complicated, in terms of understanding your personal risk and future implications of what the tests reveal. I think this is important so that you are clear on what genetic testing is and more importantly, what it isn’t (hint: not at all related to an MRI).

MRI’s and genetic testing are two completely different things and one is not a substitute for the other. Please contact your medical provider or the American Cancer Society to see what financial aid might be available to you and take care.

Moderators

Welcome, WanderingGypsy! We're so sorry you find yourself here with these concerns. We know financial and insurance burdens can be daunting, but as both Exbrnxgrl and Aram mentioned, an MRI is the current best practice for diagnostic testing on dense breasts. Your insurance provider, medical provider, or a local or national cancer organization may have financial assistance available, and we would encourage you to reach out to see what may be offered for testing such as what the mammography center is recommending.

The Mods

moth

Hi WanderingGypsy, just chiming in with encouragement to get your MRI as that is the evidence based intervention. Most of us diagnosed have no genetic mutation or family history so while doing the gene panel might be a good idea, it's not a replacement for regular imaging. Hope you can find a way to access the test affordably!

wallycat

MRI was the only thing that picked up my lobular cancer. Ultrasound and mammo all missed it.

GreenOutdoors

Hi WanderingGypsy,

I was diagnosed with left side IDC which was visible on ultrasound but not on mammogram. Then my pre-op MRI found a suspicious area on the right which turned out to be IDC, and it was not visible on ultrasound or mammogram. I always thought that getting ultrasounds would catch whatever the mammograms didn’t. If you are able to get pre-authorization from your health insurance to get an MRI due to your dense breast tissue, then I would recommend it.

WanderingGypsy

Thank you for sharing this with me. It seems you’ve been recently diagnosed and I’m hoping you’re coping ok.

So, I thought I’d get my appointment on Friday but I do have health insurance (but a SUPER high deductible) and now I have to wait until the pre-approval goes through, which will take weeks. The waiting really is hard. I’m trying to stay busy but I’m a stay at home mom. So I guess now is the time to throw myself into spring cleaning and address all those things I meant to get, but haven’t done yet.

Thank you again for sharing, I wish you well with your journey.

GreenOutdoors

Hey,

I can relate to high deductibles and how difficult it is to wait. Both are so hard! I called my insurance plan directly and asked if they had received the requests and how long before they’d make a decision. It took less time than I thought. If you have the time it can’t hurt to check. Household projects are good, TV, and some exercise to help with stress. I basically only take walks right now but it makes me feel better! Thank you for the encouragement, it means a lot. I have my moments but I’m feeling positive lately! I hope you are able to get the MRI you need soon and that it is all benign and normal. Let us know

WanderingGypsy

Thank you for your responses and helpful advice/support. I did call the insurance company and verified they were working on my pre-authorization for the MRI and was told they received the referral and is pending- but I’m grateful they received it. So I can’t get the appointment until that goes through. I’m not really worried but I just to don’t like the waiting. I’m still learning to be patient.

I just received my bill for a diagnostic 3D mammogram and breast ultrasound (done on 2/11) total is $1,700, of which my insurance will pay $0. I’m now going to do my research to figure out how to get this cost down. If I’d gone for a screening, my cost would’ve been $0.00. Lesson learned. Hopefully MRI will be less expensive. Considering I am a high risk for BC, I would hope my insurance company can work with me on this.

Best wishes to all, I’ll post as I get updates.

fiveoclock

Good luck with your MRI. I’ve had two mammograms and an ultrasound, and on the 19th I have another ultrasound and a 3D mammogram in the morning followed by a biopsy in the afternoon. I have level 3 heterogeneously dense breasts, and a BIRADS of 4C. I’ve been watching, reading, discussing constantly and learning all I can. This video is super interesting - it’s talking about breast density and mammogram technology and why mammograms just don’t work well for dense breasts. https://www.youtube.com/watch?v=bReN7wPrKSM

WanderingGypsy

Thank you for sharing your story and this great video. This definitely applies to me. I’ve had a few mammograms and ultrasounds over the years and was never told I had level 4 breast density. I finally asked at my last us appointment on 2/11 and that’s how I found out. I requested a copy of my record and saw everything I wasn’t told in my mammogram report (Birads results, high risk percentage). I see very clearly now why the MRI is a must. Thanks again for sharing

fiveoclock

You’re welcome! Good luck with your MRI and please keep us posted

LivinLife

Hi WanderingGypsy! I'm just catching up with your thread.... I want to wish you well with the MRI and the waiting.... very difficult. As far as costs... also quite stressful for many.... Keep in mind payment plans. I have huge medical costs every year so often do a payment plan at one if not two medical institutions. Some places do offer sliding fee scales depending on your family income etc. if you qualify. You have to call to ask whether or not they offer this and if you qualify. Also some places will often discount the amount owed if you're able to make an agreed upon payment in full which I imagine would be quite difficult at $1700 though still want to mention the idea. Again you would have to initiate that.... Just some options b/c healthcare expenses are overwhelming for many....

WanderingGypsy

Thank you for the info. I’m dealing with the insurance company and the breast center to see how I can get these costs down and work on a payment plan. From here on out, I’ll make sure I get my screenings done- I hadn’t had a screening since 2014. If I had kept up with them I probably wouldn’t have needed a diagnostic mammogram and ultrasound- and those Screenings would’ve been free. So now I’m trying to negotiate these costs. Fun! At least it keeps me busy while I await my appointment

LivinLife

Actually even if you kept up regular screenings you still may have needed all of this. I've kept up with mine annually for 15+ years and had several call backs for diagnostics and three biopsies... That's what allowed things to be caught early. Glad you plan on keeping up annual screenings once you get through all of this! I hope you get some help on costs between the breast care center and insurance!

WanderingGypsy

So, finally got my MRI scheduled for Monday afternoon. Not feeling too anxious, just curious how it all works. I was surprised to hear from the person scheduling me that the breast MRI can be scheduled anytime in a woman’s cycle. I thought the week leading up to menstruation could affect reading. I asked the woman about this and she said they don’t do that anymore-they’re under new management. Really? Doesn’t seem like best practice, but I don’t really know. I am curious about it, though if anyone has any information about this.

Rah2464

WanderingGypsy wishing you well on your MRI, so glad you are establishing a baseline. I, too, had dense breasts and my little nugget never showed up until we did an MRI. The test can see quite a lot, so don't be surprised if they mention bits and pieces, that is pretty normal. Doesn't necessarily mean something is cancerous. All modalities have their limitations, which is why biopsies can be requested to clarify imaging.

WanderingGypsy

So I got my MRI done today. All went smoothly. It is an uncomfortable experience-but only had to be there 20 minutes. This will be a yearly thing for me now. I have no idea when to expect results. They told me the results would be sent to the breast center sometime this week, but I don't know when those will be shared with me. I figured if they found something then I'll know when I need to know. The breast center is pretty good at keeping me informed. What I don't want is to wait to see my primary/referring doc. She only works 2 days a week max (sometimes less) and is not very knowledgeable. I will update when I get results. Wishing you all well. Thank you for great info.

WanderingGypsy

Update- I have a follow up appointment with my primary doc on 3/25 for the MRI results. Also just received my 23 and me results- negative for BRCA 1 and 2

Fingers crossed!

LivinLife

Glad your MRI process went well. Glad to your appointment for results is right around the corner at this point! Congrats on negative BRCA!!! We'll wait to hear how your appointment goes.... Thanks for the updates!

2019whatayear

Thanks for the updates, hoping your appt is good news and that you can get a payment plan or financial aid to reduce the cost of the MRI. My facility also schedules breast MRI's around periods. IIRC they only schedule like Day 7 post period to day 11 ish.

Jons_girl

wanderinggypsy: Glad you got the MRI and results are around the corner. Glad for the BRCA neg results. I like you was level 4 (extreme) density. My breast cancer was completely missed on my mammo. I got a copy of the CD to see it for myself. I couldn't believe how 'white' (dense) my breast tissue was on that mammogram! Cancer is also white on mammos that is why it is often missed on dense breasts. I was 49 when I felt my small tumor by accident....

I am glad you had the MRI and hope all goes well and you do not have cancer. Keep us posted. We are here for support! Blessings!

WanderingGypsy

UPDATE: Surprisingly, got ahold of my MRI results today (even though my follow-up isn't until this Thursday)

It's unclear exactly what the report really means so I'll post my results here in hopes that someone might be able to shed light on what is stated here. I had a mammogram, and ultrasound-both showing nothing of concern (performed on 2/11). But let me clarify- the ultrasound was performed on such a small part of my left breast. The ultrasound was not a complete bilateral US.

MRI Screening results(3/15):

1) Extremely dense breasts, symmetric tissue

2) Symmetric bilateral background mild to moderate( I was in day 14 of cycle)

3)Right breast:

1.4 cm non mass enhancement in superior medial right breast(1:00) Area demonstrates progressive enhancement

Additional 1.5 cm clumped non mass enhancement in medial inferior right breast (4:00-5:00). Also demonstrates progressive enhancement

Left breast:

6 mm asymmetry in superior medial aspect (nothing else described here and my US was not done on this part of my breast)

I have to follow-up in 6 months with another MRI due to enhancement.

BI-RADS: 3 (probably benign)

Thank you in advance for any input you may have and/or questions I can present at my follow-up appointment.

Anyone have something similar? And what is the 6mm asymmetry?! There's no other description attached to that! Mass? non mass? what?

Jons_girl

Hopefully someone else will respond here. I am not as knowledgeable as others on this forum.

LivinLife

Well first off Birads 3 and 6 month follow-up is pretty good news and seemingly better than what you may have expected. Hopefully no change 6 months from now so you can move on..... I had an approx. 3 cm area of non-mass enhancement on my MRI. After my BMX the surgery pathology showed that area was full of various benign and pre-cancerous conditions. Some of those would have needed removed had I not had the BMX though they were precancerous - less concerning then the DCIS. I hope if this ends up not being benign (try typing those 2 words back-to-back quickly - whew!) for you that it is the precancerous option....

WanderingGypsy

Thank you for your responses. There are still questions regarding these results. I met with my primary doctor and I’m pretty sure I’m more knowledgeable than she is at this point.She only read the report from MRI and provided no clarity. I wish I could speak to the radiologist but I’m not sue that’s possible. The idea of having to wait for a diagnostic MRI in September seems like insanity but I’ll have be patient. How has every single person in this site been able to cope with the waiting? I am impressed and humbled by everyone here. This is a truly phenomenal group of people

Jons_girl

Wandering gypsy: You can call your diagnostic center, wherever you had the test done. The radiologist's name should be on your report. You can ask to speak to them. That is possible. I just wanted you to know that. Have a good week!

WanderingGypsy

So, I have done my homework and have probably read every post in here related to CLUMPED NON MASS enhancement (see previous post for my mriresults)

I have an area of clumped non mass enhancement- showed on MRI. Doesn’t this have to be biopsied? Something doesn’t feel right, but I was told to have another diagnostic MRI in September. Seems like a long wait. It’ll cost me $700 (out of pocket)to get a second opinion so I’m not sure what to do.

MinusTwo

wanderingGypsy - Not surprising that your PCP isn't an expert. In addition to talking to the radiologist, I'd make an apppointment with a GYN or Breast doc who deals with these issues every day.

LivinLife

I agree with MinusTwo! I had a non-mass enhancement show up on my MRI. Had I not been undergoing a BMX they were recommending biopsy to find out what was in that mess. Upon final surgery pathology it ended up being a bunch of benign and pre-cancerous conditions, some of which needed to be removed. September does seem too far out, esp. with all you've dealt with...