advocating for an MRI instead of mammography

LtotheK

Hi all,

I am extremely stressed out after completing treatment that my oncologist is recommending mammography instead of MRI for my six-month check up.  From everything I'm reading (NYTimes, studies, etc) the MRI is now the standard of care for high-risk patients.  Add to that my mammogram never showed my tumor, as I have dense breasts.

I know this is an active topic of conversation recently, and I'd like to hear more about how people are negotiating with their doctors.  The MRI was so definitive in my case. The mammogram never caught the tumor, but ultrasound did.

What I'd particularly like to know is why I would be getting opposition.  I suspect the hospitals are worried about this new standard of care, perhaps they are not ready to switch everyone over.

I will change doctors if necessary.

Fearless_One

Wow, I could have written this.    I asked my BS the same question, she said mammos are the only way to see microcalcifications.   Still, I was livid.  I eventually got my breast MRI, but I had to fight.   They said it wouldn't be approved, but it was. 

changes

Hi,

Similar problem here. Had my 6-month follow-up with mammo only. Came back BIRADS 3, with a note that the false negative rate might be "markedly elevated" due to my breast density. I questioned this with both the surgeon and rads oncologist. The rads oncologist called the radiologist who did the mammo, because I wanted to be sure they do an MRI at the NEXT follow-up. The radiologist then says that my breasts "are not really all that dense" and she doesn't think an MRI is needed. So then why did she write in the report that my breasts were dense (and I was told that by a different radiologist when I was diagnosed in the first place). She tells the oncologist that an MRI will have "too high a false positive rate". WTH?? Maybe that will balance out that high false negative rate from the mammo! The oncologist is still trying to get it arranged for the MRI at the next follow-up. The rads oncologist also said she was concerned that I would just get upset if I had a false positive. I told her I'd rather have a false positive on an MRI and be upset for a few days, than a false negative on a mammogram and be dead. Yeesh.

Fearless_One

Karen, you bring up such a good point.   I am SO tired of hearing about the perils about a false positive, when false negatives (like so many of us have had) KILL people!   These doctors really need to get their priorities straight when it comes to false negatives vs. false positives.

As for her "taking back" what she said about your tissue density, I find that a huge flag and would not want to use her in the future.  You can request a specific radiologist, I always do.  And I always make sure it is a "breast imaging specialist".    The radiologist who missed my tumor was not even a B.I.S.  

Fearless_One

Yes, this really needs to be passed in all states.  Had I known better, I would have been having US's all those years with my mammos and maybe would have found my lump before I was a stage II with Lymph node involvement.

Shrek4

With me, mammogram didn't show the tumors until it was too late, and the US didn't show a thing even after the diagnostic. MRI showed things just perfect.

Fearless_One

MRI is much more reliable than US (but US are better than just mammo).   Had I not felt my lump and was able to show tech where it was, she would not have found it.   She kept asking me to show her where I felt it.

US is good if there is already a palpable lump, but who wants to wait until then, right?

momand2kids

I have negotiated for a mammo and and mri each year- 6 months apart.  My onc was a little tentative at first, but when I laid out how the mammo missed it and the fact that I had ILC which is often not picked up on mammos, she agreed to it.... for a year or two. I had one in May, scheduled for another this may.... I have decided to take it a year at a time.... and if she doesn't want to do it, I will find someone who will.....but for now, we are in agreement.

Fearless_One

Yeah, you really do have to assert yourself or you won't get one.  

Sandals

Why not try a Thermogram and an MRI and Ultrasound?

My docs are trying to convince me to get another annual mammo but it aint happening.  Just had my first termography done last week and my second in 3 months time.  I'll never get another Mammogram as it hasn't shown anything for me so far and way too much radiation.

Fearless_One

I don't know much about thermography, I will need to read more about this.  

eileen1955

My "nurse navigator" (from my husband's HR dept) printed out the guidelines for MRI and I handed them to new BS with pertinent clauses highlighted in yellow.  Like most insurance companies; these guidelines are based on Medicare guidelines.    The fact that my initial tumor was invasive and NOT SEEN ON MAMMO was a huge red flag.  Breast density by itself was not as strong an indicator for annual MRI's.      The mammo is still considered the "gold standard" so you have to get that in addition to the MRI.        Knowledge is power.

Fearless_One

Eileen, very interesting!   My BS should have known that!   I had to really fight her to request the MRI authorization (which was approved).

Survivorwoman

Thermography is probably the way to go. Only that it is not covered by insurance and costs $300 many of us probably can't afford, though, I decided to start saving for it. (the full body thermograhy is $600, might be worth saving for that)

Fearless_One

Thermography must not be that reliable or seems everyone would be doing it?   I don't know, sounds too good to be true, but I don't know much about it.

Char2010

I am getting the round around as well.  Very feed up with this whole process.

voraciousreader

At my annual gyn visit, my doctor found a palpable mass and sent me for a mammogram and ultrasound.  I have been going for annual mammo's and ultrasounds for more than a decade and also have dense breasts.  The mammo missed my tumor, but the ultrasound picked it up.  A subsequent MRI found a small amount of DCIS.

My breast surgeon told me that my mammogram was "useless" because of how dense my breasts were.  HOWEVER, here's what my radiologist said to me at my six month post-op checkup.

Going forward we will continue to do mammo's and ultrasounds every six months.  Because, WHILE THE MAMMO MISSED MY TUMOR, it doesn't mean that, heaven forbid, it will miss the next one!  The mammo finds some things that the ultrasound doesn't and visa versa.  Annually, I will get an MRI.  He said he will notify the insurance company that my breasts are IMPOSSIBLE to ACCURATELY SCREEN and he won't put his signature on anything assuring that I'm cancer free without doing the MRI.  At the six month check up he gave me a BIRAD 3 and told me NOT TO WORRY.  He was giving me that classification more for his sake than for mine.  He wants the paper trail to show that "these girls" are hard to read and I need the MRI so he can assure both of us that I am healthy.

The takeaway message is that you need a radiologist that you can trust and has a good plan for going forward.

Char2010

I saw my radiation oncologist 30 days after the last radiation treatment and he told me that I should come back in a year for a check-up and that my medical oncologist is my "quarter back" and will be monitoring me going forward (I also had chemo).  My medical oncologist seem to need to consult with the head of imaging about everything.  Who is on first?

LtotheK

I'm at the clinic this morning, having just had two mammograms.  We'll see whether I get an ultrasound, and my doctor is really, really giving me the runaround re: MRI. I can't even get a commitment for an annual MRI. I've always had ultrasound with my mammograms, here it seems they don't always do them. We'll see, if I have to go and get another opinion, I will. Gals, I'm freakin exhausted by this.

My breasts are terribly dense.  While I understand mammography and ultrasound are useful, they absolutely did not find my tumor.  Therefore, it is completely logical to me that I would use all diagnostic procedures available.

Not to be paranoid, but I get the vibe this might be an insurance or workload issue.  Why deny someone a test that definitively diagnosed cancer?

LtotheK

Thermography, by the way, is supposedly not terribly accurate still.

thenewme

Hi MHP70,

I understand your frustration! You may have already mentioned this, but have you looked up and/or spoken directly with your insurance company to see exactly what their policy is regarding the situation?  It sounds as if it's not clear whether the doctor or the insurance company is doing the roadblocking, so it may help to clarify, so you can plan your appeal.  

What, exactly, does your doctor (oncologist?) give as reasoning for not ordering MRI? Have you printed out and talked with him about your specific concerns?   Especially for someone in your situation, it seems that prudent vigilance would warrant the use of at least rotating imaging methods.  

As far as I know, you're right about thermography.  It may have some potential in the future, but there are very good reasons it's not covered by most insurance plans. Even the thermography organizations themselves say it's not meant to be a substitute for mammography, and that it has significant limitations.  

Best of luck for totally benign readings, whatever imaging they use!  

koshka1

Hi,

Mammogram caught mine with calcifications.  Biopsy found my 2 tiny IDC tumors.  The U/S I had right after my first mammo showed nothing but normal tissue.  Geez

After 1 year I requested an MRI.  Practically had to beg due to the fact that I am in Canada and breast mri's for screening are not a regular practice. Anyway, my oncologist got me in as I am young, with dense breasts.  My MRI was good.

Now that I am deemed low risk they don't warrant paying for the Breast MRI but I am scheduled for mammograms.

I have made a decision to save my pennies and pay for a private MRI.  It costs me $1900 freakn' dollars but gives me peace of mind.  I know that is a huge chunk of change and I would rather be spending it in Maui. But I really believe that if this cr*p is caught early  - it is our best defence!

Last years MRI was good....and this year I should be getting one sometime in February. 

Hoping and praying for good results. 

Hugs...Kosh

marbletop

Hi Ladies,

It is standard where I go to have a mammogram once a year and a MRI once a year. So I get my Mammogram in February and my MRI in August. I believe an MRI will not pick up Microcalcifications , but it is very sensitive and will pick up other small suspicious areas more than a Mammogram.

I have to be honest, I get terrified every time I have to have a check up. I was diagnosed four years ago and still get freaked out. Good luck to you all.

Cellist

laura347

mammo never saw mine either...creepy. They even took second look 3 months before diagnosis and said it was "dense breast" I think they were looking at it the whole time.I think ALL women should have MRI...especially high risk. Only reason I got one is because my mom was diagnosed a 2nd time and I asked for it. I was lucky...I think.

thenewme

Hi MHP70,

Thinking of you today and sending benign thoughts your way!  

LtotheK

Thank you all, as usual, for your outstanding feedback. So, I'm on it now.  I'm demanding a meeting with current oncologist to find out why they didn't even do an ultrasound yesterday, am collecting all of my test results and headed to a second opinion.  What I really resent is the fact they are not even-handed:  another woman with same diagnosis at my clinic is getting MRI.  Weirdly enough, for one breast.

My doctor claims the mammograms are read more aggressively now.  That doesn't help when nothing can be seen in dense tissue.

I still am trying to wrap my brain around why they are saying no.  My oncologist is saying there is some risk of kidney disease, and that as a young patient perhaps I shouldn't be exposed.  Has anyone heard this? 

SAMayoFL

Actually, that was exactly what I was going to post.  I have 9 weeks of chemo to go and then on to radiation.  I already know that after treatment the surgeon will monitor my checkups for my remaining breast - not my oncologist.  I am another ILC girl and my May mammogram was a BIRADS 1.  No follow up at all for one year.  In September I lost my right breast because the tumor had grown so big and so aggressively that I was not a candidate for lumpectomy.  I go back to the surgeon in April and I will have a mammogram followed up with an ultrasound if anything is detected and an MRI 6 months later.  When I told him I really did not want a mammogram ever again, he said that alternating screenings every 6 months is a good for several reasons:  mammograms pick up things that MRI's don't pick up on and vice versa and the type of radiation and contrast that has to be done for the MRI's is not something you want to be exposed to very often, especially in cases like ours when CT scan, PET scans, etc. may also be in our futures.

I always like it when I run across threads like this and we are all able to compare notes.  I especially liked the suggestion about requesting a specialized breast radiologist.  I never would have even thought about that!

Susan

thenewme

Hi MHP70,

I wonder if your doctor is thinking of the gadolinium contrast / MRI issue we discussed in another thread?  The FDA issued a warning requiring labeling changes for gadolinium contrast to clarify the risk of liver/kidney  problems in a very specific and very small subset of patients with already compromised liver/kidney function.  

Unless you have some known kidney disease, I would think the small risk of kidney damage would be vastly overshadowed by your very real situation as a high-risk BC-diagnosed patient with a previous history of accurate imaging by MRI only.  

I'm glad you're asking more questions and demanding some answers!  Keep us posted on what you find out!

j414

I have a very/very/very strong family history of early onset (pre-40) breast cancer. My previous gynecologist told me mammos weren't necessary until I was 40.  I fired her. The head of radiology at a top NYC hospital told me my mammo was clear, even though I felt something.  He also wrote on my chart that I was low risk.  I fired him too.  I switched to a "high risk" gynecologist and she sent me to my present radiologist who INSISTED on a mammo, MRI and sonogram. I have very dense breasts and my tumor was only detected by MRI. I see my radiologist twice a year.  One appointment is a bilateral "compression" mammo and ultrasound and the second appointment is an MRI, unilateral mammo (on the lumpectomy breast) and ultrasound.  This may be overkill, but I'm not taking any chances. A good radiologist will have a low false positive rate and even if we do get a false positive, it's better than the alternative.  Like most of you, I do not trust mammograms and if your doctors are not willing to address your concerns, then find a doctor that will.

Best,

J

koshka1

Hi!

The MRI clinic's usually require a blood test prior to an MRI with any type of contrast like Gadolinium.  

They like to check that the liver and kidneys are functioning well so that they can flush out the dye.

In most people this does not cause a problem.

Kosh

LtotheK

Just by way of an update, I'm doggedly pursuing with my oncologist why the radiologist is comfortable with mammogram only in my heterogeneously dense tissue breasts.  The mammograms state right on them that density limits readability.  It's in print.

Apparently, my radiologist has telekinetic powers to read my dense tissue better than anyone else can. 

I resent what feels like a total hospital lockstep.  I've called for all reports, and am seeking a second opinion at another hospital. A total pain in the behind, but I'll be up nights if all I get is a mammogram screening post breast cancer!!