advocating for an MRI instead of mammography

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.

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.

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?

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

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

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

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.

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.

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!  

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

Hi MHP70,

Thinking of you today and sending benign thoughts your way!  

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

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