MRI experiences with false positives and over treatment?
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I understand Jessica. What is even crazier is high risk women get more screening than a lot of women who have had a prior cancer diagnosis. What's worse, for an individual the risk percentage estimates are barely more accurate than a coin toss. I am just telling myself that the fact is, the majority of women with LCIS do not go on to develop cancer. I find the diagnosis more annoying than frightening most of the time.
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jessica, from what I understand, false negatives aren't high in younger women because anyone with high breast density is now advised to get a supplemental ultrasound. Ultrasound brings the false negative rate down. Anyone adding an MRI to their screening regimen brings the false negative rate down even further to almost nothing.
That's an incredible level of assurance, but getting there comes at a cost - a high chance of false positives, overdetection and overtreatment. It's a tricky trade off
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Jessica- I can understand your predicament with cost of regular MRIs-it adds up. I could forward you articles but I think you are looking for personal experience (we can all google, but be careful to look at quality of studies). I have talked about my history before and apologize for those who have heard several times but it is applicable to your questions. I am high risk w two sisters with IDC 44 and 45-no genetic component found so far and very dense breasts. I originally was part of the ABUS study in my late thirties which used mammograms with ultrasounds for high risk patients but became ineligible when I had my last child at 40. Different radiologist saw me in 2014 and highly recommended MRI.I had my first MRI last December at age 43. First MRI Birads 4-subsequently diagnosed multifocal DCIS-so did I dodge a bullet? Probably, but I had 5 MRIs total last year between exams and biopsies and continue to have them every 6 months-scheduled for one at 630 am-uhhhh- tomorrow. They are expensive and not that pleasant, though I am certain considerably easier than the treatment of advanced invasive cancer. I did not consider the expense and inconvenience of regular MRIs when making treatment decisions. It is also important to consider where you are having these tests and who is reading them. Try to go to same reputable person/place if possible.
It is a balancing act of wanting to be safe and always finding a little something that brings you back for another test. That's were making a plan with your doctor and being a partner in decision making helps. I made a deal with Gyn to space out ultrasounds related to Tamoxifen (we compromised and I promised to come right in w/any issues) and I plan to try and extend MRI plan to every year when I see RO next week for results. Will see what results say and what he thinks, then make a plan together.
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I so understand this. But this is also where trust in good doctorsand great radiologists come into play. Surgeons don't want to cut into you unless absolutely necessary.
I recently went under I think every kind of biopsey possible for the breast. Presurgical required an MRI to confirm a possible area close to my chest wall. I have small breasts so getting clarity close to the area was almost impossible. MRI found it clearly.
My surgeon consulted with others and surgical biopsy was deemed necessary based on size and location... Dense breasts full of cysts and one location earlier biopsied this month with ALH.
It might or might not be Cancer. Being so close to the chest wall the MRI was helpful. If it's fibroadeno (sp) or fibrocarcenma it still would need to be removed based on the fact they grow
Second opinions are good as well. Doctors who listen and educate over telling you. It's a partnership. In the end you make the final call. I think that is the biggest lesson it's your call in the end. As advanced as we are--still a long way to go
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JMo33, Fibroadenomas are usually left alone and the recommendation is NOT to remove them unless they are big and cause pain or otherwise bother you, or you are getting to an age that cancer is more common to develop and it is so big it could obscure a cancer behind it on a mammogram. Yes, sometimes they do grow, but thebrecommendation is still usually to leave them alone.There is no such rhing as a fibrocarcenma (fibrocarcenoma?)as far as I know. Fibroadenomas are benign and stay that way. they are not and do not become carcinoma.
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Just wanted to check back as I had follow up visit with rads oncologist today. I am officially off the MRI train! This last one was difficult for me-made it through last two minutes by counting to 120 as pressure on sternum and feeling closed in was getting to me. I will stick with every 6 months mammo. Does this make me a little nervous given the fact that MRI found original issue? Yes, but I trust my doctors and if I have any changes in stability they will follow up with additional tests. Just reading about newer test in another post that seems to have promise. I am relieved emotionally and financially with this new plan to stop MRIs for now. Best of luck to all
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Hi,Very interesting thread, thank you all for your contributions. Very interested to learn about gadolinium persisting in the brain.
Before diagnosis, I was being followed by ultrasound as I have very dense breasts (I was in my late 30's when I started). I had one mammogram at the very start, and the radiologist told me that because my breasts were so dense, ultrasound scans were a better diagnosis tool. My GP wanted me to do a MRI but they're more expensive than ultrasound scans (443 euros v. 120 euros). Following diagnosis (biopsy), I had a 3D mammo, which still did not show my LCIS. I am going to pick up the results of the MRI next week: the radiologist told me he needed to spend some time over it (and compare the pictures from those of the ultrasound scans from previous years). It didn't look like the LCIS was 'leaping' at him out of the screen... He suggested that in the future I associate MRI + ultrasound (for further investigation of anything suspicious, to try and prevent unnecessary biopsies), and that I go to a big cancer centre where the radiologists spend their whole day looking at breasts with carcinomas. The surgeon I chose (at a big cancer centre) has recommended watchful waiting. I think he wants to gather data as well, for future papers. He seems to know what he's doing, and at last he takes the time to explain and does not talk down to me, unlike some other medical professionals!
For young women or women with dense breasts, I have found the following website really useful:
There is also a new medical imaging tool which is currently being tested, molecular breast imaging:
http://www.breastcancer.org/symptoms/testing/types/mbi
https://www.ted.com/talks/deborah_rhodes?language=en
Apparently it is more sensitive than MRI (or mammo) to detect cancers in women with dense breasts, and to detect lobulars. At my next scan, I'll ask the hospital whether they are thinking of getting one.
Best wishes to everybody.
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