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High Risk - MRI?

petyab
petyab Member Posts: 7
edited February 2023 in High Risk for Breast Cancer

Dear All,

I have posted 1-2 times before here and find this to be wonderful, caring and supportive community.

I am high risk. Tyrer - Cuzick is 23.9 % lifetime (without co-morbidities) and 20.3% (with co-morbidities turned on). Mom had BC at 59.

I have had mammos at 35, 38, 40, 41, and about to have my next one at age 42. In addition, 6 months after each mammo, I've had a whole breast ultrasound.

I am beating myself up for having the whole breast ultrasound rather than the MRI. Upon the advice of a family member (who happens to be a med onc that treats BC patients), I did not opt for MRIs. Instead, chose whole breast ultrasound. I am category C density and size B cup. 5.2, weight 130.

My question is did I make a mistake? I certainly cannot turn back to the clock and get the MRIs. In December 2022, I messaged my breast surgeon and asked for MRI. I was willing to pay wholly out of pocket. and get back on regular schedule in Aug. 2023, when I would be due for another MRI. Surgeon told me to wait. Not really sure why. Perhaps because i had whole breast ultrasound in Sept. 2022.

I've read some many posts here about ultrasound missing cancer and I am sick to my stomach.

any input would be greatly appreciated.

thank you.

Comments

  • aram
    aram Member Posts: 319

    Hi petyab,

    I am sorry you are anxious. But please ask for the MRI if you can. I knew MRI is the best type for my extremely dense breasts but did not push my doctor when he said it is not necessary. I had an ultrasound in November. In January met my doctor and he said everything is clear, go come back in two years. In February I found a lump and it was cancer. I should say my case is a very rare case, and everyone in the oncology and breast center knew me as a peculiar case, but it happens.

  • petyab
    petyab Member Posts: 7

    Dear Aram, Thank you for the quick reply. I sincerely appreciate your feedback and kind words. This process gives me so much anxiety. I honestly thought ultrasound and MRI were fairly similar in ability to pick up BC. That is not the case.

    Is it common for BC to be missed by whole breast ultrasound?


  • mountainmia
    mountainmia Member Posts: 857

    Note that MRI is a great tool but also can generate false positives and require more testing. Some people find the anxiety it provokes is not worth it.

    from Cedars-Sinai:

    Magnetic Resonance Imaging (MRI)

    MRI technology relies on the magnetic field and radiofrequency waves to produce images. With breast cancer screening, doctors retrieve images of the breasts before and after you receive an intravenous contrast solution that helps enhance the appearance of abnormal tissue.

    "Breast MRI is extremely sensitive for picking up breast cancers, which is why we use it as an additional screening tool for those who have a genetic-based increased risk of breast cancer and those who have a personal history or strong family history of breast cancer," Dr. Litwer says. Doctors may also order a breast MRI to clarify uncertain findings from a mammogram or ultrasound.

    Unfortunately, as a stand-alone screening tool, MRI increases the odds of radiologists detecting suspicious tissue that isn't cancerous, which may require additional testing.

    https://www.cedars-sinai.org/blog/mammograms-ultrasounds-mris-whats-the-difference.html

  • cookie54
    cookie54 Member Posts: 608

    Hi petyab, I understand your feelings of anxiety because the whole process is stressful. So Ultrasound is a good modality of imaging when you feel a lump or have something suspicious turn up on your mammo. It's typically not used to screen the breasts when there is nothing specific that they are trying to identify. I also feel if there was something obvious that stood out on Ultrasound they would have suggested further imaging. Typically when you are high risk the protocol is imaging every six months alternating between mammo and MRI. MRI is cross-sectional imaging so it's able to pick up small abnormalities. Also with the addition of using contrast it gives the radiologist more information as to whether something may look benign or malignant.

    Are you imaged very 6 months? Since you had Ultrasound in September will you have imaging in March?

  • petyab
    petyab Member Posts: 7

    mountainmi, Thank you for the response.

    cookie, Thank you so much for the feedback. I will have mammo at end of Feb. If everything is normal, next screening would be 6 months later. I will likely chose MRI. I am 42. When I turned 40, my doctor gave me the option of MRI or whole breast ultrasound. I chose ultrasound.

    In my head, I though MRI and ultrasound were equal in their ability to detect. Then... I looked at some peer-reviewed articles and it appears MRI is superior.

    Kicking myself for not selecting MRI. But, cannot go back and undo the past.

  • So sorry you're feeling anxious about this. It's so overwhelming. Do you get 3D mammograms? I'm high risk too (31%) with extremely dense tissue. (so one category up from you) When I first started getting imaging about 5 years ago, I had each breast entirely ultrasound-ed and then a 3D mammogram. MRI wasn't mentioned until my risk level went up in December (primary relative under 40 was diagnosed) so now I have been told I can either get a mastectomy, go on Tamoxifen, or switch between MRI and mammogram every 6 months. It seems to me that every case is different, and while none of us are doctors, it sounds to me like you're doing an amazing job being diligent. Just remember, it's your body, your health (both mental and physical) and it is totally fine to go back to your doctor to at least ask for reassurance/guidance, and/or to get a second opinion elsewhere. XO

  • petyab
    petyab Member Posts: 7

    littlehouseontheprairie, Thank you so much for your kindness. I cannot adequately express how much what you wrote means to me. Just being here in this community helps. I do not have many friends in a similar situation.

    Is your current risk 31%? If not, what did it go up to? (I hope it is ok for me to ask.)

    I actually just messaged my doctor about Tamoxifen/AI.

    Are your docs telling you to chose one option between masectomy/tamoxifen/MRI? Or are they suggesting a combination?

    Any idea what path you will take? XOXO

  • momgoose
    momgoose Member Posts: 71

    petyab,

    I think you have done an amazing job staying on top of screenings so far. Don't beat yourself up over things you didn't know. I too was high risk (due to family history) and thought I was doing everything right by starting mammograms at my request at 35. I was diligent, but then last year my mammogram came back with calcifications on the left side. They took another look and said everything was fine, but two things kept bugging me - 1. Why were there suddenly these new calcifications? and 2. I had this hard to describe deep itch (for lack of a better word) on the left side that had started in the last year. It was like it was coming from inside the breast, not the skin. It was annoying, but I couldn't find anything that seemed to indicate that it was a warning sign. I couldn't see any changes or feel any lumps. I did however take note of the message at the bottom of my "all clear" mammogram report that noted that I had very dense breast tissue and that MRI screening could be considered. Not that it should be...but could be. I went to my regular doctor shortly after this and asked him about it and he said, sure we can order an MRI, I've never done that before but you can be my first test case. Turns out he thought I meant instead of the mammogram for the next year, so I ended up waiting nearly a year to have that MRI.

    Long story short, the MRI picked up two spots on the left side that the mammogram could not see at all. They were biopsied and came back as early stage cancer. I hated every single second of the MRI experience because it was not fun (and I can do a normal MRI any day, but not the face down breast kind) but I know it very likely saved my life. I ended up having an ultrasound guided biopsy following the MRI and then more biopsies via MRI after that. I just had a double mastectomy almost 3 weeks ago now, and I am waiting to find out if I will need endocrine therapy or chemo or both.

    I share my story because I am a huge firm believer in trusting your gut instinct. If you think that MRI screening is something you should do...do it. Yes, it might lead to false positives, but it won't lead to false negatives as both the mammogram and even sometimes ultrasound will do. Push for the testing that you deserve. Understand it should be covered, but only at certain intervals, and since you had an ultrasound, it might not be covered until after your next mammogram. It will be expensive if not covered. But sometimes your instincts are spot-on and you should not ignore them. I hope you are able to find the answers you need.

    Christina

  • Of course! I'm glad it helped. I also don't have a lot of friends in this position but have been getting in touch with people on here and through social media groups and it has really helped.

    Of course it's OK to ask about my risk - 31 % is what I'm currently assessed at. I never had a formal assessment before but the gene counselor I met with said I would have been borderline due to family history, but now with my younger sister being diagnosed, I've gone up. Before then, my doctors were saying close monitoring was enough for me, but now they and I agree that surgery could be the best option. I have two little kids and my anxiety levels are too high to undergo 6 monthly testing forever - but it's going to be different for everyone. I will update as I go through the decision making process!

  • denny10
    denny10 Member Posts: 421

    Petyab, I used to have mammagrams and ultra sound tests before being diagnosed with BC, [my mother died 43 of BC]. I found a lump just a few months after a mammogram. 16 years ago MRI was not an option. It is easy to be wise in hindsight but now I would suggest you grab the opportunity to get an MRI. Good luck

  • momallthetime
    momallthetime Member Posts: 1,375

    I hope it's ok to continue on this thread. Didn't figure out yet how to go about things.

    My eldest daughter was in her 20's she was dx w BC, (felt a lump on her own and the rest is history). Unfortunately, with time it metastasized and she is no longer with us. My other 2 daughters started Mamo/Sono and MRI 6 months apart. Now they are in the mid 30's, one did genetic testing, No Mutations, including myself, and my eldest daughter was neg. too.

    At this point in their 30's they are getting nervous in using the contrast for MRI every year, due to articles quoting the dangers of contrast to the brain. So how important is these MRI as oppose to skipping it? The radiologist MD says to get it done, other docs don't know the answer. Is it a must, or should we be skeptical.

    Looking forward to your answers. Thank you.

  • cookie54
    cookie54 Member Posts: 608

    @momallthetime I'm so sorry for the loss of your daughter I can't begin to imagine your grief and to now worry about your other daughters. I think that risk outweighs the measure on this. MRI is an important screening tool we have for breast cancer . We all know early detection is the key and MR is an crucial tool to utilize when you are considered high risk. For me I would never want to be looking in the rear view mirror saying "what if" I couldn't find any concrete studies regarding real numbers on patients that had issues (brain) with gadolinium. Below is a list of different types of contrast, maybe they would feel better if they went to a facility that used a macrocyclic based contrast as that doesn't hang out in the brain as long? Just a thought…

    Best wishes in making the best informed decision, sometimes it's hard. I understand they need to feel comfortable with their decision. To me definitely a risk vs measure decision. Hope this info helped.

    There are two types of GBCAs based on their chemical structures: linear and macrocyclic (see Table 1 below). Linear GBCAs result in more retention and retention for a longer time than macrocyclic GBCAs. Gadolinium levels remaining in the body are higher after administration of Omniscan (gadodiamide) or OptiMARK (gadoversetamide) than after Eovist (gadoxetate disodium), Magnevist (gadopentetate dimeglumine), or MultiHance (gadobenate dimeglumine). Gadolinium levels in the body are lowest after administration of Dotarem (gadoterate meglumine), Gadavist (gadobutrol), and ProHance (gadoteridol); the gadolinium levels are also similar across these agents.

    *The Medication Guide will be posted once it is approved.

    Table 1. FDA-Approved GBCAs*

    Brand name

    Generic name

    Chemical Structure

    Dotarem†

    gadoterate meglumine

    Macrocyclic

    Eovist

    gadoxetate disodium

    Linear

    Gadavist†

    gadobutrol

    Macrocyclic

    Magnevist

    gadopentetate dimeglumine

    Linear

    MultiHance

    gadobenate dimeglumine

    Linear

    Omniscan‡

    gadodiamide

    Linear

    OptiMARK‡

    gadoversetamide

    Linear

    ProHance†

    gadoteridol

    Macrocyclic

    *Linear GBCAs result in more gadolinium retention in the body than macrocyclic GBCAs.
    †Gadolinium levels remaining in the body are LOWEST and similar after use of these agents.
    ‡Gadolinium levels remaining in the body are HIGHEST after use of these agents.

    To date, the only known adverse health effect related to gadolinium retention