MRI for higher risk cases (for my daughter)

Hello, dear All

I am this time trying to find out what to advice to my daughter, who is healthy, and she is 46 years old. But as my daughter(i had a breast cancer in 2019, had lumpectomy and radiation, taking exemestane for 5 years), she was told she has 20% risk to get breast cancer during lifetime. No BRCA gene issue, i was tested.

Now her gyno says because of elevated risk, she should have mammo once a year(no issues here) and also MRI every 6 months. So for example mammo in January and MRI in July, and this is every year.

Please let me know if this is reasonable, because i have never heard of this type of testing.

I myself have mammo and sonogram every year, after my diagnosis, and if something suspicious, i am checked in 6 months(it happened once since 2019, and was not cancer).

I just want to understand if it is too much testing for my daughter or it is what needs to be done. thank you for your experiences. and wishing health and healing to everyone.

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,189

    marinochka,

    My 40 year old dd has been on that type of screening schedule for a couple of years. She has dense breasts, I have bc, all genetic testing (Well beyond just BRCA) is negative, but both she and I feel good about this increased level of surveillance. I should mention that her paternal grandmother also had bc. This is not an unusual schedule, particularly for those with dense breasts or other things that might place one at greater risk.

  • marinochka
    marinochka Member Posts: 88

    thank you,

    exbrnxgrl

    I have to now try to persuade my daughter to do it. She basically does not want, additional anxiety, she says, false positive results, IV. I can understand her points, but for me it is scary not to do it and miss something on time.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,189

    I can understand your daughters perspective and as a mother and bc patient I understand yours too. It is ultimately up to her. My dd is terrified of bc. As mentioned, her paternal grandmother already passed away from it. Being a parent doesn’t end even when they’re adults, but we have to trust them to manage their own lives and just love them.

  • marinochka
    marinochka Member Posts: 88

    thank you

    exbrnxgrl

    You said it perfectly!

  • seeq
    seeq Member Posts: 1,161

    My daughter is 28. I was dxd with de novo Stage IV at 57 (despite annual mammograms). Her paternal grandmother and grand-aunt died from BC. Her genetic testing is clear of all currently known mutations. She was recommended to have annual MRIs until she turns 40, then add (or replace with?) mammograms. She's thinking about it...

  • jons_girl
    jons_girl Member Posts: 461

    I’m post BC dx 7 yrs. I have mammo and ultrasound every 6 mo I do some sort of scan. Mammo usually once a yr but ultrasound every 6 mo. (I’m less dense tissue than I had been during my cancer dx. ). I have had gene testing. Negative other than axin2 but it’s a variant of unknown significance that I have.

    My maternal aunt had ILC dx 2 wks before my dx. My maternal grandmother had breast cancer twice and died of Mets/cancer. My mom has had biopsies but no cancer dx. I have a 28 yr old daughter. She has been scanned. She is a mammo tech. And probably will start mammos at age 30.

    MRI I don’t have as often. I don’t like the gadolinium contrast. They don’t use it anymore in Europe. The USA is behind in my opinion. I just don’t want that stuff in my system. So I’ve chosen ultrasound and mammos as my surveillance.

  • mexicanmary
    mexicanmary Member Posts: 29

    For most of the time I can say yes the screening plan does seem okay, but it’s still better for you to be certain. I would recommend your daughter to speak to her gyno about the need to take an MRI after 6 months and other dangers of it.

  • harrow
    harrow Member Posts: 90

    @marinochka absolutely I think it’s reasonable. I was like your daughter. Mid-40s, healthy, my mom had TN breast cancer in her 60s, genetic testing was negative. I was doing regular annual mammograms and ultrasounds since before I was 40 because of the family history and my dense breasts (category C/D) which makes cancer extremely difficult to differentiate from normal breast tissue - think looking for a snowflake in a snowstorm. I was all clear until I wasn’t. I wish someone had recommended that I get MRIs as well, then maybe I wouldn’t be in this mess - stage IV de novo HER2+.

  • marinochka
    marinochka Member Posts: 88

    thank you,

    seeq

    jons_girl

    mexicanmary

    harrow

    my daughter made an appointment for MRI.

  • marinochka
    marinochka Member Posts: 88

    "I don’t like the gadolinium contrast. They don’t use it anymore in Europe. The USA is behind in my opinion. I just don’t want that stuff in my system. So I’ve chosen ultrasound and mammos as my surveillance."

    Interesting!

  • pharmdee
    pharmdee Member Posts: 9

    Definitely get the MRI's yearly! I wouldn't know I had cancer yet if it wasn't for a screening MRI this year. It was missed on mammogram (and MRI) last year. The earlier it's found the better.

  • anxious66
    anxious66 Member Posts: 46

    That’s really scary that an MRI didn’t catch your breast cancer a year ago. I thought that was the best test but it seems that no test is truly reliable. I just had an MRI in late August and was told all was well but now I’m questioning whether that’s true as I still have the symptoms I went for. What’s the point of all this screening when it’s inaccurate? It’s so frustrating and scary.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,189

    anxious66,

    You are correct in that there is no test/imaging that is 100% accurate 100% of the time. This is very well known and should not come as a surprise but these are the best tools available at this time. What’s the point of the screening if it may be inaccurate? The majority of the time it is accurate, just not 100% of the time. I am sorry that you are frustrated and scared but your chances are that your MRI reading was accurate. Besides bc, there are many, many health concerns for which testing and tx come with no guarantees. The human body is infinitely complex and there is a lot of individual variations in terms of how each of us responds. This is not at all like following a recipe and getting the same results every time. Take care.

  • pharmdee
    pharmdee Member Posts: 9

    @anxious66 I'm so sorry I didn't mean to scare you. I had lobular cancer which is only in 10 - 15% of all breast cancers and is hard to see on any imaging because it grows like a spiderweb not like a lump. MRI is about 96% accurate for lobular cancer, so I just fell in the 4% that are missed. But that's why you go every year, they missed it last year, but the MRI saved my life this year!

  • anxious66
    anxious66 Member Posts: 46

    No worries! I’ve been scared for over two years now. Although my mammogram, ultrasound, and MRI all came out fine, I’m still convinced something has been missed due to the ongoing pain and swelling in my armpit and arm. I’ve recently learned that it is possible to have breast cancer in the armpit that isn’t detectable in the breast for whatever reason. I know I need to go back to the doctor to have this pain investigated further but I haven’t been able to bring myself to do it. My 30 year old daughter in law was recently diagnosed with ovarian cancer so we are all heartbroken over that. She and my son were starting IVF when it was found. Today they harvested her eggs and are creating the embryos as she needs more surgery and chemo which will make her infertile. I can’t add to their stress nor can I cope with anything else right now. Stupid I know but I need her to be out of the woods before any other potential bad news. Sorry for the rant. No one knows about my pain or fear. They all think I’m just getting routine screening so it’s helpful to have someplace to vent. I wish you all well. Thank you for listening.