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Topic: Doc having concerns about MRI's because of Gadolinium toxicities

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jul 5, 2018 03:29PM

light1candle wrote:

I was diagnosed with LCIS about a year ago, and fought to be able to have an annual MRI for high risk surveillance. Had my first breast MRI in December and unfortunately had a minor sensitivity to the contrast (hives). When I mentioned this to my BS at a recent appointment, she said that I couldn't have MRI's anymore! That surprised me because I had heard from my internist that I would likely need to be "pre-medicated" with benedryl or similar before the next MRI. When I asked the BS about this, she said she now thinks that repeated MRI's are not a good idea anymore, due to new information coming out about how gadolinium stays in the brain/body and how we don't really know the long term effects of this build up of gadolinium.

In researching, I found information about "Gadolinium Deposition Disease" (GDD) that can cause a variety of adverse effects and shows up primarily in people of European descent with normal renal function. Researchers think it may be related to a genetic susceptibility that may cause an immunologic response, and may be due to an inability to remove the heavy metal from the body.

While I appreciate that my BS has my best interests at heart, I was really counting on the MRI to be an early warning system for detecting bc in its earliest stages. Not sure what to do if this option is no longer available to me -- it may push me in the direction of BMX.

Has anyone else found that their docs are becoming reluctant to order regular MRI's for high risk surveillance due to concerns over gadolinium?

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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Jul 5, 2018 04:22PM MelissaDallas wrote:

After reading the study on brain build up of the gadolinium, I'm rethinking frequent MRIs. I hate them, can't afford them, plus my LCIS was found by mammogram.NCI guidelines are that MRI "MAY" be considered. Follow up regular guidelines are annual mammogram alternated with clinical breast exam every six months.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jul 9, 2018 01:19PM Lea7777 wrote:

Thanks for this info, MelissaDallas and Light1Candle.

In fact my BS was not even sure if insurance would cover MRIs for LCIS because the 20%+ lifetime risk due to genetic factors is reason for MRI, but 20% risk due to LCIS is not she said. However, she said coverage can be granted and is not a definite NO. In contrast a nurse practicioner told me she has always been able to get MRIs for patients with LCIS, but cautioned about the safety of them longterm.

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Jul 11, 2018 01:40AM Optimist52 wrote:

My BS and breast physician told me of the concerns with gadolinium a year ago. It can collect in the brain apparently. I was going to be on a yearly MRI schedule but not doing that now. Just annual mammograms and 6 monthly ultrasound. It's a real conundrum for ILC patients as mammos and even US are not necessarily great surveillance but breast MRI works well.

Oh well, I hated having MRIs anyway.

Second diagnosis PILC - Oncotype 22, isolated tumour cells in 2 nodes Dx 10/2003, ILC, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 10/23/2003 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/2/2004 3DCRT: Breast Hormonal Therapy 3/3/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 6/23/2015, ILC, Left, 4cm, Stage IIA, Grade 2, 0/9 nodes, ER+/PR+, HER2- Surgery 7/6/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 8/13/2015 Femara (letrozole)
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Jul 11, 2018 02:34PM light1candle wrote:

MelissaDallas, Lea7777, and Optimist52 thanks for your input on this topic. It sounds like I am not the only one whose doctor is starting to have some concerns about the gadolinium contrast. I spoke again to my BS this morning after a recent biopsy to my "good" breast (benign!) and she clarified to say that she wasn't saying that I *couldn't* have MRI's anymore, but just that she is reading more and more that gives her some doubts about their long term safety. So the decision is still up to me, but as an alternative she is suggesting alternating my yearly mammograms with an automated whole breast ultrasound every 6 months. This hospital has an automated breast US device called a SonoCine. Has anyone else had this type of imaging? If so, what do you think?

I went ahead and scheduled the SonoCine for Dec. but I am still not sure about abandoning the MRI's altogether, as long as I still have breasts. I also made an appointment with my BS to talk about mastectomy. Last summer when I was first diagnosed with my high risk conditions, she seemed to be quite against any consideration of BMX, but now she seems more open to the idea. Again, not sure that I'm ready to go there yet, but I do want a serious discussion about it to help me decide. (Lea777, I loved your metaphor on the LCIS thread about the unruly, cantankerous family member and how sometimes it might just be better to just cut off contact, to live a more peaceful life. LOL!!)

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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Jul 11, 2018 03:31PM moth wrote:

Oh this is really throwing a wrench in my plans. I have very dense breasts and both the mammo tech & u/s tech told me in the last couple weeks that they were just not able to see things well. I am prepared to pay cash for MRIs so I wasn't worrying about having them approved or not & was thinking of just scheduling them at the 6 month mark between my annual diagnostic mammograms.

But jeeez. If there's an additional risk of heavy metal accumulation in the brain then I don't know.... And I'm originally from Eastern Europe so I guess I might have this genetic mutation. I wonder if it's something that can be tested whether you have this or not (like that test to figure out if you respond to tamoxifen properly..)

Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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Jul 11, 2018 04:47PM light1candle wrote:

Hey Moth. I just want to say that this gadolinium contrast has been used for years with very few known adverse effects, except for people with poor renal function (which is why they test your renal function before doing the test). These newer adverse cases of "Gadolinium Deposition Disease" are out there, but they seem to be quite rare. Not a lot is known about all this yet, but it could be that physicians are becoming more cautious because of a number of high profile lawsuits brought by Chuck Norris' wife, Gena, after she had an adverse reaction to gadolinium. This may be one of the reasons we are hearing more about it these days.


Although I am somewhat concerned by the reports, I would still probably get MRI's if I had been diagnosed with cancer previously, especially a "sneaky" cancer like ILC. I may still get them even though I only have LCIS, but I'm exploring my options. I would counsel any of us to read up on this issue and talk to our docs, before we let this early information scare us away from one of the best tests available for women with dense breasts or other high risk factors. As far as I know, there is no known locus of genetic susceptibility that can be tested for at this time, as there is not much known about GDD yet.

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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Jul 11, 2018 08:01PM moth wrote:

light1candle - thx for sharing that level headed thinking. I'm going to discuss with my gp & my MO. I've had MRI twice but not on the breast. I need to think about long term risk & benefit as I want to be one of those 40+ yr survivors.

Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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Jul 11, 2018 09:07PM - edited Jul 11, 2018 09:08PM by WC3

An allergic reaction can happen with anything and differs from the concerns about gadolinium that have been raised over it's safety in general. If you are allergic to something,it's best to avoid it or work with you doctors to prevent or stop the reaction if necessary.

As far as general safety concerns about gadolinium...

There are two types of gadolinium contrast agents that I am aware of. The older linear ones such as omniscan, and the newer macrocyclic ones such as gadivist.

In these contrast agents, gadolinium, which is a rare metal, and like many metals, toxic in it's free form when it gets up in to your biological workings, is chelated. This means it's bound to other atoms so it can't do any damage. Think of it like a prisoner being detained by guards.

In linear contrast agents, the gadolinium is like a prisoner with a guard on each arm.

In macrocyclic contrast agents, the gadolinium is like a prisoner being detained by guards not only at the arms, but the front and back as well, so it's encaged.

The key to gadolinium contrast safety (for people who are not allergic to it), is to void it from the body before the gadolinium breaks free from it's bonds to the chelation agents.

The primary way to void gadolinium contrast agents is through the urine. A few years after gadolinium contrast agents hit the market, people with reduced renal function who had been given gadolinium contrast agents started turning up with wide spread fibrosis. This is now called nephrotic system fibrosis. One theory is that these individuals were unable to filter out and excrete the gadolinium contrast before it broke freem from the chelation agents, and that the gadolinium atoms lodged in the tissue, triggering fibrosis as the body tried to isolate the atoms.

The macrocyclic gadolinium contrast agents are more stable, allowing for longer excretion times, but over the years, concern has grown about the safety of gadolinium contrast agents in general in people with normal renal function, due to a growing number of individuals who believe they developed symptoms after multiple injections of gadolinium contrast and studies that have found that small amounts of gadolinium can remain in the body of individulas with normal renal function. There are currently efforts to develop an alternative to gadolinium contrast agents.

I've declined gadolinium contrast in the past but I have not declined it for any MRIs to image and stage my cancer because it's necessary to make some tumors visible and the risk the cancer posses to me is greater than the risk that the gadolinium contrast does, but I take a few precautions. I ask which contrast they use. For some parts of the body, linear contrast agents are necessary but if a linear agent isn't necessary than I insist on a macrocyclic contrast agent. My imaging facility uses Gadovist, which is thought to be a safer one.

After the imaging I drink a lot of fluids (to the extent that it is safe to do so) in a bid to increase my urine output.

And last, I try to space out the MRIs.

Would I have had the gadolinium if I were having an MRI of a mass that had not been confirmed to be malignant? Maybe. I really don't like having it but it would depend on the a number of factors I think. I would have to detemine how necessary the contrast was. When I had a brain MRI a few years ago pre cancer dx, I did not have the contrast because we weren't looking for cancer but the second brain MRI post dx was to look for metastasis and the contrast was necessary.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jul 11, 2018 09:23PM - edited Jul 11, 2018 09:23PM by Tresjoli2

my onc said no more MRIs for that very reason. I had been alternating every six months. Between mammo and MRI. Back to just annual mammo now.

Diagnosed at age 40 after going for my baseline mammogram. Dx 4/21/2015, IDC, Left, <1cm, Stage IA, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 4/21/2015, DCIS, Left, 4cm, Stage 0, Grade 3 Surgery 5/18/2015 Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy 6/19/2015 Herceptin (trastuzumab) Chemotherapy 6/19/2015 Taxol (paclitaxel) Chemotherapy 8/7/2015 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 9/23/2015 Whole-breast: Breast Hormonal Therapy 10/11/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 11, 2018 09:23PM light1candle wrote:

Very good info, WC3 - a lot I didn’t know. The gadolinium contrast agent they used on my MRI was called Dotarem (I think). I wonder if this is a linear or macrocyclic contrast agent - I think I will ask about it. Thanks for sharing!

Dx 7/28/2017, LCIS, Right Surgery 7/28/2017 Lumpectomy: Right
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Jul 12, 2018 12:08AM WC3 wrote:

Dotarem is macrocyclic and considered to be one if the safer ones. But if you had a reaction to it then it might not be safe for you.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jul 12, 2018 02:04AM ShetlandPony wrote:

What I am wondering is whether my brain could be more vulnerable to gadolinium-induced cognitive problems since it has been deprived of estrogen and/or chemo-ed for seven years. I’m currently on the chemo Xeloda, which does cross the blood-brain barrier. I know I should weigh the gadolinium risk against the risk of not getting the info an MRI might provide. So it’s important to know if I am at greater-than-average risk. Two of my non-oncology docs want an MRI from me.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018 Xeloda NEAD
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Jul 12, 2018 02:15AM Beatmon wrote:

I told my husband before heading any of the horror stories associated with the gadolinium that I felt worse after everyone....So I am certainly going to research what is researched at my facility.

I believe Chuck Norris's wife has had grave WE from its use.

Dx 7/27/2012, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 8/9/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 12/1/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/1/2014 Reconstruction (left); Reconstruction (right) Dx 8/9/2014, IDC, Both breasts, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy 8/27/2014 Herceptin (trastuzumab) Targeted Therapy 8/27/2014 Perjeta (pertuzumab) Chemotherapy 8/27/2014 Taxotere (docetaxel)

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