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Lobular Breast Cancer: Let's share and support each other

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

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cedar75 | @cedar75 | May 25, 2024

Dotarem is gatoterade meglumine A member of the gallolidium family. It has been shown to be less toxic but has similar side effects. There are many gallolidium types used as radioactive dyes

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casbc | @casbc | May 25, 2024
In reply to @kstar077 "Rely what dye do they use of it isn't gadilinium. Anyway, they flush after the mri..." + (show)
Profile picture for kstar077 @kstar077

Rely what dye do they use of it isn't gadilinium. Anyway, they flush after the mri now! Cheers...keep on top of everything they do to us cancer survivors. We have to be our own advocates. What dye is your place using. Mine is still using gadilinium and said that is the o ly one available. What's yours and I will tell them. Thanks

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The dye is called DOTAREM.

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kstar077 | @kstar077 | May 24, 2024

Rely what dye do they use of it isn't gadilinium. Anyway, they flush after the mri now! Cheers...keep on top of everything they do to us cancer survivors. We have to be our own advocates. What dye is your place using. Mine is still using gadilinium and said that is the o ly one available. What's yours and I will tell them. Thanks

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casbc | @casbc | May 24, 2024
In reply to @kstar077 "If you read the dye paper that you sign read when you have dye with mri..." + (show)
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If you read the dye paper that you sign read when you have dye with mri it says you should only have the dye 4 times in life. Apparently it goes in brain and other places in body. Drinking water and Gatorade after exam only flushes so far. I am requesting a IV flush after mri. I just want to connect with people that have had the IV flush. Who out therehas? Thanks

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Just spoke with my breast surgeon and she said they no longer use that type of dye.

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segm | @semurrey | May 24, 2024

Thanks for sharing that link but it definitely is challenged by most radiologists and can be read in their trade journals the importance of MRI's for dense breasts. I just hope oncologists understand how we feel - early detection is all we have!

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sedonadreaming | @sedonadreaming | May 23, 2024
In reply to @semurrey "My onco fought me on MRI at Dana Farber even though lobular and very dense breasts..." + (show)
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My onco fought me on MRI at Dana Farber even though lobular and very dense breasts still at 58 yrs old! She finally put in order and my insurance did cover! Congress has The Find it Early Act but no action so far but this will make ins companies cover breast MRI for those at higher risk! Iā€™ve also read that while the contrast has been found to stay in some areas of body no ill effects have been proven. Early detection is all we have!

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I wonder how this will differ from or add to the recommendations just published here: (https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/breast-cancer-screening). These recommendations seem to decrease the frequency of mammogram and discourage use of MRI. Am I reading that wrong? It's a losing battle to get anything more than the lousy mammo that apparently missed my cancer for probably a few years, though religiously obtained them. No source of consolation for me šŸ™ .

When it comes to the Find It Early Act, I would love to know what qualifies a person for additional screening such as MRI. Seems to me there will be all sorts of caveats one must meet and those, like me, with early stage ILC and smallish tumor will be SOL. Not optimistic any of this will help those with true early stage.

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ppat4pr | @ppat4pr | May 23, 2024
In reply to @ellya "I just finished treatment for this same thing, although my tumor was smaller. The ā€œinvasiveā€ makes..." + (show)
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I just finished treatment for this same thing, although my tumor was smaller. The ā€œinvasiveā€ makes it scary sounding but as you said, it had just spread a bit outside lobule. I had a quite easy lumpectomy followed by radiation. I didnā€™t need chemo bc lymph nodes were not involved. Everyone told me it was extremely curable and not to panic, so I didnā€™t and it turned out ok. Honestly, other than some mental anguish anyway, it went smoothly and I feel safe putting it behind me. I have faith that Mayo did what was needed. I am 66 so perhaps a much younger woman may need more aggressive treatment. Iā€™m on an AI for 5 years which Iā€™m not fond of, but just started it and Iā€™ll stop it if I have trouble. I realize I was a lucky one and do not mean to make light of cancer or the severe things some women go through. Just trying to give some hope.

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I, too, had good results with this cancer--radiation with zero ill effects. Took Letrozole for 5 years and am doing great. I wish you the same good luck.

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segm | @semurrey | May 23, 2024

Thanks for sharing as my tech didnā€™t mention the flush at my Breast MRI last month!

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kstar077 | @kstar077 | May 23, 2024
In reply to @semurrey "Super helpful! Is it current protocol to flush?" + (show)
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Super helpful! Is it current protocol to flush?

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Yes it is protical to flush. But ask the radiologist and facility and tech to make sure they flush at conclusion of mri of breasts with dye.

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segm | @semurrey | May 23, 2024

Super helpful! Is it current protocol to flush?

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