MRI

Kleenie

How many of you still have MRI's done? I will be 5 years this week since being diagnosed with Stage 1, 1cm ILC. I had a lumpectomy and radiation. The last MRI i had was after 1 year. My breast surgeon has been saying for years that it really isn't necessary because there are so many false positives. It has always made me nervous because my breasts are so full of scar tissue from surgery, biopsies and radiation plus they are heterogeneously dense bilaterally. I have such a hard time with self exams because my surgical breast is so lumpy and bumpy. I saw her in June and she finally said we could do an MRI in six months. So now I'm getting ready to call to have them schedule it. Am I overreacting? It makes me so nervous that at 56 my breasts are still so dense which is why I would feel better having the MRI. The mammogram is 3D but the report does say that because they are dense it's possible to miss something and there were some calcification. I guess I'm just curious on how many of you still have MRI's done.

beach2beach

hi Kleenie,

While I can't respond directly to your question, I'm sure someone will come along soon. What I can say is that when I was diagnosed with ILC my surgeon when she gave me surgical options, told me if I chose a lumpectomy I would be going at 6 mths mammo/sono and alternating with Mri. I understood that to be for a very long time. I ultimately chose a bilateral mastectomy

Kleenie

Thanks so much for responding Beach. This actually makes me feel better to know that your surgeon told you that you would have MRI's every 6 months. I haven't had one since 2013 which was a year after I was diagnosed. The surgeon has been saying for years that there wasn't a need for it which I always found strange seeing how hard it is to see ILC on a mammogram. She also said one of the other reasons is because of too many false positives. I would rather take a chance with false positives then have something go undetected. I called her office yesterday and the nurse has to see if insurance will approve it before I can schedule it.

Thanks again for taking the time to respond.

Lab-girl

Hi Kleenie,

I had a unilateral mastectomy 2 years ago and alternate between 3D mammograms and MRIs every 6 months. My lobular tumor didn't really show up on the mammogram or ultrasound but on the MRI. When I fill out my mammogram paperwork every year, in addition to my family history of breast cancer, I always document that lobular tumor was not seen on mammogram! My doctors are good and order the MRIdue to my "high risk" profile but I don't think it hurts to to have a paper trail, too.

Optimist52

I had one breast MRI at second diagnosis and one as a follow-up and I thought I was going to stay on the 6 monthly alternating schedule of mammo/US and MRI, however my BS expressed concerns about the gadolinium used as a contrast dye in breast MRIs. She told me there have been recent studies showing it can accumulate in brain tissue and has suggested instead 6 monthly US and mammo/US.

As someone whose 4cm ILC was missed for years on mammograms, this is extremely frustrating however the risks of the gadolinium concern me. It's a real dilemma.

Kleenie

Lab-girl: That is an excellent idea. After all the back and forth for the last few years about insurance not wanting the MRI's because of false positives etc., my doctors office called to get it approved and insurance didn't even blink an eye. I don't think they should once you have already had BC. I have my appointment December 12th. I'm sure all we be well but I will feel 150% better having it and not worrying about all this density and lumpiness in my breasts which makes it so hard to do self exams.

Optimist: I have never heard that before. That is very concerning. It is frustrating because ILC is so hard to see. Mine was found on a mammogram but they really were shocked when it was cancer. I think they were doing a biopsy to be sure but never expected it to be cancer. Your first BC is pretty much the same as mine was. I'm so sorry you ended up with it again 12 years later. How long do you think you had it before the found the 4cm? Seeing its so slow growing it must have been a while and a lot of mammograms. I hope you are doing well now.

Anonymous

I had two breast MRIs before I had my surgery, and I just had another for a baseline for any potential breast tissue left after my BMX. Luckily the MRI didn't reveal any, but I'm grateful I'm being followed aggressively. I had dense breasts initially, which hid the danger, and although I was diligent about getting mammos yearly, five were reported as "clear" --the last one was "clear" just a few months before I discovered the tumor. I don't trust mammos; I also considered that ILC has a higher tendency to be multi-focal--(wind up in both breasts). I'm pretty okay with my BMX.

Kleenie

Claire I'm so glad you are doing well. when i was diagnosed I was told I would need a lumpectomy. The surgeon at the time never discussed any other alternatives. I knew so little about the type of cancer I had. If I could do it over again I would have slowed things down so i could get more info. I was diagnosed and then had surgery in two weeks. I'm with you I don't trust the mammos. Which is why I think I have been pushing so hard for the breast surgeon to do an MRI. I need the peace of mind.

Optimist52

Kleenie, thanks so much for your kind wishes. I'm doing well now, though with the typical side effects of letrozole. The second time around was certainly very difficult especially as I had been having annual mammograms and ultrasounds so have felt rather let down by the breast centre I have been going to for years. I had had daily itching and a slightly inverted nipple on the left breast which the doctors I saw didn't seem to pick up on, anyway I found the lump myself. I also found it the first time.

The issue with MRIs is very worrying to me because I understand that they are the best tool for picking up ILC. At this stage I'm not having any more MRIs and considering a prophylactic mastectomy of the right breast, although the thought of more surgery is off-putting. We need better and harmless technology to help find breast changes.

Kleenie

Optimist, I have to ask is the itching a symptom? I have been having some much itchiness on my good breast. The breast itself looks normal. As far as lumps etc I can't tell. which is why I want an MRI both my breast are always tender to touch and very lumpy and i get stabbing pains on both occasionally. I totally agree with you they need to come up with better screening that isn't harmful to us and can actually catch the cancer. I still consider myself so lucky that mine was caught on the mammogram. But I do think it was luck. I thank my imaging center for that. I will say since 2012 I do think they don't push for ultrasounds etc. like the used to. I'm glad your doing well. Thank goodness considering how long you probably had the cancer before it was diagnosed. Good for you for finding the lump both times.

LilyY

Kleenie,

Please pay attention to the itching on your health breast. My left breast had been itching for one month in last December and I went to see my primary care but she didn't send me to do mammogram instead she prescribed me some medicines. My left breast was diagnosed with PILC during routing mammogram in this July.

Kleenie

Lily may ask how big yourPILC is? I just had a mammogram in June and that didn’t show anything except that my breasts are dense. Which is why I pushed for an MRI which I’m having December 12th. Did your itching go away at all? I never realized itchy could be a symptom. Did you have any other symptoms? What treatment are you or did you have? I hope your doing well

LilyY

Kleenie,

My tumor size is 2.3 cm. When I saw my primary care for the itchiness of left breast last December, she thought it might be caused by the indoor dryness of the winter. I put some medicine on the breast but the itchiness took very long to disappear. Since I only had itchiness on the left breast I doubted the explanation of my primary care. I had routing mammogramannually but the technicians didn't find anything until this July. However my breasts are dense on all mammogram reports and my doctor told me dense breast and ILC are the factors for routing mammogram didn't find my tumor in the past. I had seen three MOs in October and they recommended different treatment plans. I am taking Tamoxifen now but I might take the aggressive treatment plan since I am very healthy except this ILC.

Kleenie

Lily, thanks for answering my questions. My itchiness seems to have gone away so maybe it was just dry skin. I'll be happy once I have the MRI in December to put my mind at ease. Best of luck with everything.

Anonymous

Kleenie, peace of mind is EVERYTHING. It's hell getting to that place, and for me I lose it after a while (usually just before I go for my 6 month check up) but at least I know there is less liklihood of something dangerous lurking in my breasts, since breast tissue (what we could get) is gone.

My oncologist told me that if it came back, it most likely will show up somewhere else in my body. I've also read that ILC seems to come back more in the soft tissues, not bones, but I can't verify. Anyway, my MO also gives me 6 month shots of Prolia--I have a bit of mild osteopenia that normally I wouldn't treat with drugs like this, but the added benefit of Prolia is that it appears to protect those who are at higher risk of recurrence, like I am, from a bone metastasis.

No one but those of us who are going or have gone through this can understand what we have to live with after a dx of b.c. of any kind. It's a daily dance for me to try to avoid being hypervigilant about my health, yet protect my health at the same time.

Optimist52

Kleenie, hope you are doing ok. Yes the itchiness was a symptom for me with my second diagnosis. Looking back, I can't believe how long I put up with it! I don't know if it's more likely to occur with ILC rather than IDC. Most people don't have it. I suppose it doesn't seem so concerning as a lump or dimple or other symptoms. I notice that many women on this forum are still getting breast MRIs and there isn't discussion about the risks of gadolinium. Here is a link to a website that my breast surgeon (who has a PhD in lobular and gastric cancer) referred me:

https://gadoliniumtoxicity.com

momand2kids

Hi

I am 9 years out--- in the beginning I had a mammo and an MRI every year. a few years ago I suggested that we move to an annual mammo and an MRI every other year. My ILC was not discovered in a mammo, so I knew I would have to have MRI's-but my ILC was so slow growing, I figured that I could go every other year. Just had my MRI last week and all was clear!!! This schedule feels right to me--- and I am grateful I can do it. Best of luck!