We are 196,348 members in 81 forums discussing 144,710 topics.

Help with Abbreviations

All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: MRI

Topic: MRI

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Nov 13, 2017 08:11AM

Kleenie wrote:

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.

Dx 11/16/2012, ILC, <1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/29/2012 Lumpectomy: Left Hormonal Therapy 4/14/2013 Radiation Therapy Breast
Log in to post a reply

Page 1 of 1 (11 results)

Posts 1 - 11 (11 total)

Log in to post a reply

Nov 13, 2017 04:06PM beach2beach wrote:

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

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 14, 2017 06:15AM Kleenie wrote:

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.

Dx 11/16/2012, ILC, <1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/29/2012 Lumpectomy: Left Hormonal Therapy 4/14/2013 Radiation Therapy Breast
Log in to post a reply

Nov 14, 2017 08:51PM - edited Nov 14, 2017 08:52PM by 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.

Dx 10/2015, LCIS/DCIS/ILC/IDC, Right, 1cm, Stage IB, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Nov 14, 2017 09:38PM Optimist52 wrote:

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.

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)
Log in to post a reply

Nov 15, 2017 05:44AM Kleenie wrote:

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.


Dx 11/16/2012, ILC, <1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/29/2012 Lumpectomy: Left Hormonal Therapy 4/14/2013 Radiation Therapy Breast
Log in to post a reply

Nov 15, 2017 08:44AM claireinaz wrote:

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.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
Log in to post a reply

Nov 15, 2017 11:11AM Kleenie wrote:

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.

Dx 11/16/2012, ILC, <1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/29/2012 Lumpectomy: Left Hormonal Therapy 4/14/2013 Radiation Therapy Breast
Log in to post a reply

Nov 16, 2017 07:08PM Optimist52 wrote:

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.

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)
Log in to post a reply

14 hours ago Kleenie wrote:

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.

Dx 11/16/2012, ILC, <1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/29/2012 Lumpectomy: Left Hormonal Therapy 4/14/2013 Radiation Therapy Breast
Log in to post a reply

11 hours ago LilyY wrote:

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.

Log in to post a reply

6 hours ago Kleenie wrote:

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

Dx 11/16/2012, ILC, <1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/29/2012 Lumpectomy: Left Hormonal Therapy 4/14/2013 Radiation Therapy Breast

Page 1 of 1 (11 results)