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Topic: BS says no to MRI

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

Posted on: Jun 18, 2008 10:01PM

GrammyNancy wrote:

I was diag in Feb 2007, masectomy March 2007, 6 TAC, Herceptin for a year (will finish end of July) and arimidex for 5 years.  I went to my BS today for mamo (also had one in Dec) and was told that they will now do a mamo only once a year and a breast exam every 6 months.  I asked about a MRI and he said he doesn't do them unless mamo shows somehting.  Seems to me that most everyone with ILC alternate Mamo and MRI every 6 months....is this correct?

Should I be looking for a new BS?

Nancy

Dx 2/5/2007, ILC, 2cm, Stage IIB, Grade 3, 1/7 nodes, ER+/PR+, HER2+
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Jun 18, 2008 10:34PM LUVmy2girlZ wrote:

GrammyNancy~

This doesn't sound right...the usual follow up is...once a year on your "good breast" and an MRI six months after dx and then alternate.  I know my BS said, after NED then it goes to every year...but that is because I will have silicone...do you not have reconstruction ?  Maybe thats why ?

I was surprised I had a mammo once a year....every woman that does NOT have BC gets once a year, and according to stats are risks are greater.

Perhaps more will come along and give their follow-ups.

I am curious myself.

Much LUV

BRCA 1 & 2 neg. mx- 7 wks rads (35 rounds) LIVE LAUGH LUV... Dx 11/19/2007, DCIS, 5cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR-
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Jun 18, 2008 11:06PM Rovergirl wrote:

Mamo and ultrasound did not detect my ILC, a lymphnode biopsy did.  After the biopsy I had a MRI to determie the size and the extent of the cancer.  Often ILC is not detected by a mamo.  If you have a cancer that may not be detected by a mamo, why wouldn't you use an MRI for follow-up?  I'd ask my BS more questions. 

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Jun 18, 2008 11:36PM - edited Jun 18, 2008 11:37PM by wishiwere

Boy, what a dilemma in my mind too!  Mammo and US did NOT find the 2nd tumor, MRI did.  It was ILC.  IDC was the primary found first.  After chemo (2 months post) I found a lump, everyone could feel it, had mammo and US, but no MRI ordered.  That was April.  I'm supposed to be on a yearly mammo....digital type. 

I'm still feeling this thing and still worried and still not confident it's nothing, but.....like you..am not sure what to do! :(  I trust my BS, he's quick about test normally, but this isn't something he felt was needed.

wishiwere~ Path read stage 1C- 1st Primary was IDC w/DCIS 1.4 cm, ER/PR+ & HER2- Dx 9/21/2007, ILC, 1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Jun 19, 2008 01:29AM Gitane wrote:

I was told that cancer in the other breast may or may not be ILC like my first one was. I suppose the doctors just go back to the standard of care which is a mammogram. Since I had both breasts removed it doesn't apply to me, but if I hadn't I would insist on MRI. It is the only thing that would find lobular in most cases, that is before it becomes more advanced.

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Jun 19, 2008 08:42AM wallycat wrote:

If your breast surgeon doesn't want to prescribe an MRI, maybe your oncologist will.

I'd follow up with your onco and see what his feelings are about this.  See what follow up tests he recommends.

You can always find a doctor that thinks similarly to your game plan.

Good luck.

(P.s. If I had boobs, I was told 6 months mammo, 6 months MRI...which is why I opted for bilaterals).

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jun 19, 2008 10:00AM gracejon wrote:

breast surgeon never saw me after post op visit and oncologist said no to MRI because of cost.  My PCP ordered it and insurance didn't even require a pre authorization.  My PCP did discuss how uncertainy when thinking out loud about how often to order.  So far I had one done and have not brought up the issue again although it will be 2 years since the last one.

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Jun 19, 2008 10:54AM nash wrote:

I'm getting annual mammos and MRI's. Wallycat's right--mayber your onc will order an MRI. If not, then I'd shop around for a doc who will order one. I'm surprised that with your history of an HER+ ILC that the BS doesn't want to be more viligant.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Jun 19, 2008 10:57AM GrammyNancy wrote:

Thanks so much for your responses.  I have an appointment with the onc next week so I'll ask him his thoughts.  I'm pretty sure I could get my PCP to order one if all else fails.  Seems that the MRI is the standard of care...am I wrong?

Nancy

Dx 2/5/2007, ILC, 2cm, Stage IIB, Grade 3, 1/7 nodes, ER+/PR+, HER2+
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Jun 19, 2008 05:02PM nash wrote:

Well, actually, NCCN guidelines state that there is not enough evidence to recommend one way or the other regarding annual MRIs for women with a history of bc. The MRIs are just recommended for BRCA women and women who have a lifetime chance of over 25%, I think it is, for getting bc. Why they think women who have already had bc aren't at a high risk for a new primary or local recurrence is beyond me, but that's why not all docs do annual MRIs.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Jun 19, 2008 07:18PM Gitane wrote:

After my diagnosis I went back and read the reports on my previous mammos. They all said, in so many words, that because I had dense breasts the results weren't that reliable. The "medicalese" they used to say this went under my radar, and I sure wish I knew then what I know now, but we can't go back. Of course, nobody saw anything, nothing was biopsied and the rest is history.

I feel like any woman with dense breasts deserves MRIs. Even the best digital mammos miss bc too often. Women who have a history of bc, or bc in a close relative, should have MRIs, too. There are false positives, especially when someone who is not experienced at reading breast MRI is looking for bc. Women may not like the follow up procedures that go along with that, and I'm sure the insurance companies don't want to be paying for it. Still, women should be given the option of MRI, and in my opinion should demand it. As MRIs become more automated and the medical professionals get more training and become experienced, screening with MRIs for those who need it, hopefully, will become the standard of care.

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Jun 19, 2008 08:25PM PeggyDixon wrote:

Dear GrammyNancy......I had ILC in the left breast and had a mastectomy on that side in February 2006. I opted for a prophylactic mastectomy on the right in August 2007 so never did have an MRI. However, when I had the boob in place, MRI is what my oncologist was going to use every year or so, interspersed with thorough examinations. He was going to continue mammos too in case there was something other than ILC, but he certainly said that mammos were no good for me as far as finding ILC was concerned. Where I live MRIs are not that easy to get but he would have tried for one a year or second year. Good luck with your onc.

Peggy Dx 1/19/2006, ILC, Stage IIIC, ER+/PR+, HER2-
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Jun 19, 2008 08:25PM - edited Jun 19, 2008 08:26PM by PeggyDixon

This Post was deleted by PeggyDixon.
Peggy Dx 1/19/2006, ILC, Stage IIIC, ER+/PR+, HER2-
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Jun 19, 2008 08:43PM nagem wrote:

I ended up having bilateral mastectomies AFTER having chemo, radiation, Herceptin. But if I had continued to have boobs, I was slated for MRIs. My cancer didn't show up on mammo or ultrasound. Funny to see all those old reports with the now-ominous comments about density and calcification. I had no idea then that these were warning signs ...

nagem (underthestinkwoodtree.blogspot...) Dx 9/23/2005, ILC, 1cm, Stage IIA, Grade 3, 1/13 nodes, ER-/PR-, HER2+

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