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No additional testing / No MRI scheduled, is this normal?

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mumuriri
mumuriri Member Posts: 26

Background: annual mammo found 11mm lump deep in breast, core biopsy indicates IDC + some DCIS.

I went in for my initial surgical consult at Dana Farber today. I was told because of the probable staging (1) that I would not need to be tested for mets. I was sent to genetic testing only.

Oncotype is after surgery, she recommended lumpectomy + radiation, and that chemo would depend on post-surgery results, oncotype and SNLB).

Is it normal not to get an MRI or any other scans after a cancer-positive biopsy? When I had my initial consult with a different hospital they had me scheduled for an MRI right away (canceled because I swapped care to Dana Farber). I'm worried I'm getting underdiagnosed/possibly undertreated, if they are only taking my annual mammogram + followup mammogram to determine if there's nothing else in both breasts.

Doctor said because it was so small/staging early that I would not need any scanning for possible metastasis, but isn't MRI supposed to catch stuff that mammograms may not show? I'm scared and paranoid that my one/both breasts might have DCIS or tumors too small to show on mammograms.

Comments

  • meow13
    meow13 Member Posts: 1,363
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    I would insist on an mri especially if you have dense breast tissue. I had 2 small lesions and the MRI helped enforce that belief before I had surgery a simply mastectomy. Later I had DIEP reconstruction.

  • quietgirl
    quietgirl Member Posts: 165
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    If you have been told you have dense breasts then I agree an MRI is a good idea but in other cases it seems to be a mixed bag in terms of whether it is helpful or not. At least one study https://www.breastcancer.org/research-news/20100211b suggest that MRI don't decrease the need for additional surgery and sometimes leads to “over treatment “. Then again that's study is 12 years old so you can take it for what it's worth.

    If you would really like an MRI then by all means ask for one. I'm a bigadvocate of having peace of mind. Not that I think someone should have a bunch of unnecessary tests just to have them or to deal with what are really anxiety issues BUT it's not as you are asking for a test that is never done for women in your situation. in full disclosure I did not have an MRI done before my lumpectomy. The surgeon that the radiologist wanted to refer me to initially wanted to do one even though the radiologist didn't feel it was necessary and the surgeon was also fully booked so the wait with her would have been several additional weeks. So the decision was made to go with a different surgeon and no MRI was done. But again the fact I don't have dense breast was a factor in their decision. But I'm pretty sure if I had asked for one, they would have

  • cookie54
    cookie54 Member Posts: 662
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    Agree, I would push for an MR also . If there is any additional suspicious areas of course you would want them to be biopsied prior to lumpectomy. Hopefully there is nothing else but if there is that may change the type of surgery that is done. I understand not to scan for mets as it is early stage but breast MR is warranted as far as I'm concerned. We all have to be our on advocates! Best wishes, keep us posted.

  • kaynotrealname
    kaynotrealname Member Posts: 369
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    They didn't do an MRI on me either but the reason is because I asked for a double mastectomy. If I had done a lumpectomy they would have for both breasts. The reasoning behind that is to get an idea of everything they might need to remove. A mammogram and an ultrasound for instance is notoriously inaccurate in estimating size of tumor. You don't want to go in expecting a 15 ml tumor and then find out it's 30 ml. That could effect your accuracy with margins, maybe you miss some of it, etc. My hospital is a top cancer hospital also by the way so I'm not sure why you aren't immediately put in for MRI if a lumpectomy is what you want. I thought it was just standard. Anyway yeah I'd ask for one unless they give you a really valid reason for not doing it. And them thinking you are early stage doesn't seem to be a good valid reason. Now you not having dense tissue might be a good reason. Without that their view of your breast might be good enough with just a mammogram and an ultrasound to go right on ahead with surgery. I had dense breast tissue so they knew they would need another look at me if I wanted a lumpectomy.

  • maggie15
    maggie15 Member Posts: 858
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    I, too, never had an MRI. I was initially diagnosed at my local rural hospital but ended up travelling to that other center of excellence in Boston because the hospital near me is rated in the lowest 10% for safety in the USA. My biopsy slides, mammograms and ultrasound were sent ahead. I was initially diagnosed with 1.5 cm of DCIS. The second path report on the biopsy slides saw 2 cm of IDC along with the DCIS, and the new mammogram and ultrasound got the size of my tumor within 1 mm, twice the size I had been told. I peeked at the images during testing and could see a huge difference because of the equipment being used (state-of-the-art vs. old.) My breasts are not dense, but I figure that lack of cancer-specific experience and old machines were the problem. I imagine that Dana Farber has excellent imaging equipment. Radiation is meant to wipe out anything local that was not seen and tamoxifen/AIs help prevent a recurrence. Ask your doctor for a more specific explanation of her reasoning.

  • tinat
    tinat Member Posts: 2,235
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    I also agree. I believe that listening to my gut and pushing for an MRI is responsible for how well I've done so far on this journey. I was diagnosed 11 years ago after an amazing surgeon was able to get insurance approval for a "dense breast" MRI. I had no palpable lumps, no family history, and no lesions on mammogram. But, I'd had a prior biopsy of ADH. 3D mammography was not available then and my mammograms always read "No lesions seen, but dense breast tissue could obscure abnormalities". I ended up having five suspicious lesions on the MRI which were all biopsied. I was diagnosed with ILC and DCIS and had a double mastectomy. Due to lobular CA often being multifocal there were also multiple very early lobular lesions found at pathology that didn't show on any imaging. I was diagnosed very early and my surgeon said it would have likely taken at least five years before the lobular tumor would have shown up on mammography. Sorry for the long story, I just get a little fired up when someone can't have access to an MRI. Best wishes to you!

  • ubershop7
    ubershop7 Member Posts: 32
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    Yes that is normal to not have mri or full body cat scan if they think early cancer. Trust your doctors

  • tinat
    tinat Member Posts: 2,235
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    As I wrote, my diagnosis was 11 years ago and 3D mammography was not available then. Hopefully, it has made a difference for those with very dense breast tissue. But, to my knowledge it is still not available everywhere. Perhaps improvement in mammography technology (like 3D) has made MRIs less necessary. I hope that's the case, especially for people with multiple tumors.

  • melbo
    melbo Member Posts: 266
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    For what it’s worth mysurgical oncologist initially ordered an MRI after my stage 2 diagnosis, but my insurance wouldn’t cover it unless I was staged at stage 3. I asked my medical oncologist because I was ready to go to war with my insurance if necessary, but he didn’t think I needed it, so I let it go. My insurance actually ended up being really good for almost everything else, so I don’t think it was (just) them denying for denials sake.

  • sarahnh
    sarahnh Member Posts: 105
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    I think it's great that you are thinking about all this, and you should definitely not feel shy about mentioning it to your surgeon.

    My understanding is, MRIs are given when the benefits outweigh the risks. Breast MRI requires IV gadolinium contrast, for which there are some risks. Also, MRIs tend to see lots of "false positives", which then require more procedures.

    But who makes that risk/benefit calculation? It is different for each case, and also depends on the personal values of the patient. I feel the decision should be made by the dr and patient together, instead of just being dictated to the patient.

    I had to have a couple MRIs because of my type of cancer. For me, they didn't show anything dangerous, other than what the mammogram and ultrasound already showed.

    But the MRIs both ended up showing a lot of additional "suspicious" stuff which all turned out to be false positives -- so I had to have a bunch of useless invasive tests: An MRI-guided vacuum biopsy (unpleasant, not to mention the double dose of gadolinium), ultrasound-guided core biopsy, a lymph node core biopsy, etc.

    I hope you will advocate for what you feel is right for yourself, and encourage your surgeon to have a dialog with you. I have been really surprised at how dictatorial healthcare can be, here on the East Coast, compared to growing up in the Midwest. Dana Farber, MSK, etc tend to be rigid and authoritarian, which I feel sometimes may leave them a bit behind other geographical areas. But I find it really difficult to stand up for myself, with doctors! Even though half my family is doctors!

    Sarah




  • brinkofeternity
    brinkofeternity Member Posts: 181
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    My MRI revealed a 2nd, smaller tumor that was in a different area on the same breast. This was significant as it changed my surgery from lumpectomy to mastectomy (one side only).

    Since my breasts are extremely dense, mammogram (3D or not) showed nothing even after core biopsy showed IDC and DCIS. Since your tumor was visible on mammogram I suppose that’s why they said no MRI? I’m at Dana Farber too and they had no problem with ordering an MRI for me. Perhaps also because my tumor was Grade 3.

    Since treatment I’ve had follow-up MRIs that showed false positives and I had to get a couple of biopsies which turned out benign, but still I would do it again to get peace of mind since mammogram doesn’t do anything for me.

  • mumuriri
    mumuriri Member Posts: 26
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    Hiya, just an update: It looks like my concerns were premature. DF finally got my imaging and had their radiology department do an analysis, and they unfortunately want me to come in for an MRI and additional mammogram (distortion in left breast, the person on phone said it could just be bad imaging or a fold in the skin or something similar, and 2 additional oval masses in the right (cancer) breast that could be cysts.) On the report, the radiologist recommendation is for additional screening but no biopsies, so I am hopeful. I guess I was just super impatient about getting stuff done, whereas my surgeon was simply waiting to see the (outside provider) original imaging before ordering anything further to be done.

    Thank you for your replies, I appreciate you all.

  • meow13
    meow13 Member Posts: 1,363
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    I had the MRI to confirm my 2 tumors, it did but there was also a suspicious area. The cancer board recommended a mastectomy rather than lumpectomy and radiation. In retrospect, the suspicious area turn out normal but having the mastectomy gave me a much better idea of the cancer and its spread, I could have had a lumpectomy after all. But my simple mastectomy was fixed with DIEP surgery, nice job. I am on 11th year no cancer.

  • brinkofeternity
    brinkofeternity Member Posts: 181
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    mumuriri that is great to hear! Definitely it’s hard to be patient before we get treated.

  • mumuriri
    mumuriri Member Posts: 26
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    Still waiting for a call from scheduling, but on the patient portal it looks like they scheduled me for Sept 1 MRI and mammogram (I'm surprised they booked it w/o asking about availability) --- that's 2 weeks from now, and 1 month from my biopsy diagnosis. Isn't that a really long time to be waiting to be treated? I don't even have surgery scheduled yet, and the first time (before my initial imagery got to the docs) they said it would be ~4 weeks to get surgery, so at least 6 weeks from now? Of course I'm scared the cancer is going to get bigger or spread to my lymph nodes in that time (I'm not on any drug therapy). The initial hospital the imaging center referred me to had me scheduled for an MRI a week after biopsy results, why is DF taking so much longer?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,749
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    mumuriri,

    I know the wait is anxiety provoking but it is not unusual nor should it effect your health in any way. Breast cancer is in general slow growing. Because I needed to have both surgeon and plastic surgeon coordinate schedules and OR availability, I ended up waiting 10 weeks . No one likes the waiting but please don’t worry about it effecting your health.

  • tinat
    tinat Member Posts: 2,235
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    I agree. There will be a lot of waiting for things to happen. I was told by both my oncologist and my breast surgeon that while the patient feels an urgent rush to "Get it out of me ASAP" there actually is plenty of time to gather all the information and to make the right and appropriate surgical and treatment decisions. I had to keep reminding myself to take it one day and one decision at a time. Hang in there!!!

  • jrnj
    jrnj Member Posts: 407
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    mumuriri, I think when they said no testing for Mets they meant full body pet scan. Insurance will only pay for that for stage iii. Breast mri should be done if cancer is confirmed. Mine showed LCIS much bigger than US and mammo never saw it. Changed recommendation from lumpectomy to mastectomy. I would be super stressed waiting that long but I guess they’re busy. I would pick a major cancer center over my local hospital if I had to do it all over again. Experience over convenience.

  • mumuriri
    mumuriri Member Posts: 26
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    Well, the biopsy results came in and it's DCIS in the suspicious area (same breast as my IDC mass) 3mm of calcifications/DCIS. The total area between the IDC mass and the DCIS mass is 4.2cm. I'm waiting to hear from my surgeon to see if this changes her opinion of surgery from lumpectomy to mastectomy, and any other therapy (was initially told no chemo, only lumpectomy + radiation).

    I'm so sad. Multifocal/multicentric BC is a totally different beast from one mass from what I'm reading. I had just gotten over being scared so much, and now I'm back to square one with the fear now of a much higher possible rate of recurrence and spread. I wish they had done scans much earlier, because it's 1.5 months since diagnosis and no surgery scheduled yet because of the delay in imaging/new biopsy.

  • kaynotrealname
    kaynotrealname Member Posts: 369
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    DCIS I don't think counts towards classification as a multifocal tumor. It's stage 0 breast cancer. If anything it makes your prognosis a little better believe it or not because IDC seems to have inhibited spread when DCIS is present. They don't know why exactly but a theory is that the DCIS makes the environment surrounding the IDC less hospitable for the IDC. Anyway that's what I read. It may change their minds on you getting a mastectomy versus a lumpectomy because the DCIS of course has to be removed and that's a lot of tissue. Plus, more of your breast obviously seems to be having issues so they may decide it's better to just remove it completely. But they may not. It definitely won't affect your chances of chemo. They'll just send the IDC one for oncotype scoring and go from there.

    Seriously though DCIS is no concern for further worry in regards to your long term prognosis. It may effect your surgery options but that's about it as far as everything I've read. Your oncologist will have all the answers I'm sure but don't worry needlessly. It wasn't IDC they found. That's a totally different beast. DCIS is fairly common when they find IDC. They thought I had some in fact and that's why I know so much about it. I researched endlessly and then my pathology confirmed that nope I didn't, it was just calcifications in benign tissue.