ILC Surveillance

sgreenarch
sgreenarch Member Posts: 528
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi, All. Apologies if this is a repeat question.

Just went for my biannual check with my onc. She happens to be on sabbatical but she had a lovely substitute, a young doctor not long out of training. This was (thank God) a routine visit, mostly to talk about how I'm doing on Femara as I recently switched from tamoxifen. (Overall, OK.)

My routine re surveillance has been to get a mammogram/sonogram every December, and an MRI every June. He questioned this, asking why I need the mammogram at all since the MRI is super sensitive. I asked if there was anything one might see on a mammogram/US that an MRI might miss and he said, no. If anything the MRI shows too much, sometimes finding benign things that need biopsies (happened to me once already.) 

On the one hand I feel well taken care of; at least I'm being watched every 6 months. On the other hand, I suffer terribly before each of these scans, brings back all of the terrible feelings, and I get almost physically sick 2x a year. If it is sufficient, I wouldn't mind doing just a yearly MRI.

Would love to know what has been recommended to others with ILC?

Thanks! Shari

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Comments

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2013

    I was on the 6 month mammogram schedule, but at my visit last month I've been moved to the once a year mammogram. I don't get MRI's unless something is seen.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited June 2013

    Hi

    I am on mammogram and MRI too.  I have also wondered this. My onc and I had a conversation about planning for the 5 year mark (in the fall) and how often I would have MRI and/or mammogram.  I think I would rather the MRI..... she was talking about every other year--- so I don't know what we are going to settle on.  I would prefer only one test per year.... or, at one point we talked about having them both on the same day each year.   

    In some ways, I would like to just go back to mammogams.... I like to think, as I reach the 5 year mark, that my risk is reduced even though I know that it could come back at any time.... but I still like to think that!  So, it is nice to be under survelliance, but I agree, it can provoke anxiety. I have a rule about my tests--none can happen in the summer.... I love summer and I just cannot bear to have to have any tests during the summer--so now I am on a September-March schedule with PCP and gyn appointments in October and April.  Just a little gift to myself!

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  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2013

    A mammogram often does NOT show lobular cancer so my vote is MRI with contrast

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  • ck55
    ck55 Member Posts: 346
    edited June 2013

    I had a large (9 cm) ILC tumor which was only found after a small area of DCIS showed up on my yearly (which had been completely clear for the previous 18 years!) mammogram. I am now on alternating mammograms/MRI's every six months.



    I believe the advantage of the mammogram is that it shows DCIS which the MRI does not detect as well.



    Not sure where I heard this. Anyone else been told this?



    Cyndi

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited June 2013

    Cyndi

    I think you are right--mammograms seem to be best for DCIS.  One of the reasons (that I forgot because it has been so long) that I asked for annual MRI's was because my mammogram just 6 months before did not show anything.  Then 6  months later, there I was with an estimated 1.2 cm tumor, which became 2.5 cm post surgery. 

    So, what is so ironic, that allegedly ILC grows more slowly, but that mammogram missed everything.  I think I will be asking to continue those MRI's-- maybe every other year.  But I wonder if there will be a time when the insurance companies will not want to cover them......

    I will check this out in September when I meet with the onc with my regular long laundry list of questions.    But for now, I am just going to enjoy the summer...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2013

    My MO told me that US catches things that mammos don't and mammos catch things that US don't. However, with 5 "clear" and useless mammos that didn't catch a 2 c. tumor, I don't trust either, even in connection with each other. I insisted on an MRI at our last check up.  She wrote the orders, rather reluctantly, and then I had to fight with the radiology office since they insisted that my insurance requires a mammo first, and if something is seen, then an MRI is warranted. Since I already had a mammo last year in August they did my MRI (clear) in April without one, this time. 

    It's so screwed up. However, I'm getting a BMX/recon starting in two weeks with a nipple delay, so I hope I don't have to worry about this anymore.  Dense breasts coupled with an ILC dx isn't something I want to leave in the hands of mere technology- I simply don't trust the follow up that the medical folks want me to have. 

    Claire

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  • Givemestrength
    Givemestrength Member Posts: 11
    edited June 2013

    I hear you !

    I recently decided on a bmx w/recon as well After 3 lumpectomies to the right. The left was prophylactic MX

    because I also had dense breasts and didn't want to worry. I had lcis on the final path and it was never caught on mammo or ultrasound before my diagnosis. I had mri right before surgery.. I think women who are at high risk or are told that they have dense breasts should be able to have MRIs with insurance coverage..



    Good luck with surgery . I am half way to getting my new foobies.

    Be well.





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  • Momine
    Momine Member Posts: 7,859
    edited June 2013

    Giveme, same here. LCIS on path for the "prophylactic" side. Some docs have told me that it might never have developed into cancer, but if I had stage 3 ILC in the other one, do I really want to run that bet? Besides, they had not seen the LCIS on ANY imaging (mammo, MRI, CT, U/S).

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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2013

    I asked to have the MRI, but was told only if something was found. I wish there was some kind of general consensus on these things. The only good thing I can say is mine was very small when found, and solid.

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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2013

    I WISH I could get some sort of scan.  I had bilateral mx and was told there is no way to scan "breasts" that are not there.  PET scans are overkill and CT scans are overkill.  I was told to go by symptoms alone.  Lovely since I had no symptoms, no lump, nothing on mammogram or ultrasound that would have alerted anyone to anything anyway....

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited June 2013

    I hear you. No symptoms in my case either. No fam hx, nothing! Major shocker. Found on a bright sunny day on a routine mammogram, (with a second, 9mm growth found on an MRI) which is why, I am sure, these subsequent scans make me riddled with anxiety. I am convinced though, that anyone with ILC should be automatically entitled to a yearly MRI as almost all of us have stories of misses on mammograms/US, only to be finally told of findings via MRIs. And asking oncs doesnt always help as not every one agrees that a yearly mri is needed (!?!?!) I wish there was a standard protocol for screening for ILC so I wouldnt have to make this up, going with what feels most comprehensive just so I won't maybe miss something. Would love to skip the yearly mammogram if it's not needed. I didn't go to medical school!

    Maybe if we all ask our oncs this at out appts we can see if there is some kind of consensus.

    Have a nice day, ladies, shari

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  • debiee
    debiee Member Posts: 2
    edited July 2013

    Hello there.

    I was diagnosed wil lobular stage 3

    7 cm 2 nodules positive of 5

    But my treatment was so different as your

    4 rounds of cyclofosf and adrimicyn and 4 taxol 35 radiation treatments and now

    Tamoxifen .

    No more pet or MRI only dr regular checkup every 3 months.

    I am so worry .

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  • debiee
    debiee Member Posts: 2
    edited July 2013

    Good for you I am in the same boat but I was Lobular stage 3

    Not pet not MRI nothing because my double mastectomy .

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  • Momine
    Momine Member Posts: 7,859
    edited July 2013

    Wallycat, at the beginning, I thought that thing about only doing scans if there were symptoms to be a bit crazy. But now that I am further along, I can sort of see the sense in it. I have had "staging scans" 1 year post surgery and will have them again in October, which is the 2-year mark. If those are clean, we will drop to a chest X-ray and a liver ultrasound annually, unless there are symptoms of some kind.

    The thing is that even MRIs, CTs and PETs are limited in what they can detect. By the time anything is big enough to show on scans, chances are you will have some symptoms as well. It does sort of make sense to me, now, that they do not routinely scan people who had early stage cancers (mine was about as close to stage IV as you can get without actually being stage IV, so that is a little different).

    I do think doctors might make a bit more use of ultrasounds though. That is fairly non-invasive and can show quite a lot. An annual chest Xray also seems prudent to me, and is something that is cheap and fast, with minimal harm.

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