Early Stage ILC Follow-Up - Lumpectomy

Kleenex
Kleenex Member Posts: 764
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I'm two years past my surgery, and I'm wondering what others are doing for follow-up. I am considering having a discussion with my oncologist regarding the "track" I've been on and making changes to that, but I wanted to hear from my fellow ILC sisters first.

I had a lumpectomy and radiation, and have been Tamoxified for 21 months. I have been having diagnostic digital mammograms of both sides every six months since my surgery. When I called to schedule an upcoming mammogram using the "prescription" from my oncologist, the scheduler at the facility that does my mammograms suggested that since we are not following anything specifically suspicious at this point - radiation changes are stable and my last two mammograms have been identical, with no areas of concern - that women often switch to annual mammgrams at this point. As my cancer was slow-growing and the pre-surgery MRI indicated that there was nothing else in there and my mammograms have been clear, I would LOVE to switch. We have a high-deductible insurance plan, so it's costing me many hundreds of dollars for these six-month mammograms, at which nothing is found. At my follow-up appointments, my oncologist always assures me that she's not expecting anything to show up any time soon - maybe 10 or 15 years out, given my cancer and treatments.

In addition, I have blood work done every six months. I did not have chemo, so we're not looking at blood counts, I don't think, and I have read in multiple places that early detection of possible mets via tumor markers is both not particularly accurate nor is it helpful. Frankly, I'm not totally sure WHAT they're doing with all of that blood - I usually have to call three weeks to a month later, and they say "everything is normal." This is another $300 worth of lab work and processing that I may not need to endure and pay for so frequently.

I know some women have yearly MRI's at their oncologist's recommendation and with the approval of their insurance. My doctor feels that these result in too many false positives and needless biopsies, and I am actually happy with the quality of the digital mammography at the facility I use.

What type of follow-up are you having if you had a lumpectomy for a low-grade, early stage ILC tumor?

Coleen

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Comments

  • momand2kids
    momand2kids Member Posts: 1,508
    edited September 2010
    • Coleen
    • I am almost 2  years out as well.  Early stage, slow growing.... I did have chemo and radiation and am now on Lupron and femara.


    Last year I had an annual mammogram and an MRI--- this year I am scheduled for a mammogram in November- and possibly an MRI in May-but my onc is really on the fence about the MRI--- lots of false positives, etc.  She and my surgeon have always been convinced that this will not come back, but who knows??? I will find out in our Nov meeting about the MRI--- but I could tell she was reluctant--

    In many ways, so am I--I would like to just move along but at the same time, my mammogram did not pick this up the last time, so I like the thought of an MRI---- and last year's was completely clean...... 

    I don't do tumor markers-my onc does not believe in them..... less is more it seems.

     hope that is helpful

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  • mymountain
    mymountain Member Posts: 184
    edited September 2010

    Hi Coleen,

    I have alternating Mammogram (single, as I had a mast) and MRI every 6 months.  I am also two years out, so I've had 2 MRIs and 2 mammos in addition to the ones around dx time.  My onc does no bloodwork, but I have the usual stuff done by my pcp yearly.  I was considering telling my bs (she's the one who orders the imaging)  that I would forego the MRI, b/c they stress me out, but I chickened out and took the script for my next one in Feb.

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited September 2010

    Hi Coleen,

    I had a lumpectomy (11/6/06) and radiation (Finished 2/07) followed by Tamoxifen for 5 years.  I have changed to getting mammograms once a year and I see my oncologist and radiation oncologist every 6 months.  I have blood tests done every 6 months and chest xrays once a year.  I don't know what they do with the blood other than tell me everything looks good.  I think they like to just touch base with us incase anything is bothering us.  Good luck with your treatments!

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  • Kleenex
    Kleenex Member Posts: 764
    edited September 2010

    Hi Nancy - When did you switch to the annual mammograms? And what are they doing with the chest x-rays? I see you and I have the same understanding about the mystery blood work. :) I haven't seen my radiation oncologist since I completed radiation and had perhaps a two week follow-up - perhaps this is because she's in the same "breast care center" as my oncologist?

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited September 2010

    Hi,  I switched to once a year mamms after I completed my 3rd year.  I guess they use the chest x-rays to see if I have tumors in my chest and lungs.  I really don't know why my Rad Onc still likes to see me so often but she is a super nice lady so I don't mind.  I would like to put all of the BC stuff behind me but I was told they all will keep a close eye on me until I reach the magic 10 year mark.  It seem like a long way off....2016.

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  • Seabee
    Seabee Member Posts: 557
    edited September 2010

    Coleen--I think the blood work is partly to assess the state of your immune system, because rads affect that as well as chemo. I'm now two years out and still have a low WBC, low platelets, and low auto somethings, though they seem to think this is no cause for alarm, and in fact my WBC is typically low normal or slightly below normal.

    I had one bilateral MRI and one unilateral Mammogram on the first follow up, On the second, six months later, they did a bilateral Mammo and found calcifications on the "good" side which had increased since the Mammo a year before. They biopsied it, and it turned out to be a benign fibroadenoma that had probably started shrinking and calcificating because of estrogen depletion. My hope is that there are no more of those around, because if there are, I can count on them wanting to do more unnecessary biopsies. MRI is not the only imaging technique that can get them worked up over nothing. Bummer.

    I have been seeing my BS, rad onc, and medical onc approximately every six months.

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  • MaureenA
    MaureenA Member Posts: 39
    edited September 2010

    Hi Coleen,

    It's been about 2.5 years since my surgery.  Like you I had ILC, lumpctomy and radiation, but I am older and taking Arimidex.  My oncologist recommends alternating manograms and MRI's every six months. If something on the mamogram looks suspcious, as it did this spring, he immediately orders an MRI.  Normally after two years, my oncologist schedules visits every six months, but I have had a couple of suspcious masses, including something on my lungs, so I continue on the every three months cycle for now.  My surgeon likes to see me twice a year to look at MRI/mamogram and my radiation oncologist once a year.

    My oncologist draws blood each time. Usually there's nothing remarkable, but last time my liver enzymes were elevated and had almost doubled since the previous blood draw so more follow-up.  Not sure what else they look at, but it's usually about $350 worth of lab fees.

    Sounds like you are in a good place; hope you are able to scale back your follow-up.  

    Your posts are great; I appreciate your insights.

    Maureen

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  • Kleenex
    Kleenex Member Posts: 764
    edited September 2010

    Maureen - Thank you for describing your follow-up and for your sweet comment. I am sorry they keep finding suspicious things that need to be checked - but it sounds like you are being watched carefully, which is good.

    I hope I am able to scale back, as well...

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  • Kleenex
    Kleenex Member Posts: 764
    edited September 2010

    Thanks to everyone who has posted their follow-up - this is very helpful.

    Seabee - I didn't remember that about the radiation potentially lowering my blood counts...but it's almost two years out from that...

    Part of my issue is that I am not fond of the oncology PA, who alternates visits with the oncologist. Love the actual oncologist. I fantasize about going to annual visits only with JUST the oncologist, and skipping the visits with the condescending PA. It'll never happen - I can see changing the mammogram schedule and possibly the blood work, but I'm thinking I'll still have to come in every six months...

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