checkup regime

susaloh
susaloh Member Posts: 103
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Like gandl in her thread "Should I follow doctor´s orders" I feel that I should make decisions as to how to follow on with my checkups in future.

So far, I see my gyn every three months, she palpates and looks at the scars and checks tumor markers. Every six months she also does an ultrasound of ovaries and uterus. At 6 months intervals I also get an extensive ultrasound of thorax and axilla at the university breast center.

Additionally, at the end of 2007, I had a bone scintigram and an x-ray of the lungs, fortunately all negative. At my last checkup appointment in early December 2008 I asked my gyn whether these scans should be repeated every year or what her plan was.  Well, she told me that if I insisted, she could order the scans but only to make me feel better, from a medical point of view she didn´t think they were necessary. She felt that the only thing that really made sense were the regular ultrasounds as described above which we should keep on going. Even tumor markers were rather taken out of habit than out of belief in their medical merit.

I told her about my doubts with regard to ILC and ultrasound - why would metastasis be spotted this way, if the primary tumor couldn´t be spotted by ultrasound just 5 months before it turned into a solid 10 cm size! Shouldn´t one rather aim at doing an MRI instead, which is known to detect ILC better than any other imaging technique? "Well", she said, "but where do you want to start looking?", especially as ILC is known to mestatasize to unusual places? Would I want to have a "full-body" MRI? She wasn´t even sure whether this was possible and whether she could prescribe it (meaning, whether insurance would pay for it). Anyway, she said that I should talk about this to my radiologist next time I see her. But this appointment is only in September and I would like to know what I want before that!

That´s why I would like to hear your opinions on this issue. Should I really go for MRIs even if I have to pay for them myself? Or should I go for bone scans and x-rays for peace of mind, even if I believe, that ILC metastasis will probably not be spotted that way? Or should I follow her advice and just do the regime she recommends and wait and see? What kind of checkup regime (is this the correct term in English?) do you get, and are you happy with it? 

Love and regards from Germany to all of you!

Susaloh

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  • wallycat
    wallycat Member Posts: 3,227
    edited January 2009

    I asked my onco the best plan and he says a lot depends on your pathology report.  

    I will be 2  years in April (official dx w/biopsy, tho I knew in my heart and body in November of 2006).

    My surgeon was ready to do an MRI this year and when I arrived, decided nothing necessary (I have had a bilateral and no reconstruction).  My onco had said at 2 years and 5 years, PET scans are typically done, but he doesn't feel I really need to do it at my 2 year mark.

    I confess it is a double-edged sword---I want to know, but at the same time, I don't really.  My onco said many tests show false positives; this means more testing, more stress and for not really a good reason.

    I did have an Ultrasound in October after almost 1-1/2 years on tamoxifen and it was unremarkable.

    I had a real "GUT" feel about my cancer and my docs think that if I had a feeling something was wrong, they would look right away...

    Maybe I am niave, but I am doing as little testing as possible.

    My onco said that 6 months of waiting one way or the other has little effect on morbidity/mortality, so I'm holding off on as many tests as I can.

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  • Gitane
    Gitane Member Posts: 1,885
    edited January 2009

    You should probably do whatever gives you the information you need to be at peace, or as much peace as anybody can have with this.  I will tell you what I am doing, but I don't necessarily recommend it as good or bad.  My oncologist does tumor markers, CA 15-3, along with my blood work every 3 months.  He does not do scans.  I told him I do not want to know the results of the tumor markers.   I feel this way because I don't feel knowing about my relapse any earlier than I have to will make any difference in my case.  I am on Femara and I get Zometa every 6 months for prevention of mets and bone loss.

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  • susaloh
    susaloh Member Posts: 103
    edited January 2009

    Dear Wallycat, dear Gitane,

    thanks for replying! I wrote the same question yesterday in my German board and got similar answers - it´s quite fascinating to think that we are so far apart and do get more or less the same treatment - the International Guideline business seems to work!

    I guess my gyn is already doing more than she has to, so it´s probably allright.

    But one thing you said, Wallycat, I need to comment on: I used to be a big believer in gut feelings, but I had to learn, that they can be such an incredible illusion! By the way my son just writes an essay about "gut decisions" for school, so we talked about this in the family. Apparently, our gut feelings are really based on things we have experienced and learned in our lives. And at my diagnosis, my gut feeling abandoned me completely, and I will never trust it again. Let me tell you why: There was an obvious, tiny, lump, which was checked regularly and thoroughly by my doctor, so I got the impression, that he was a knowledgeable and thorough doctor whom I could trust. But while I was seeing him every 6 weeks because of this tiny lump, which eventually disappeared, my whole breast hardened but he refused to follow up on that and said, I see you every 6 weeks and there was nothing 3 months ago - and a tumor can´t grow within a few weeks to such a size, so it MUST be something else. He even talked about cancer hysteria and by the way, my mammogram had been clear. Well, the way these things linked into each other completely killed my gut feeling - I simply believed what he said, I ran about with a huge tumor filling my whole breast and didn´t have a single doubt of it beeing "something else"!! I felt perfectly healthy while the tumor was 10x9 cm big and had already gone into all the lymph nodes!!!

    Until those days I was convinced I was a well informed and critical person, I even thought I knew more than the average woman about Breast cancer and which signs had to be watched, etc. I still feel ashamed thinking about this part of the whole story, how could I be so stupid? Only excuse "I was very busy at the time in my job and in private life" doesn´t really count.... To be honest, I have made it a habit to consciously make myself think once per year about my situation during the quiet Christmas vaccation because I know now that at the time I didn´t take my time to really think things over....and my gut feeling never stirred....On Monday, it´s back to work and this will be out of my mind....Thanks anyway, it is good to see that everybody else is in the same situation!

    Regards! Susaloh

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  • marshakb
    marshakb Member Posts: 1,664
    edited January 2009

    I agree Susaloh, my gut reaction was pinched sciatic nerve NOT mets to the femur.  Honestly I knew in my gut it was not cancer.  Hugs, Marsha

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2009

    Susaloh ~  Your comments on gut feelings really struck a cord with me!  I had a lump in my breast that I could feel for about 2 years.  But it felt moveable, and seemed to lessen when I didn't drink coffee, so even though I often checked it to see if it was still here, I kept telling myself it was hormone related.  My primary doctor couldn't feel it and nothing showed up on mammogram.  But because it was at 12:00, I sometimes had a gut feeling that maybe it wasn't even in the mammo imaging area (never asked), or maybe I should ask for an ultrasound (never did).  Like you, I've asked myself many times why I didn't follow that gut feeling, even if it wasn't alarming, and why I was lulled into believing all was okay when it wasn't.  As you said, partly busyness, partly not wanting to act like a hypocondriac when I assumed the doctors were doing their job, but also probably somewhat denial that it could happen to me.    Deanna 

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  • wallycat
    wallycat Member Posts: 3,227
    edited January 2009

    I don't think we should leave our health to a "gut feel" and am sorry if it came out that that is all I rely on.  I consider myself fairly in tune with my body and how it functions.  If something is not right, I investigate it.  I still go to my surgeon and oncologist regularly, I simply meant that scans or other radiation type stuff I am not eager to have done, especially because my mammo failed me.

    I will just retell my story quickly here for future reference.  I had a really weird boob dream in November of 2006.  I usually had my mammograms done in November but there were some new regulations between the cancer association and the physician's association. Since age 40, my mammos had been fine, so I thought I would be 50 in May and would just post-pone (per the physician's association new guidelines) my mammo to May.  

    The second night, I had the same bolt out of my sleep boob dream.  I thought it was all hormones (and this dream was not about cancer, just boobs..which I normally do not dream about).  When the dream happened the THIRD night, I rolled over and told my husband I wondered it his were an omen to do a self exam.  When I did the self exam, both breasts felt exactly the same (in hind-sight, my surgeon said he felt nothing and even the scans looked normal).  Still, when I put my hand over my right breast in the inner/upper quadrant, I had a very odd feeling ...

    So I scheduled my mammo in January and the palpate and said it was fine.  The mammogram was perfectly clean and fine and unchanged...and I can go home.  But I INSISTED on an ultrasound explaining I just wasn't comfortable without further checking.  This is what I mean about gut feel...I can't explain how I knew something was wrong, but I persued it.  If it were nothing, I'd rather feel silly than miss something.

    An ultrasound showed a tiny, tiny shadow which didn't look like anything but the radiologist insisted we go ahead with the MRI.  The MRI picked up an area of highlight where my gut told me something was off....

    I was told to go back for an ultrasound to do the biopsy, but the second ultrasound found nothing.  Not the highlighted area from the MRI and the tiny shadow was gone.  Back to the MRI for another scan and a needle guided biopsy.  My radiologist and I both looked at my scans and she was confidant it would be nothing; I looked at it and told her she would be calling me back.

    She insisted it would be nothing; 9mm and not spiculated....3% chance if anything that it might be cancer.   Four days later she cried with the news.

    My surgeon also told me my MRI would be 98% accurate and I told him my gut said otherwise...He didn't believe me but after hearing how I found my own cancer he said maybe I should just listen to you.  Sure enough, the 9mm tumor turned out to be double in size...1.8cm.

    I'm not saying we always know, and I will not refuse a test a doctor thinks is necessary, but I will also not let a doctor tell me NOT to get something if  I feel strongly that something is out of whack.

    Best to you all!

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  • marshakb
    marshakb Member Posts: 1,664
    edited January 2009

    Wally, I remember your story well.  Your gut feeling saved your life!  I have a friend here on the boards who after being dx'd felt in her gut that something was not right in her hip area.  ALL her doctors insisted mets to not go to soft tissue areas and pretty much brushed her off.  Her gut said otherwise and she kept at them.  Sure enough, she had mets there and also in liver, lung and bones.  This is not a lobular cancer but just goes to show that gut reaction does come into play!!! 

    My response above was not to downplay gut reaction.  I have heard stories both ways.  Bottom line, even if just for peace of mind, check out anything you feel isn't right, no matter what the medical professionals have to say. 

    You have been a great support to all, well read and well educated on ILC.  Thank you for that!  Marsha

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  • karen1956
    karen1956 Member Posts: 6,503
    edited January 2009

    My onc does  not do any scans - only if the patient is adament about having them - or if there is an indication that warrents it.  I am still on a 3 month schedule.  He does a physical, takes a very detailed Hx asking lots of questions and does blood work including tumor markers.  I am happy to not have the scans.  I think after 3 years I move to every 6 months and in some ways I am good with that and others scared. After year 2 my BS only sees you annual unless you want to stay on 6 month schedule.  Of course they both say call if have any concerns.

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