To scan or not to scan, that is my question

saint7632
saint7632 Member Posts: 8
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi all, I am a new ILC.  I got diagnosed on a fluke at a mammo, had u/s, more mammo scans, and then a needle core biopsy.  Yep, it was the dreaded "C". I got my butt to U of M hospital straight away and 21 days later had a bilateral mx, by choice, and was officially diagnosed with ILC, stage IA, onco score of 9 and an action plan to get on an AI med.  I felt pretty good about the timing and all of my choices, but I have had this nagging feeling that I don't feel like I am doing myself a service because during all this nobody ever did a CT scan of my chest or a pet scan of any part of my body.  My onco doc, whom a I really like, said it wasn't necessary since I did the bi-mx and my sentinal node biopsy was negative.  She said she would see me every 3 mths where they would only do tests if I was symptomatic.  Sorry, that didn't make me feel any better since I wasn't "symptomatic" to begin with.  I can't shake the feeling that I need to know if there is any other part of my body that has cancer in it (BC or otherwise).  I don't feel like I need to have a scan every three months, I just want to make sure that I am starting with a somewhat clean plate (so to speak). After much discussion, my doc said she would do a test even though she felt that it really wasn't necessary and could actually end up causing more emotional strain because they often find non-cancerous areas that need to be biopsied or tested additionally.  She really wants me to be able to move forward but wants to make sure I make an informed decision on this.  Since I started the AI meds in the last few weeks and now had to go off due to severe joint pain, my hormones are off the charts and so is my normally clear level head.  Any thoughts ladies?  Should I or shouldn't I get a scan?  Please give me your input.

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  • marial
    marial Member Posts: 255
    edited October 2011

    Although I had a later stage- 2a, I was told the same thing due to having clear nodes..I said I wanted a scan so at least I could know at the one point, I was clear In other areas..otherwise, I would feel like it was already everywhere..although thank goodness there were no signs of bc a where, I was diagnosed with an unrelated thyroid cancer that showed up in the petscan..very happy I insisted on the scan, as I had no symptoms

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  • saint7632
    saint7632 Member Posts: 8
    edited October 2011

    Marial, that is EXACTLY why I want the scans.  Physically, my body has been thru the ringer the last 4 years and I feel like I'm a prime candidate for cancer to attack.  I'm working on building my immune system, losing weight, becoming more active and doing everything I can to be on top, but I just can't shake this nagging feeling that theire is something else somewhere....thanks for the story.  Did you have a CT or PET scan?

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  • pejkug3
    pejkug3 Member Posts: 902
    edited October 2011
    bumping for you...

    I never had any scans - PET, CT, MRI or bone.  I'm stage II with node involvement.  I talked to my onc about it yesterday and he said there is nothing anywhere in my chart that suggests that there should be additional tests run.  It was reassuring in a way.

    I hope everything works out just perfectly for you!
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  • marial
    marial Member Posts: 255
    edited October 2011

    Saint - I had what they called a PET/CT scan..sounded like it was a pet scan with a ct overlay but not a detailed ct.. My doctor does run any tumor marker blood tests as she feels they are unreliable..another reason i wanted a scan.

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  • Romansma
    Romansma Member Posts: 1,515
    edited October 2011

    Hi Saint - I know how you feel......I felt that way too and I had a huge tumor and lot's of nodes positive.  I did finally get a scan, but they really are not that reliable with ILC.  You are very lucky that your tumor showed up on a mammo.....alot of them do not until they are quite large.  I've talked to my doc about scans, and they just are not as reliable as we'd like to think.  Try to keep your mind on getting healthy - nutrition and exercise and keep taking those AI's.  I wish you well!

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited October 2011

    My surgeon ordered a chest xray before surgery and also a CT scan and bone scan after surgery. My onc didn't order a brain MRI, but I managed to get an ENT doc to order one a year or so later. I think it's important to have baseline scans even if you are node negative.

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  • toomuch
    toomuch Member Posts: 901
    edited October 2011

    Saint - I had St 2 ILC with node involvement and my MO ordered no scans. At first I was upset and anxious but then I thought about the risks of the radiation from the scans themselves. And I realized that they only give you information for one day in time. I guess what I'm saying is that a negative scan would not decrease my fear of a recurrance and as your MO said, they can increase anxiety by picking up things that turn out to be nothing to worry about. But that's just me. Marial sure benefitted from the information she got from her PET scan. There's just not one right way. You have to do what makes you most comfortable.

    Is your MO going to change you to Tamoxifen? or another AI? There is some evidence that women with higher Vitamin D3 levels > 60 have less joint pain from AI's then those women with lower levels. If you don't already take Vit D3 you may want to talk to your MO about adding supplements. My Vit D3 level was only 19 when I was diagnosed and at last check it was 71. I have some morning stiffness from the AIs but it goes away quickly. I'm grateful that I haven't had significant joint pain and keep my fingers crossed that it doesn't develop.

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  • Racy
    Racy Member Posts: 2,651
    edited October 2011

    It is a vexed question, especially for ILC. I had isolated tumour cells in two nodes and I believe this is the reason that my surgeon ordered a CT and bone scans. I was the most terrified I have been the night before and day of the scans and praying constantly. Fortunately, my scans did not show any cancer but did show several benign spots in various organs which it was good to know about. In the end, the results gave me some piece of mind but only for a moment in time.



    I just had my follow up annual mammogram and ultrasound which were clear. I asked the surgeon about the concern of ILC maybe not showing on scans. He said that fortunately mine did and he did not think there was any need for me to have a MRI.



    I see my onc next week for my 3 month follow up since starting Femara. I don't think he does routine scans though I am having a bone density test. He has indicated in the past that if I report a symptom that concerns him he will order a scan.



    I intend to be vigilant and have regular checkups with my GP for breasts, pelvis and report any other changes promptly.



    It's a multi edged sword for us with scanxiety, prospects of false positives and false negatives, and questions about the value of early detection of distant recurrence.



    Ultimately, I need to have confidence in my doctors and for that confidence to be realised.

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited October 2011

    I'd like to add - no scans after that first lot. Seems to be standard practice here in Oz. My DH gets a CT scan every year (bowel cancer mets to lung) but same onc won't let me - different risk factors I guess.

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  • ma111
    ma111 Member Posts: 1,376
    edited October 2011

    I agree with your onc, however if it would make you feel better by all means get one. There is also studies out about too much radiation from scans. Then there is injected dye that isn't exactly the best thing for your kidneys.

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  • nanadeb
    nanadeb Member Posts: 169
    edited October 2011

    I too wanted the scans done BEFORE I decided on the BMX

    I wanted to know just what I was dealing with. They didnt want to do them until later.Telling me no matter what Debbi....the breasts have to be done..We HAVE to take the cancer out. I got that...but insisted....they called me telling me they were all clear. Only to find out each Drs appointment after that they did indeed see spots on my thyroid . I was suppose to get that biopsied this past Monday after having a sono done to check more clearer...They still couldn't tell. I had to cancel as I was still so sick from my first chemo .

    I was also FINALLY told by my oncologist I also have spots on my lungs..that he is very concerned is cancer :( They are watching these thru scans every 2 months as I go thru chemo.

    I was so mad that this info was not told to me up front. I felt so deceived. I am dealing with it now...but it was hard to get this in bits and pieces. I also..like you have been very ill for years...and just knew there may be more going on then JUST breast cancer.Demand the scan...and the truth...Get a copy of the report. They were very nice about giving me mine once I remembered to ask...NOW I as for a copy of EVERYTHING.

    DebbiMy blog ~http://atoosassygal.blogspot.com/

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  • LoriL
    LoriL Member Posts: 185
    edited October 2011

    Tricia,

    I know exactly how you are feeling. Even though my SNB was negative, I needed to know whether or not there was any obvious cancer in other parts of my body. We all know that it can spread through the bloodstream, so negative nodes are not completely reassuring. Without me even sharing my fears with him, my Oncologist ordered a chest XRay, bone scan and CT scan of my abdomen and pelvis. All negative. Now I'm wishing they would have checked my brain, too, as I'm so forgetful lately. :-) But, I'm sure that is just age....

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited October 2011

    Lori - my onc didn't check the brain either. I was seeing an ENT for another issue and he wanted to do a CT scan to check for degradation of the bones in the ear and I asked for an MRI instead as I didn't want to be exposed to more radiation, he agreed, so now I have a base line. Haven't told my onc about it yet, but will next week when I see him.

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  • catbill
    catbill Member Posts: 326
    edited October 2011

    You can see my stats below...same treatment I got...no scans done. 

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  • saint7632
    saint7632 Member Posts: 8
    edited October 2011

    Well everyone I am so grateful for your thoughts and experiences you have shared. My MO officed called late last week to say that even though they didnt feel I needed it, they felt my piece of mind was an important part of my well-being going forward so they said they would order a bone scan and Ct of chest, ab and pelvis. I was very relieved to hear this. I decided at that time that I needed to make sure I was doing tests for the right reasons, so I set up a therapy session for this week. Also, I met with my longtime ob/gyn to get her take as she is very familiar with my medical issues prior to cancer. I do feel it is very important for me to be involved in decision making, but I want to balance that with the incredible knowledge my MO has. I will make a decision later this week. Again, thanks for sharing - I will post a follow up for those who are interested.

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited October 2011

    Tricia - good news - you will feel better afterwards!!

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  • saint7632
    saint7632 Member Posts: 8
    edited October 2011

    Hi all. Just wanted to update you. Decided to get a second opinion from another Mo - which I did on the 24th....wish I would've done that weeks ago! She reviewed all my records (past and present) and without me even asking decided I needed a bone scan due to high amount of bone pain. She is also testing blood for arthritis and many other things. She hugged me often, won my confidence and gave me back my life! I really like her and so did my hubby. Started me on femura the next day and she's working with my PCP to switch some of my meds that have side effects of bone pain (i never thought of that and neither did my last MO! Bone scan tomorrow am. I'm a little nervous, but feel like I am finally moving past some of the bad stuff! Thank you everyone for helping me along! (((hugs)))

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  • mary625
    mary625 Member Posts: 1,056
    edited October 2011

    I had a bone scan as part of my work-up, and please be comforted to know that it is one of the easier procedures.  The injection was just like any type of IV, and I did not feel the injected material like when they inject for CAT scan.  Then you have a few hours off (may be 1-3, differs I think) and come back for the scan.  The scanner is a camera, and because it's not an x-ray, the technician stayed in the room throughout with me.  The full body will take about 45 minutes to scan.  Breaks can be taken if needed.  In fact, the technician told me to take one because she could see my bladder was filling up while eliminating the injection.  I know what's hardest is waiting for the results.  My results were clean for cancer, but I found out that I have degenerative joint disease, a/k/a arthritis. Since I currently have no pain, I'll worry about that next year!  I agree that you will feel better with this behind you.  I hope you don't have to wait long for results and that the results are good.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited October 2011

    The only scans I've had done were at the time of Dx...onc does then if patient is symptomatic or asks for them....I'm happy to be scan free...don't need the added anxiety.....

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  • saint7632
    saint7632 Member Posts: 8
    edited October 2011

    Thank you Mary for your explanation of the bone scan it eased my mind. You were right, it was easy! I get the results of that and some bloodwork tomorrow and I have a feeling it is going to show some arthritis for me as well. Since switching to my new MO my quality of life has been so much better with much less stress. I think after the bone scan results I will be able to move on much easier! Update you all in the next few days :-)

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited October 2011

    Tricia - glad you had the scan - fingers crossed for clear results. Mine showed my spine was a mess (to quote my onc) - arthritis. The joys of aging.

    Sue

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  • helenmoore
    helenmoore Member Posts: 8
    edited November 2011

    I would say that you do go for a scan, its better to undergo it than to not.

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