No scans unless sx?

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elmcity69
elmcity69 Member Posts: 998
edited June 2014 in Stage III Breast Cancer

Hey ladies,

Met my new oncologist today. He's okay - clearly smart, straightforward (maybe more than I like), but I don't feel that instant kindred spirit I felt with my first guy. Anyway, it was all fairly routine except when I asked about yearly scans, he says he doesn't do ANY unless the patient is symptomatic. I asked how that could make sense, since finding something small must be easier to treat than something bigger, but he insisted that it was the treatment that matters, not timeframe. WTF? My first onc did yearly PET scans, although no tumor marker tests, etc.

What do you all think? And now I read about this circulating tumor cell test - should I ask for it?

And: also shot down Metformin. Vitamin D issue: "just take 1000 a day."

I want my first guy back. Maybe I should follow him to California!

xo

Janyce

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  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited September 2011

    My oncologist doesn't order scans unless there's symptoms. This bothered me at first, but now I'm glad...I really don't want to get wigged out every 6 months, worrying about something showing up. I wondered, too, about catching something while it's small. She said if a tumor is going to respond to treatment, it doesn't matter if it's 1 cm or 6 cm.

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  • faithfulheart
    faithfulheart Member Posts: 544
    edited September 2011

    Hey Sweeti,

    My onc. has the exact same protocal, I think it's pretty standered these days. Plus I think Pet scans can have alot of false pos. Give him a little time, he might grow on you. If not move on!!!

    Lets get that cell test though!!!!

    XOXO

    Steph

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  • SharonMH
    SharonMH Member Posts: 353
    edited September 2011

    Hi  My onc also does not do scans unless there are symptoms. Does anybody know if that CTC test is good? I have not heard of it before.  SharonH

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  • Letlet
    Letlet Member Posts: 1,053
    edited September 2011

    My onc has the same stance, won't do scans unless I'm symptomatic

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  • diana50
    diana50 Member Posts: 2,134
    edited September 2011

    no scans here either unless symptoms.  also, the scans and the stuff they put into your body isn't good for kidneys in the long run. 

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  • Suze35
    Suze35 Member Posts: 1,045
    edited September 2011

    I'm late stage with an aggressive cancer, so I get more scans than most. But, even given that, my onc is putting me on "symptoms scans" after my PET in September. Truly, unless you let symptoms go for a long time, finding them early has not shown to improve outcome in studies. And I agree with Celtic, scans are VERY stressful!



    I turned down the CTC. Same principle for me, if I show up with even a few CTCs, I'll be a wreck, lol.



    I hope you and your onc get a rapport!

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited September 2011

    I'm sorry Janyce, I know how you feel...I'm on my third oncologist, I wanted to follow my last one to Germany.  I've never felt that kindred spirit with my last one either, she got me when all my active tx was done.  If it makes you feel better none of my doc's do scans yearly either, watch for symptoms only.  It can be so frustrating, I know.

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  • caaclark
    caaclark Member Posts: 936
    edited September 2011

    No scan or even blood work for me either-unless there are symptoms.  I also wanted scans in the beginning but feel exactly as Celtic does.  And my docs say the same.  In fact, my oncologist sounds like Celtics but I am from NJ so that couldn't be.

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  • anna4969
    anna4969 Member Posts: 86
    edited September 2011

    No scans here either unless symptomatic.  Though I have had few issues and he has been more than willing to scan then.  But he, too, reminds me that scans are not good for our bodies either.  He doesn't want to cause cancer by scanning all the time and Diana50 is so right about the contrast dye in the scans damaging the kidneys.  Not good at all.  My onc is also of the same philosophy that earlier or smaller does not mean better outcome.  That one, however, I have a tough time believing or grasping. My uneducated knowledge still tells me that doesn't sound right but I have heard the very same thing from my onc where I live and my onc at MD Anderson.  So...there must be some proof of this to be true.  In regards to other things like my vitamin D levels and such, he usually sends me to another dr. who specializes in that area.  I have no problem with that. I figure one dr. can't be an expert in all areas. 

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  • Megadotz
    Megadotz Member Posts: 302
    edited September 2011

    FWIW,  this part of the  ASCO (American Sociery of Clinical Oncologist) guidelines for breast cancer follow up care.

    http://journeyforward.org/breast-cancer/breast-cancer-surveillance-patient-guide

    [edited to correct url} 

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

    elmcity.....my onc only does scans if sympomatic or if patient requests...which is fine by me.....he does blood work before each visit (tumor markers, cmp and cbc), then a good history and physical....

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  • elmcity69
    elmcity69 Member Posts: 998
    edited September 2011

    thanks, ladies. this helps tremendously. i now know this guy isn't alone in his thinking. and trust me: you know the horror of scanxiety, so i won't miss scans, if i keep with him. he isn't my first onc's successor, but another doctor in the practice, actually at a different office location.

    and on that note: i actually think i'm going to switch BACK to my first onc's successor. i've been asking around, and everyone says he is just like my original - same mellow, sweet manner. my husband is ready to leave me in the Home Depot parking lot over this (let's just say i like to process everything, endlessly), but my intuition is telling me to switch back. i  need to LOVE my docs or i have a verrry bad attitude.

    thanks for the opinions and experiences! i knew i could count on my BCO girls.

    xo

    janyce

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

    If the circulating cell test wasn't done in the begining, it will not be of use now. Circulating cells are just now starting to come out of the expermental stage.

    Tumor markers are an accepted way to follow you. They will go up before you have symptoms of advancement. If they are still down, than the pet would be normal.

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  • amlg1
    amlg1 Member Posts: 596
    edited September 2011

    I have to say,right now I am so greatful my onco,decided in May,on my visit,to ask me how I feel,which was great,i mentioned It's 2 years,then she asked if i get any headaches,and I answered my usuall once in a while (that I have had all my life)not even as many,she wanted me to get an MRI.Well low and behold I am told I have a pea size nodule,which they were going to do SRS,meantime the neurology onco.wants to test my spinal fluid,because of where the nodule is.Afew cells found,had ommaya port put in head ,and go for tx every 2 weeks.So far I am doing pretty good,tired but not complaining.My point is if you feel you need something more than you DR.is offering,womens intuition!!!I mentioned that ot my Dr.I told her it was her intuition to  make me go for MRI.because I really didn't and she insisted.My PET scan was clear,and blood good.

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  • K-Lo
    K-Lo Member Posts: 2,743
    edited September 2011

    Huh! This is news to me. And yet, my oncologist may be trending that way. She ordered three month CT's twice, then iasked for one in may, then she changed my chemo, so nothing in august. She talked about there being a lot of radiation, so I think she may be weaning me off the frequent scans. ( Of course, I'm stage IV, thank you for letting me invade and tell me if that makes all the difference. )



    Way to go, Janyce, get the oncologist you want!

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited September 2011

    I'm glad you feel better Jaynce....trust your gut, it's the Lord speaking to you (that's what my grandma use to say) so, switch dr's if you feel like it's the right thing.  I'm the sameway about mine, my DH told me once "your looking for a dr to be your best friend", I said "no, but I want to love them like my best friend and if I don't then good-bye"  Good luck!

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  • Rachel1
    Rachel1 Member Posts: 363
    edited September 2011

    NO scans either. My onc does CBC blood work but not tumor markers. It makes me nervous sometimes, but everything makes me nervous!!Undecided

    Rachel 

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  • sandilee
    sandilee Member Posts: 1,843
    edited September 2011

    My onc doesn't do scans unless one has symptoms, either.  i don't agree with this approach.  I would like to see them done at the two and five year mark at least. 

    I had none, and after 3 1/2 years I now have cancer throughout my spine and into my  bone marrow.  I have a collapsed vertebra caused by this cancer and now I am unable to walk normally or to drive.  Had they caught it earlier -say a year or so ago, they would have treated me earlier, and I wouldn't have a collapsed vertebra. 

     Btw, I had no real symptoms- just aches that felt like sore muscles from working out .My symptoms (pain and numbness) came after my broken bone, and then it was too late.

    My feeling is that the docs don't do scans because the insurance companies make it very hard on them. An MRI doesn't produce any radiation, and plenty shows up even without contrast.  But they're expensive, and many insurance companies make the docs do a doctor to doctor review with the insurance companies and argue their case before granting them permission.

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

    Sandilee,

    Sorry your's was not caught sooner. I agree you could have been better. When you were first dx, they didn't do tumor markers and for them to be accurate they have to go down during chemo. My markers rise before anything can be seen on films.

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited September 2011

    My onc doesn't believe in regular scans either basically because of the added radiation involved.  I for one could use just a bit of peace of mind every so often, but on the other hand the pre-test apprehension might stress me out too, I just don't know............

    Sharon

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  • KittyDog
    KittyDog Member Posts: 1,079
    edited September 2011

    My Dr. does yearly chest, abdominal cat scans and an all over bone scan once a year.  He also has me do a yearly bone density test.  I am still on the every three months schedule for visits and he has done blood work each visit too.  My scans are in Nov...and I am already having anxiety about them...I have an appointment this week and they will schedule them then.  I think I am going to see if they can do them in the end of Oct. 

    I agree find another Dr. if you are not comfortable.  

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