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mschaben
mschaben Member Posts: 87
in Breast Cancer #1

Hello everyone... I havent been on for awhile.  I do appreciate everyones responses when I do have concerns.  With all my appointments and runninig my children around to their activities I am so exhausted.  I know I have asked this question before but was wanting advice again on scanning.  I know my onc says the guidelines now days say that routine scanning after treatment isnt recommended because it won't increase your survival rate.  Well I completely disagree with that.  My cancer was high nuclear grade and was invasive and aggressive and had spread to my lymphnodes.  I have finished radiation and aggressive chemo but continue on herceptin til jan.  I am also on tomoxifen for ten years.  I still have final surgery for reconstruction after january.  I am still in physical therapy for my ROM in my right arm and also for core body strengthening.  I have experienced alot of side effects and difficulties during everything.  Alot of things have happened that are small percentages of happening.  I basically haven't been in the normal category of everything. So I argue with my dr all the time about why I can't have a PET scan or full body scan of some type after treatment is over to make sure everything I have gone through has worked.  My aunt is a prime example .. she was fighting breast cancer the same time I was but her treatments were done in July, they didn't do any scans and now she is fighting ovarian cancer.  So my gynecologist says he will order me a scan after my treatments are over because he understatnds what I am sayiing and doesn't take it lightly. Right now I have so many aches and pains and stuff that it scares me.  I did have a bone scan in August because of all my pain. I will have implants in, I have expanders now so how would I know if I have a recurrence and especially throughout my body.  They have never did a pet scan to make sure I don't have anyting else in my body.  Can anyone relate and how can I deal with the fear of not knowing.  I know I cant' let fear take over but that is easier said than done especially right now... Thank you for your time.  Hope everyone has a great day.

Mary

Comments

  • button2
    button2 Member Posts: 421
    #2
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    Hi Mary

    I remember you and I'm glad you are finished with the hard part of treatment. I think you are going to feel much better from now on. I think you should get some kind of scan. I had the same treatment as you (triple positive bc with chemo, surgery, rads, Herceptin) and I have been getting three CT scans every 6 months for 3 years now. I just did my last ones in Sept. They are upper thorax, lower thorax and abdominal area. The only thing not covered is my head. My oncologist told me that from now on I can get them every 12 months. One good thing about you not having had one up to now is that they DO pack a pretty heavy radiation punch, and that worries me for the future. Still, if you got one after your treatment, I think it would give you great peace of mind. Maybe the doctor is reluctant due to your insurance? (I live in Europe, so I am getting them free on our very good government health plan so it's easier for me.) In the meantime, I don't think you should let aches and pains scare you, that's no way to live being scared of recurrence all the time. I try to just wake up every day, joyful that I am still here with my husband and kids. Hugs, Anna

  • twnkltoz
    twnkltoz Member Posts: 169 Member
    #3
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    I don't blame you for wanting

    I don't blame you for wanting to be sure! I had a PET before chemo started and it did give me great peace of mind.

  • MrsBob
    MrsBob Member Posts: 77
    #4
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    Hi!
    I agree with you. It does

    Hi!

    I agree with you. It does give you peace of mind. I've had several CT scans this year alone. Having had mets in my lungs, spine and iliac bones I find it very reassuring when my scans come back clear (lungs) and stable (spine) especially after having new aches or pains. I would like to have a pet scan again (last one in 2013) but my Onc only does that after a new spot is found on a CT scan. And I also agree with not letting the fear take over. I have done that so many times and it was useless worry. Now I try to not worry until there's an actual reason to (easier said than done, I know :) 

    Take care :) (((hugs)))

    Missy

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #5
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    MrsBob said:

    Hi!
    I agree with you. It does

    Hi!

    I agree with you. It does give you peace of mind. I've had several CT scans this year alone. Having had mets in my lungs, spine and iliac bones I find it very reassuring when my scans come back clear (lungs) and stable (spine) especially after having new aches or pains. I would like to have a pet scan again (last one in 2013) but my Onc only does that after a new spot is found on a CT scan. And I also agree with not letting the fear take over. I have done that so many times and it was useless worry. Now I try to not worry until there's an actual reason to (easier said than done, I know :) 

    Take care :) (((hugs)))

    Missy

    sound ... advise given

    Boy,  you have been thru so much in a short period of time...  My thoughts and prayers go out to you.

    Hoping and praying for brighter days,

    Vicki Sam

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