Is my Dr. crazy to not order follow up PET/CT scans?

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GSchmidt
GSchmidt Member Posts: 2
edited March 2014 in Breast Cancer #1
I am 33, and was diagnosed with IDC last October. Surgery (mastectomy) in November revealed it had spread to 6 of 16 lymph nodes, so between that info and size of tumor I was categorized as Stage III. Had 4 months of chemo, followed by 8 weeks radiation, and now am on tamoxifen for at least 5 years.
My question is: My oncologist (in Wash DC) is NOT recommending any follow-up PET/CT scans because he said the data shows that these scans do not help catch recurrence. He said that doctors in my area (a few hours outside the city, more rural area) are scan-happy and order them when they're not necessary. He said I should stick with 1-2 mammograms a year (on the remaining breast) and chest wall exams on the surgery site, and that's all that's needed.
Anyone have any advice or opinions? Seems like friends and aquaintances I know who live near me are ALL sent for follow up PET/CT scans. I'm not sure I'm comfortable with not having those tests done if they can help detect a problem in the future (I do plan to do the 1-2 mammograms a year and chest wall exams).
Thanks

Comments

  • mgm42
    mgm42 Member Posts: 491 Member
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    Asked Similar Question
    I asked a similar question a few weeks back and learned, basically, that what your doctor is telling you seems to be the prevailing medical opinion held by oncologists - that scans are not all that helpful. A thorough examination along with a mammogram if you still have breast tissue are what's needed for right now. C Abbot gave me very detailed and informative answer. I think the title of that post was "I'm Worried." Hang in there. Marilynn
  • Joycelouise
    Joycelouise Member Posts: 482
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    mgm42 said:

    Asked Similar Question
    I asked a similar question a few weeks back and learned, basically, that what your doctor is telling you seems to be the prevailing medical opinion held by oncologists - that scans are not all that helpful. A thorough examination along with a mammogram if you still have breast tissue are what's needed for right now. C Abbot gave me very detailed and informative answer. I think the title of that post was "I'm Worried." Hang in there. Marilynn

    I just want to add that I
    I just want to add that I think that there is a down side to all those scans...they can cause cancer! My doc. doesn't do them and it is only because of the cancer scare that I am not pushing to have them done. But it feels scary, especially since I gather that the way that they know about mets is from the patient reporting pain. So, of course, I have a lot of imagined pains! I would take them more seriously if I didn't come up with a new one every other day. love, Joyce
  • zahalene
    zahalene Member Posts: 670
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    bone scans
    I had breast cancer in '86 and '88. The only scans my onco has done for the past 22 years (with the exception of one cat scan and one mri, both for suspected problems) has been regular bone scans, every 6 months at first and now once a year. I can't say how common that is. It's just what my program has been.
    I'd say check with LOTS of other people and cancer hospitals and ask lots of questions.
  • chenheart
    chenheart Member Posts: 5,159
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    Pet/CT
    Hi Sweetie! I was staged at 2B, with lymphnode involvement. I had surgery, chemo and rads, and now take Arimidex. I will be finishing up my 5 years of Arimidex in January, and I have also never had a PET/CT scan. Regular mammos, a 2 bone density tests ( Arimidex tends to thin the bones) are all that have been ordered. I passed the Magical 5 year post surgery mark in March, and so far, so good! It's good to ask questions and to be pro-active, but from our answers you can see that our Drs, from wherever we are, seem to agree! That in itself is a miracle! :-)

    Hugs,
    Claudia
  • 3cbrca
    3cbrca Member Posts: 206
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    Similiar concern
    As I understand it there ater two schools of thought - one is wait and see and the other is regular scans. My docs are wait and see and I have discovered that I am not comfortable with that. So, it's just about my 2nd anniversary and with 22 positve nodes and poor odds I am going to ask for a head to toe pet/ct which I'm sure my doc will give and do on an annual basis. I already do an annual chest ct for multiple pulmonary nodules.

    So, bottom line - talk to your doc and negotiate what is comfortable for you. It's your cancer, your life your body.
    Best to you - She
  • MommyJ
    MommyJ Member Posts: 3
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    PET scan/Mammograms
    The best thing to do is check out tests/scans and be sure you understand what they can and can not show. The PET scan does not highlight/show up all cancers and their are 3 types that don't highlight and since the PET is expensive it's best to find out if it will help with your type. Mammograms don't help if breast tissue is dense since dense breast tissue shows up white on a mammogram and the cancer shows up white on the scan. Even though I don't have much faith in scans, since they missed my cancer, I still let my Dr. know when I feel having the scan would make me feel better. Let your Dr. know how you feel and good luck.
  • Jules564
    Jules564 Member Posts: 8
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    CT Scan
    Hi...just wanted to let you know that I was diagnosed by in Oct 07 with stage III also. 7 lymph nodes involved and my oncologist is not following up with ct scans either. I was worried at first but it seems this is the norm.
  • Joycelouise
    Joycelouise Member Posts: 482
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    After doing some research
    After doing some research about vitamin D, I asked my doctor to order a blood test of my vitamin D level, which I will do this weekend. Low amounts of vitamin D in the blood has been implicated in higher cancer rates. This is an easy test to do and an easy tx to follow to safeguard ourselves - take more vitamin D if needed. Please ask your doctors about this as I am certainly no expert. I just wanted to add a test that we can do that is proactive. Lets think hard about ways that we can take good care of ourselves - it beats waiting around for scans. Just a suggestion. love, Joyce
  • nastazia_ck
    nastazia_ck Member Posts: 6
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    Jules564 said:

    CT Scan
    Hi...just wanted to let you know that I was diagnosed by in Oct 07 with stage III also. 7 lymph nodes involved and my oncologist is not following up with ct scans either. I was worried at first but it seems this is the norm.

    PET CT SCAN
    hi............

    i have seen your reply and because it seems you have the same condition as my mum i wanted to ask you how are you and what follow up tests do you have.
    do you receive any pills (tamoxifen, arimidex)? or are you triple negative?
    my mum has finished her treatment and now she has to go for follow up tests. the one doctor recommends to have as a follow up pet ct scan and the other doctor is not recommending it.
    we are very confused and don't now waht to choose.......

    al the best to you......
  • jnl
    jnl Member Posts: 3,869 Member
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    PET CT SCAN
    hi............

    i have seen your reply and because it seems you have the same condition as my mum i wanted to ask you how are you and what follow up tests do you have.
    do you receive any pills (tamoxifen, arimidex)? or are you triple negative?
    my mum has finished her treatment and now she has to go for follow up tests. the one doctor recommends to have as a follow up pet ct scan and the other doctor is not recommending it.
    we are very confused and don't now waht to choose.......

    al the best to you......

    Nastazia, this post is 2
    Nastazia, this post is 2 years old. Not sure you will get a reply.
  • John_32
    John_32 Member Posts: 71
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    PET CT SCAN
    hi............

    i have seen your reply and because it seems you have the same condition as my mum i wanted to ask you how are you and what follow up tests do you have.
    do you receive any pills (tamoxifen, arimidex)? or are you triple negative?
    my mum has finished her treatment and now she has to go for follow up tests. the one doctor recommends to have as a follow up pet ct scan and the other doctor is not recommending it.
    we are very confused and don't now waht to choose.......

    al the best to you......

    Hi Nastazia
    I hate to sound paranoid or anything but I am somewhat concerned by the comfort breast cancer patients seem to be taking in mammograms alone. Perhaps mammograms are fine for people who don't already know that they have cancer, but once it has been confirmed that you have breast cancer, I think these patients should be very vigilant in hunting down the cancer wherever else it might have spread in their body before it has done too much damage. And for this the pet/ct/mri kinds of scans are necessary. As I have mentioned elsewhere, my wife recently had a mammogram that showed no further indications of breast cancer, and then shortly thereafter began having seizures, which a subsequent scan of her head indicated was the result of lesions in her brain. Had she had such a scan much earlier in the course of the brain metastasis, there would have been more effective treatment options available to her. So I really do not understand why doctors would be against getting additional scans beyond simple periodic mammograms, which don't tell you anything about whether in fact that cancer has spread.
  • jo jo
    jo jo Member Posts: 1,175
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    John_32 said:

    Hi Nastazia
    I hate to sound paranoid or anything but I am somewhat concerned by the comfort breast cancer patients seem to be taking in mammograms alone. Perhaps mammograms are fine for people who don't already know that they have cancer, but once it has been confirmed that you have breast cancer, I think these patients should be very vigilant in hunting down the cancer wherever else it might have spread in their body before it has done too much damage. And for this the pet/ct/mri kinds of scans are necessary. As I have mentioned elsewhere, my wife recently had a mammogram that showed no further indications of breast cancer, and then shortly thereafter began having seizures, which a subsequent scan of her head indicated was the result of lesions in her brain. Had she had such a scan much earlier in the course of the brain metastasis, there would have been more effective treatment options available to her. So I really do not understand why doctors would be against getting additional scans beyond simple periodic mammograms, which don't tell you anything about whether in fact that cancer has spread.

    call me paranoid
    My doc did not order any tests after chemo...i feel so uncomfortable about this that im seeking a new oncologist (not the only reason seeking new onc dr) but i asked about this too when i found this site about a week ago. im still confused why some doc do and some dont...and it seems if they dont believe in the test / scans they wont even tell you about them or give you the option if you want to do it or not....cuz my onc did not tell me anything about these scans/tests, i found out threw others and asked him about it and he said no...NO...shouldnt that be my decision...if nothing else for a piece of mind!
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
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    jo jo said:

    call me paranoid
    My doc did not order any tests after chemo...i feel so uncomfortable about this that im seeking a new oncologist (not the only reason seeking new onc dr) but i asked about this too when i found this site about a week ago. im still confused why some doc do and some dont...and it seems if they dont believe in the test / scans they wont even tell you about them or give you the option if you want to do it or not....cuz my onc did not tell me anything about these scans/tests, i found out threw others and asked him about it and he said no...NO...shouldnt that be my decision...if nothing else for a piece of mind!

    For a DR not to order and
    For a DR not to order and setup a sch of cat/pet scans is in my opinion, practicing care that is neglagent. Every effort needs to be made to stay ahead or keep pace with any progression or developments that cancer takes. The best way to monitor and treat cancer is by using pre-emptive steps, not reactive. Find another med oncologist/team and have your records, labs, scans, and data transfered to new DR. Its totally unacceptable for a Dr to take chances with the possibility that if the cancer recurs, its allowed to metastatsize. I beleive all cancer survivorts insist on follow up scans and monitoring religiously post treatment. Early detection makes a big differnce in successul outcomes.

    What would your DR say if you came back in 3 to 6 months with a tumor that metastasized and no scans were ordered subsequent to you finishing treatment? I know you would be upset and rightfully so. You are your own best advocate Jo Jo and your instincts are a valuable guide

    Heart of Soul
  • jo jo
    jo jo Member Posts: 1,175
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    For a DR not to order and
    For a DR not to order and setup a sch of cat/pet scans is in my opinion, practicing care that is neglagent. Every effort needs to be made to stay ahead or keep pace with any progression or developments that cancer takes. The best way to monitor and treat cancer is by using pre-emptive steps, not reactive. Find another med oncologist/team and have your records, labs, scans, and data transfered to new DR. Its totally unacceptable for a Dr to take chances with the possibility that if the cancer recurs, its allowed to metastatsize. I beleive all cancer survivorts insist on follow up scans and monitoring religiously post treatment. Early detection makes a big differnce in successul outcomes.

    What would your DR say if you came back in 3 to 6 months with a tumor that metastasized and no scans were ordered subsequent to you finishing treatment? I know you would be upset and rightfully so. You are your own best advocate Jo Jo and your instincts are a valuable guide

    Heart of Soul

    So im not crazy or paranoid...heartofsoul?
    This very thing is what brought me to this web site cuz i was deperate for answers concerning this!!
    To be honest i got even more scared when these 3 women on here had a reaccurrance...and i asked myself what if that happens to me, HOW WOULD I KNOW IF IM NOT TESTED??
    Like you said Heartofsoul...im my best advocate!
    We shouldnt have to go through this with our dr's...cuz like i said i wasnt informed of treatments after chemo...my doc i guess doesnt see the importance of PETscans and all that but just cuz its his personal belief or preferrence, i beleive we should still be informed about whats out there and other options we have and let us decide if its important or not!
    I think that should be for the whole process of breast cancer...we shouldnt just be told about the dr's preferrences but all options.
    One thing im glad of though my doctors ignorance brought me to this web site!
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
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    jo jo said:

    So im not crazy or paranoid...heartofsoul?
    This very thing is what brought me to this web site cuz i was deperate for answers concerning this!!
    To be honest i got even more scared when these 3 women on here had a reaccurrance...and i asked myself what if that happens to me, HOW WOULD I KNOW IF IM NOT TESTED??
    Like you said Heartofsoul...im my best advocate!
    We shouldnt have to go through this with our dr's...cuz like i said i wasnt informed of treatments after chemo...my doc i guess doesnt see the importance of PETscans and all that but just cuz its his personal belief or preferrence, i beleive we should still be informed about whats out there and other options we have and let us decide if its important or not!
    I think that should be for the whole process of breast cancer...we shouldnt just be told about the dr's preferrences but all options.
    One thing im glad of though my doctors ignorance brought me to this web site!

    My dr. didn't think a pet
    My dr. didn't think a pet scan was nessasary I insisted on it and told her if she wouldn't order it I would find a dr. who would. She ordered it. This is my life, my health, my time, and my money. If the cancer spreads somewhere else what's the doc gonna say, sorry. It's not his life it's yours.