Question for after being done with treatments

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janaes
janaes Member Posts: 799 Member

Im not to sure that im too happy with my medical oncoligist right now.  It seems he went from being very axious to getting me in to do chemotherapy back in June, when i started, to not being too concered about my cancer comming back.  I have MMT also known as carsinisarcoma uterine cancer stage 2 grade 3. The pathologist and doctors found, after surgery, that there was not as much MMT (an aggresive type of uterine cancer) in my cancer as they thought after biopsy. I was and even now greatful for that.  Of course i hope mine never comes back, but of course i have been thinking about that.  In fact as I was deciding about radiation and what to do i concidered my cancer in my desition.  I even asked my radiation oncologist last week what he would do if he saw a spot of cancer when he was doing follow up. He told me, even though he didnt think it would come back, he would follow up with external radiation just in that area.  I really thought that was a good plan.  I felt like i could live with that, especially with the amount of radiation i was given 23 years ago.  My radiation Oncologist also said to me his first exam with him after i was done  would be a vaginal exam. He didnt want to do a ct scan right off but did not sound like he was against ct scans all together.  I felt good about that as well.  He seemed pretty well balenced.

So this is why I am not liking my medical oncoligist right now.  After my apointment with him on tuesday, he told me he wanted to see me in three months, which is great, but he told me he would not be doing a CT scan or a vaginal exam.  It sounded like it was something he did with all his patients no matter what cercomstance his patients were in.  He told me we would only do a CT scan if there were problems.  That scared me to death.  All of the sudden i found my self asking him what i should be looking for in regards to problems that might occure.  I dont like his thinking. He has strickly gone by the CA 125 number all along. My number was good al along but never had my blood taken while i had cancer inside me (dont know that CA 125 number.  He didnt ask about what is going to be going on with my radiation.  Okay the plan was just bracytherapy all along, but i will be honest that wasnt always my plan.  I did a lot of research before i decided that was okay for me.  Un like my radiation doctor, I felt like he wasnt thinking of me as a patient.  I guess you would say i felt like a number.  

Has any one had a doctor like this? should i be worried? I had a gyncological oncologist who did my surgery, but he under diagnosed me and told me i didnt even need chemotherapy. Although after my gynocologist called him and told him i was doing chemo after all, he at least except i was doing.  I havent seen him since a few weeks after surgery. I dont know that i trust him any more and there is not another gyncological oncoligist in my area. I would have to go an hour away. It sounds like i wouldnt be seeing my radiation doctor until 3 months after my medical oncoligist which isnt until march thats almost five months after i am done.  Should i wait that long before a vaginal exam?  It would be even longer after that before i had a CT scan. (unless of course there were problems)

Im not sure my medical oncologist would order me a CT scan if i felt i needed one.

What would you guys do?  I would really like to hear others on this one.

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  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited September 2016 #2
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    Janae, There are many ladies

    Janae, There are many ladies on this board who do not have CT scans unless there is a problem. In fact, my GYN Oncologist does not like to expose his patients to CT scans at all. Only IF there is an indication of a problem. He does do vaginal exams every 3 months though. Why not ask your general practioner to do one for you since getting a new GYN is an hour away. He/She can make sure everything is still clear.  Also, since they ordered an MRI for your back, ask them to also include your abdominal/pelvic area. That should ease your mind a bit.

    Love and Hugs,

    Cindi

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    NCCN Standard Treatment

    Janae, I believe the minimum standard after front-line treatment for carcinosarcoma is a vaginal exam every 3 months for the first 2 to 3 years. Maybe you can ask your doctor why he is not following the NCCN standard?

  • janaes
    janaes Member Posts: 799 Member
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    Hmmmm. That is interesting

    Hmmmm. That is interesting kim.  I dont have my next appointment with him until 3 months and its accually with his nurse practitioner. I think i would have to call on the phone and see if his nurse would ask that for me.  I think i have the web site to nccn standards but do you happen to know where i would find that info with in it?  I think the nurse would here me out better if i told her i found the info.  My dad is in complete denial about me having MMT.  He's not going to be help on this at all.  Tried to talk to him about it at chemo today and wont except it at all and i guess that is okay. 

    Thank you for your help Lou Ann and Cindy too.

    Thanks Janae

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited September 2016 #5
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    If you know the doctor that

    If you know the doctor that is an hour, is someone who will help you feel at ease and whose opinion you respect I would make the,drive.  I live in a,rural area and my medical Oncologist to is an hour away and my Gyn oncologist is a three hours  drive away.  He is now no longer seeing patients,  but I would gladly drive the three hours to see him.  You need a doctor that you are happy with.  I did switch medical oncologistics after my first recurrenc, even though he was 30 minutes closer.   I Didn't feel comfortable with 15 minute rushed appointments, very crowded chemo room and nonchalant nurses, who though everything was funny.  I love the oncologist that I have Now even though it is an hour's drive.

    Decisions are so hard to make.

    Hugs and prayers, Lou Ann

  • Jodisgoing180
    Jodisgoing180 Member Posts: 97
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    No scans for me unless..

    My Cancer marker is elevated, or I have specific symptoms.

     

  • Kvdyson
    Kvdyson Member Posts: 790 Member
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    janaes said:

    Hmmmm. That is interesting

    Hmmmm. That is interesting kim.  I dont have my next appointment with him until 3 months and its accually with his nurse practitioner. I think i would have to call on the phone and see if his nurse would ask that for me.  I think i have the web site to nccn standards but do you happen to know where i would find that info with in it?  I think the nurse would here me out better if i told her i found the info.  My dad is in complete denial about me having MMT.  He's not going to be help on this at all.  Tried to talk to him about it at chemo today and wont except it at all and i guess that is okay. 

    Thank you for your help Lou Ann and Cindy too.

    Thanks Janae

    2016 NCCN Standards

    Hi Janae, if you're referring to the 2016 pdf version of the NCCN guidelines, look at the top left corner of page 18. It states "Surveillance - Physical exam every 3-6 mo for 2-3 y, then 6 mo or annually". Hope this helps! Kim