My Doctor says no unnecessary scans...

So I just completed my first line treatment for stage 4 grade 3 carcinosarcoma, saw my doctor today and he says my bloodwork looks good and I am in good overall health so he will not be doing any sort of scan. This has me very worried as I have always heard of people getting scans after their chemo was done. Maybe I am ill informed, I don't know. The Doctor says the scan is unnessesary and the high leveles of radiation can actually increase my risk of developing other cancers. Have any of you had this experience? I just don'tknow what to think and this partly may be because my doctor answers every question like I am inconveniencing him with my very existence. If you ladies can give me any feedback it would much appreciated.

-Melissa

Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Melissa, More than anything

    Melissa, More than anything else.... I hate the way your doctor is making you feel. Have you considered getting a second opinion? You didn't mention radiation which surprises the heck out of me. I was stage 1 / grade 3 and had brachy along with chemo. Now that you have finished what he recommended, and since you don't feel good about the follow up (or lack of) it would be good for you to hear from someone else - especially if that new person listens and takes the time to make sure you are satisfied.

    Take care of yourself and congrats on finishing chemo! Give yourself time to heal from it.  You will get stronger and stronger over time but it doesn't happen overnight.

    Love and Hugs,

    Cindi

  • mwells1004
    mwells1004 Member Posts: 13

    Melissa, More than anything

    Melissa, More than anything else.... I hate the way your doctor is making you feel. Have you considered getting a second opinion? You didn't mention radiation which surprises the heck out of me. I was stage 1 / grade 3 and had brachy along with chemo. Now that you have finished what he recommended, and since you don't feel good about the follow up (or lack of) it would be good for you to hear from someone else - especially if that new person listens and takes the time to make sure you are satisfied.

    Take care of yourself and congrats on finishing chemo! Give yourself time to heal from it.  You will get stronger and stronger over time but it doesn't happen overnight.

    Love and Hugs,

    Cindi

    I agree

    I do see a doctor as Roswell Cancer Institute who is fabulous, unfortunately that place is hours away and they reccomended that for "regular" visits I see someone closer to home. I was told by both my local doc and my doc at Roswell that radiation has not been proven to be useful for mmmt. It seems that everyone else with mmmt has had radiation but idk, maybe for stage 4 cases it doesnt make a difference.  I think I will call my doctor at Roswell and see what he says about a scan. Thanks for your input! - Melissa

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited September 2017 #4
    Scan

    I don't see how they can make a decision about whether or not to do radiation if they don't do at least one scan after chemo.

    How do they know how much of a difference the chemo made? How do they know whether or not radiation would make or not make a difference to any tumor(s) that remain?

    If your remaining cancer is too extensive to make radiation feasible, that's one thing, but how can they make that decision without first checking on what the chemo did for you?

    I'm with Cindi, you need another opinion. My gyn-onc doesn't practice out of Roswell anymore, but if you want his name to get another opinion about this, just pm me. It's not the institution that matters so much as the doctor, wherever he/she practices. I was given the choice by my gyn between going to Roswell or to this other gyn-onc and I asked which she would pick if she were in my shoes and she picked this doctor. I've been very grateful to her for that referral. 

    It's one thing to be conservative about radiation exposure, but your Roswell doctor seems a bit over the top if he doesn't even want to see how much good the chemo has done for you.

    Did you have any genetic or genomic testing done to see if there are other options besides chemo to help you keep this beast at bay? Stage IV hasn't been a death sentence for others, so you should be offered whatever options are out there for you to keep going before anything gets a chance to come back. 

    I hate wait and watch doctors! Especially ones who make you feel like you are an inconvenience! How cruel!

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Scans

    Melissa

    I did have a period where I didn't get a scan and finally I asked for one.  It was a whole year.   I usually got a scan every 6 months.   Even a scan once a year wouldn't be bad.   The only issue you may have is with your insurance company allowing the scans.   Just so you know, in 2014 alone I had 1 CT scan, 1 MRI, 4 PET Scans, x-rays and that was only in 2014.   I have been scanned at least once a year since 2005 when I was first diagnosed.  I think you can see me glowing from your home town!

     

    I do agree with the others though to get a second opinion.   Some doctors like to wait until you have symptoms to do any scans.  No me though.  I am different and didn't really show symptoms so I would want to be scanned.   If your doctor doesn't fee right, change doctors.   

    My best to you,

    Kathy

  • Soup52
    Soup52 Member Posts: 908 Member
    I agree with the others . A

    I agree with the others . A second opinion is in order. I challenged my doctor as I have only had blood tests and internal for the past year, but I did have a scan after chemo was done and now finally I will have another. I reminded that I didn't bleed heavily in the first place and was still 3C high grade , also i don't see the value in my CA125 anymore as mine was never high and remains in the teens. Now I'm just waiting to see if insurance approves .

  • abrub
    abrub Member Posts: 2,174 Member

    I agree

    I do see a doctor as Roswell Cancer Institute who is fabulous, unfortunately that place is hours away and they reccomended that for "regular" visits I see someone closer to home. I was told by both my local doc and my doc at Roswell that radiation has not been proven to be useful for mmmt. It seems that everyone else with mmmt has had radiation but idk, maybe for stage 4 cases it doesnt make a difference.  I think I will call my doctor at Roswell and see what he says about a scan. Thanks for your input! - Melissa

    Trust your dr at Roswell Park

    My dr at Sloan Kettering determines my follow-ups, not my local oncologist, even tho he's very good.  I would trust your dr from RP more than a random dr.

  • Kvdyson
    Kvdyson Member Posts: 789
    I agree with the others - get another opinion about scans asap!

    Melissa, my gyn-onc told me no chemo and no scans when I saw him for my first appointment. That changed after my surgery (eventhough my diagnosis of MMMT didn't change). I'm not exactly sure why but he changed his mind and decided that chemo, radiation and scans would all be necessary. My first 3-month follow-up CT scan after front-line indicated a mass in my chest so I've now had 3 more PET scans on top of the CT scans that I had before surgery, after surgery and during treatment. (By the way, the mass appears to benign but it's still metabolically active so he wants to watch it.)

    I'm telling you all of this because my MMMT was staged at 1b. If you were at stage 4 then it seems completely illogical that scans would be more risky to your health than not catching a metastisis or recurrence as quickly as possible. MMMT is a grade 3 cancer for a reason. It is well known to be extremely aggressive.

    I agree with the others - get another opinion about scans asap!

  • survivingsu
    survivingsu Member Posts: 134 Member
    Scans

    Hi Melissa,

    I only know about my personal experience, and the requirement of scans probably reflects the kind of cancer and the agressiveness of the particular cancer.  For me after treatment I had scans every 3 months for awhile, this graduated to every 6 months for a few years, then yearly, then not at all.  It has been 8 years since my treatment.  I was told that if I experienced symptoms then they would scan.  I still have to do the C-125 test yearly even though I was always in the "normal" range even with cancer.  They look for sudden or substantial changes.  I went to the Seattle Cancer Care Alliance and the University of Washington Medical Center.  I have great faith in their expertise concerning treatment and decisions re scans.

    My very best to you,

    Susan

  • mwells1004
    mwells1004 Member Posts: 13
    Thanks for all the input ladies...

    I agree with all of you and felt that way myself, I just wanted to make sure I wasn't being crazy and hyper vigilant. I am going to call the doctor at Roswell tomorrow and see what he has to say. 

     

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    My oncologist/gynecologist is

    My oncologist/gynecologist is exactly like that too!!  Thank heavens for his PA!!  I was told the same thing - no scan unless there are other symptoms.  My PA said that when the crabby oncologist was first in practice he did scans all the time.  But, they've found that they don't catch more cancer AND, like you said, can cause other kinds of cancer because of all the radiation.

    I'm glad to hear you made it through treatment and hopefully are on your way to a happy healthy life after cancer.

    Love,

    Eldri