Do i need scans after chemo is finished, P.A. says NO!!

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skigrl
skigrl Member Posts: 53

I just saw the physician's Assistant today and i asked her what's next after chemo is finished. (this friday) and she said nothing.....i asked about scans and she said i wont need any , that the chemo did it's job. So how do we know it isnt in the organs? Or the bones, or brain? I just get worried that i will go on with my life -like i plan to do, but what if i dont get checked and then it's to late..what if the cancer came back but it advanced before i knew it was even there.

What have you all done after treatments were finished?

Thanks for replying

Skigrl

Comments

  • navygirl
    navygirl Member Posts: 886
    edited March 2009

    skigrl...it's actually not that uncommon to finish chemo and just...go on. My onc said the same thing. At this point in the treatment...they really do just assume you are cured. Unless you have symptoms (pain, headaches, abnormal bloodwork, etc.) they won't do scans just for "check ups". The way it was explained to me...nothing will show right after chemo if it didn't show before hand. It can take years for a new cancer/reoccurrence to get to the point where it can be detected and at that point, you would have some other symptom as well. I'm sure I'm not explaining it very well (and someone else will come along who can) but the bottom line was...it won't make a difference in their ability to fight it if comes back whether I have scans or don't. Unless I notice something different going on with my body...I just go on assuming I am ok.

  • Deb-from-Ohio
    Deb-from-Ohio Member Posts: 1,140
    edited March 2009

    I had neoadjuvant chemo, (am done) and am waiting to hear when my CT scan the doc ordered is..also the B.S. has already said she will probably order an MRI before the surgery...I know personally I will feel better..did you tell your doc how anxious you are?

    Deb

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2009

    Your scan schedule should be done by your stage at diagnoses. Not how well you responded to chemo.  Stage IIIa or b I was told every three to six months the first year. This depended on if you still have your breast or not. If you don't have your breasts the only way to see recurrences locally is with scans.  Another factor is what your margins looked like. It's all about how risky you are for recurrences.  Stage, if you have a basal tumor and margins can put you at high risk.

    I would push for scans no less that six months.  The first year...every three months.  Key is to find it fast if you do have a recurrences.

    Flalady

  • Meggy
    Meggy Member Posts: 530
    edited March 2009

    I was told the same thing, no scans unless symptons.  I have to say that I'm not so sure I buy that because with we Triple Negs, our cancer is so aggressive that couldn't it come back and we just don't feel it?  I say push for brain MRI and bone scan an PET/CT may somepoint may be 6 months after treatment.  

  • Maire67
    Maire67 Member Posts: 768
    edited July 2010
  • VickiG
    VickiG Member Posts: 536
    edited March 2009

    Each doc seems to have his own ideas, but the general concensus seems to be "wait till there's a reason to scan."  My onc (who I do love dearly) told me that most patients "just seem to know" when there is progression & that's when she'll scan.  Of course dh & I thought that was insane (altho now I realize just how correct she was!) and she went ahead & ordered my scans when she saw how uncomfortable/nervous we were when she told us there is no real schedule that is followed.  This was just a couple of wks after surgery (and before rads) and there was a place that lit up... since it WAS so soon after sx, it was attributed to that but they decided to rescan in 4 mos just to be sure.  Like Maire said, what's impt is to follow up on any symptoms ~ the info from the scans is impt, but our own input is just as impt. 

  • Meggy
    Meggy Member Posts: 530
    edited March 2009

    I just foundout Twink has passed.  This is so devastating.  I am going to demand scans.  We can die so quickly if they don't check us.

  • Analemma
    Analemma Member Posts: 1,622
    edited March 2009

    What your doctors don't want to tell you, because they don't want you to yell at THEM, is that insurance won't pay for scans unless there are symptoms.  I believe that's the primary reason doctors don't order routine, post chemo scans.  And, I can see their reasoning.  Insurance has to make a profit, and scans are expensive, and have not been proven to increase life expectancy in mets.  You think there's a health care crisis now?  Imagine what the costs would do if doctors ordered routine scans every three to six months for every cancer survivor.

    That said, you can always fake symptoms.  Get a cough that just won't go away, an ache in your rib, a pain on your right side under your ribs, a recurring morning headache.  If you report symptoms, the doctor has a responsibility to present the test to the insurance company for certification.

    The other reason to not be too aggressive with routine scans is radiation load.  It doesn't go away, at least very slowly, from your body.  And radiation is also a risk factor in developing cancer.  It's a balance.

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2009

    Who said scan every patient every three months.  We are talking about stage III and for the first year after completing treatment.  And there is new research that prove finding mets early extend life! I'll find the article's again for everyone. 

    Flalady

  • BornInWA
    BornInWA Member Posts: 10
    edited April 2009

    My cancer came back.  I finally got a CT scan and bone scan after my tumor markers went up over a 6 month period.  I switched to a new oncologist after getting a second opinion.  My first oncologist said that my insurance company would not approve a PET/CT.  I didn't have any symptoms and my new oncologist said that the tumor (as well as lymph nodes) that showed as cancerous probably were there and growing for at least five months prior to finally getting a PET/CT scan.  She told me that she prefers to do a base PET/CT scan initially and then have them done routinely after that every six months or so along with monitoring my tumor markers every couple months.  She had no problems getting the insurance company to approve the PET/CT.  I also had an MRI of my head even though I was having no symptoms.  My initial oncologist said he didn't feel it was necessary.  He only did a CT of my Chest and abodmen and a bone scan.  No CT of my pelvis or MRI of my head.  In my opinion, I feel better when they are pro active and don't wait for me to have some sort of symptom.  I wasn't even told that my tumor markers had been going up until he saw that they had gone up for the third time.  I'm much happier with my current oncologist who is a "leave no stone unturned" type.  I believe there are different doctors for different personalities.  If you are more comfortable with the less intrusive approach then maybe no scans are a better way to go for you.  If you need a doctor that's more pro active then by all means, find one that is that way. 

    I can't help but wonder if it would have helped if I had PET/CT scans on a regular basis along with monitoring the tumor markers and maybe having a PET/CT when the markers first started to go up, especially with my history of Triple Negative, vascular involvement, and positive nodes. You need to be your own advocate and don't be afraid to ask for a PET/CT if you want it.  If your doctor is not willing then maybe you may want to consider a second opinion.

     

  • HollyHopes
    HollyHopes Member Posts: 497
    edited April 2009

    I am so sorry BorninWA to hear your news....and glad that you found a new care provider whom you trust.....

  • tibet
    tibet Member Posts: 545
    edited April 2009

    BorninWA

    So sorry about your news. How many nodes involvment did you have the first time? You wrote, you had vascular invasion. How did you know that? Did they tell you in the path report the first time?

  • BornInWA
    BornInWA Member Posts: 10
    edited April 2009

    Hi Newalex,

    I had one node involved the first time around.  It was my sentinal node.  The path report from my mastectomy said that I had vascular invation.  

    Thanks for the response HollyHopes.  

  • CatKC
    CatKC Member Posts: 12
    edited May 2009

    I say "Yes!" you need scans to follow up as Tri-Negs! I was CT scanned at the end of treatment and was clear. Just 1 yr later I had another scan (Scheduled) and already had extensive tumor spots all over my liver, but no physical symptoms to report.. Can't help wondering if I'd be in a better place today if I'd been scanned at 6 months instead!

  • skigrl
    skigrl Member Posts: 53
    edited June 2009

    CatKC

    I am sorry to hear it showed up on your liver. I was wondering if you had any blood work in between your scan? Wouldnt blood work tell you if something was going on with your liver?

    Just wondering because i will have blood work every 3 months for awhile. Anyone else know if this is true?

  • CatKC
    CatKC Member Posts: 12
    edited June 2009

    Skigrl- I had blood work done every 3 months, but nothing showed up and my liver is still functioning well despite the cancer- good news for me right now.

  • kellyless
    kellyless Member Posts: 68
    edited June 2009

    I have my 8th & final chemo on 6/12, and my onc ordered a cat scan for this Thurs. 6/4.  I was IIa, a smidge on my sentinal node with clear margins - I'll do 6 1/2 weeks o rads starting in a month.  I'll have breast MRI's every 6 months and an appt with my breast surgeon, and I'll see my onc every 3 months for 2 years (with full bloodwork), then every 6 months for 3 years - then once a year - WOOT!  My onc, who I adore, will be on vaca for my final chemo, but she explained to me that at the end of treatment most women start feeling scared and bereft when they are no longer seeing a doc every week or two (I've seen her every other week for 16 weeks, then the rad onc once  a week for 8 weeks - my car drives itself to the cancer center)  and that is completely normal, but I need to keep telling myself that we "Kicked the cancer's ass",   She said to email or call her ANYTIME I have a concern or feel "Something". 

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2009

    kellyless,

    You are so lucky your doctor will be aggressive with your follow up.  I've seen many ladies just be put out to pasture after treatment...like you say the "not doing anything" after so many months of battling this disease does not feel right. I hope you find radiation gentle for you and congrad's with finishing chemo.

    Flalady

  • ddlatt
    ddlatt Member Posts: 448
    edited June 2009

    my medical oncologist at UCSF recommends no scans after treatment, but he does recommend bloodwork and tumor markers every six months. my reno medical oncologist (who is a complete idiot and i never listen to him, but i'm stuck with him because of insurance) recommends chest x-ray (absurd) and bloodwork every six months. my radiation oncologist recommends a PET scan six to eight months after treatment ends. i'm going to listen to my USCF doc, who is a specialist in breast cancer research and treatment, mark moasser.  i've had enough radiation, thank you, after 35 treatments, don't want any unnecessary scans. and liver problems will show up in bloodwork.

  • Shirlann
    Shirlann Member Posts: 3,302
    edited June 2009

    Ha ha, in California, wirh HMO's, we only get a referral to Dr. Krevorkian after treatment, certainly no scans.  But oh well.

    Hugs, Shirlann

  • reen
    reen Member Posts: 164
    edited June 2009

    My doctor also said wait for symptoms.  Believe me every symptom I have I'm getting checked. 

  • ShondaE
    ShondaE Member Posts: 48
    edited June 2009

    I finished my last round of chemo three weeks ago...And my Onc is going to schedule a PET Scan, she wants a new test before I start my reconstruction.  I meet with the Radiation Onc about 2 weeks ago and he said that radiation was to risky for me and wouldn't make much of a difference since i had a Bilateral Mast...

    Has anybody ever been told the same thing?  I'm a little nervous about not getting radiation, but I am glad that I am getting another PET SCAN just to make sure everything is good.

    Shonda 

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