what followup tests?

srodg1468 Member Posts: 1
edited March 2014 in Breast Cancer #1
I am a 2 1/2 yr. survivor but have had nothing but 2 mammagrams since. Isn't there something else they should be doing to make sure it doesn't come back? Tests or something? Should I insist? Suzanne


  • jmears
    jmears Member Posts: 266
    Hi Suzanne
    I thought I should be having a lot more tests as well ... like bone scans or somehting but I've had mammograms and one breast sonogram and blood tests? Are you getting frequent blood tests? I am taking Tamoxifen and they check blood for that but I think they check markers every 6 months on me. Should you insist? You should feel comfortable with your care and if they can explain shy you don't need the test to your satisfaction ... I'd say fine ... but if you still feel uncomfortable ... I'd insist!!! Good luck. Jamie
  • inkblot
    inkblot Member Posts: 698 Member
    Hi Suzanne:

    I am 15 months out of chemo and will soon be one year out of radiation. My regularly scheduled visits are:

    Oncologist: every 3 months for the first two years. This visit consists of tumor marker tests, blood counts and a chemistry profile
    with a physical exam. The only routine test she schedules is a yearly chest x-ray, unless something further is indicated.

    Surgeon: Was every 3 months for the first 6 months and is now twice a year.

    Mammo: every six months for the first 18 months. Yearly thereafter, if no problems.

    Radiation Oncologist: Is currently every 6 months. Visit consists of a physical exam and
    general health chat. No tests here unless indicated by a problem, etc..

    Some ladies say that their physician's order a routine bone scan once yearly but mine doesn't do this. Her thoughts are that it shouldn't be a routine test...only if symptoms or a problem indicate it's needed.

    I think we could get nuts with tests on top of tests with no indication that it's needed. LESS is fine with me. It means I'm doing well and haven't the need for more tests. Too, I look forward to passing the two year mark, when the onc. visits will go to every 4 or five months! Those visits will continue to stretch to longer intervals and at 5 years will only be once yearly. Sounds great to me...will be sort of like my yearly gyn. visits, less time consuming and less running about too.

    Unless you're having some particular things going on with your body which are causing you concern, I wouldn't worry about it. If so, then talk to your doc and yes, insist he/she
    investigate further. Did you have a mastectomy or lumpectomy? If lumpectomy, then I would have expected you'd have had more mammo's in this 2.5 years. Ask your doctor about that, if you had a lumpectomy.

    If you're feeling fine, then relax and enjoy.

    Wishing you well.

    Love, light and laughter,
  • lizaboy
    lizaboy Member Posts: 34
    Hi I'm only 7 months down the line so it's early days yetbut I understand I will have 6 monthly checks with my surgeon and oncologist and yearly mamograms. I don't know what these checks will entail as I go for the first at the end of this month. If you are not happy I feel it is your right to insist on more. It's you body!
    Hope all goes well
    Love Liza
  • ptomom
    ptomom Member Posts: 26
    Hi Suzanne, My understanding from my surgeon is that tests would be unreliable due to they can not pick up the smaller cancer cell. I have been through chemo, radiation (finished 7/02)and now on tamoxifen and the only test scheduled is a chest xray and blood work in 1/03. If there is reason to believe that something is happening, they will then schedule further tests. i.e. pains, cough that doesn't go away. I am only a few months out, although frustrating that the medical field has not advance to "find" cancer cell quicker, I do see "a" doctor every three months due to the schedule. i.e. oncologist 1/03 and surgeon (4/03). Hang in there. Love Darla
  • 24242
    24242 Member Posts: 1,398
    I thought I would be having allot more check ups than I had when not showing symptoms of some kind. I am 5 year survivor and the only time I see anyone from cancer clinic is if I am having problems the left has been left up to me. Listen to your body and remember being tired is often a symptom of something, we often accept it as just being tired but if it doesn't go away you need to be looked at. LIKE someone else said if pains coughs or other things linger more than 3 or 4 weeks then you must attend to it by seeing someone. My doctors at times wish I would go away because of the symptoms I always seem to be having, but in fact the best thing I ever did was investigate or I would be suffering the rest of my life, no one neeeds to suffer that is why we have doctors and research all these years and all that money. I found that I had many diseases because I knew something was dreadfully wrong with me, it wasn't in my head and it wasn't cause of anxiety. Suzanne if you aren't happy with something or concerned always bring it up with your doctor and if it continues keep bugging them for answers.
    That is the best thing that we all can do for ourselves.
    Be good to yourself first,
  • nasa2537
    nasa2537 Member Posts: 311
    Hi Suzanne...I'm only one year out, but my oncologist is seeing me every 4 months, and she does bloodwork every time. She pays particular attention to my tumor markers. Also, I have mammos every 6 months right now...due for the next one in November. My onc said she'll keep seeing me for the 5 yrs I'm on tamoxifen. I would ask yours if there is anything you should be doing to check anything out. Best wishes...Cyndi
  • ksfc
    ksfc Member Posts: 251
    I just finished treatment in August so I'm fairly new to this follow-up regime. I had a follow-up bone scan, abdominal ct, and chest x-ray after treatment to make sure nothing had changed. I see my onc every 3 months and will start blood tests for tumor markers in Dec. I saw the radiation onc 6 weeks post treatment and he scheduled mammograms for Dec. I see the surgeon every few months (it varies depending on whether or not I'm being seen by someone else). I've been told that scans and such will not be routine without symptoms. Diane
  • pamtriggs
    pamtriggs Member Posts: 386
    Dear Suzanne
    Yes you should have more tests than just mammos. The frequency of these tests decreases as time passes. You should have yearly bone scans. These pick up hot spots in the bones & are an early warning of bome metastases. (It will also show arthritis so not every hot spot is necessarily cancer). You should also have regular marker tests to pick up elevated protein markers which show presence of the disease. Also an annual MRI or CT scan can also be a useful test as these pick up soft tissue metastases (lungs, brain, liver etc). Mostly though don't worry as worry cures nothing & saps your energy. Even all these tests are not fool proof as I had these for 5 years & still got it back after 19 years but hey that's a good remission & I really enjoyed my life in those years as I treated BC as a wake up call not to waste my life on "one day I will ...... I just went & did it & I saw the world, raised two kids & am so enjoying my grandson. So ask that oncologist for these tests or change oncologists.

    Love & hugs

  • 24242
    24242 Member Posts: 1,398
    I think we all can tell you that the best maintenance program begins with you. Some have never been back fo rany check ups. My mother was horrified to see that I wasn't being followed at all, it is just because of all my probelms that I have been back seeing a pain specialist at the cancer facility.
    I think looking back we can all see that there were signs if we had just been listening to them, we might have caught the cancer ourselves if you didn't find the lumps yourselves. Some of us have been diligent in performing self exams that we were able to find our lumps when they first started showing up. IN my case the doctors poo pooed it saying I was just to healthy and well built for this to be anything other than a fibrous cyst. Surprise, with no diagnostic testing how would they every find the cancer that was truly there and growing. I asked the questions they said I was just too young. I didn't show signs of being ill, in fact I was tired not sick to begin with when I found my lump at first. Looking back I can see there were many more signs I should of been listening to. Yes they should of checked the lump but didn't and I believed them. I should of believed my own body cause it was telling me there was something terribly wrong as it has the past 5 years while I have uncovered the many diseases I am suffering with now after the treatments are well over with. My body has told me that these pains are serious and have to be addressed. We all have to watch and see if pains and aches or coughs continue for any lenght of time, if so seak medical attention. Simple just not easy.
    Be good to yourself first,