mets screening

Malloy
Malloy Member Posts: 4
edited March 2014 in Breast Cancer #1
I was diagnosed with her 2 neu stage III with 6 positive nodes in 10/02. Had a bilat mastectomy, Adriamycin and Cytoxan, radiation, and 1 year trial of herceptin. I was told this is a very aggressive cancer that is often likely to recur/mets. Yet my onc. says there will be no need for any screening scans looking for mets in the usual 4 parts of my body because studies have shown that when the first symptoms show up, if I report them right away, the effectiveness of treatment is about the same as if the mets was found on a scan. I am not comfortable getting no scans or x-rays or blood work of any kind. I've been very satisfied with my onc. except for this one area. Does anyone want to share what their follow-up care is? Thanx and yippee.........spring has come to Minnesota!

Comments

  • deborah053
    deborah053 Member Posts: 4
    #2
    if you are in MN you sure do need spring!
    This is the usual method of followup now it seems. I have questioned my onc. and get the some discussion. If you think about it, it makes sense. CTs et al only pick up certain size lesions and likely not before you have symptoms. My doc also said that some of her pts just cannot tolerate no tests, and then she will do a scan. Talk to your doc and be assertive. If you really cannot stand to go without the tests, and your oncologist won't do them, check with your primary care doc. At first I thought this was a crazy way to go, but I am comfortable with it now. Just watch for any changes in your body and especially any bony pain that persists in back or hips. Hope this helps. Good luck.
    Deb
  • blessings1020
    blessings1020 Member Posts: 54
    #3
    deborah053 said:

    if you are in MN you sure do need spring!
    This is the usual method of followup now it seems. I have questioned my onc. and get the some discussion. If you think about it, it makes sense. CTs et al only pick up certain size lesions and likely not before you have symptoms. My doc also said that some of her pts just cannot tolerate no tests, and then she will do a scan. Talk to your doc and be assertive. If you really cannot stand to go without the tests, and your oncologist won't do them, check with your primary care doc. At first I thought this was a crazy way to go, but I am comfortable with it now. Just watch for any changes in your body and especially any bony pain that persists in back or hips. Hope this helps. Good luck.
    Deb

    I had NO idea that these scans would not pick up anything until the lesions were a certain size! Just shows you how much I don't know and how much my FORMER oncologist did not tell me.

    I have been having intense pain in my ribs (mastec. side), backaches, and hip pain so severe that I have fallen three times.

    After "complaining" of this pain for over three months on a constant basis, I was given rib films, chest x-ray, bone scan (showed hot spot at 5th rib), CT scan, and PET scan (showed area of uptake in 5th rib area) and doc tells me there is "nothing" to worry about. He treated me like I was hysterical, neurotic, hypersensitive and a hypochondriac.

    Huh? I am still in agonizing pain...pain that I did not have until three months ago. Now he suggested I go to pain management because I have rheumatoid arthritis and he feels this is why the pain...I KNOW better.

    I see my new oncol on the 27th and hopefully she will listen to me and help me through this.

    I really am concerned that this will get to the point that it is so bad nothing can be done about it.

    NO ONE knows your body better than you do and no matter what you have to do, keep on insisting that any and all testing is made available to you.

    Spring here in PA as well...loads of rain!
  • tlmac
    tlmac Member Posts: 272 Member
    #4
    Hi Malloy, My oncologist told me he wouldn't be doing any tests so long as I felt good and remained symptomatic free. He'll and my surgeon will be physically examining me, on a regular basis, for five years. I'm confident we'll catch any local recurrence early. My doctor did tell me he'd order tests if I required them for my piece of mind. I hate testing so he and I are in complete agreement. I also love the fact that he takes my peace of mind into consideration. Don't hesitate to discuss your concerns with your oncologist. The doctor/patient relationship needs to be a good fit. Look for another opinion concerning followup care if your doctor's approach is causing you concern. Good luck.
    terri
  • blossomtime
    blossomtime Member Posts: 98
    #5
    I was stage IIb, her 2 pos,6 nodes pos and hormone receptor neg in 6/02. I get a cxr once a yr and lab now every 4 months. I now am on a 6 month scedule with oncologist and surgeon. But if I have any complaints they do a scan to check it out. So far so good. Best of luck to you
  • billandpatty
    billandpatty Member Posts: 86
    #6
    My breast cancer oncologist told me about 3 years ago that the one key thing that doctors rely on for possible recurrence is how you feel. He said that the testing they do doesn't show everything and isn't always reliable. I think what all this tells us is that we have to have doctors that we can talk to and that take our concerns seriously and that they error on the side of caution. I just passed the 3 1/2 year mark from my last chemo treatment without recurrence and that, I'm told from my onc, is a milestone. He said the majority of recurrences happen within the first 3 1/2 years (I know lots of women that have had them later). I was seeing him every 4 mos. and now I will be seeing him every 6 mos. with a mammogram once a year and a chest x-ray once a year and blood test every visit. I might add that I'm a 10 mo. survivor of melanoma and the chest x-ray is required for that. The melanoma onc. relies on the blood work I have done for the bc. As long as I can get copies of all my tests, it works out great -- I don't have to go to the hospital/clinic all the time, I have a few less needle holes and the insurance company saves a little too.

    I think we all want reassurance that we're ok. The doctor visit gives us a new lease on life -- I think it helps bring the fear factor back down for awhile ... then the longer time between visits you start to wonder again, "am I ok?"

    As far as Spring, I'm in California and we've had pretty amazing great weather for about a month. The sun shining in the morning makes you feel free and alive! ... it's a great way to start the day even if you have to go to work.

    Have a great week
    Patty
  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    #7
    I was very uneasy with the absence of follow-up testing, but trust me here: the idea will grow on you.
    Love,
    Denise

Discussion Boards