No Followup Consequences

tlmac
tlmac Member Posts: 272 Member
edited March 2014 in Breast Cancer #1
Dear Group, Last night I attended my monthly Reach to Recovery meeting and was told, by a good friend, a 45 year old 3 year survivor, that her cancer is back and currently at stage IV. She originally had a 5cm mass with 3 positive lymph nodes. She was ER+ and Her2Nu+ and has been taking Tamoxifen. The doctors think that her cancer traveled "up" into breast bone lymph nodes as well as over into underarm nodes where they found it. The radiation field only hit the underarm. The chemo apparently didn't kill it all and the Tamoxifen was unable to control it. Now it's back above her breast, on her breastbone, in abdominal nodes and in her liver. Her oncologist believed it was unnecessary to order even annual blood tests so she's had no screening since treatment ended in 2001 and she never thought to question that strategy because she had complete faith in her doctor. Leslie's message to us last night was to be assertive and insist on periodic tests. Despite the anxiety they cause us, if caught earlier, this recurrance might not be threatening her life. My oncologist is another one who doesn't believe in "unnecessary" testing and I've been happy with that strategy. I'm rethinking it and wanted to give those of you who hate folowup as much as I do a chance to do the same.
terri

Comments

  • bunnie
    bunnie Member Posts: 233
    #2
    Thanks terri for the thumbs up.I cant belive your doc havent given you any test.Mine was doing blood work every three months.Even though they where though that isnt how they found my cancer is back so make sure you instist on other test also.I havent even been done with chemo a year the first time and mine has came back.Best of luck to everyone Bunnie
  • blessings1020
    blessings1020 Member Posts: 54
    #3
    bunnie said:

    Thanks terri for the thumbs up.I cant belive your doc havent given you any test.Mine was doing blood work every three months.Even though they where though that isnt how they found my cancer is back so make sure you instist on other test also.I havent even been done with chemo a year the first time and mine has came back.Best of luck to everyone Bunnie

    bunnie...If you don't mind my asking, how did they find the cancer the second time? I finished chemo in Sept 03 and am having quite a few difficulties. Former oncologist (through my constant "nagging" and "complaining" ordered testing (gave me the impression he thinks I'm neurotic and a hypochondriac) and even though tests showed hot spot and areas of uptake in 5th rib was telling me there was no "meat" to the tests and they were inconclusive. I have since changed oncologists (have not seen her yet) and I am convinced the cancer is back by the way I feel (have all the classic symptoms again...pain (lots of it), cough, bruising for no reason, etc.). Other oncologist gave me a "clean bill of health" last time I saw him and didn't want to see me again for six months..no bloodwork, no nothing!!!

    I firmly believe we know our own bodies and can tell when something is not right. Granted, when you get the dx of cancer, you feel every little twinge is the beast returning (which is why we have this testing done) but to me, it's better to be safe than sorry.

    Blessings

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