Real or my imagination?

sylva
sylva Member Posts: 80
edited March 2014 in Breast Cancer #1
Since I finished chemo (1 1/2 month ago!!!) and started taking the Tamoxife, I went to the family doctor and new gynecologist to see what baseline check ups or what I need to do, besides going to the oncologist... And they both gave me the same impression of: Ok, here is your diagnosis of breast cancer, now we cannot do any more, if you have bleeding, that's the earliest sign of uterine cancer, you need to come right away to be checked told me the gynecologist. I asked about a preventative check up or sth, she said no. The family doctor looked at me as if I was already "done". Is it real or is this my imagination? Maybe I'm going to the doctors trying to find the magic pill? My oncologist didn't order any pet scan, xray, ultrasound... I feel I'm left to "fate's future". Now I understand what I read one time: We have to be our own advocates.
Maybe this is all fear?? I really don't know what to think about.

Comments

  • RE
    RE Member Posts: 4,591 Member
    #2
    Hello Sylva,

    I first had cancer 11 years ago and back then they did regular MIR & BONE scans. I had my third bout just over a year ago and things have changed. I am now told by my very capable oncologist that the doctors now have a new view that most cancer patients find their own cancers via not feeling well; hence no more regular semi or annual scans. I must admit that I insisted on help this last time which is how they found my cancer (kept telling me I had just an infection. GP not onco). For me it boils down to being extremely aware of how I feel and knowing when it is not right. I have taken the bull by the horns on several occasions to ensure the cancer has not returned. There is blood work and markers that can be checked but I have found I am most responsible for my still being here. Of course once it is found the docs come to the rescue! I hope this does not sound harsh as I do not mean for it too. It just seems the medical community has taken on a new view to annual scans. We must let them know if we think there is a reason for a scan and then we must work the system to ensure we get that scan. Just be mindful of how you feel and go to the doc if you are not doing well. Now CONGRATS on finishing chemo; with time things will look rosier! You are a survivor!!!!! Hugs to you!

    RE
  • sylva
    sylva Member Posts: 80
    #3
    RE said:

    Hello Sylva,

    I first had cancer 11 years ago and back then they did regular MIR & BONE scans. I had my third bout just over a year ago and things have changed. I am now told by my very capable oncologist that the doctors now have a new view that most cancer patients find their own cancers via not feeling well; hence no more regular semi or annual scans. I must admit that I insisted on help this last time which is how they found my cancer (kept telling me I had just an infection. GP not onco). For me it boils down to being extremely aware of how I feel and knowing when it is not right. I have taken the bull by the horns on several occasions to ensure the cancer has not returned. There is blood work and markers that can be checked but I have found I am most responsible for my still being here. Of course once it is found the docs come to the rescue! I hope this does not sound harsh as I do not mean for it too. It just seems the medical community has taken on a new view to annual scans. We must let them know if we think there is a reason for a scan and then we must work the system to ensure we get that scan. Just be mindful of how you feel and go to the doc if you are not doing well. Now CONGRATS on finishing chemo; with time things will look rosier! You are a survivor!!!!! Hugs to you!

    RE

    Thank you for your info!! It's really confusing all these. I expect time will help to live more and worry less.
    And I will remember what you said, not to be on the obsessive side but be alert and if something doesn't "feel" good, insist.
    Prior to being diagnosed w/BC, I knew sth was not good, but I believed in what the gynecologist was telling me. Big mistake I didn't go for a second opinion. Maybe that's why now it's hard for me to believe again in doctors.
    The best for you!
  • chenheart
    chenheart Member Posts: 5,159
    #4
    For the record, I cried just as much at my LAST chemo as my first. The first one made cancer "real", the last made me feel as if I was on a tightrope without a safety net. I am now 5 years out, and still go to see my onco Dr every 6 months. I get labs drawn, and in January I take my last Arimidex. Knowing me, I will cry then too~ another safety net being removed.

    We DO imagine, and mostly we imgaine the worst case scenario! Doesn't make it so, tho does it??? LOL

    Be well, sweet sister~ this is all unchartered territory! But we brave it together which makes the journey sooo much easier!


    Hugs,
    Claudia
  • Eil4186
    Eil4186 Member Posts: 949
    #5
    Sylva, I am on tamoxifen which can cause thickening of the uterine line and/or uterine cancer. My gynecologist does an intravaginal ultrasound every year and recently it showed my lining is thickening. So now he will do a D&C and biopsy. My doctor that does my mammograms insists on doing a yearly MRI because my breast tissue is still very dense. My oncologist does blood work at my 3 month appointments. I think different doctors have different philosophies on maintenance/preventative care and I think it also depends on your own personal history and prognosis.
  • seof
    seof Member Posts: 819 Member
    #6
    It is a hard decision. On the one hand, I think it is normal for survivors to feel somewhat abandoned when treatment is over. On the other hand, it is up to us to do what is in our best interest, and to find a medical team with whom we can feel confident. My Sister had symptoms of recurrence that she recognized, but she went to the Dr. she had gone to with her 1st diagnosis and he told her she just had an infection, but she kept feeling like that Dr. was wrong. 2 months later she went to a different Oncologist (at M. D. Anderson in Houston...a research hospital) and was diagnosed with mets. You know your body...It is better to go to 2 or three Drs. to confirm that you are OK, than to sit around being nervous and uncertain.

    That's my 2 cent's worth, anyway. seof
  • cabbott
    cabbott Member Posts: 1,039 Member
    #7
    I realize surgeons and oncologists are overworked, but usually they manage to see their patients for 3 to 5 years after the final surgery. My surgeon said he would see me for every three months the first two years for breast checks (MUCH superior in finding stuff than your gyn) but he could alternate with the breast oncologist if I was seeing him, which I was. At the end of two years I was supposed to go to every 6 months. At the end of four years I could go to once a year. I'm still taking exemestane as a breast cancer preventative, so I will continue to see my oncologist I think, but I will be asking him about that next week now that I'm at almost 6 years. I saw my primary care physician only once a year for the physical and as needed for emergencies. He does my pap smear now, so I can skip the gyn, whom I otherwise would see only once a year for that physical. That's standard practice. Call your insurance company to see what they recommend if you aren't getting that.
  • tapdance
    tapdance Member Posts: 2
    #8
    I'm five years out and just finished femarra. I am no longer required to go back to my oncologist. He said I could if I wanted or if anytime I just want to return I could. He's very sensitive about that. But I do have that feeling like I'd like to have some kind of checks other than yearly mammos to see if things are ok. I meant to ask for a pet scan or MRI or something to be sure at this marker time that I was really clear. I forgot actually and I might ask later to do that. I only have to have yearly mammograms. I'm now wondering what to expect in getting off the femarra. I remember that it made me achy and hold water when I first started so I'll see if that changes now that I'm finally off of it. I took my lst femarra just this last Sunday. My mother had ovarian cancer and I ask my gynecologist for a yearly ovarian ultrasound, he complies. And I believe my oncologist would order any test I wanted to have just for the reassurance. I'd ask your oncologist about your concerns/fears and hopefully you'll get what you need there. My other doctors don't seem to want to override the oncologist or "touch" the cancer topic too much. Good luck. I'm glad your chemo is over.
  • MommyJ
    MommyJ Member Posts: 3
    #9
    I agree with all the posts you have received. Usually you see the Dr. every 6 mos/year for a check-up and bone scan. (Also a yearly mammo) Whatever makes you feel in control you should do and your oncologist should be able to help. Good luck.

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