question for those who have had reoccurrence

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Comments

  • Becky444
    Becky444 Member Posts: 29 Member
    CA125
    I'm 9 mths out from my initial treatment and have not had a recurrence...to this point. I, too, had no CA125 taken before my surgery so I have no idea if it is a good marker for me. The doctor seems to think it is a good marker & that is what she goes by. I also had her add a HE4 tumor marker in addition to the CA125 for my peace of mind. She wasn't too excited about it at first but looked into it & added that monitoring test as well. She said I was about a year and a half ahead of everyone else requesting that marker. Today I have my 9 mth ckup.

    I wish you the best & continued good health!

    Becky
  • kkstef
    kkstef Member Posts: 688 Member

    1st Time Poster - Mom has METS (long post)
    My Mom had grade 3 endometrical cancer (clear cell and another type - both estrogen/progesterine receptors). She went over a year with vaginal bleeding and her PCP said she had a bladder infection and vaginitis! If she had gone to GYN when bleeding started she wouldn't have been a gr 3. Anyway, fast forward almost 5 yrs and mom is bedridden with slurring words/dizziness/nausea/vomiting/blocked ears. I call her doc as soon as I sense slurring in her words and want him to see her asap in case she had a mild stroke. So she goes and PCP diagnoses her with 1) ear infection; didn't get better 2) then allergies (because of all her coughing complaints over the summer); didn't get better with allergy meds so he finally said 3) Vertigo - just deal with it. So after nearly 5 weeks of being bedridden and eventually dehydrated/confused and losing bodily functions I called the Ambulance as she was incapable of even crawling to the car. Once in the ER they found her heart in arrythmia, which prompted a chest xray where they found a huge mass in her lung, which prompted further testing a biopsy. While in the hospital waiting for the results and dealing with the heart rythm issue, the hosp doc thought she had lung cancer. But I still was concerned about her cognitive ability - she wasn't "right". Well 5 days later, she complained of a headache - literally, the doctors all turned at looked at each other - rushed her in for a CTScan and called head of Neurology in on a Sunday. He performed and read the scan and within minutes was rushed in for surgery to removed a 5cm brain tumor that was blocking the passage of fluid thru her brain - she was at risk for herniation and certain death if the surgery wasn't performed. Surgery was text book and there shouldn't be lasting side effects. She immdiately began to improve - her dizziness/nausea and slurring improved right away. It took another few days to get the biopsy results back - but when they did, the cancer was her Endometrial Cancer which mets to brain and lung. Her treatment is 3 weeks of radiation to the head (she ends that on Tues) then the Monday before T'giving begins Chemo (Taxol/Carboplatin)for 3 treatments. She responded well to that cocktail originally so they will attempt again. Now for those who are reading this - my Mom did NOT keep her followup appointments!!! In fact she hadn't seen her Onc for over 2 yrs. Had she gotten her follow up tests, she may not be in this sitsuation. She is a young 72 yr old who takes care of her 92 yr mother - which I have somewhat taken over. Mom was just released from Nursing home back to her house. I take her to treatments and help with meals. I don't have any siblings to rely on and Mom isn't married, so I have alot of responsibility. Luckily I hve a flexible job and live closeby.

    The docs have said she has an average of 1 yr survival rate. Anyone else have this happen or have a realistic idea of survival?

    Sorry for the long post!
    my email is choclabs@sbcglobal.net

    Leslee
    Leslee, I am so sorry to hear about your Mother's encounters with the medical establishment. Unfortunately her PCP seems to be totally incompetent. In addition, I would have thought she would have inquired about follow-up re: your Mom's uterine cancer! Am hoping that you find a new PCP!

    It is unfortunate that your Mom didn't do follow-up with her oncologist, but for whatever reason, she didn't and there is nothing to do about that NOW. Thank goodness you called an ambulance and got her to the hospital and she finally got diagnosed, although the outcome is not so good.

    I have no idea how long your Mother has left....no one does. BUT, the best thing you can do is continue your support. You are obviously very committed to helping here and that is the biggest gift you can give your Mom. Just support her through her treatments and try to focus on enjoying each day that you have you together. Laugh, Love and Live!

    Please keep us informed about how you are all doing and don't hesitate to ask questions or just use this discussion group to vent.....we all understand!

    Blessings to you!!

    Karen
  • LesleeInCT
    LesleeInCT Member Posts: 2
    kkstef said:

    Leslee
    Leslee, I am so sorry to hear about your Mother's encounters with the medical establishment. Unfortunately her PCP seems to be totally incompetent. In addition, I would have thought she would have inquired about follow-up re: your Mom's uterine cancer! Am hoping that you find a new PCP!

    It is unfortunate that your Mom didn't do follow-up with her oncologist, but for whatever reason, she didn't and there is nothing to do about that NOW. Thank goodness you called an ambulance and got her to the hospital and she finally got diagnosed, although the outcome is not so good.

    I have no idea how long your Mother has left....no one does. BUT, the best thing you can do is continue your support. You are obviously very committed to helping here and that is the biggest gift you can give your Mom. Just support her through her treatments and try to focus on enjoying each day that you have you together. Laugh, Love and Live!

    Please keep us informed about how you are all doing and don't hesitate to ask questions or just use this discussion group to vent.....we all understand!

    Blessings to you!!

    Karen

    Thank YOu Karen
    Oh Yes - we plan on getting a new PCP - he is 85 and even in his early days was never a very proactive doctor, very passive about treatments (even for HBP) and never overly concerned with her being overweight.
    She actaually went for her checkups with her Gyn Surgeon but the last couple of years felt "afraid" to go to her Oncologist - it was always one excuse after another and my mom being a bit Agraphobic hated the thought of driving into the city to the appointments, and I couldn't always find the time with a high pressure FT job and 3 small kids at home. I sometimes feel a bit guilty about allowing her to go over a year with bleeding before I demanded her to go to a gyn (and get her first mamogram at 67!). But she needs to take responsibility for herself and be her own advocate. Since this has all happened, I've gotten her legal stuff (and my grandmothers) coordinated with the lawyers (wills, living wills, PAO, Conservator etc) and got appointment with an insurance agent (because she never bothered looking into Medicare Part c/d/g herself) I feel like Im the mother and she sits back and is completely happy with this arrangement. In fact she insists on using a wheelchair at the hospital for her treatments even tho her PT doesn't want her to as she is supposed to be getting her strength back. She also gets severe mood swings which I suppose is due to the diagnosis and her way of fear coming out. She gets bad anxiety too - we (me and docs) trying to get her on an anti-depressent so she doesn't get these radom panic attacks. Im trying to do for her what is "needed" and not just what she wants or guilts me into - because I will lose my job and family and continue to enable her (which is another problem in the family and the reason she still lives with her 92 yr old mother. But thanks for listening while I vent
  • cathyK
    cathyK Member Posts: 93
    update
    well got my phisical, ultrasound test and ca 125 , no detectable cancer ca 125 has been 10 to 20 .
    thanks every one for your prayers, , so now , 1 year cancer free, was told by doc one 95% chance of recrurance , so again I say, I am striving for the 5% :) praying for ya all
    cathy k
  • kkstef
    kkstef Member Posts: 688 Member
    cathyK said:

    update
    well got my phisical, ultrasound test and ca 125 , no detectable cancer ca 125 has been 10 to 20 .
    thanks every one for your prayers, , so now , 1 year cancer free, was told by doc one 95% chance of recrurance , so again I say, I am striving for the 5% :) praying for ya all
    cathy k

    Great news, Cathy
    Hi Cathy....such wonderful news! Thanks for letting us know the outcome of your visit with your Dr.

    Celebrate and keeping dancing with NED!!

    Best wishes always!

    Karen
  • daisy366
    daisy366 Member Posts: 1,458 Member
    kkstef said:

    Great news, Cathy
    Hi Cathy....such wonderful news! Thanks for letting us know the outcome of your visit with your Dr.

    Celebrate and keeping dancing with NED!!

    Best wishes always!

    Karen

    wonderful news, Cathy
    Here's to that 5%!!!! Enjoy dancing with NED!!

    Mary Ann
  • kansasgal
    kansasgal Member Posts: 122 Member
    cathyK said:

    update
    well got my phisical, ultrasound test and ca 125 , no detectable cancer ca 125 has been 10 to 20 .
    thanks every one for your prayers, , so now , 1 year cancer free, was told by doc one 95% chance of recrurance , so again I say, I am striving for the 5% :) praying for ya all
    cathy k

    Cathy - Thrilled to read your update!
    Yep - I'm envisioning you leading the 5% survival group! What great news! I've been watching for your post.

    Hugs from Sally
  • maggie_wilson
    maggie_wilson Member Posts: 596
    cathyK said:

    update
    well got my phisical, ultrasound test and ca 125 , no detectable cancer ca 125 has been 10 to 20 .
    thanks every one for your prayers, , so now , 1 year cancer free, was told by doc one 95% chance of recrurance , so again I say, I am striving for the 5% :) praying for ya all
    cathy k

    pleeze--don't go by the statistics your doctor gave you
    cathy,

    great news on your tests, cathy. read the anti-cancer book re: statistics; they just don't make sense for individuals. period. so just keep on truckin' like you have been; sounds like everything is going to be all right.
    sisterhood
    maggie
  • Always Hopeful
    Always Hopeful Member Posts: 234
    cathyK said:

    update
    well got my phisical, ultrasound test and ca 125 , no detectable cancer ca 125 has been 10 to 20 .
    thanks every one for your prayers, , so now , 1 year cancer free, was told by doc one 95% chance of recrurance , so again I say, I am striving for the 5% :) praying for ya all
    cathy k

    EXCELLENT, Cathy!
    What wonderful news...you go, Girl! Keep doing what you are doing and lead the way to demolishing statistics!

    Peace and hope, JJ
  • Always Hopeful
    Always Hopeful Member Posts: 234
    Becky444 said:

    CA125
    I'm 9 mths out from my initial treatment and have not had a recurrence...to this point. I, too, had no CA125 taken before my surgery so I have no idea if it is a good marker for me. The doctor seems to think it is a good marker & that is what she goes by. I also had her add a HE4 tumor marker in addition to the CA125 for my peace of mind. She wasn't too excited about it at first but looked into it & added that monitoring test as well. She said I was about a year and a half ahead of everyone else requesting that marker. Today I have my 9 mth ckup.

    I wish you the best & continued good health!

    Becky

    How was your checkup?
    Dear Becky,

    Hoping your checkup went well. Let us all know.

    Peace and hope, JJ
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    cathyK said:

    update
    well got my phisical, ultrasound test and ca 125 , no detectable cancer ca 125 has been 10 to 20 .
    thanks every one for your prayers, , so now , 1 year cancer free, was told by doc one 95% chance of recrurance , so again I say, I am striving for the 5% :) praying for ya all
    cathy k

    Hooray for you! I am
    Hooray for you! I am thrilled with your news and for you. Keep on dancing!

    Hugs and prayers to you!

    Kathy