Next step coming soon

laura25
laura25 Member Posts: 181 Member
in Uterine/Endometrial Cancer #1
Just had my lastest PET scan and was told all is clear. I wz dx with stage 3c/grade 3 adenocarincoma back in January. It spread to one pelvic lymph node which the dr said was huge. I just finished my 7th carbo/taxol and will be receiving an 8th round next month. My dr told me they have been able to hit me hard and aggresive because of my age and physical health.
Even with this good news, the thought of treatment coming to an end and living with the unknown scares me. My dr told me I am in a high risk group for recurrence since this was grade 3. I hate worrying about something that may or may not ever happen. My dr said the first 2 years are when the highest rate of recurrence happens. Are there others out there who have been told the same?
Cancer sucks!

Comments

  • kanary01
    kanary01 Member Posts: 21
    #2
    I was told
    also that the first 2 years are when the highest rate of recurrence occurs. I have had some scares but no recurrence..I will be 2 years out of treatment Nov.1, 2011. I had stage 3a Grade 11 Endometriod adencarcinoma..Since they did not take any nodes out during surgery. We treated it as a 3C very aggresively with chemo and rad to pelvis, stomach and internal. I think mentally we are always waiting for the other shoe to drop...I know I am totally paranoid when I get a cough, or a pain anywhere. The week before I am to go for 3 month visits I am totally consumed by what if...but from everyone I have spoken to it is normal to feel that way....
    Mary
  • Rewriter
    Rewriter Member Posts: 493 Member
    #3
    kanary01 said:

    I was told
    also that the first 2 years are when the highest rate of recurrence occurs. I have had some scares but no recurrence..I will be 2 years out of treatment Nov.1, 2011. I had stage 3a Grade 11 Endometriod adencarcinoma..Since they did not take any nodes out during surgery. We treated it as a 3C very aggresively with chemo and rad to pelvis, stomach and internal. I think mentally we are always waiting for the other shoe to drop...I know I am totally paranoid when I get a cough, or a pain anywhere. The week before I am to go for 3 month visits I am totally consumed by what if...but from everyone I have spoken to it is normal to feel that way....
    Mary

    I am 2.5 years out
    of treatment (carbo/taxol and brachytherapy) for UPSC; and my oncologist told me that after 2 years, the risk of recurrence goes way down. I am becoming less paranoid, but I still am very anxious for a few weeks prior to my checkups.

    Jill
  • kkstef
    kkstef Member Posts: 688 Member
    #4
    Next step
    Laura,

    I was diagnosed with Grade 2/3, Stage 3A adenocarcinoma in June of 2008... I understand your anxiety! I had no lymph nodes removed, but since the cancer had eroded through the uterus, they assumed there was cancer cells floating about I had chemo and radiation. (I only had 5 rounds of chemo as couldn't tolerate it very well.)

    I remember when my chemo ended I felt like I was just released to space....it was frightening. In spite of having check ups and pap smears every 3 months I felt at loose ends. And so I needed to discover my "new" normal. I found this site (wish I had found it sooner) and got busy and read everything I could to stay well, got involved in Yoga and other exercise classes, etc... And so far, so good....NED!

    Yup...cancer sucks, but darn it...we are stuck with it and so we move on. I am sending you positive energy to help you be NED for as far into the future as we can see!

    Hugs, Karen
  • susafina
    susafina Member Posts: 131
    #5
    kkstef said:

    Next step
    Laura,

    I was diagnosed with Grade 2/3, Stage 3A adenocarcinoma in June of 2008... I understand your anxiety! I had no lymph nodes removed, but since the cancer had eroded through the uterus, they assumed there was cancer cells floating about I had chemo and radiation. (I only had 5 rounds of chemo as couldn't tolerate it very well.)

    I remember when my chemo ended I felt like I was just released to space....it was frightening. In spite of having check ups and pap smears every 3 months I felt at loose ends. And so I needed to discover my "new" normal. I found this site (wish I had found it sooner) and got busy and read everything I could to stay well, got involved in Yoga and other exercise classes, etc... And so far, so good....NED!

    Yup...cancer sucks, but darn it...we are stuck with it and so we move on. I am sending you positive energy to help you be NED for as far into the future as we can see!

    Hugs, Karen

    I am With You
    Hi Laura, and I agree with you cancer does suck big time!!! I also am stage 3C grade 1. This past week marks 1 year since the end of treatment. But I still cringe each check up. My docs also say that the first 2 years are the most crucial. I am facing a CT scan next week and remain as nervous as the first time.
    But as Karen says we are in this situation together and we are warriors and together we are stronger and we will win! I hope and prqay that you will continue to dance with NED and that we will all be dancing with you!!
    SUE
  • laura25
    laura25 Member Posts: 181 Member
    #6
    kkstef said:

    Next step
    Laura,

    I was diagnosed with Grade 2/3, Stage 3A adenocarcinoma in June of 2008... I understand your anxiety! I had no lymph nodes removed, but since the cancer had eroded through the uterus, they assumed there was cancer cells floating about I had chemo and radiation. (I only had 5 rounds of chemo as couldn't tolerate it very well.)

    I remember when my chemo ended I felt like I was just released to space....it was frightening. In spite of having check ups and pap smears every 3 months I felt at loose ends. And so I needed to discover my "new" normal. I found this site (wish I had found it sooner) and got busy and read everything I could to stay well, got involved in Yoga and other exercise classes, etc... And so far, so good....NED!

    Yup...cancer sucks, but darn it...we are stuck with it and so we move on. I am sending you positive energy to help you be NED for as far into the future as we can see!

    Hugs, Karen

    Thanks
    You worded it perfectly... released into space, that is exactly how I feel!
    I keep reading this quote that I cut out of the paper "It ain't never no use puttin up your umbrella till it rains.... so for now I will keep my face in the sunshine and hope never to use that umbrella.
    Thanks all!
  • kkstef
    kkstef Member Posts: 688 Member
    #7
    laura25 said:

    Thanks
    You worded it perfectly... released into space, that is exactly how I feel!
    I keep reading this quote that I cut out of the paper "It ain't never no use puttin up your umbrella till it rains.... so for now I will keep my face in the sunshine and hope never to use that umbrella.
    Thanks all!

    Laura
    I like that quote....Yup....keep you face in the sunshine!

    I honestly did feel at loose ends....what now? What do I look for? When you are actively experiencing chemo/radiation, you feel like you are doing "something"...then all of a sudden, the strings are cut and you are out there floating!

    May you dance NED forever!

    Karen
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #8
    kkstef said:

    Laura
    I like that quote....Yup....keep you face in the sunshine!

    I honestly did feel at loose ends....what now? What do I look for? When you are actively experiencing chemo/radiation, you feel like you are doing "something"...then all of a sudden, the strings are cut and you are out there floating!

    May you dance NED forever!

    Karen

    frightening
    It is very fear-inducing to be "out there floating" and "in charge" of detecting changes/symptoms that might mean recurrence....and not trying not to worry about every little ache and pain. I was sure I had something terribly wrong in the lymph node under my ear. Saw my family doctor yesterday and the verdict....wax in ear! She poked around for a minute and made me better.

    Oh, that everything could be so simple.
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #9
    kkstef said:

    Laura
    I like that quote....Yup....keep you face in the sunshine!

    I honestly did feel at loose ends....what now? What do I look for? When you are actively experiencing chemo/radiation, you feel like you are doing "something"...then all of a sudden, the strings are cut and you are out there floating!

    May you dance NED forever!

    Karen

    the week before
    that week before a CT scan is the scariest time of all. My next one is not for 6 months (instead of 3) which is really frightening. I would actually like to have one once a week!
  • laura25
    laura25 Member Posts: 181 Member
    #10
    JoAnnDK said:

    frightening
    It is very fear-inducing to be "out there floating" and "in charge" of detecting changes/symptoms that might mean recurrence....and not trying not to worry about every little ache and pain. I was sure I had something terribly wrong in the lymph node under my ear. Saw my family doctor yesterday and the verdict....wax in ear! She poked around for a minute and made me better.

    Oh, that everything could be so simple.

    LOL
    Thanks for the laugh! You're right if only things could be that simple! I really have moments that I have it all together. But then it comes to checkup and scan time and I fall apart. From what you have all wrote this is my new normal.
    But today I am packing up and spending the day with my daughter and husband out on the boat and enjoying today.
    Thanks Karen for your kind words, you are a very sweet person!
  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #11
    2 yrs
    I also was told that if my endometrial cancer came back it would be most likely within 2 yrs. I try not to think about it. It is hard to live in 3 month check up cycles.
    Lori
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #12
    Hi Laura:
    I was diagnosed
    Hi Laura:

    I was diagnosed with Grade 2/Stage ii/iiia adenocarincoma back in September of 2005. I elected to do the carbo/taxol route but was allergic to taxol. So I had carbo/gemzar. I was 45 years old then. Although all of my CT Scans, PET Scans, MRI, have come back negative, I did have a positive biopsy which I had surgery for in 2010 which ended being negative except for one lymph node that was removed which showed microscopic cells for which no treatment was given since it was removed.

    I assume that you will be finished with chemo after the 8th one?

    You are right, though. Being NED (no evidence of disease) can play on your mind at times. Everyone gets those days and you just have to push it out of the way even though it still is in the back of your mind. Then when you have your checkups, the nerves come into play until the checkups keep getting further apart.

    Yep, cancer sucks!

    My best to you!

    Kathy

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