Not the news we were expecting...

obos
obos Member Posts: 4
edited March 2014 in Gynecological Cancers (other than ovarian and uterine) #1
I wrote last spring about my mother, who had stage IC grade 2/3, complete hysterectomy in June and pelvic radiation (both external and brachy) from August to Sept. Doctors at Mass General gave a 6% risk of recurrence following radiation.

She was feeling good through the fall, though in January started having GI discomfort. I wrote here again to ask about that, and shortly afterward we discovered metastatic spread in the abdominal cavity, mostly on (not in) the liver. This shocked the doctors as much as, if not more than, us.

She started chemo immediately, and is going in for treatment 3 this week (of 6). I believe it's carboplatin and taxol. She's feeling much better, but for fatigue, and carrying on her normal life more or less.

I know recurrence is not good, and tumors on the liver are especially not good. There's no way around that, and we're all still coming to terms with it. I guess I'm writing here to see if anyone can tell me if they know of people who have lived with recurrent endometrial cancer for any length of time. Right now I'm feeling pretty despairing, even though I put on a good face when I'm home. Despite choosing not to hear about averages, my mother has the feeling that she probably has a couple years at best. I don't know if this is true, maybe it is. But it would be nice to feel like it could be longer, and maybe even a good deal longer. Is that miracle territory? Maybe no one here has answers, but it helps me to write and to know you're here anyway.

So, thank you.

Comments

  • groundeffect
    groundeffect Member Posts: 639 Member
    #2
    I'm so sorry to hear about your mother's recurrence! This is a tough row to hoe for anyone, especially when you've had such a good prognosis.

    I was staged with 1B uterine, which wasn't treated after the surgery-but I did have carbo/taxol chemo because I was found to have stage 1C ovarian cancer, also. Because of the ovarian, and what I've learned about it, I've spent a lot of time with a support group.

    Although I'm the only one in the group who had both uterine and ovarian cancers, I do hear a lot about recurrence and the various treatments that are tried for ovarian, and I have to say I'm continually amazed at the fortitude and longevity of the women who are living with ovarian cancer (OVCA).

    My message to you is this: as long as your mom is being given an option for treatment by her doctors and is willing to try it, she's got a lot going for her. While some treatments are a lot harder on the body than others, they may help her live a lot longer, and in a way she's used to living, for the most part.

    I strongly urge your mom to join a gynecologic cancer support group in your area; if there's not a group for gynecologic cancers in general, I'm sure she'd be welcome in an OVCA group. Her current chemo is something they'd be familiar with, and I'll bet any further chemo suggested would fall into their realm of experience, also.

    While this doesn't fall into your wish to correspond with someone who's had recurrent endometrial cancer, it's my best suggestion. The ovarian cancer board on this site is full of chemo advice because ovarian is not usually found until it has spread. I feel I am a very fortunate person to have had both discovered in such low stages.

    Your mom is probably starting to feel pretty low now-the carbo/taxol has a cumulative effect, and the tiredness really gets a bit worse after each treatment, but it will wear off as the chemo gets out of her system. I hope you'll be able to help her maintain her spirits, and I really, really, hope the chemo does a good job for her!
  • hanif
    hanif Member Posts: 8
    #3
    I have endometrial adenocarcinoma, stage 4, ......it was 1st diaognised in july 2005, i had the radical hysteractomy, did 6 rounds of chemo- Adriamycin/Carboplatin.....my oncologist said the cancer was gone.....stopped the treatment and within 4 months it recurred in my pelvic and peritoneum and outside of the liver.....oncologist put me back on chemo regimen with single agent- Taxol....I have been taking taxol for almost 20 6 months....the last CT scan shows progression and thus the taxol is not working anymore.....my oncologist will be discussing with me for another chemo regimen.

    I have heard that people deal with recurrences as well metastatic cancers....as long as your oncologist gives you options, you don't have to worry.

    Please update me on your mom's health......Hoping your mom is doing well....I will keep her in my prayers.
  • deanna14
    deanna14 Member Posts: 732
    #4
    hanif said:

    I have endometrial adenocarcinoma, stage 4, ......it was 1st diaognised in july 2005, i had the radical hysteractomy, did 6 rounds of chemo- Adriamycin/Carboplatin.....my oncologist said the cancer was gone.....stopped the treatment and within 4 months it recurred in my pelvic and peritoneum and outside of the liver.....oncologist put me back on chemo regimen with single agent- Taxol....I have been taking taxol for almost 20 6 months....the last CT scan shows progression and thus the taxol is not working anymore.....my oncologist will be discussing with me for another chemo regimen.

    I have heard that people deal with recurrences as well metastatic cancers....as long as your oncologist gives you options, you don't have to worry.

    Please update me on your mom's health......Hoping your mom is doing well....I will keep her in my prayers.

    Original Stage
    If you don't mind, can I ask what stage your original diagnosis was. I am just starting radiation treatment for Stage IIIC endometrial/serous papillary adenocarcinoma. When I finish radiation I will have 8 cycles of Chemo. I know one drug will be Taxol and he mentioned either another 1 or 2 drugs, I'm not sure which. I had mets to 1 pelvic lymph node. This is all so scary, I am 39 years old and never dreamed of going through this so young. My mom had endometrial CA at 52, cured by hysterectomy. She is now 66.
  • hanif
    hanif Member Posts: 8
    #5
    Not the news we were expecting
    Hello Deanna14,

    the original diagnosis was in july 2005 as stage 4a....it was metastatic to my umbillical, omentum and in my fillopian tube....had a complete radical hyteractomy and went through 6 cylces chemo of adriamycin/carboplatin. In nov 2006, had a recurrence with abdominal metastasis...tumors on top of my liver, peritoneum and pelvic.....have gone went through 20 cycles of chemo for taxol, which has been working well and kept my disease under control...now it is no longer working and am suppose to go with another medication call Caelex or Doxil.....I am 58 yrs old now.

    Deanna, you should not worry, you are young and should be able to fight it out...am told that age and immune system makes a big difference and ofcourse diet and excercise. I will pray for you, if you have any other questions, please do email me back through this thread
  • deanna14
    deanna14 Member Posts: 732
    #6
    hanif said:

    Not the news we were expecting
    Hello Deanna14,

    the original diagnosis was in july 2005 as stage 4a....it was metastatic to my umbillical, omentum and in my fillopian tube....had a complete radical hyteractomy and went through 6 cylces chemo of adriamycin/carboplatin. In nov 2006, had a recurrence with abdominal metastasis...tumors on top of my liver, peritoneum and pelvic.....have gone went through 20 cycles of chemo for taxol, which has been working well and kept my disease under control...now it is no longer working and am suppose to go with another medication call Caelex or Doxil.....I am 58 yrs old now.

    Deanna, you should not worry, you are young and should be able to fight it out...am told that age and immune system makes a big difference and ofcourse diet and excercise. I will pray for you, if you have any other questions, please do email me back through this thread

    thanks you
    Hanif,
    Thank you for answering and thank you for the encouragement. The doctors keep saying that my age and the fact that I am otherwise healthy is in my favor. I hope you are all right.
    Good luck with your new treatment. Stay strong. You will be in my thoughts and prayers. Take care of you!
  • Unknown
    Unknown
    #7
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