Desperately need information, whether bad or good.

redtail69
redtail69 Member Posts: 1
edited November 2014 in Uterine/Endometrial Cancer #1

Hello.  My Mom (70 yrs. old) was recently diagnosed with uterine cancer by having a D and C.  She has already had a total hysterectomy and fallopian tubes, lymph nodes etc. were all removed Oct. 6, 2014.  She was told it was clear cell cancer, Grade 3A.  If she was told what stage, I am unaware.  Can anyone tell me what this means for her prognosis? I've called her surgeon and of course they can't tell me anything.  She won't ask any questions as she is terrified and "doesn't want to know".  Aaargh!!!  She is scheduled to see her Dr. again Nov. 19th, was told they would be scheduling her chemo treatments then.  Supposed to be 6 treatments total, every 3 weeks, folowed by radiation.  The Dr. did say they would be using the "least toxic" chemo drugs.  Does anyone have any information or been through this themselves?  I am terrified also.  Thank you, Wendy in GA.

Comments

  • bluesmama
    bluesmama Member Posts: 125 Member
    #2
    Hey there.

    Sorry to hear about your mother. I understand your mother is frightened. I sure was when I heard, "you have cancer" from my doctor. The good news, this is a wonderful forum and resource for information. I don't know much about the cancer your mother has but there is some information about it on this website at least.

    http://www.cancer.org/cancer/endometrialcancer/detailedguide/endometrial-uterine-cancer-what-is-endometrial-cancer

    I'm not entirely sure I'm right here, but the "Grade 3A" sounds more like the stage of the cancer. The "A" is what caught my attention. Endometrial cancers are grade 1, 2, or 3. Staging can run the gamut from 0, 1A, 1B, etc... 3A etc.

    Have you gone with your mother to the doctor's appointments? Ask her if you can accompany her if at all possible. I didn't allow anyone come with me but after the operation and for follow-ups visits to the doctor, i did allow a friend to come with me and she had many more questions than I did! Sometimes, it's nice to have another person with you so they can ask all the questions and raise concerns too. It's hard enough to show up as a patient. If your mother doesn't allow you to go, can you ask to review her surgical and  pathology reports from the doctor's office? Some of your questions should certainly be answered in these reports and should have been given to your mother during the first post-surgery follow up. If not, she can request copies of them.

    I didn't have chemo/radiation but many women on these boards have and should be able to provide you some feedback about the kinds of therapies, effects, etc.

    Hang in there. I know it's a scary time for you and your mother. Take one day at a time.

  • It happened to Me
    It happened to Me Member Posts: 206 Member
    #3
    Wendy, Sorry to hear about your mom.

    My mom is 77 and I would be in the same position as you.  I was diagnosed with Stage 3A Grade 3 Uterine Papillary Serous Carcinoma, a rare form of Uterine Cancer.  You'll have to look up clear cell, but I think it might be a more aggressive kind.  Mine is aggressive.  I didn't have radiation or brachytherapy but I did have six rounds of chemo. every 21 days.  My surgery was July, 2013, my chemo. started Aug. 2013 and ended in Jan. 2014.  I am currently No Evidence of Disease. 

    I have heard of stories where some women who have the most aggressive cancers and poor prognosis' are still around after 5, 6, 11 years, so remember that your mom is a statistic of one.  Lifestyle, health, and most important attitude will get you through. 

    This is a great group to lean on.  They will be your cheerleaders, a shoulder to cry on, encouragement and anything else you need.  I hope that you can go to the doctor's appointments with your mom.

    Write things down, ask lots of questions.  I wish the best for you and your mom.  Tell your mom she is in the Peach Sisterhood and we are here for her as well.

    Jeanette

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #4

    Sorry to hear about your Mother.  it is understandable that your Mother is terrified.  It is very scary to hear those words " you have Cancer".   Then to hear you need treatment.  Not knowing how one will react to the treatment is also scary.  More than likely she will receive Taxol and Carboplatin as her chemo drugs.  She will also recieve steroids and medicine to help prevent nausea.  It will be important for your Mother to drink lots of fluids.  Sometimes the chemo drugs cause constipation, so she may need a stool softener like colace, or a lot of people take Miralax.  I used Apple juice before the treatment and after the treatment.   She will be given meds to help with nausea days after the chemo.

    Wendy it is normal for you to be "terrified" also.  We often think that having Cancer is a death sentence, but they have made so many advances in cancer treatment.  It has been 6 years since I heard those dreaded words"you have cancer.  I have been through chemo three times and just had intense radiation to a lymph node close to my trachea.  I continue to live large and enjoy each day.  So we are all different.   Don't read statistics on the Internet.  It is outdated information.

    i hope your Mother will join this board.  We have experience with what ever feelings she might be feeling.  It is a Good place to vent, too.   There are no questions that cannot be asked either.

    i hope your Mother's first chemo treatment goes well.  I know for myself chemo was not as bad as I anticipated.  I also had 28 radiation treatments with my first round of chemo.  There is no pain with the radiation treatments.  It is just that you have to go Monday through Friday for the treatments that last about 10 minutes.

    come back with any questions you may have.   I believe a cancer diagnosis is just as hard on the family as it is on the person who has the diagnosis.  In peace and caring.

  • MarianneMushroom
    MarianneMushroom Member Posts: 3
    #5
    My Experience

    Hello! I have uterine papillary serous carcinoma. Clear Cell and upsc are the same grade - grade 3. The ACS site says grade 3 uterine cancers have "poorer outcomes" but that doesn't mean we all have a poorer outcome. Many people here have done very well. I hope I do.

    I was diagnosed a year ago at age 62. I had my hysterectomy et al before Christmas last year. My stage is Ia - just a single polyp attached to the endometrium.

    I began chemotherapy in January with carbo/taxol every three weeks for six cycles. Each 3-week cycle begins with the chemotherapy. I had "sandwich" therapy with vaginal radiation (brachytherapy) between cycles 3 and 4. If you look online, you will find info re the benefits of having the radiation in the middle rather than at the end. At least that's what I found re treatment for my cancer, and that's what my gynecologist oncologist and radiation oncologist recommened.

    My husband went with me to every appointment. A cancer diagnosis causes lots of stress that makes it more difficult to hear everything and ask questions. I also kept a little notebook with questions and answers because I would forget. As I experienced chemo, radiation and various side effects, my ability to hear and understand got worse. I really, really needed somebody with me to help remember what happened, what was said, what the answers to questions were. And my husband asked great questions I forgot to ask. So - it's a good idea for somebody to go to appointments with your mother.

    We were all terrified. Cancer is really, really scary. But you cannot maintain that state of terror forever. Know that you will feel less terror when you know more. I takes awhile for that initial terrifying shock to settle into a managable worry, but it will.

    Read the info at the ACS site. Start with the explanation of endometrial cancer and continue from there. It will explain grades and stages, treatments and follow-up. Knowledge is power.

    Good luck to you, your mother and your family.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #6
    Wendy, you got lots of good

    Wendy, you got lots of good advice already.  Maybe your mother would like to come and "meet" us.  She can ask whatever she wants - there are lots of fantastic women here and it was so helpful to me. 

     

  • pinky104
    pinky104 Member Posts: 574 Member
    #7
    Another experience

    I have another grade 3 cancer, UPSC, which is supposed to have a 5 to 10% survival rate for stages II to IV, from what I have read.  I have stage IVb, the worst stage, and I am still alive four and a half years since surgery.  My cancer was in the uterus, both ovaries, the omentum and the small intestine.  I feel fine, but I have a pea-sized mass that I am probably going to have to get removed one of these days.  The doctor is waiting for it to grow big enough to find in surgery.  I go for a CT scan on November 25 and my next doctor's appt. is on December 8.  I had 6 rounds of Carboplatin and Paclitaxel chemotherapy, three weeks apart, which wasn't all that bad, after surgery.  I did get a little pale and anemic for awhile, which improved after a blood transfusion (my third after surgery).  I was short of breath walking through stores, but I just stopped and caught my breath and went on.  My appetite diminished, but I forced myself to eat.  I took a drug called Emend before each round of chemo, and that kept me from getting nauseous or vomiting.  The Benadryl and other drugs they gave me at the start of each chemo made me feel like I'd had a couple of drinks of alcohol and had gotten "high."  My biggest complaint about chemo was losing my hair.  The surgery was worse for me than the chemo, and your Mom has already gotten through the surgery.  I'd always expected the chemo to be awful from what I'd read and heard on TV, but it just wasn't.  The cancer center nurses at my hospital were wonderful people, and I enjoyed visiting with them. I think your Mom will probably find things a lot easier than what she expects.  My strategy, if you want to call it that, was to expect the worst, and things can either be what you expect or better.  There will be no surprises.  I hope she does as well as I have.  Tell her not to let her worry get her down. Make sure she's vigilant after it's all over with so she can catch any recurrences early and get them treated while they're still small.  Good luck to her (and you).    

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