Newly diagnosed UPSC...Looking for hope.

MDA45
MDA45 Member Posts: 1
in Uterine/Endometrial Cancer #1
September 4, 2011 was my last chemo treatment for breast cancer. On Spetember 6, 2012 I learned I had uterine cancer (UPSC).

I am scared and had a very hard time telling my family. I am scheduled for a hysterectomy on October 10th.

Despite my doctor's orders, I have been looking on the internet. Based on what I've read, the prognosis seems very dismal. I stumbled upon this website and found many glimmers of hope.

I am an active, busy 73 year old grandmother who wants nothing more than to live long and enjoy my grandchildren.

Please...is there someone out there who can give me hope?

Comments

  • marieinlv
    marieinlv Member Posts: 47
    #2
    Hi, I want to ask you to
    Hi, I want to ask you to inform your family, tell them what you know. You don't know all the answers to there questions, that's ok. Sometimes there isn't a definate answer, like planting a plant, there are many things that will make a diffenence for good and bad. This site is the only place I care to get most of my information. The internet is full of information that we can't understand, and it's old. The treatments are changing all the time. We can do the research, compare information with others. Do have someone you trust with you to help hear the information your Dr gives you. I'm glad my husband went to the visits with me. We wrote Questions down and gave them to the Dr, we marked off the questions one at a time. We came with the answers the nurse would regularly ask, like what medications we were on, any symptoms, the phone/address of our pharmacy. Try to schedule more appts so that we were in the same area/day/times. The appts seem to be very time consuming even annoying to always be leaving for some appt. Be sure to have the tests results sent to your primary and oncologist. I have been NED since May 11. Dx with UPSC lV. We are all different, there are soooo many variables we really can hope and have faith that we will be ok. I wasn't always so sure but this is a time that I feel great. I wish I'd have excercised more after surgery, of course moderately. That was as helpful as I did it. Gods near, talk with him. Marie
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #3
    There is always HOPE!
    Glad you found this site. I do not have UPSC but carsinomasarcoma (use to called MMMT) stage III. It also is a rare cancer. Please do not search the Internet as much of the information is old and outdated. My Gyn Onc told me not to read the Internet too, I think most drs tell their patients that. Each case is different and each person is different, what works for some will not work for others. My big thing was to keep a positive attitude. There are a lot of women on this site that have UPSC and will be able to help more than I can. I am a 1 yr survivor of my cancer with a dx of mine on April 1, 2011. Last chemo was 22 Aug 2011. Still new to the NED club but doing OK. There is always HOPE so do not give up yet. Hang in there. trish
  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #4
    My heart goes out to you.
    My heart goes out to you. Two cancers in as many years. You will get lots of support and education

    on this site. Be sure to go back to older posts. They contain a wealth of information.

    Connie
  • bots
    bots Member Posts: 53
    #5
    MDA
    First of all, Marie has given you some excellent advise.

    Like you, I am in my 70's and have wonderful grandchildren. I do understand the fear, but believe me, there is hope. I was diagnosed with UPSC in early July, 2009. I knew absolutely nothing about uterine cancer except that my gynocologist said it this kind was agressive. She made an appointment to see a gyno/surgeon the next week and I had surgery at the end of July. I was very lucky. My cancer was stage 1b (since reclassified as 1a). My doctor recommended three rounds of chemo based on the number of lymph nodes he took that we all free of cancer as was the wash, etc. The accepted protocol for UPSC is six rounds of chemo plus radiation, so again, I was lucky, but would have undergone both the six rounds and the radiation if he thought it was necessary. I had my last chemo treatment in mid-September, 2009, so I am three years without recurrence. I hope this gives you some hope. My new gyno/surgeon who did research at MD Anderson said that if the cancer didn't recur in two years, it probably wouldn't.

    There is an interesting article in the New York Times today about one type of breast cancer being related to ovarian cancer. UPSC is also related to ovarian cancer. There is so much new being discovered all of the time. And I pray that this new information will help someone with gynocological cancer become NED.

    My best,
    Bots
  • DoonyL7
    DoonyL7 Member Posts: 33
    #6
    Hello
    I am fairly new UPSC diagnosis also 6/25/12. Of course there is hope...I think the hardest thing was all those doctor appointments and writing the same info over and over. Marie gave you useful info. I had a folder I kept all my info, med list, pharmacy,past important medical procedure dates and also cards from other doctors who needed my treatment info. This way I had all my info at my fingertips.
    Forget the internent,most of info is outdated and unless your in medical field info can be difficult to understand. I kept a spiral notebook in my folder. I used to write down questions for doctor and the answers. Dates I had differnet procedures done and where.I also got copies of Lab work particularly C-125 blood test.
    I am scared too. I just put it to the back of my mind for now. I am doing everything I can to fight this cancer. My only grandson is only 2..I so want him to remember me. Besides being scared I am really pissed off. This is not the way I imagined spending my "golden" years. Anyway I'm not about to throw in the towel and neither should you. You keep fighting girl.......L
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #7
    DoonyL7 said:

    Hello
    I am fairly new UPSC diagnosis also 6/25/12. Of course there is hope...I think the hardest thing was all those doctor appointments and writing the same info over and over. Marie gave you useful info. I had a folder I kept all my info, med list, pharmacy,past important medical procedure dates and also cards from other doctors who needed my treatment info. This way I had all my info at my fingertips.
    Forget the internent,most of info is outdated and unless your in medical field info can be difficult to understand. I kept a spiral notebook in my folder. I used to write down questions for doctor and the answers. Dates I had differnet procedures done and where.I also got copies of Lab work particularly C-125 blood test.
    I am scared too. I just put it to the back of my mind for now. I am doing everything I can to fight this cancer. My only grandson is only 2..I so want him to remember me. Besides being scared I am really pissed off. This is not the way I imagined spending my "golden" years. Anyway I'm not about to throw in the towel and neither should you. You keep fighting girl.......L

    My screen name
    is Double Whammy because I was diagnosed with both breast and endometrial cancers 4 days apart! My endo cancer was not UPSC (it was endometroid adenocarcinoma, the common type), but I understand your feelings of dread all too well. I cannot imagine having to have chemo for both breast and uterine cancers. I had it for breast cancer, but because my endometrial cancer was early stage, low grade, I only needed a hysterectomy and followup.

    I just want to wish you the best of luck as you continue with this second surgery and treatments right after the first.

    I also want to comment to DoonyL7. In my small community, all within the past 2-5 years, I personally know 3 women/friends diagnosed with UPSC. We're all the same age (one is a year younger). I'm now 65. I am the only one diagnosed with the "common" type and I don't know anyone else who had it. I just don't think UPSC is as rare as it once was in spite of what the docs say. I wish you well on your jouney as well.

    This group is amazing. Welcome.

    Suzanne
  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #8
    Double Whammy said:

    My screen name
    is Double Whammy because I was diagnosed with both breast and endometrial cancers 4 days apart! My endo cancer was not UPSC (it was endometroid adenocarcinoma, the common type), but I understand your feelings of dread all too well. I cannot imagine having to have chemo for both breast and uterine cancers. I had it for breast cancer, but because my endometrial cancer was early stage, low grade, I only needed a hysterectomy and followup.

    I just want to wish you the best of luck as you continue with this second surgery and treatments right after the first.

    I also want to comment to DoonyL7. In my small community, all within the past 2-5 years, I personally know 3 women/friends diagnosed with UPSC. We're all the same age (one is a year younger). I'm now 65. I am the only one diagnosed with the "common" type and I don't know anyone else who had it. I just don't think UPSC is as rare as it once was in spite of what the docs say. I wish you well on your jouney as well.

    This group is amazing. Welcome.

    Suzanne

    UPSC
    Whether USPC is becoming more common or better diagnosed, maybe there will now be more (any?) research into better treatment. My daughter ran the Montreal marathon last Sun. She wanted to fund raise for UPSC research. She searched and never found anything. She finally directed the $ to Mass General's gyn research lab. She contacted researchers directly and this was the best she could do.
  • DoonyL7
    DoonyL7 Member Posts: 33
    #9
    Double Whammy said:

    My screen name
    is Double Whammy because I was diagnosed with both breast and endometrial cancers 4 days apart! My endo cancer was not UPSC (it was endometroid adenocarcinoma, the common type), but I understand your feelings of dread all too well. I cannot imagine having to have chemo for both breast and uterine cancers. I had it for breast cancer, but because my endometrial cancer was early stage, low grade, I only needed a hysterectomy and followup.

    I just want to wish you the best of luck as you continue with this second surgery and treatments right after the first.

    I also want to comment to DoonyL7. In my small community, all within the past 2-5 years, I personally know 3 women/friends diagnosed with UPSC. We're all the same age (one is a year younger). I'm now 65. I am the only one diagnosed with the "common" type and I don't know anyone else who had it. I just don't think UPSC is as rare as it once was in spite of what the docs say. I wish you well on your jouney as well.

    This group is amazing. Welcome.

    Suzanne

    comment
    Thank you...I am wondering if my particular cancer is having an upsurge in last few years. Best wishes....lorna

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