New to board- curious about mets

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Hello. My mom was diagnosed with UPSC almost 3 years ago. She had a hysterectomy & removal  F all pelvic lymph nodes. They did not recommend chemo or radiation. They have been monitoring with scans. Recently she had me feel a lump that appeared on her chest. I called her oncologist & asked that they move up her scans BC she wasn't scheduled to have her next ones until October. She had them done today @ we added a brain scan as well. I'm just wondering with recurrence, what type of mets people have experienced & how their treatment went. AND... have you been having CTs, Pet scans, just wondering. I am trying to be as informed as possible when I go wth her for her results this week. It seems so hard to find much of anything out there about this type of cancer. 

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  • pinky104
    pinky104 Member Posts: 574 Member
    edited August 2017 #2
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    Mets

    When I first had this cancer in 2010, it was stage IVb.  I had mets to both ovaries, the omentum, and a very small amount in the small intestine.  I did have CT scans for a little while, maybe the first year and a half.  Then in 2014, I complained of pain.  I hadn't had a CT recently, so my family doctor ordered one.  It showed a very small mass in the paracolic gutter.  I then went for a PET scan, which showed the same thing.  My GYN/onc said it was too small to biopsy, that he wasn't sure if he could even find it if he went in through my side.  He did a CT scan at 3 mos., 6 mos., and a year from then, and the thing hadn't grown.  If anything, it looked a little smaller.  He decided it couldn't be cancer because cancer always grows.  He stopped doing scans.  My CA-125 went up a slight bit last year, and a little more in Feb. of this year, but I was being told my two different doctors' offices (GYN/onc and a separate oncologist in another hospital) that it was nothing to worry about, as it was still in the normal range.  Then the mass grew like crazy in a two and a half month period, wrapping itself around my ascending colon.  Surgery found it on the outside of the colon, in the paracolic gutter, and in the peritoneum.  In my first surgery, nothing was found in my lymph nodes.  In the last one, something was.  I remember reading on here years ago that this cancer (UPSC) tends to spread laterally, so that's how it got into my other abdominal areas, I guess.  Once, when I had hip pain many years ago, I was checked for a mets to the bone, but it wasn't found, and my orthopedic surgeon said that it's rare for uterine cancer to go to the bone.   I had a hip X-ray at that time that came out negative.  When I had my surgery this year, the cancer had gone into my muscle and was a short distance from the hip.  I had strange numbness in my thigh, which a neurologist had told me (about six months before) was caused by wearing my clothes too tight.  I had tightened my belt a little more than usual around that time and I'd been wearing leggings.  When the numbness didn't go away in the six months he'd told me, I started to wonder if it really was the paresthetica meralgia he'd diagnosed.  A couple of months after, I found that the cancer was pinching the nerve as it grew towards my hip.  I will have that numbness for the rest of my life, I'm told.

    I know I've previously seen people write on here about mets to the lungs and I think I've seen also the brain once or twice.  I know there have been other places mentioned, too, but I can't recall what they were right now. 

    My chemo has been working.  My CA-125 is down to 7.9 and the tumor was a third of its size at my last PET scan on 7/21/17.  I did Carboplatin and Taxol the first time and I've been doing Carboplatin and Gemzar this time.  I had an allergic reaction to the Carboplatin this past week (my 11th time of having that drug in the last 7 years), so I don't know if I'll be given that along with some Benadryl at my next visit when I'm supposed to have the Carboplatin or if I'll be given another drug.  I'm scheduled to just have the Gemzar this week.  Then I have a week off and start the next round  with whatever two drugs they decide to give me (Gemzar will be one of them) and the following week, I'll have Gemzar alone again.

    I hope this information helps.  Tell your Mom I wish her good luck.

  • kme
    kme Member Posts: 1
    edited September 2017 #3
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    new to site -- UPSC

    Hello -- writing for/about my mom -- diagnosed about 2 years ago with UPSC...Stage IV - chemo followed by radical hysterectomy...recent CT scan (2 weeks ago) after 6 monhts of monthy DOXIL, cancer has "innumberal" mets in lungs -- radiation/surgery, not an option per oncologisty... 9/11/17 began weekly, agressive, treatments of TORISEL -- in 2-3 months, oncologist will run another CT scan... why do I write?  looking for any insights -- thank you so much...

     

  • ConnieSW
    ConnieSW Member Posts: 1,683 Member
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    Welcome, kme

    I am so sorry for you and your mom. I don't recall anyone on this site mentioning torisel. I looked it up and see it's used for kidney cancer. I wonder if you went to their board and asked if anyone has been on it, if you might get good firsthand info about it. We do cross boards here and that is a very active one.