Roll Call For UPSC only

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debrajo
debrajo Member Posts: 1,095 Member

Would like to find out the number of women on here who have UPSC, stage, NED or not yet status, age at discovery, and treatment.  For such a "rare" cancer, there seems to be quite a few of us on here and showing up recently.

Debra, Vidor, Texas, 57.6 years at dx.,UPSC 1a/b, grade c, treatment at M D Anderson in Houston, six rounds Taxol/Carboplatin, five rounds of internal radiation. As of May 14th, CA125 is 15.8, NED 4 years.   Just UPSC ladies for now.  Thanks, Debra

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  • DebiR
    DebiR Member Posts: 38 Member
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    Debi, North Olmsted, OH, 56.5

    Debi, North Olmsted, OH, 56.5 years at dx, UPSC 3A (positive ovaries, pelvic wash), grade 3.  Treated at University Hospitals, Cleveland, OH.  Currently in trial GOG-0258 and treatment is 6 rounds of Carbo/Taxol that started 7/16/14. 

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    UPSC

    Cathy from Vero Beach, Florida, 60-years-old when diagnosed, UPSC Stage 3A (spread to one ovary with positive pelvic washings, no cancer in lymph nodes), as of 8/8/14 CA-125 is 11, NED for almost 5 months.  As you all know, UPSC is always a Grade 3 cancer.  Six rounds of Taxol/Carboplatin, no radiation treatment. I am feeling great!

  • Pat51
    Pat51 Member Posts: 130
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    Pat from Berlin, WI

    I have UPSC.  I was 59.6 years when diagnosed.  I was diagnosed in Feb. 2011 with UPSC Stage 1B (I think I may be a Stage 1A on the newer charts)  I had a radical hysterectomy, 6 carboplatin,taxotere chemos and then 3 brachytherapy internal radiation treatments.  My CA125 in July 2014 was 15.2. (CA125 was 27 at the time I was diagnosed.)  I had surgery at Theda Clark Medical Center, Neenah, WI , chemo at Martha Seikman Cancer Center, Appleton, WI and radiation at the University of Wisconsin Clinics, Madison, WI.  I finished treatment in September, 2011.   I have been NED for almost 3 years.

    Feeling very blessed at this time.

    Pat

  • Ro10
    Ro10 Member Posts: 1,561 Member
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    Abbycat2 said:

    UPSC

    Cathy from Vero Beach, Florida, 60-years-old when diagnosed, UPSC Stage 3A (spread to one ovary with positive pelvic washings, no cancer in lymph nodes), as of 8/8/14 CA-125 is 11, NED for almost 5 months.  As you all know, UPSC is always a Grade 3 cancer.  Six rounds of Taxol/Carboplatin, no radiation treatment. I am feeling great!

    UPSC Stage 3-C

    At age of 60 I Had surgery 1/09.  No symptoms.  Had abnormal PAP.  Had robotic surgery.  5 of 25 lymph nodes positive as well as positive abd wash.  Had sandwich treatment of Taxol /Carbo with 28 external treatments  and a 28 hour internal treatment.  Had reaction to Taxol within first few minutes.  Can only get Taxol at very slow rate.    CA125 began to rise as soon as chemo stopped.  Have never been NED.  

    Had 18 months before 2 nd chemo and CA125 raised to 1700. No symptoms, CAT showed increase in multiple lymph nodes.    Had reaction to Carbo during 9 th treatment.  Switched to Cisplatin..had Total of 7 treatments this time.  Had only 7 months before 3 rd chemo and CA-125 rose to 3200.   No symptoms, CAT scan showed increase in multiple lymph nodes.   Had 6 more Taxol/ Cisplatin.  Finished chemo 5/12.  Due to reactions to both drugs It takes me two days to receive the chemo.

    When I recurred after only 7 months, I asked if the recurrences would occur in shorter time periods.  The nurse practioner said they usually Do.    I am glad I proved them wrong. 

     Developed bilateral lung clots in 1/12.  No symptoms.  Found on CAT scan.   Have been on daily blood thinner shots since then.   Started Aromasin after 3 rd chemo. 

    It has been 27 months since my last chemo and currently CA -125 is 1582.  The latest CAT scan shows only  one lymph node enlarged in mediastinal area.  Waiting for news if I am a candidate for cyber knife or surgery to remove lymph node.  The node is in front of the trachea, so neither maybe possible.  If I can't have either I will continue to be in observation, but I know chemo is in the future.

    Because we winter in Florida I had my surgery and first three chemos at Moffitt Cancer Center in Tampa, Florida.  I had my radiation treatments and last chemo at Quincy Medical Group Cancer Center in Quincy, Illinois. 

    For the other rounds of chemo I had the first three at Moffitt and the last ones in Quincy.  both of my doctors say the CA-125 is only a number.  They wait for symptoms.....which I have never had.....or changes in the CAT scan......which I have had 20 since 2009.   I expressed concern over so many scans, but they said the risk of the UPSC spreading is higher than the risk of the radiation from the CAT scans.

    i have learned not to stress over the rising of the CA-125 and celebrate the small increases I have had since being on Aromasin.  So it's been 5 years and 7 months since diagnosis, but never NED.  The doctor told me initially my UPSC was not curable, but treatable like a chronic disease.  I am fortunate my recurrences have stayed in the lymph nodes, and I can still receive Taxol/ Cisplatin.  

    When I signed on to this site I was the 10 th person to sign on thus the name Ro10.  My name is Roberta, but my family always called me Ro since I had a twin Robert.   It will be interesting to see how many more UPSC sisters we have now.  I am sorry there are so many of us.

  • It happened to Me
    It happened to Me Member Posts: 206 Member
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    DebiR said:

    Debi, North Olmsted, OH, 56.5

    Debi, North Olmsted, OH, 56.5 years at dx, UPSC 3A (positive ovaries, pelvic wash), grade 3.  Treated at University Hospitals, Cleveland, OH.  Currently in trial GOG-0258 and treatment is 6 rounds of Carbo/Taxol that started 7/16/14. 

    Jeanette, Bettendorf, IA 51 at dx

    Jeanette, Bettendorf, IA  51 at dx Jun. 2013, UPSC 3A (In Uterus, on left ovary, pea sized tumor on back of pelvis, on paracolic gutter, pos. pelvic wash w/aypical cells), grade 3.  No lymph nodes.   Radical hysterectomy, University of Iowa Hospital, Cancer Center, 6 rds taxol/carbo began 8/2013 finished 1/2014.  No radiation.   Currently NED (6 or 7 months depending on when they start counting).   CA125 was 9 at dx and 8/11/14 currently 5.

  • cheerful
    cheerful Member Posts: 261 Member
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    Pat51 said:

    Pat from Berlin, WI

    I have UPSC.  I was 59.6 years when diagnosed.  I was diagnosed in Feb. 2011 with UPSC Stage 1B (I think I may be a Stage 1A on the newer charts)  I had a radical hysterectomy, 6 carboplatin,taxotere chemos and then 3 brachytherapy internal radiation treatments.  My CA125 in July 2014 was 15.2. (CA125 was 27 at the time I was diagnosed.)  I had surgery at Theda Clark Medical Center, Neenah, WI , chemo at Martha Seikman Cancer Center, Appleton, WI and radiation at the University of Wisconsin Clinics, Madison, WI.  I finished treatment in September, 2011.   I have been NED for almost 3 years.

    Feeling very blessed at this time.

    Pat

    Jane from Delaware County, PA

    I was 59 1/2 years old when diagnosed in February of 2011.  I clinically was diagnosed with UPSC Stage 1A (a large polyp of 5 centimeters).  I had a hysterectomy, 6 carboplatin/taxol chemo treatments from April to August of 2011 and then 3 brachytherapy internal radiation treatments after my chemo ended the end of Sept/Oct of 2011.

    My CA 125 in May 2014 was 7.  I have had numerous CT scans and they all show with no evidence of disease.  I have been NED for almost 3 1/2 years.

    I am very grateful and thankful to continue to be with No evidence of disease and I feel thankful for each and every day.

    Cheerful

    a/k/a Jane

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,384 Member
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    Indianapolis, IN.  DX on

    Indianapolis, IN.  DX on April 5, 2012 at the age of 49 after irregular bleeding and atypical cells after PAP.  D&C said I had Type I (garden variety type) and Type II (UPSC) Stage 1A.  Surgery was the DaVinci complete hysterectomy where they took a ton of lymph nodes.  All lymph nodes were negative for cancer but since UPSC was found it was determined I need the full-Monty of 3 chemo (Taxol/Carbo), 25 external / 3 internal IMRT radiation, 3 chemo (Taxol/Carbo). 

    Developed lymphodemia and have a lovely collection of compression garments, as I suspect many of the ladies out here have as well.

    NED since the treatment ended December 19, 2012 (Specific dates in 2012 are burned in my memory!)  I feel so lucky to have caught this devil early and to have found all you beautiful warriors, and all the sisters of all the other "below the belt" cancers at all.

  • sunflash
    sunflash Member Posts: 197 Member
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    Indianapolis, IN.  DX on

    Indianapolis, IN.  DX on April 5, 2012 at the age of 49 after irregular bleeding and atypical cells after PAP.  D&C said I had Type I (garden variety type) and Type II (UPSC) Stage 1A.  Surgery was the DaVinci complete hysterectomy where they took a ton of lymph nodes.  All lymph nodes were negative for cancer but since UPSC was found it was determined I need the full-Monty of 3 chemo (Taxol/Carbo), 25 external / 3 internal IMRT radiation, 3 chemo (Taxol/Carbo). 

    Developed lymphodemia and have a lovely collection of compression garments, as I suspect many of the ladies out here have as well.

    NED since the treatment ended December 19, 2012 (Specific dates in 2012 are burned in my memory!)  I feel so lucky to have caught this devil early and to have found all you beautiful warriors, and all the sisters of all the other "below the belt" cancers at all.

    Diane, Houston, Texas, 58

    Diane, Houston, Texas, 58 years at diagnosis. UPSC stage 1a discovered June 2011, and treated with 6 rounds of Taxol/Carboplatin. No radiation. Chemo finished in November, 2011, so will be 3 years post treatment at that time. CA125 goes between 7 and 8, and was 4 after surgery. CA125 not taken before surgery because cancer wasn't suspected, Pelvic wash clear but lymph nodes weren't tested. 

    NED so far, and grateful for each day!

     

  • joannewtta
    joannewtta Member Posts: 43
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    Indianapolis, IN.  DX on

    Indianapolis, IN.  DX on April 5, 2012 at the age of 49 after irregular bleeding and atypical cells after PAP.  D&C said I had Type I (garden variety type) and Type II (UPSC) Stage 1A.  Surgery was the DaVinci complete hysterectomy where they took a ton of lymph nodes.  All lymph nodes were negative for cancer but since UPSC was found it was determined I need the full-Monty of 3 chemo (Taxol/Carbo), 25 external / 3 internal IMRT radiation, 3 chemo (Taxol/Carbo). 

    Developed lymphodemia and have a lovely collection of compression garments, as I suspect many of the ladies out here have as well.

    NED since the treatment ended December 19, 2012 (Specific dates in 2012 are burned in my memory!)  I feel so lucky to have caught this devil early and to have found all you beautiful warriors, and all the sisters of all the other "below the belt" cancers at all.

    Roll Call for UPSC only

    I joined the UPSC club in June of 2013. I was 67 years only when dx.(average age for UPSC). My surgery was July 10 and it involved full hysterctomy. I was a stage 3 grade IIIC I believe.  One pelvic lymph node was malignant, the pelvic washings showed malignant cells etc. etc. Started Chemo in August which was the taxol and carbo. Had 18 treatments(mine was one week with both drugs, two weeks with just taxol and then one week off with a Newlasta shot at end of each series. I also had two blood tranfusions. Completed chemo in Jan and had 4 braciatherapy(sp) in Feb. 2014. I had CT scan in April and checkups in April and July. NED and CA125 is down to 7. I feel good  but understand how scary this is. I only just found this blog about a month ago and just wish I had found it sooner.

    My husband was diagnosed in May 2013 with Renal Cell Carcinoma and had his right kidney removed two weeks before my surgery. He has small tumor on his other kidney but we are just watching it and has had no change in shape or size in 14 months. No chemo or radiation for him. I say I got the full-meal deal and he just lost a kidney. Needless to say this has been a year in our lives we don't want to relive.

    It is really good to read this site and see the great women posting here. I read somewhere that you don't know how strong you are until you have to be strong. So true.

    My post chemo and radiation issues are neuropathy in my feet(really bad) I am seeing a neurologist in Sept and hope there is some relief. Bladder will probably never be the same!!! If anyone has any good ideas about the neuropathy I would appreciate hints. Sitting around in 80 degree weather with a blanket on them looks rediculous but gives relief.

  • Hybridspirits
    Hybridspirits Member Posts: 209
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    Roll Call for UPSC only

    I joined the UPSC club in June of 2013. I was 67 years only when dx.(average age for UPSC). My surgery was July 10 and it involved full hysterctomy. I was a stage 3 grade IIIC I believe.  One pelvic lymph node was malignant, the pelvic washings showed malignant cells etc. etc. Started Chemo in August which was the taxol and carbo. Had 18 treatments(mine was one week with both drugs, two weeks with just taxol and then one week off with a Newlasta shot at end of each series. I also had two blood tranfusions. Completed chemo in Jan and had 4 braciatherapy(sp) in Feb. 2014. I had CT scan in April and checkups in April and July. NED and CA125 is down to 7. I feel good  but understand how scary this is. I only just found this blog about a month ago and just wish I had found it sooner.

    My husband was diagnosed in May 2013 with Renal Cell Carcinoma and had his right kidney removed two weeks before my surgery. He has small tumor on his other kidney but we are just watching it and has had no change in shape or size in 14 months. No chemo or radiation for him. I say I got the full-meal deal and he just lost a kidney. Needless to say this has been a year in our lives we don't want to relive.

    It is really good to read this site and see the great women posting here. I read somewhere that you don't know how strong you are until you have to be strong. So true.

    My post chemo and radiation issues are neuropathy in my feet(really bad) I am seeing a neurologist in Sept and hope there is some relief. Bladder will probably never be the same!!! If anyone has any good ideas about the neuropathy I would appreciate hints. Sitting around in 80 degree weather with a blanket on them looks rediculous but gives relief.

    Neuropathy

    my oncologist believes in trying accupuncture.  I have neuropathy and am working on accupuncture for that and my immune system.  From   your description your neuropathy might be a little more intense than mine.  My oncologist has shared that she has seen good results.  She does recommend an accupuncturist that deals with cancer patients, hopefully on a cancer hospital integrated team.  Mine is and I love him.   She also believes in the B vitamins.  Deficient B-6 or too high B-6 can cause neuropathy.  So she would periodically check my B-6 levels.  My naturopath has taken over that monitoring.

     

    hope this helps

  • artist49
    artist49 Member Posts: 87
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    UPSC

    I am  65 now and live in NJ.

    I was diagnosed at Sloan Kettering with UPSC at age 61 in September. 2010. My stage was

    4B, grade 3 and cancer was found all over pelvic area  and in all 40 lymph nodes tested. I

    had a hysterectomy which was optimal and then entered a clinical trial at Sloan. 4 months

    of carbo. ixabepilone  and avastin  and then continued with avastin for maintenance till

    October 2013, I have been NED since Feb. 2011.   My ca125 was 53 at diagnosis and is

    currently 1.

    Now for the rest of the story -   In may 2012 I was tested and found to be BRCA 2 positive.

    ! was told  by  the genetics counselor at Sloan that being BRCA  positive can result in longer

    remissions - esp. BRCA 2.

    But, I'm not taking any chances with a horrific diagnosis like mine. I flew to Chicago  to learn about

    diet from Dr. Block. I flew to Durango, Colorado  to become the patient of  the famed naturopath there.

    She counsels me on the phone by monitoring my lab tests. She also OKs my diet.

    I feel great but every CT scan brings on monumental anxiety.  I have a normal life back and

    fear I will lose it again.

    If anyone is interested, I will post my super anti cancer AM smoothie.

     

  • debrajo
    debrajo Member Posts: 1,095 Member
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    artist49 said:

    UPSC

    I am  65 now and live in NJ.

    I was diagnosed at Sloan Kettering with UPSC at age 61 in September. 2010. My stage was

    4B, grade 3 and cancer was found all over pelvic area  and in all 40 lymph nodes tested. I

    had a hysterectomy which was optimal and then entered a clinical trial at Sloan. 4 months

    of carbo. ixabepilone  and avastin  and then continued with avastin for maintenance till

    October 2013, I have been NED since Feb. 2011.   My ca125 was 53 at diagnosis and is

    currently 1.

    Now for the rest of the story -   In may 2012 I was tested and found to be BRCA 2 positive.

    ! was told  by  the genetics counselor at Sloan that being BRCA  positive can result in longer

    remissions - esp. BRCA 2.

    But, I'm not taking any chances with a horrific diagnosis like mine. I flew to Chicago  to learn about

    diet from Dr. Block. I flew to Durango, Colorado  to become the patient of  the famed naturopath there.

    She counsels me on the phone by monitoring my lab tests. She also OKs my diet.

    I feel great but every CT scan brings on monumental anxiety.  I have a normal life back and

    fear I will lose it again.

    If anyone is interested, I will post my super anti cancer AM smoothie.

     

    Smoothie

    Would love to hear about the smoothie.  Been doing the green fast smoothie and have FINALY lost the 30 pounds I gained during chemo!  Always looking for healthy options, since I don't eat anything white, no meats,  sweets, or grains.  Been feeling much better and diabetes is well under control without insulin.  Thanks artist 49, Debrajo

  • dkdrew
    dkdrew Member Posts: 15
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    hi y'all

    I'm Kathy from Maine. I was diagnosed with UPSC stage 2, grade 2 on Apr. 9, 2014. I am 56yr. I'm currently  being treated at the Lafeyette Center in Brewer, Maine. I just finished round 5 of Taxol-Carbo. I have one more round to go and then 3 rounds of vaginal brachytherapy. I saw a naturalist and she told me she couldn't find any cancer in my body but she wasn't sure if it's really gone or if the chemo is doing it, but I'll take this as good news. Hoping my hair will grow back before winter really sets in here!

  • debrajo
    debrajo Member Posts: 1,095 Member
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    Welcome to all the "Newbies",

    Welcome to all the "Newbies", but sorry you had to come!  Thank you for posting!  Best, Debrajo

  • ConnieSW
    ConnieSW Member Posts: 1,680 Member
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    debrajo said:

    Welcome to all the "Newbies",

    Welcome to all the "Newbies", but sorry you had to come!  Thank you for posting!  Best, Debrajo

    I am

    Connie from Plattsburgh, NY, diagnosed wth stage 1A UPSC in March 2012 at age 65.  I had  enjoyed 8 months of retirement then my world turned upside down.  Treatment consisted of the usual:  surgery, chemo and brachytherapy.  I am currently NED and August 15 will be the    2 year anniversary of last chemo session.  

  • pinky104
    pinky104 Member Posts: 574 Member
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    Roll Call

    I was diagnosed with stage IVb in May of 2010 at the age of 61.  I was NED  for 4 years, and I don't know where I stand right now.  I had pain in the left side of my abdomen this past May, had a CT scan, then a PET/CT.  Nothing was found in the left side, other than diverticulosis which was scattered, but a 1 x 1.4 cm. mass was found in the right side in the paracolic gutter.  However, my CA-125 was only 6.3.  My gyn/onc has ordered another CA-125 and a CT scan for Sept. to see if it's grown.  If it has, it'll be removed.  If it hasn't, it won't.  I was told there was a chance it could be a fluid collection due to lymph node removal.  My gyn/onc wasn't at all sure what it was because of the low CA-125.  At my worst, before my surgery, even with stage IVb, my CA-125 was only 94.  I'd actually thought I had celiac disease since my mother was diagnosed at 84 with that, but all my tests had come out as normal.  I had diarrhea almost every day before work, but one doctor had said I'd had irritable bowel.  In high school, I probably did have that, as I often got diarrhea before tests.  I had a small amount of vatinal bleeding about 2 mos. before my diagnosis, which I'd blamed on being put on an estrogen cream because of the pessary I had.  Instead, it was because of a large uterine polyp.

    My treatment was total hysterectomy, bilateral salpingo-oophorectomy, omentectectomy, iliectomy (had a small spread into the small intestine) along with removal of my gallbladder for gallstones I never knew I had plus an incidental appendectomy. These were done at St. Peter's Hospital in Albany, NY.   I had 6 rounds of carboplatin and taxo where l worked, at Glens Falls Hospital, and no other treatments.  I've had follow ups every 3 months for awhile, then 6 months, and I was supposed to be down to once a year at my gyn/onc at St. Peter's when I developed this new mass.  My PA at my family doctor ordered the scan for my pain.  I continue to follow up with the oncologist in Glens Falls Hospital every 6 mos., as I was diagnosed with hemochromatosis at 3 months out from surgery, and I have to be checked for that.  I also had surgery in August, 2012 for an incisional hernia with a mesh implant.  I don't know what will become of that if I have to have surgery for this new mass. 

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
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    Sandra, Winter Haven, Fl 67

    Sandra, Winter Haven, Fl 67 at diagnosis 12/05/13, after surgery at Moffitt Cancer Center in Tampa,Fl-UPSC stage 2 grade 3, completed all trestment 6/17/14, currently NED, last CA125 July 16th 4.0!! I had 3 rounds of Taxol/Carboplatin then switched to Toxotere/carboplatin due to increasing neuropathy in legs, feet and hands. Also had 3 rounds of internal radiation.

    I am feeling really great now. Finally recoverd from treatment and have a lot of energy and getting back to my old routines and interests. I will see by onc/gyn in Spetember for my first follow up.

  • my life
    my life Member Posts: 5 Member
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    Roll call

    Pat from valencia California, diadnosed fall 2010.  6 carbo-tax tx f/b 3 brachytherapy  NED 3 years But I have neuropathy in hands and feet. Tried various products nothimg has worked so far, can't even write a letter. Other than neuropathy, feel good. Hair will grow back, mine came back better than before except I never got my eyebrows back.  Roberta when I found this site, you were one  of 4 women who posted regularly and gave me great support. You are the only survivor and the reason why I occasionally log on is to check on you. You hang in there!!  my prayers are with every woman battling this disease.  

  • lkchapman
    lkchapman Member Posts: 106
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    UPSC

    Laura. Diagnosed in 2009 at age 46 with stage IIIC2 UPSC. Treated at MD Anderson with up front extended field pelvic XRT and cisplatinum, 3 HDR treatments, then 6 rounds of carbo/taxol combo. NED since.

  • ellen5121
    ellen5121 Member Posts: 6
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    lkchapman said:

    UPSC

    Laura. Diagnosed in 2009 at age 46 with stage IIIC2 UPSC. Treated at MD Anderson with up front extended field pelvic XRT and cisplatinum, 3 HDR treatments, then 6 rounds of carbo/taxol combo. NED since.

    UPSC Roll Call

    So glad you are doing this roll call as I am recently diagnosed with UPSC and also thought that this diagnosis does not seem as unusual as research/internet information indicates. I just had complete minimally invasive hysterctomy on 8/13/14 and feel that I am recuperating well, I am 61 years old and live in Brooklyn, NY. I plan to recieve follow-up at NYU and expect to know more about stage/grade and treatment protocol within a week or so. I am very eager to learn from all of you and eventually share what I learn as my journey continues. I deeply appreciate the generous, supportive and knowledgeable women on this discussion board,

     

    Ellen