Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatm

1151617181921»

Comments

  • beila
    beila Member Posts: 97 Member
    LizGrrr said:

    Can't believe I didn't post here last year - UPSC 1a
    I was diagnosed with UPSC 1a just about a year ago. I'd had trouble sleeping and heavy bleeding/irregular periods all summer and just thought it was menopause.

    Finally went to my GP in early September, asking for the hormone test to confirm menopause. She refused and sent me to my gyno. From there:

    9/27/11 - transvaginal ultrasound: I've got a fibroid!

    10/17 - scheduled for a D&C, which turned into a robotic hysterectomy (I had a septum in my uterus which kept the gyno from seeing the whole uterus...go figure)

    10/20 - recovery was swift until I got the call from the gyno - can you come in and talk about your pathology results

    11/7 - laparotomy/staging surgery; onc #1 says I don't need anything afterwards unless I 'want' to do 3 prophylactic rounds of chemo, onc #2 says I should be including radiation in my treatment. Confusion abounds. after much research and conversations with NIH, I fire onc #1

    12/19 - after edema (retained 22 pounds of water) and a couple of incision infections, started chemo

    1/3/12 - 2nd chemo

    1/23 - 3rd chemo

    February/March - external radiation

    4/24 - 4th chemo

    5/16 - 5th chemo

    6/5 - 6th chemo

    I now have about 3/4" of hair on my head and I have to shave my legs again. I still have occasional aches and pains, but those are dwindling and my abdominal swelling continues to subside.

    I had a 2nd post-treatment CT last week exploring some lymph nodes, I have breast ultrasounds every 6 months because I've developed fibroadenomas, and my liver and magnesium levels are not what they should be.

    Still, I feel great, sleep well, and walk the dogs frequently.

    Liz in Dallas

    discussions with NIH??
    liz....did you actually get to have discussions with NIH???
    Could you tell me how you got to do this?

    I am a doctor myself, and thought that this would enable me to talk to other MDs about my case (USPC did not respond to Taxol/Carbo)
    I have been trying Dana Farber in Boston and Sloan Kettering in NY, but they will only do formal consult

    I have and appt with Medical Oncologist at Toronto's cancer centre, Princess Margaret Hosp on Oct 22, but want to arrive educated about other chemo options

    Please let me know how I can get through and have conversations with NIH

    Thanks, and I am very glad you feel great and are walking the dogs...mine has been very patient with less walks than before...I feel fine except for post chemo fatigue

    Beila
  • Goldamillie
    Goldamillie Member Posts: 26
    UPSC Stage III c
    I have this since July 2010. I hope this finds you.

    Best

    Golda Millie in Baltimore MD
  • Goldamillie
    Goldamillie Member Posts: 26
    seaturtle said:

    Joining in
    I am 65 and just diagnosed with Level 1 uterine cancer (from prescribed estrogen, long-term). I have to come off estrogen abruptly, surgery is scheduled for this Tuesday.
    I am in southern Vermont, going to Dartmouth for surgery.

    I welcome this forum, the only support I have. Locally, there is supposed to be a cancer group run by the hospital, but they don't have enough people (!) who want to join it.

    I am on SSI alone, no Social Security. I do have 6 cats (lost one Monday to cancer), who are my little family. My second love is my garden.

    I'd like to be called Turtle (one of my favourite animals).

    USPC Stage IIIc as of July 2010
    Hello, Turtle

    Just wanted to say hello. I see you were up in the wee hours and I wanted to give you a "hey there" - I agree female patient support for cancers other than breast is almost non existent. No pink ribbon for the uterus! Oh, well we do what we must.

    Level one sounds like you will be okay as you caught it early. Let everyone know how it is going, please.

    Sincerely,

    Golda Millie in Baltimore MD

    p.s. give your babies a pet for me - I am a cat (well, all animals) kind of person, too. :o)
  • Goldamillie
    Goldamillie Member Posts: 26
    Gloria C said:

    My name is Gloria
    My name is Gloria. I just rec'd pathology report from D&C that showed Uterine Cancer, Grade 3 clear cell. Gyn/Oncologist says removing all female parts and removal of lymph glands to to heart. Level to be determined and then immediate chemo. Alone & Terrified.

    Uterine Cancer diag
    Hello, Gloria

    I understand the alone and terrified feeling. I have had UPSC stage IIIc since july 2010. Same as you, all female parts removed and some lymph nodes Sept 2010. I keep fighting the nasty beast and so will you.

    How about an update?

    Golda Millie in Baltimore MD
  • DoonyL7
    DoonyL7 Member Posts: 33
    roll call
    hello linda,
    My name is Lorna. I have Stage IIIA Grade 3 UPSC, diagnosed in June. Had surgery, 3 rounds of carbo/tozol chemo. I am one week into radiation which they tell me I will finish on Nov 21. Oh Joy, I get to do another round of chemo for the holidays. I live in western Az.
  • Sandy3185
    Sandy3185 Member Posts: 228
    DoonyL7 said:

    roll call
    hello linda,
    My name is Lorna. I have Stage IIIA Grade 3 UPSC, diagnosed in June. Had surgery, 3 rounds of carbo/tozol chemo. I am one week into radiation which they tell me I will finish on Nov 21. Oh Joy, I get to do another round of chemo for the holidays. I live in western Az.

    Update

    Wow, this is a very long thread! It is a great read though. I thought I would post to bring it to the top. I was diagnosed 10/2013 and had a radical hysterectomy on Dec 5th. Diagnosed with UPSC in uterus and cervix. Had 6 rounds of chemo( every three weeks from 1/17/13 through 5/2/14 and then 3 rounds brachytherapy. I finished treatment in June and have had two follow up visits with no evidence of disease and hoping to stay the way!

  • daylady
    daylady Member Posts: 122
    Roll call check in

    Stage IVb UPSC; total hysterectomy, omenectomy, etc. in Jan. 2014; 6 rounds chemo (Caboplatin/Taxil), plus one round of vaginal brachyteraphy (3 treatments); NED in July 2014; recurrence in pelvic nodes in Dec. 2014; going through 6 rounds of chemo (Doxil); doing pretty well except for mouth sores;  No tumors, masses, or organ involvement so hoping this treatment works; my oncologist is optimistic.  Husband and family very supportive.  Really monitor diet; take supplements; walk 5 miles a day; have also lost 45 pounds (intentional) and have 10 pounds to go to goal weight.

  • Stabler
    Stabler Member Posts: 51
    Debbie Dowd
    Stage 0-1  lucky

    Debbie Dowd

    Stage 0-1  lucky enough to have found it Really early, it was only about 10% invasive.  Radical hysterectomy  12/31/12.  No further treatment.  Just hit the two year mark.  Still cancer free.  I live in central Michigan.

  • cheerful
    cheerful Member Posts: 261 Member
    Stabler said:

    Debbie Dowd
    Stage 0-1  lucky

    Debbie Dowd

    Stage 0-1  lucky enough to have found it Really early, it was only about 10% invasive.  Radical hysterectomy  12/31/12.  No further treatment.  Just hit the two year mark.  Still cancer free.  I live in central Michigan.

    I was diagnosed with Stage 1 as my cancer was a polyp of 5 centimeters of UPSC in February of 2011 so I have just reached my 4 year mark.  So far, I remain with No evidence of disease and I hope it continues this way.

    I will be having a cat scan done next month in March and will be seeing my oncoogist in April for my 6 month checkup.  I am very grateful and thankful that I remain with No Evidence of Disease and very happy and grateful that my cancer was caught early.

    I have changed my eating habits for the better and enjoy each and every day.  I went through 6 rounds of carboplatin and taxol and 3 brachytherapy treatments.  I started my chemo in April of 2011 and finished the end of August of 2011 and had my 3 brachytherapy treatments the end of September of 2011 and finished in mid October of 2011.

    I was 59 1/2 when I was diagnosed and I am now 63 years old.  I live in the suburbs of Philadelphia, PA in Delaware County.

    Cheerful

    a/k/a Jane 

  • pinky104
    pinky104 Member Posts: 574
    Roll Call

    I had surgery for stage IVb UPSC in May of 2010.  I had a total hysterectomy, bilateral salpingo-oophorectomy, omentectomy, removal of both ovaries and a small amount of cancer in the ilium, plus had my gallbldadder and appendix taken out at the same time (gallstones had been found on my CT scan).  I also had lymph nodes removed.  I had 6 rounds of carboplatin and taxol after the surgery, no radiation.  I had a scare last year because a mass was found in my paracolic gutter after I'd had abdominal pain, but it doesn't appear to be cancerous because it hasn't grown. It was watched for 6 months and  had a PET scan, three CT scans and labs, including normal CA-125's last year.  I'll have one last set of labs and a CT scan and be seen again in June, 2015 for a final recheck.  If they're negative, my gyn/onc will stop checking on it. It could be something else like a fluid collection from lymph node removal.

    I live in a small town in upstate NY about an hour from the Vermont border.  

    Carol 

  • TXBlue
    TXBlue Member Posts: 3
    pinky104 said:

    Roll Call

    I had surgery for stage IVb UPSC in May of 2010.  I had a total hysterectomy, bilateral salpingo-oophorectomy, omentectomy, removal of both ovaries and a small amount of cancer in the ilium, plus had my gallbldadder and appendix taken out at the same time (gallstones had been found on my CT scan).  I also had lymph nodes removed.  I had 6 rounds of carboplatin and taxol after the surgery, no radiation.  I had a scare last year because a mass was found in my paracolic gutter after I'd had abdominal pain, but it doesn't appear to be cancerous because it hasn't grown. It was watched for 6 months and  had a PET scan, three CT scans and labs, including normal CA-125's last year.  I'll have one last set of labs and a CT scan and be seen again in June, 2015 for a final recheck.  If they're negative, my gyn/onc will stop checking on it. It could be something else like a fluid collection from lymph node removal.

    I live in a small town in upstate NY about an hour from the Vermont border.  

    Carol 

    Roll Call

    I am 57 years old and live just north of San Antonio, TX on a ranch. I am undiagnosed as of today. All of this started in November when I had substantial bleeding after being more than 10 years postmenopausal. After 2 ER trips, 2 GYNs, lots of exams, blood tests, 2 sonograms, etc... I have been told that I have fibroids and endometriosis. I have had 2 attempted biopsies that were unsuccessful. Apparently one of the fibroids is sitting at the opening of my cervix and is more solid than it should be which prevented the doctors from getting "good" biopsies. So I have been told that I may have uterine cancer and have been referred to a GYN Oncologist in San Antonio, TX. After first meeting/examination, I am scheduled for a D&C on the 23rd of February. Hopefully, I will have some answers after this procedure. Until then, it is a waiting game. So, I am keeping my sense of humor, staying positive and hopeful but also trying to educate myself on all of this.

  • Maggie_mac
    Maggie_mac Member Posts: 32
    pinky104 said:

    Roll Call

    I had surgery for stage IVb UPSC in May of 2010.  I had a total hysterectomy, bilateral salpingo-oophorectomy, omentectomy, removal of both ovaries and a small amount of cancer in the ilium, plus had my gallbldadder and appendix taken out at the same time (gallstones had been found on my CT scan).  I also had lymph nodes removed.  I had 6 rounds of carboplatin and taxol after the surgery, no radiation.  I had a scare last year because a mass was found in my paracolic gutter after I'd had abdominal pain, but it doesn't appear to be cancerous because it hasn't grown. It was watched for 6 months and  had a PET scan, three CT scans and labs, including normal CA-125's last year.  I'll have one last set of labs and a CT scan and be seen again in June, 2015 for a final recheck.  If they're negative, my gyn/onc will stop checking on it. It could be something else like a fluid collection from lymph node removal.

    I live in a small town in upstate NY about an hour from the Vermont border.  

    Carol 

    Roll Call

    My UPSC [IVb]is very much like Carol's, only I started a little after she did.  My surgery was in November 2011, and included carcinoma of the uterus, ovaries, tubes, appendix, omentum and parametrium.  This was followed by the series of 6 Taxol/Carboplatin sessions and then oral megestrol.  This held me for about 10 months when my CA 125 jumped back to 365.  In Feb 2013 I started round 2 of T/C for another 6 sessions ending in June.   Now I was taking tamoxifen.  In another 6 months my CA 125 was back up to 122; so I started round 3 followed by letrozole.  Yup, by this past Christmas the CA 125 was up again and I am currently considered platnum resistant, so after a total of 18 T/C infusions, I started on Doxil and have gone 3 rounds on that.  Unfortunately, that doesn't seem like my magic bullet either.  Since Christmas I've had 3 infusions and the CA 125 has gone from 74 to 317.  In another 2 1/2 weeks I'll start on Cytoxan/Avastin.

    I live outside of Philadelphia, and have been very fortunate to have multiple treatment center options.  To date I've had everything done at the University of Pennsylvania and they are a lovely caring team.  We all know how difficult this is not only for us, but for our families too.  God bless you all and remember to remain grateful for all the wonderful things life has given us.

    Maggie    

  • It happened to Me
    It happened to Me Member Posts: 206 Member
    My Diagnosis

    Was diagnosed June, 2013 with UPSC.  Total hysterectomy (uterus, tubes, ovaries, cervix) in July 2013.  Staged IIIa:  besides little tumor in uterus, found pea sized tumor on back of pelvis, cancer on left ovary and cancer on left paracolic gutter.  Pelvic wash was positive.  No lymph node involvement.  6 rounds of carbo/taxel beginning in Aug. 2013 and ending in Jan. 2014.  They felt radiation would not benefit me.   Have been NED since.  My one year after chemo. will be 2/19/15.   My CA125 was 9 when diagnosed and is now 4.  Doctor says I have a 50/50 chance of recurrence within 5 years.  I decided I was going to be on the 50% that doesn't get it back.  :)   

    Jeanette

  • Sandy3185
    Sandy3185 Member Posts: 228
    Linda Procopio

    linda was a wonderful woman who left us a legacy with her honest and insightful postings. If you would like to learn more about her, see her thread 

    Uterine Papillary Serous Carcinoma (UPSC): any others here??? 

    i was incredibly moved by her story and would encourage everyone who has not already read it to do so. You will also meet others there who have gone above and beyond in both their valiant fight with cancer but also with their efforts to share and help others in our group. Sandy

  • KayBB
    KayBB Member Posts: 15
    Roll Call

    Carcinosarcoma of the endometrium. MMMT

    I am 63 years old. I live in Beaufort, NC.  On the 27th of October 2014, I had hysterectomy with three lymph nodes removed. I have stage3A Carcinosarcoma of the endometrium.
    I started with 3 rounds of chemo (one every three weeks), 28 radiation treatments, (have three more radiation approximately three weeks rest, start another three rounds of chemos.
    I had my surgery at Duke in Durham, North Carolina. I can't explain the peace I found while i was having the hysterectomy and the trust I have with my team of doctors. I trust this team of doctors so, that I am having my treatments at Duke. It is about a three hour drive from where I live but thank God I have family there. I am learning with this web site that I am not alone. With it being a rare cancer I am thankful that my daughter emailed me this web site.  
    Living one day at a time!
    Kay Babcock

    Send this user a message

  • namedropper
    namedropper Member Posts: 102 Member
    Roll Call

    This is Namedropper my real name is Sue I am 73 yers old from Cleveland, Ohio I was DX with MMMT uterine cancer June 2014 had 5 rounds of chemo and then 3 Brachytherapy treatments.  I had grade 3 stage 2 after my hysterectomy and 17 nodes taken out. The nodes were fine.   I am being treated by Dr. Chad M Michener at the Cleveland Clinic.  He is wonderful and explains things well.   I am a positive person and I will  listen to my  Doctor. My last 2 CT scans were clean so I can go until July before seeing him again.  He said to report any new symptons ASAP since this is a very aggressive cancer.   I will pray for others as I know they will pray for me.  

  • Miha
    Miha Member Posts: 23 Member

    Hello,

    UPSC stage 3C, early 70's, offered chemo first to shrink the tumor and after 3 treatments which will be on the 7th of November, will discus surgery. Please give me hope. Much love. happy to have found you ladies!!

    Nicole

  • Forherself
    Forherself Member Posts: 769 Member

    Welcome Miha. I am sorry to read about your diagnosis, but we all share it. You have posted at the bottom of a post that started, I think, in 2009. I have been reading the old posts. If you create a new post by clicking on the blue plus sign to the right, you will get more responses.

    We have many women here who are surviving UPSC stage 3. You can read about treatments by doing a search. We say we are a statistic of one. There is always hope. It is scary at first. We all have been there. I am more than 4 years out of UPSC, stage 1A. Please feel free to ask any questions you have. It can be confusing. Hugs, Sue

  • Miha
    Miha Member Posts: 23 Member

    Thank you for responding Sue, I very much appreciated!

  • Miha
    Miha Member Posts: 23 Member

    hello,

    I have been reading recently that minimally invasive radical hysterectomy was associated with lower rates of disease free survival and overral survival compared with abdominal radical hysterectomy.

    Any thoughts?

    Thank you

    Miha