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

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  • loveable karina
    loveable karina Member Posts: 1

    intro update
    Hi,
    I'm posting for my mom and have found this site invaluable. My name is Linda, but there are so many Lindas that some people call me Cookie. She had total abdominal hysterectomy on March 12th as she was told she had uterine papillary serous carcinoma. The pathology came back as stage 1a, she is not having treatment. She is 85 and oncologist/gyn stated if she was younger maybe some treatment, but he is hopeful she needs none. Caught in earliest possible stage per oncologist. It was contained in a polyp inside uterus.
    I will remain watching this site as it is so informative and helpful.
    It is reminding me that i need to go for check ups myself and keep putting it off. Thanks to all,
    Linda aka Cookie :)

    About my staging and treatment
    hi my name is karina and i am 26 yrs old mother of 2 girls. about 7 months ago i started bleeding heavily and getting really tired all the time. so i keeped going to my local county hostipal, and they refused to do anything saying i was to young to have cancer,will needless to say after many months battleing them, they did a biopsy and they said i had Stage1A, and that they would have to do a total hystercomy. so on june 16,2009 i had my surgery, they said that it was indeed Stage 1A. but now 2 months after treatment,they are still giving me the runaround. they say i dont need chemo or radation. but everything i have read about younger women having it that some treatment after surgery is needed?I just had the CA125 test done but i dont know what the test really is or what it is meant for?i dont really trust the hopstial i am going to because they have given me the run around too many times in the past, but i have no choice because i have no other means of insurance. also what is the rate of recurrence?my docter told me right after surgery that i was 99.9%cured and now he told me today that theres a 20-30% chance of the cancer returning. the risk factors i had was i am overwieght i smoke ciggurettes and yes i have other health problems, somebody please help i am so stressed about this whole thing.
    thanks
    karina
  • bella09
    bella09 Member Posts: 37 Member
    ro_NJ said:

    thanks Bella09
    Thanks Bella - I think we're all rooting for each other. I'm sure once I begin the radiation treatments I'll meet more women experiencing the same thing. I've read a lot about the DaVinci surgery - did they also check your lymph nodes with that type of surgery? Where I'm going, they're not offering that method - they're saying I'll need another "bikini cut". But I have time before I even need to think about that.

    ro_NJ
    You asked if the doctor checked my lymph nodes. After surgery my doctor told me that my lymph nodes looked questionable. He removed 54 and at my follow up appt. he said that they were all clear. I should have asked if they checked all 54 or a percentage. My doctor said before surgery if he was not able to do the DaVinci, due to a large uterus, he would do another type of hysterectomy. If he did the other type, he would still check my lymph nodes. I ended up having the DaVinci. Did the doctor tell you that he couldn't check your lymph nodes during your initial surgery?
  • ro_NJ
    ro_NJ Member Posts: 11
    bella09 said:

    ro_NJ
    You asked if the doctor checked my lymph nodes. After surgery my doctor told me that my lymph nodes looked questionable. He removed 54 and at my follow up appt. he said that they were all clear. I should have asked if they checked all 54 or a percentage. My doctor said before surgery if he was not able to do the DaVinci, due to a large uterus, he would do another type of hysterectomy. If he did the other type, he would still check my lymph nodes. I ended up having the DaVinci. Did the doctor tell you that he couldn't check your lymph nodes during your initial surgery?

    Hi Bella09
    I think the

    Hi Bella09

    I think the hospital I'm going to doesn't have that equipment - but I will ask. They're saying since I need a full hysterectomy and ooperectomy, and removal of the lymph nodes they need to do a bikini cut.

    Glad to hear your lymph nodes were clear - what a relief!
  • ThirdHorn
    ThirdHorn Member Posts: 3
    Roll Call
    Howdy! Margie (aka ThirdHorn) is present and accounted for!

    I was diagnosed with UPSC in January 2008. I had all my inner parts removed via Da Vinci robotic surgery. Cancer was confined to the uterus; no lymph node involvement. Two-and-a-half days after surgery, I was home - no restrictions. After much research, I decided against having chemotherapy or radiation. I see my gynecologic oncologist every four months, and, so far, so good. The most annoying side effect I had was bloating. They discovered that I was accumulating ascites by the liter, so I had my belly drained three or four times. My oncologist was mystified; and then, it stopped happening. We still don't know what the deal was. I also developed lymphedema in both legs (I had problems with it in the past, and the surgery just made it a little worse). I went to a lymphedema clinic for six weeks of manual lymphatic drainage and lessons in wrapping my legs. Worked like a charm. I feel very, very fortunate for lots of reasons.

    I also had breast cancer in 2003, for which I had chemotherapy and radiation. The chemotherapy worked extremely well, and we were able to shrink the almost 5cm tumor so that it was almost imperceptible on the mammogram. I was, therefore, able to have a lumpectomy. Again, no lymph node involvement. Excellent outcome.

    One of the best things I did (besides reading all the posts here) was get a page at CaringBridge.Org. It's free and it allowed me to keep in touch with my friends all at once, and it gave them a chance to keep in touch with me AND everyone else. I gave my password to my brother and to a friend, so they were able to post something as soon as I was safely out of surgery. Very cool.

    I'm keeping all of us in my prayers. A stalwart group!
  • ThirdHorn
    ThirdHorn Member Posts: 3
    ro_NJ said:

    Hi Bella09
    I think the

    Hi Bella09

    I think the hospital I'm going to doesn't have that equipment - but I will ask. They're saying since I need a full hysterectomy and ooperectomy, and removal of the lymph nodes they need to do a bikini cut.

    Glad to hear your lymph nodes were clear - what a relief!

    Da Vinci
    I had a total hysterectomy, bilateral salpingo oophorectomy, and removal of lymph nodes - all done robotically. Very slick.
  • This comment has been removed by the Moderator
  • daisy366
    daisy366 Member Posts: 1,458 Member
    unknown said:

    This comment has been removed by the Moderator

    Hi Margie - Third Horn
    I'm interested too in your stage. It's gutsy to NOT get treatment. What did you base this decision on??? I'm stage 3a UPSC and got 6 rounds of chemo only - now in surveillance.

    Mary Ann
  • cc1212
    cc1212 Member Posts: 3

    Mary Ann, San Francisco Bay, UPSC recurrent
    Mary Ann, UPSC, diagnosed February 2006. IIIa I think. Anyway III. Nothing in lymph nodes, a few rare cells in the wash. Surgery at California Pacific Medical Center, SF. Chemo at San Franisco Oncology, which has offices adjacent to CPMC. Carboplatin and taxol, Summer 2006, ending Sept 15, 2006. Hair presentable in December 2006. Recurrence discovered July 2008. Node found in omentum during surgery and nodes on base of lungs during CT scan. Smaller doses of taxol and carboplatin due to kidney problems. December 2008 through March 17, 2009. Due to start topotecan, used for recurrent cancer, about the end of May 2009, once a week. Never any discomfort from the disease itself, discomfort comes from treatment and kidney problem treatment. 73 years old. Never had radiation. retired. My friend in the picture is Lobo. You can call me Mary Ann on San Francisco Bay, or Mary Ann On The Bay, or Mary Ann SF (shorter) or anything to distinguish me from early member Mary Ann/Daisy.

    Roll Call-Cecile and UPSC4b
    Hi Mary Ann. We seem to be the closest match: I live in Santa Cruz, am 68 yrs old, have UPSC4b, and am being treated at Stanford. Labor Day 2005 I had an emergency hernia operation and the path report said I had uterine cancer. Had a total hysterectomy in Oct. The gyn onc surgeon saw no sign of cancer, but the path report said I had UPSC4b (since I was feeling great and my CA125 was 16, it was quite a shock). Starting Halloween I had 7 rounds of cisplatin, taxol, adriamycin and neulasta. After the first week I had no side effects from the treatment. CA125 went down to 3. Eighteen months later the CA125 was 295 and the CT scan showed a few tumors and lymph nodes. My gyn onc and a gyn rad decided to operate and radiate at the table on Valentine's Day 2007. They took one look, saw tumors and oddities attached all over the abdominal cavity and sewed me up. Took 4 rounds of topotecan with no lowering of CA125 and no side effects. In June (Friday the 13th) I started six rounds of carboplatin and taxol. No side effects and CA125 went down to 13. On Inauguration Day 2009 I had another emergency hernia operation (my bowels had herniated and kinked). The general surgeon saw no signs of cancer. In June 2009 my CA125 was 300 and the CT scan showed tumors and nodes. Monday I'm starting carboplatin and doxil--a "coated" version of adriamycin that doesn't wreck your heart. I'm curious to learn how they "coat" an IV fluid! Ran out of room! Cecile
  • daisy366 said:

    Hi Margie - Third Horn
    I'm interested too in your stage. It's gutsy to NOT get treatment. What did you base this decision on??? I'm stage 3a UPSC and got 6 rounds of chemo only - now in surveillance.

    Mary Ann

    This comment has been removed by the Moderator
  • heaven78214
    heaven78214 Member Posts: 2
    satarell said:

    hi im satarell from texas
    hello my name is satarell or sat for short. I am 27 years old and I was diagnosed with adenosarcoma about 2 weeks ago. They want to do a full hysterectomy but keep going back for more biopsy. I haven't had any kids so they have gone to 3rd and 4th doctors to see if there are any options. They removed a cerviacl polyp that had mixed cells. They also found another mass on my right ovary.
    I worry they are to concerned over child birth more then the cancer.

    Selene from Texas
    Hello my name is Selene, I'm 27 years old and I was diagnosed with Adenosarcoma about two weeks ago. I have a full hysterectomy set for September 15. Does anyone have information about adenosarcoma?
  • bonnyboop
    bonnyboop Member Posts: 9
    Hello from Canada!!
    My name is Bonny; I just turned 50 this March. Was diagnosed Oct/08 with uterine cancer, endometrioid adenocarcinoma, figo grade 2, moved from my uterus to my cervix, with cells found on my bladder. Radical hysterectomy Nov/08, 33 external radiation treatments Jan/Feb 09, 4 chemo treatments paclitaxol/carboplatin Mar-June. Happy to have done my radiation first....was quite sick for 10 days after each chemo treatment..nausea, aching muscles, fatigue...generally felt like crap!! Loss of my hair has shown me just how grey I really am!!! But am loving the new short do!! Have chemo-brain!!!! So if I ramble, forgive me....thank goodness I'm a sloww typist...at least my brain can keep up!! As of a month ago (2 months after chemo) my muscles and joints are becoming increasingly stiff and sore. Do what I can to exercise, but energy levels are still low, tire easily, and no sleep thanks to hot flashes!!! Have heard stiffness is a side effect and can take up to a year to go away. Aspirin helps as well as keep moving, and stretching. Bladder is good (considering last 8 radio treatments focused on it), bowels are not bad, immodium is my friend, but diarrea is not the problem, it's the inability to hold it. So I know all the bathrooms in a 20km vicinity!! I live in Frankford, Ontario, Canada. Small town north of Trenton, Ontario, 2 hrs east of Toronto......It's comforting to know there are others that can relate. (long winded aren't I...chemo brain)
  • bonnyboop
    bonnyboop Member Posts: 9
    linda66 said:

    Hello again
    Thanks to everyone for their friendly welcome to me on this site.

    I started losing my hair at the end of the second week after 1st chemo. I took others' advice and got all my hair buzzed & now have a short stubble. It wasn't so bad. I took a before and after picture and then used a turban at first. I now wear my wig for some occasions, but at home or general activities I am wearing a hat or turban. I'm surprised that I am getting into it and am getting out all my old dangling earrings.

    I go for my second chemo this coming Wednesday and am trying to prepare for it so I don't have times of fainting, vomiting, and dehydration as I did after the first chemo. I am drinking lots of fluids and have started varying the types. Has anyone heard of eating salty foods to try to keep from dehydrating with salt helping your body to hold water? I thought I was drinking lots of water after my first chemo but still got dehydrated.

    Deydration......
    Try drinking pydealite (sp?). It's given to children who are ill to keep their electrolyites up. Salt is good for your body but can thin your blood and you can bleed easily after chemo/radiation treatments. At least I did. Bruised easily too. Best of luck to you...
  • thank you
    thank you Member Posts: 77
    bonnyboop said:

    Hello from Canada!!
    My name is Bonny; I just turned 50 this March. Was diagnosed Oct/08 with uterine cancer, endometrioid adenocarcinoma, figo grade 2, moved from my uterus to my cervix, with cells found on my bladder. Radical hysterectomy Nov/08, 33 external radiation treatments Jan/Feb 09, 4 chemo treatments paclitaxol/carboplatin Mar-June. Happy to have done my radiation first....was quite sick for 10 days after each chemo treatment..nausea, aching muscles, fatigue...generally felt like crap!! Loss of my hair has shown me just how grey I really am!!! But am loving the new short do!! Have chemo-brain!!!! So if I ramble, forgive me....thank goodness I'm a sloww typist...at least my brain can keep up!! As of a month ago (2 months after chemo) my muscles and joints are becoming increasingly stiff and sore. Do what I can to exercise, but energy levels are still low, tire easily, and no sleep thanks to hot flashes!!! Have heard stiffness is a side effect and can take up to a year to go away. Aspirin helps as well as keep moving, and stretching. Bladder is good (considering last 8 radio treatments focused on it), bowels are not bad, immodium is my friend, but diarrea is not the problem, it's the inability to hold it. So I know all the bathrooms in a 20km vicinity!! I live in Frankford, Ontario, Canada. Small town north of Trenton, Ontario, 2 hrs east of Toronto......It's comforting to know there are others that can relate. (long winded aren't I...chemo brain)

    Bonnyboop
    That is the BEST REVIEW of the disease and treatment course I have ever heard!!! Keep up with this attitude. I wish you the best
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  • livenow09
    livenow09 Member Posts: 60
    unknown said:

    This comment has been removed by the Moderator

    Jill from NYC
    Aloha Jill... welcome (unfortunately) to the UPSC site; I was born/raised in NYC (living in Hawaii), was diagnosed in May of 2008, also had to insist on further testing for vague symptoms (vaginal moisture, postmenopausal NOT NORMAL); also discovered I had UPSC; tumor (1 cm x 1.5 cm)was grade 3; very fortunate to have been referred by primary dr's RN (!) to an OB/GYN at a women's center for the biopsy; who in turn sent me directly to an gyno/onc; long story short, stage 1A; surgery/nodes/washings, then had 8 cycles of Carbo/Taxol,finished 11/26/08; no radiation (this specialist's research showed no significant clinical advantage to radiation for stage 1A) but he did encourage me to have 8 cycles of chemo, rather than 6, since my CA 125 kept dropping but not leveling out; just went for my third 3 month check up and all is well (except for anxiety which builds terribly before I go for my exam)CA 125 holding in the low double digits (11, 10, 11); I remind myself I'm one lucky person to have caught this cancer so early and so are you...sometimes I feel as if I have a mission to tell every woman out there to not take no for an answer or ignore subtle signs of change; heard of a woman in TX who hands out fliers about Uterine cancer at foot ball games;
    best of luck and welcome
    Marie
  • livenow09 said:

    Jill from NYC
    Aloha Jill... welcome (unfortunately) to the UPSC site; I was born/raised in NYC (living in Hawaii), was diagnosed in May of 2008, also had to insist on further testing for vague symptoms (vaginal moisture, postmenopausal NOT NORMAL); also discovered I had UPSC; tumor (1 cm x 1.5 cm)was grade 3; very fortunate to have been referred by primary dr's RN (!) to an OB/GYN at a women's center for the biopsy; who in turn sent me directly to an gyno/onc; long story short, stage 1A; surgery/nodes/washings, then had 8 cycles of Carbo/Taxol,finished 11/26/08; no radiation (this specialist's research showed no significant clinical advantage to radiation for stage 1A) but he did encourage me to have 8 cycles of chemo, rather than 6, since my CA 125 kept dropping but not leveling out; just went for my third 3 month check up and all is well (except for anxiety which builds terribly before I go for my exam)CA 125 holding in the low double digits (11, 10, 11); I remind myself I'm one lucky person to have caught this cancer so early and so are you...sometimes I feel as if I have a mission to tell every woman out there to not take no for an answer or ignore subtle signs of change; heard of a woman in TX who hands out fliers about Uterine cancer at foot ball games;
    best of luck and welcome
    Marie

    This comment has been removed by the Moderator
  • bonnyboop
    bonnyboop Member Posts: 9
    thank you said:

    Bonnyboop
    That is the BEST REVIEW of the disease and treatment course I have ever heard!!! Keep up with this attitude. I wish you the best

    Bonnyboop
    I went on "thank you"s profile....you are the lady from Greece who's mom has cancer.....and you had a new baby!!! Thank you for your comment. You are doing exactly what you and your mom needs right now and I must tell you, that wee babe of yours is THE BEST MEDICINE you're mom can ever have. My daughter just had a daughter "Willow" May 26th 2009(exactly 2 wks after my 3rd treatment). I must tell you, that sweet baby girl is what keeps my attitude up!! She is the spirit that lights my path to good health. I want to know her for as long as I possibly can and someday know her sisters and brothers and my son's children, if we are lucky enough to have more grand-babies. You may not tell your mom everything, I'm sure she knows deep down and loves you all the more because you do not want her to worry anymore than she has to. You are a lovely daughter and now that you have your own child, you know the love that a mother feels for her children. Bless you and your mom. Good health and happiness to your family.
    I try very hard to keep my spirits up especially around my family (daughter 28, son 21 and my adorable husband) after all, they too are under a lot of stress. They don't need to feel my stress as well, they have their own. I have good friends that I can break down around. They are wonderful and seem to be able to handle my cancer because it is not directly related to them. Lean on who you can. You'd be surprised how many people are out there and willing to listen...just like you did. All the best to you...Bonnyboop
  • thank you
    thank you Member Posts: 77
    bonnyboop said:

    Bonnyboop
    I went on "thank you"s profile....you are the lady from Greece who's mom has cancer.....and you had a new baby!!! Thank you for your comment. You are doing exactly what you and your mom needs right now and I must tell you, that wee babe of yours is THE BEST MEDICINE you're mom can ever have. My daughter just had a daughter "Willow" May 26th 2009(exactly 2 wks after my 3rd treatment). I must tell you, that sweet baby girl is what keeps my attitude up!! She is the spirit that lights my path to good health. I want to know her for as long as I possibly can and someday know her sisters and brothers and my son's children, if we are lucky enough to have more grand-babies. You may not tell your mom everything, I'm sure she knows deep down and loves you all the more because you do not want her to worry anymore than she has to. You are a lovely daughter and now that you have your own child, you know the love that a mother feels for her children. Bless you and your mom. Good health and happiness to your family.
    I try very hard to keep my spirits up especially around my family (daughter 28, son 21 and my adorable husband) after all, they too are under a lot of stress. They don't need to feel my stress as well, they have their own. I have good friends that I can break down around. They are wonderful and seem to be able to handle my cancer because it is not directly related to them. Lean on who you can. You'd be surprised how many people are out there and willing to listen...just like you did. All the best to you...Bonnyboop

    to bonnyboop
    It's so relieving to read commends like yours! I am at starbucks trying to study for my rheumatology boards. I come here early morning each weekend to study, but many times it is so difficult to concentrate.... going back to what happened and what I should have done to prevent all this suffering of my mom.... Well it's done, and I can not change it.
    You are so right about the baby. They are so connected now. There are many times that I see them playing together and it is difficult to hold my tears. I know that it would be much more difficult to survive all this without my daughter. I remember that she was the one who pulled my mom's first hair after the chemotherapy. We were both shocked, but started laughing, so the baby won't be scared. We went to find wings and I was putting some crazy wings to my daughter's head... laughing again....
    The GOD sent your granddaughter to you at this time. I can imagine you hugging her, and as she grows older teaching her what you know. No matter if your daughter is a mom and has her own family SHE NEEDS YOU NOW and you will stay with her for LOOOOOONG TIME to help her rise all her children.
    Have a nice day
    Chrysoula
  • bonnyboop
    bonnyboop Member Posts: 9
    thank you said:

    to bonnyboop
    It's so relieving to read commends like yours! I am at starbucks trying to study for my rheumatology boards. I come here early morning each weekend to study, but many times it is so difficult to concentrate.... going back to what happened and what I should have done to prevent all this suffering of my mom.... Well it's done, and I can not change it.
    You are so right about the baby. They are so connected now. There are many times that I see them playing together and it is difficult to hold my tears. I know that it would be much more difficult to survive all this without my daughter. I remember that she was the one who pulled my mom's first hair after the chemotherapy. We were both shocked, but started laughing, so the baby won't be scared. We went to find wings and I was putting some crazy wings to my daughter's head... laughing again....
    The GOD sent your granddaughter to you at this time. I can imagine you hugging her, and as she grows older teaching her what you know. No matter if your daughter is a mom and has her own family SHE NEEDS YOU NOW and you will stay with her for LOOOOOONG TIME to help her rise all her children.
    Have a nice day
    Chrysoula

    To Chrysoula
    Good luck to you with your studies....a good thing to keep your mind occupied, but I can understand it would be hard to focus. You cannot dwell on what you cannot change. Just came home from seeing my "baby Willow". Rocked her to sleep.....and would have liked to stay beside her forever!!! Thank goodness my son-in-law is so understanding....we are there a lot!!! I never got a wig when I lost my hair. Just wore scarves. Some ladies from work lent me theirs and even a woman I never met before gave me a lovely pink one with "breast cancer" ribbons on it!! People are amazingly compasionate to strangers....our female connection I guess. My best to you and your family...keep your chin up. Boop
  • susie1143
    susie1143 Member Posts: 105
    unknown said:

    This comment has been removed by the Moderator

    Roll Call
    I was in peri-menopause and had migraines every month. The last few months I started to bleed a little more than usual. Instead of my primary care doctor I want to the gyn for my yearly physical. At that point he thought peri-menopause. However, my PAP came back abnormal. He than scheduled me for a D&C. Due to the position of the cancer, he could not finish the D&C. The Pathology report came back as Grade 3, mixed cell. I was then referred to a gyn/onc.

    The gyn/onc told me that upon looking at my path report, he thought that I would probably need chemo/radiation. He did explain that sometimes the path report from surgery is downgraded but he doubted this in my case.

    Surgery was done Aug 26th with everything removed. Luckily I had robotic surgery and was home the next day. The pathology report came back as a Stage 1C, Grade 2. My doctor had all smiles when he told me my diagnosis. According to him, no further treatment is necessary. However, I am in the process of getting a second opinion at Moffitt In Tampa, FL especially since the pathology reports were different. Moffitt is going to review the slides from both surgeries.

    This site has been very helpful because it seems that it's unknown what treatment is necessary for endometrial cancer. Seeing a few posts with others in the same stage and grade is very helpful. I've tried with little success to find any clinical trials for my stage. It seems that some doctors opt for further treatment (chemo/radiation) while others decide upon no further treatment. Also, I have been researching diet/nutrition regarding uterine cancer.

    Susie