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

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Comments

  • daisy366
    daisy366 Member Posts: 1,458 Member

    Hello Teri
    Sad to hear you have joined us but glad you found us... Lot's of wonderful women here with great support and information.

    So sorry to hear about your sons wife, so, so sad.

    Please join in with all the conversations, we are all here holding each others hands!

    Marge

    newbornbunny
    I was not informed either at first. I still don't feel as informed as many here. I don't think my docs wanted me to have much info - they seemed stingy with the gory details maybe to spare me anxiety hopefully.

    This board has provided so much info and encouragement to be PROACTIVE. I was alone at first, and got my second opinion after gathering up my records, and now I have all these people to help answer questions and encourage me to ask my docs.

    So get copies of your records, ask questions of your team, research online (nccn.com has treatment guidelines) and this board is here for you. Don't be shy - this is your life!!

    Blessings, Mary Ann
  • Roll Call-UPSC
    Hi, I am Sheila in Orlando FL, 46 yrs old single Mom of 3,treated at Florida Hospital Cancer Institute. Diagnosed in May 09 UPSC stage 1 B grade 2. Had emergency Radical Hysterectomy after extremely heavy bleeding.
    45 lymph nodes removed, all clear. Not sure if abdominal washing occured, but def had omenectomy. had 4 chemo sessions of carbo/taxol every 3 weeks and followed by 6 rounds of bracy therapy radiation to vaginal cuff. Follow up is every 3 month CA 125 check and complete exam by my gyn/onc.He is very confident that I am all clear , but I am still in the freaking out stage, partially due to fact I have young children who need me (13 year old is youngest) I am the sole source of income and I missed 4 months of work due to heavy blood loss and then surgery recoup. I just want to know I have done all I can do to prevenet reoccurance.
  • daisy366
    daisy366 Member Posts: 1,458 Member

    Roll Call-UPSC
    Hi, I am Sheila in Orlando FL, 46 yrs old single Mom of 3,treated at Florida Hospital Cancer Institute. Diagnosed in May 09 UPSC stage 1 B grade 2. Had emergency Radical Hysterectomy after extremely heavy bleeding.
    45 lymph nodes removed, all clear. Not sure if abdominal washing occured, but def had omenectomy. had 4 chemo sessions of carbo/taxol every 3 weeks and followed by 6 rounds of bracy therapy radiation to vaginal cuff. Follow up is every 3 month CA 125 check and complete exam by my gyn/onc.He is very confident that I am all clear , but I am still in the freaking out stage, partially due to fact I have young children who need me (13 year old is youngest) I am the sole source of income and I missed 4 months of work due to heavy blood loss and then surgery recoup. I just want to know I have done all I can do to prevenet reoccurance.

    Stella,
    It sounds like you had the standard treatment that many have had on this site. I am UPSC stage 3a, grade 3 - and I had the 6 rounds of carbo/taxol - no radiation. You can check treatment protocols at nccn.com and see what other options there are.

    Many people are using alternative therapies in addition to traditional - I and others use meditation, exercise, yoga, diet, supplements, healing touch, accupuncture, massage separately or in combination. As Culka just mentioned, a positive attitude and talking and thinking health is important too.

    I don't think there are any guarantees - I wish there was because I would be first in line to sign up!!!

    Keep reading the many threads here and you will catch up on alot of info.

    Blessings to you and your family, Mary Ann
  • deanna14
    deanna14 Member Posts: 732
    daisy366 said:

    Stella,
    It sounds like you had the standard treatment that many have had on this site. I am UPSC stage 3a, grade 3 - and I had the 6 rounds of carbo/taxol - no radiation. You can check treatment protocols at nccn.com and see what other options there are.

    Many people are using alternative therapies in addition to traditional - I and others use meditation, exercise, yoga, diet, supplements, healing touch, accupuncture, massage separately or in combination. As Culka just mentioned, a positive attitude and talking and thinking health is important too.

    I don't think there are any guarantees - I wish there was because I would be first in line to sign up!!!

    Keep reading the many threads here and you will catch up on alot of info.

    Blessings to you and your family, Mary Ann

    Questions regarding alternative therapies....
    For Mary Ann of whoever may know...
    Can you explain the accupunture and what treatment you ask for. I just found out there is an accupunturist as my hospital. Also found out from a friend that works there that they had an alternative medicine coordinator, but thought she was too "out there," so they treated her badly until she left. Anyway, do I just make an appointment and tell them my diagnosis, or do a ask for a specific treatment? I don't know anything really about acupunture. They also have therapuetic massage therapist. Soon I will be starting Yoga with some friends and a Yoga trainer. I am excited about that. I try to eat healthy, but am not completely into the all green diet thing and enjoy junk food on occasion.
    Mary Ann... I will be right behind you in that guarantee line!!
  • kindraj4
    kindraj4 Member Posts: 2
    Satge IV
    My name is Kindra and I am currently in Spokane, wa having chemotherapy for stage IV endometrial cancer. I am taking taxol and cisplatin. I am 34 years old and this is my second cancer in two years, i was first diagnosed with colon cancer in 2007. This new cancer is a new primary and not a reoccurrence, I do have lynchsyndrome. Not sure what else to say.
  • deanna14
    deanna14 Member Posts: 732
    kindraj4 said:

    Satge IV
    My name is Kindra and I am currently in Spokane, wa having chemotherapy for stage IV endometrial cancer. I am taking taxol and cisplatin. I am 34 years old and this is my second cancer in two years, i was first diagnosed with colon cancer in 2007. This new cancer is a new primary and not a reoccurrence, I do have lynchsyndrome. Not sure what else to say.

    HI Kindra
    So sorry to hear of your difficulties. My brother was diagnosed Stage III Colon Cancer about 6 years ago, had chemo and has since done very well. He did not do DNA testing.
    I was diagnosed with uterine cancer 9/2008 and have since finished chemo and radiation and tested positive for lynch syndrome. They tell me like an 88% chance I will get colon cancer in my lifetime. They have offered to remove my colon, but I will just continue with the yearly colonoscopies for now.
    I hope you are doing well. I presume you had a total hyst. Any scans to assess effectiveness of the chemo? Hang in there!!
  • kindraj4
    kindraj4 Member Posts: 2
    deanna14 said:

    HI Kindra
    So sorry to hear of your difficulties. My brother was diagnosed Stage III Colon Cancer about 6 years ago, had chemo and has since done very well. He did not do DNA testing.
    I was diagnosed with uterine cancer 9/2008 and have since finished chemo and radiation and tested positive for lynch syndrome. They tell me like an 88% chance I will get colon cancer in my lifetime. They have offered to remove my colon, but I will just continue with the yearly colonoscopies for now.
    I hope you are doing well. I presume you had a total hyst. Any scans to assess effectiveness of the chemo? Hang in there!!

    Had a radical hysterectomy
    Had a radical hysterectomy done and am now doing once a week, 3 times a month for 6 months of chemotherapy followed by 5 weeks of radiation. We will rescan at the half way mark to see if the hot spots have decreased. My colon cancer was stage III and i did 6 months of chemo then as well and so far the colon part looks fine. Hopefully we will get this second primary into remission and i can finally sit back and enjoy life for a little bit. Thank you for the welcome!
  • daisy366
    daisy366 Member Posts: 1,458 Member
    kindraj4 said:

    Had a radical hysterectomy
    Had a radical hysterectomy done and am now doing once a week, 3 times a month for 6 months of chemotherapy followed by 5 weeks of radiation. We will rescan at the half way mark to see if the hot spots have decreased. My colon cancer was stage III and i did 6 months of chemo then as well and so far the colon part looks fine. Hopefully we will get this second primary into remission and i can finally sit back and enjoy life for a little bit. Thank you for the welcome!

    accupuncture
    Deanna,

    I really don't know what to ask for since I have not gotten accupuncture. But in dealing with massage therapists, I have learned that there is special oncology training in that field. So, I think it would make sense to ask if they have had oncology training and they should know what to so.

    For what it's worth - Mary Ann
  • Cecile Louise
    Cecile Louise Member Posts: 133
    daisy366 said:

    accupuncture
    Deanna,

    I really don't know what to ask for since I have not gotten accupuncture. But in dealing with massage therapists, I have learned that there is special oncology training in that field. So, I think it would make sense to ask if they have had oncology training and they should know what to so.

    For what it's worth - Mary Ann

    Another "lurker" checks in
    Hello to all! My name is Cecile (tacked on Louise to differentiate from the other Cecile, whoever you are...love your name!!) I was diagnosed with endometrial & papillary serous cancer of the uterus 2 years ago. I've had a total hysterectomy and 6 treatments of carbo/taxol. Normal paps, CT scans and pelvic exams ever since, although the last couple months am crampy, bloated, nauseous...hoping it's just a bug, but Doc is ordering another CT scan 2 months early. More about that later.
    I am so glad to have found you all. Thank you for sharing your journeys: your joy & sorrow, your strength and yes, even your weakness helps me cope in more ways than I can describe. Hugs all around.
  • california_artist
    california_artist Member Posts: 816 Member

    Another "lurker" checks in
    Hello to all! My name is Cecile (tacked on Louise to differentiate from the other Cecile, whoever you are...love your name!!) I was diagnosed with endometrial & papillary serous cancer of the uterus 2 years ago. I've had a total hysterectomy and 6 treatments of carbo/taxol. Normal paps, CT scans and pelvic exams ever since, although the last couple months am crampy, bloated, nauseous...hoping it's just a bug, but Doc is ordering another CT scan 2 months early. More about that later.
    I am so glad to have found you all. Thank you for sharing your journeys: your joy & sorrow, your strength and yes, even your weakness helps me cope in more ways than I can describe. Hugs all around.

    Cecile Louise
    Your post is the best Christmas present I could have gotten. There has been a lot of recurrence stories lately. I was beginning to think that perhaps chemo/radiation would not work for the people who have taken it, so your being proof of a two year survival has truly lightened my heart. Thank you so much for chiming in, even though you need no answers and your joining was only to lessen our load.

    Thank you. Thank you. Thank you.

    Claudia

    I noticed you were very young to have UPSC. Do you have children?

    Hugs right back at you, Cecile.
  • Ro10
    Ro10 Member Posts: 1,561

    Another "lurker" checks in
    Hello to all! My name is Cecile (tacked on Louise to differentiate from the other Cecile, whoever you are...love your name!!) I was diagnosed with endometrial & papillary serous cancer of the uterus 2 years ago. I've had a total hysterectomy and 6 treatments of carbo/taxol. Normal paps, CT scans and pelvic exams ever since, although the last couple months am crampy, bloated, nauseous...hoping it's just a bug, but Doc is ordering another CT scan 2 months early. More about that later.
    I am so glad to have found you all. Thank you for sharing your journeys: your joy & sorrow, your strength and yes, even your weakness helps me cope in more ways than I can describe. Hugs all around.

    Cecile Louise welcome
    Good to hear from you. Glad you have had two years of normal tests. Hope your CAT scan turns out to be normal too. In peace and caring.
  • Outlaw_Josie
    Outlaw_Josie Member Posts: 41
    deanna14 said:

    Questions regarding alternative therapies....
    For Mary Ann of whoever may know...
    Can you explain the accupunture and what treatment you ask for. I just found out there is an accupunturist as my hospital. Also found out from a friend that works there that they had an alternative medicine coordinator, but thought she was too "out there," so they treated her badly until she left. Anyway, do I just make an appointment and tell them my diagnosis, or do a ask for a specific treatment? I don't know anything really about acupunture. They also have therapuetic massage therapist. Soon I will be starting Yoga with some friends and a Yoga trainer. I am excited about that. I try to eat healthy, but am not completely into the all green diet thing and enjoy junk food on occasion.
    Mary Ann... I will be right behind you in that guarantee line!!

    Accupuncture
    My name is Josie. I am 59 years old and was diagnosed with uterine cancer on October 13, 2009. On November 17th I had a complete hysterectomy, lymph nodes removed and peritoneal wash leaving only my vagina intact. All paths came back negative with the only concern being that the cancer had invaded the myometrium to within 1cm of the interior serosa boundary. However, the margins were clear and there was no evidence of breach into the serosa. That makes me stage 1c. As of yesterday I am done with treatment and now under observation...my choice...paps and pelvics every 3 months for the next 2 years, every 6 for the following 3 and yearly after that. I plan to live long enough to be a pain to my kid's kids.

    Deanna...The therapist I spoke with asked what kind, where I was in treatment (I hadn't had my surgery at that point) and what my future treatment plans were. She was very careful to say that she did not promise a cure, but to assist my body in pain management, it's ability to help itself and in better tolerating chemo and radiation if that was one of my primary treatment choices. She went on to explain that accupuncture works with the body's internal meridians and her goal to was to make sure they were all open, aligned and working properly so that my body could be as well.

    As soon as I save up the bucks for the initial consult and treatment I plan to use it as one of my adjunctive thereapies for recuperation and future good health.

    Consider restorative yoga before you begin normal yoga classes as they are geared towards helping your body heal itself and make it strong enough to do the normal yoga classes...check with the instructor he/she will guide you to the right thing.

    I'm working on the food part.
  • SuziDezi
    SuziDezi Member Posts: 25
    One more sister
    Hi ladies

    This site is like a friendly staff room where you can talk about shared experiences. It has helped settle my mind as I work through the diagnosis of stage 1C UPSC (tumor extended to serosa but not through, no node involvement) that I received December 8, 2009 following a radical hysterectomy (Novemeber 2, 2009 - everything out). As with just about everyone else here, it was a real shock as no one had ever even suggested that this was a possibility. The doctors had painted the worst case scenario as very treatable because they all thought that the positive pap and slight bleeding indicated endometrial cancer and the D&C (September 18, 2009) did not show signs of advanced disease. The information you gals have provided sure helped formulate my questions and accept a treatment plan. I will begin chemo at the beginning of January (6 cycles of 21 days) then 5 weeks of external radiation (no brachy)The doctors are optimistic - but as we all know there are no guarantees. I will keep you posted as things progress - it is my way of giving back some of the support you have given me so far.

    Happy holidays everyone.

    Suze
  • Cecile Louise
    Cecile Louise Member Posts: 133
    SuziDezi said:

    One more sister
    Hi ladies

    This site is like a friendly staff room where you can talk about shared experiences. It has helped settle my mind as I work through the diagnosis of stage 1C UPSC (tumor extended to serosa but not through, no node involvement) that I received December 8, 2009 following a radical hysterectomy (Novemeber 2, 2009 - everything out). As with just about everyone else here, it was a real shock as no one had ever even suggested that this was a possibility. The doctors had painted the worst case scenario as very treatable because they all thought that the positive pap and slight bleeding indicated endometrial cancer and the D&C (September 18, 2009) did not show signs of advanced disease. The information you gals have provided sure helped formulate my questions and accept a treatment plan. I will begin chemo at the beginning of January (6 cycles of 21 days) then 5 weeks of external radiation (no brachy)The doctors are optimistic - but as we all know there are no guarantees. I will keep you posted as things progress - it is my way of giving back some of the support you have given me so far.

    Happy holidays everyone.

    Suze

    Hello, SuziDezi !!
    Welcome! You're right: this place is like no other...my mind is so much easier after finding this board. Thanks for sharing...and best wishes to you as you continue your journey!

    Hugs all around!
    Cecile
  • california_artist
    california_artist Member Posts: 816 Member
    SuziDezi said:

    One more sister
    Hi ladies

    This site is like a friendly staff room where you can talk about shared experiences. It has helped settle my mind as I work through the diagnosis of stage 1C UPSC (tumor extended to serosa but not through, no node involvement) that I received December 8, 2009 following a radical hysterectomy (Novemeber 2, 2009 - everything out). As with just about everyone else here, it was a real shock as no one had ever even suggested that this was a possibility. The doctors had painted the worst case scenario as very treatable because they all thought that the positive pap and slight bleeding indicated endometrial cancer and the D&C (September 18, 2009) did not show signs of advanced disease. The information you gals have provided sure helped formulate my questions and accept a treatment plan. I will begin chemo at the beginning of January (6 cycles of 21 days) then 5 weeks of external radiation (no brachy)The doctors are optimistic - but as we all know there are no guarantees. I will keep you posted as things progress - it is my way of giving back some of the support you have given me so far.

    Happy holidays everyone.

    Suze

    Welcome and sorry in the same breath.
    It's how we all feel. We are delighted to welcome you, and saddened/sorry you are having to be here.

    The best advice I can give you is to get copies of every single lab, CT, surgery report, chest x-ray, whatever test they do to you. Having this information will prove invaluable in the future as you progress through this journey.

    For instance, since you are not having brachytherapy, I will assume your cancer was not located in the lower portion of your uterus. But, without your report to refer to, you don't have that information. Most hospitals will also give you a copy of the cd where the results of both the written report and the actual ct scan can be taken home and viewed on your computer. Using the wheel on the mouse allows you to travel through your body. It's very, very interesting. My hospital never charges anything for these cds. Some have said that theirs does. If you ask the doctor's office for it there might be a charge. i would go to the hospital where the test/scan was done. You can usually get all results within a few days, so there's no need to wait the two or three weeks til you see the doctor and you have a chance to digest the information and come up with questions you need the answers to.

    I've found if you wait til the appointment, the news can cause your mind to shut down and you end up getting very little out of the appointment and have to reschedule to have your questions answered, and in some cases you feel like you might not want to bother the doctor and end up not getting the answers you need.

    Anyhow, best of luck in your journey. Due to there being so many women on the board, there are usually answers to any question you might have, along with a huge amount of hope, caring and empathy. That last one, empathy is something you rarely get from your doctor, they mean well, but have no idea what you are actually going through.

    You are not only your cells, which is what they seem to treat and be able to relate to.

    As always, love, hope, health, joy and success,

    Claudia
  • pjba11
    pjba11 Member Posts: 188

    Welcome and sorry in the same breath.
    It's how we all feel. We are delighted to welcome you, and saddened/sorry you are having to be here.

    The best advice I can give you is to get copies of every single lab, CT, surgery report, chest x-ray, whatever test they do to you. Having this information will prove invaluable in the future as you progress through this journey.

    For instance, since you are not having brachytherapy, I will assume your cancer was not located in the lower portion of your uterus. But, without your report to refer to, you don't have that information. Most hospitals will also give you a copy of the cd where the results of both the written report and the actual ct scan can be taken home and viewed on your computer. Using the wheel on the mouse allows you to travel through your body. It's very, very interesting. My hospital never charges anything for these cds. Some have said that theirs does. If you ask the doctor's office for it there might be a charge. i would go to the hospital where the test/scan was done. You can usually get all results within a few days, so there's no need to wait the two or three weeks til you see the doctor and you have a chance to digest the information and come up with questions you need the answers to.

    I've found if you wait til the appointment, the news can cause your mind to shut down and you end up getting very little out of the appointment and have to reschedule to have your questions answered, and in some cases you feel like you might not want to bother the doctor and end up not getting the answers you need.

    Anyhow, best of luck in your journey. Due to there being so many women on the board, there are usually answers to any question you might have, along with a huge amount of hope, caring and empathy. That last one, empathy is something you rarely get from your doctor, they mean well, but have no idea what you are actually going through.

    You are not only your cells, which is what they seem to treat and be able to relate to.

    As always, love, hope, health, joy and success,

    Claudia

    Welcome
    I too am a 1C UPSC. If I were to do anything different this time around (dx 10/2006) rather than the 6 prescribed chemos, pelvic rad 25 days, and 3 brachys... I would skip the 25 days of radiation. Seems the standards may be 'leaning' that way? Glad to see you found us and sad to know the reason. Hugs and happy holidays.
  • bots
    bots Member Posts: 53

    Another "lurker" checks in
    Hello to all! My name is Cecile (tacked on Louise to differentiate from the other Cecile, whoever you are...love your name!!) I was diagnosed with endometrial & papillary serous cancer of the uterus 2 years ago. I've had a total hysterectomy and 6 treatments of carbo/taxol. Normal paps, CT scans and pelvic exams ever since, although the last couple months am crampy, bloated, nauseous...hoping it's just a bug, but Doc is ordering another CT scan 2 months early. More about that later.
    I am so glad to have found you all. Thank you for sharing your journeys: your joy & sorrow, your strength and yes, even your weakness helps me cope in more ways than I can describe. Hugs all around.

    Also Lurking
    I have been lurking since August when I started by chemotherapy. I was diagnosed July 2, 2009 with endometrial papillary serous cancer. After sugery and staging, I was found to be Stage 1b grade 3. (I am 71 years old by the way.) My oncologist said I would have three or four "preventative" chemo sessions. After the third session I was having a lot of neuropathy in my hands and feet, so he and I together decided not to go on with the fourth. I had my last session on September 29 and will see my oncologist on January 20. He has not done a CAT scan and will have me have a CA-125 before I come in. He seems to be very conservative in his treatment in regard to exposing me to additional radiation or chemo. I hope he is right, but he has been at this for a long time and seems to be up on the latest research so I have decided to trust him.

    Bots is the name my granddaughter gave me, so I love it. My picture is a picture of a statue dedicated to "strong women" in the Bay Area. I am posing with my granddaughter (now eight years old) at the base of the statue. She and I are also strong women. At least I try to be--some days it's not so easy.

    Lori
  • Ro10
    Ro10 Member Posts: 1,561
    SuziDezi said:

    One more sister
    Hi ladies

    This site is like a friendly staff room where you can talk about shared experiences. It has helped settle my mind as I work through the diagnosis of stage 1C UPSC (tumor extended to serosa but not through, no node involvement) that I received December 8, 2009 following a radical hysterectomy (Novemeber 2, 2009 - everything out). As with just about everyone else here, it was a real shock as no one had ever even suggested that this was a possibility. The doctors had painted the worst case scenario as very treatable because they all thought that the positive pap and slight bleeding indicated endometrial cancer and the D&C (September 18, 2009) did not show signs of advanced disease. The information you gals have provided sure helped formulate my questions and accept a treatment plan. I will begin chemo at the beginning of January (6 cycles of 21 days) then 5 weeks of external radiation (no brachy)The doctors are optimistic - but as we all know there are no guarantees. I will keep you posted as things progress - it is my way of giving back some of the support you have given me so far.

    Happy holidays everyone.

    Suze

    SuziDezi - Welcome
    Sorry you are having to join this discussion board. Wishing you the best of luck with your chemo and radiation. I can remember the anxiety of getting the first chemo treatment. All of the unknown questions of how I would tolerate it. I have to say that it was not nearly as bad as I had anticipated it to be. I had very few side effects from the chemo. If I had not lost my hair, I would have wondered if they were giving me all those strong drugs. I had some problems after my 4th chemo after I had had radiation. There was no pain with the radiation treatments. I had some nausea from the radiation, but never did throw up. Fortunately I have not had any long term effects from the radiation, like some of the others have had. Hoping you have family and friends for support as you go through this journey. In peace and caring.
  • bots
    bots Member Posts: 53

    insufficient information
    Why do all of the people on this site know so much about your conditions--and all I know is Stage 1, "iffy," and "internal sunburn?" I definitely was not given sufficient information about my condition by any of my three doctors. I had to go to all of my appointments alone--no family, friends all work--and I was too stunned (and ignorant) to know what questions to ask. This problem concerns me a great deal. Basically, I know almost nothing about my condition.

    Ask, ask, ask
    Bunny,

    I hope you can find someone to go with you next time. I have found you have to ask, ask, and ask more for answers. Fortunately, my sister and husband both went with me in what I forgot, they remembered. Also, find out if your doctors have email. At Kaiser the doctors have email, and it is really great to be able to send a question and get an answer without waiting on the telephone or waiting for the next appointment.
  • Cecile Louise
    Cecile Louise Member Posts: 133

    Cecile Louise
    Your post is the best Christmas present I could have gotten. There has been a lot of recurrence stories lately. I was beginning to think that perhaps chemo/radiation would not work for the people who have taken it, so your being proof of a two year survival has truly lightened my heart. Thank you so much for chiming in, even though you need no answers and your joining was only to lessen our load.

    Thank you. Thank you. Thank you.

    Claudia

    I noticed you were very young to have UPSC. Do you have children?

    Hugs right back at you, Cecile.

    to California_Artist
    Thank you for your very kind response. Yes, my oncologist was very surprised to find UPSC, as I don't fit any of the common criteria: I wasn't (notice the past-tense, haha) overweight, no diabetes, I was 46 at diagnosis. Matter of fact, he said he would never have thought I had cancer had it not been for my gynecologist attempting a D&C following the discovery of polyps following a hysteroscopy. (I had bleeding between periods, thought it was just a nuisance and mentioned it during my well-woman exam, almost as an afterthought) I have no children maybe that was a contributing factor?

    Hugs,
    Cecile