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

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  • debrajo
    debrajo Member Posts: 1,095 Member
    endrometrial serous pappillary cancer....me, too!
    I am new here so I don't know the edicate of this board. I was diagnosed July 2009, but didn't get the surgery til 12-3-09 due to open heart surgery to replace an aortic valve that was 95% calsfied due to a birth defect. After a bovine valve I "suddenly got e-coli in my blood stream. They finialy did a radical hysterectmy in Dec. I can not get a straight answer from anyone! I was staged at 1a, had fivr rounds of vaginal radiatioo=n, and six rounds of Taxol/Carboplatin. I finished all treatments since May of 10, so I am 17 months in remission. The ca125 is on average 12-14, never over 17. Everyone at the hospital walks around me like walking on egg shells! And I am tired of it! The best answer I get about survivial time is "Every one is different. I may start screaming! Can any one talk to me about odds or expections? Thanks, Debrajo
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    debrajo said:

    endrometrial serous pappillary cancer....me, too!
    I am new here so I don't know the edicate of this board. I was diagnosed July 2009, but didn't get the surgery til 12-3-09 due to open heart surgery to replace an aortic valve that was 95% calsfied due to a birth defect. After a bovine valve I "suddenly got e-coli in my blood stream. They finialy did a radical hysterectmy in Dec. I can not get a straight answer from anyone! I was staged at 1a, had fivr rounds of vaginal radiatioo=n, and six rounds of Taxol/Carboplatin. I finished all treatments since May of 10, so I am 17 months in remission. The ca125 is on average 12-14, never over 17. Everyone at the hospital walks around me like walking on egg shells! And I am tired of it! The best answer I get about survivial time is "Every one is different. I may start screaming! Can any one talk to me about odds or expections? Thanks, Debrajo

    Stage 1-a, and you did the adjuvant chemo & brachytherapy?
    Debrajo, you can relax. With Stage 1a, if you did the surgery and adjuvant chemo and brachytherapy, your chances of never recurring are close to 100%! Yes, it could happen; UPSC is a very sneaky and aggressive cancer. But the likihood of you recurring when caught so early and with all the adjuvant treatment you did is so very very very small. Allow yourself to believe that you have beaten this and try to stop worrying.

    If I were lucky enough to be in your situation, I would slam the door on cancer in my mind and get on with my happy healthy life, and not give cancer another thought until it was time for my next checkup. Congratulations on your 17 month remission, and on the decades of remission that, statistically, are still to come for you! (((hugs)))
  • Lois B.
    Lois B. Member Posts: 10

    Hi, Lois, and welcome to the group!
    Welcome welcome! Yours is an encouraging story; 3 1/2 years with no recurrances! WONDERFUL!

    This long long thread probably brings more women to us than anything else, as it has always shown up on a Google search on UPSC on the 1st page. When you have time, you may enjoy reading the whole thread, as it is like a book written especially for only us, full of 'real time' experiences. Before we had our ouw "Uterine Cancer" Discussion Board, we all posted on this same thread under the "Gynecologic Cancers" Discussion Board of Cancer Survivor Network (CSN). But since then CSN has given us our own Uterine Cancer Discussion Board, and now you can post on specific topics, etc. Because this particular thread is so LONG, it loads so slowly that you may not get many responses. I suggest that you scroll up this page, and look at the column on your left, clicking on 'Discussion Boards'. Once you click on Discussion Boards, scroll down to the Uterine Cancer discussion board and click on that. Then please post a new discussion there, so that everyone can 'meet' you. ((((Lois))))

    Thanks for the Welcome
    It's so good to know that there are so many of us survivors of this cancer. Everyday that we live and breathe we are survivors. Since the topic is on uterine cancer - I will tell you all that I am not only a uterine cancer survivor but a breast cancer survivor since l993 with no recurrence.

    My stage for the uterine cancer is, I believe, a 1B, which I'm told with treatment is about 70-80% of no recurrence.

    Where do you follow-up or are you on maintenance therapy?

    I'll have to do as you suggest and look back over the previous posts.
  • debrajo
    debrajo Member Posts: 1,095 Member
    uterine cancer
    Thanks SOOOOOO much for all the positive feed-back on my rant! I feel so much better and can't imagin WHY the medical pro's can't give us straight answers and just a little hope! Don't they know we are grasping at straws about all the uncharted territory? I do feel some "surviver guilt" when so many of you have been through so much more than I have. I took one round of radiation a week for three weeks and three rounds in one week and had not one problem. The last three rounds were given during my first course of chemo. Again, almost no problems outside of muscle and joint pain from the waist down three days after chemo that only lasted 1-3 days. No nausia , no stomach distress, just gained 30 pounds I CANNOT get off. So many of you went through so much and then to have it come back! God bless all of you! Please keep me posted. I don't go back to M.D. Anderson til January...I am up to the once every 4 months level.

    I was told that UPSC occures, around the world, one in one million and since it is rare, almost an "orphan disease" there are no real trial studies or medicines going on. Is this true? Thanks again so much and I do think your ositive outlook will help to heal you completely! Debrajo
  • Loneville
    Loneville Member Posts: 1
    debrajo said:

    uterine cancer
    Thanks SOOOOOO much for all the positive feed-back on my rant! I feel so much better and can't imagin WHY the medical pro's can't give us straight answers and just a little hope! Don't they know we are grasping at straws about all the uncharted territory? I do feel some "surviver guilt" when so many of you have been through so much more than I have. I took one round of radiation a week for three weeks and three rounds in one week and had not one problem. The last three rounds were given during my first course of chemo. Again, almost no problems outside of muscle and joint pain from the waist down three days after chemo that only lasted 1-3 days. No nausia , no stomach distress, just gained 30 pounds I CANNOT get off. So many of you went through so much and then to have it come back! God bless all of you! Please keep me posted. I don't go back to M.D. Anderson til January...I am up to the once every 4 months level.

    I was told that UPSC occures, around the world, one in one million and since it is rare, almost an "orphan disease" there are no real trial studies or medicines going on. Is this true? Thanks again so much and I do think your ositive outlook will help to heal you completely! Debrajo

    Hullo from the UK
    I found this website tonight. I entered "Is ANYONE doing research on UPSC?" into GOOGLE and I found you all!!!!
    Things are very different here in the UK. For one thing, money for treatment is not the problem thanks to the jolly old NHS. BUT, UPSC is so rare, that no one is doing research into advanced disease here.
    I was diagnosed exactly a year ago and surgery confirmed Stage IIIC disease. After surgery, I was treated with 6 weeks pelvic and abdominal radiotherapy only. That finished in January this year 2011.
    I am a Medic, now retired at 56 because of the cancer, so I was not surprised when the lousy prognosis was confirmed!
    The plan for me is that when the cancer recurs, I will be treated with carboplatin alone.
    BUT and BUT: part of me feels that this is not quite right.......
    I am disease free 9 months after radio, my markers are down and, having been a keen endurance runner before I was ill, decided to bite the bullet and try something new. I did my first sprint Tri in July, swam a 1km open water challenge in August and took part in a 45 mile bike ride from Richmond to Windsor Castle. My current challenge is to swim the equivalent of the English Channel (22 miles), for a spinal injuries charity, in my local pool between now and December 4. I still run up to 15 miles a week.
    My only problems are lymphoedema of the trunk (such a bore, no more skinny jeans for me), and bowel side effects from the radiotherapy.
    Based on what you do in the States, I just wonder whether I should insist on agressive chemo now, before the cancer returns?
  • JoAnnDK
    JoAnnDK Member Posts: 275
    Loneville said:

    Hullo from the UK
    I found this website tonight. I entered "Is ANYONE doing research on UPSC?" into GOOGLE and I found you all!!!!
    Things are very different here in the UK. For one thing, money for treatment is not the problem thanks to the jolly old NHS. BUT, UPSC is so rare, that no one is doing research into advanced disease here.
    I was diagnosed exactly a year ago and surgery confirmed Stage IIIC disease. After surgery, I was treated with 6 weeks pelvic and abdominal radiotherapy only. That finished in January this year 2011.
    I am a Medic, now retired at 56 because of the cancer, so I was not surprised when the lousy prognosis was confirmed!
    The plan for me is that when the cancer recurs, I will be treated with carboplatin alone.
    BUT and BUT: part of me feels that this is not quite right.......
    I am disease free 9 months after radio, my markers are down and, having been a keen endurance runner before I was ill, decided to bite the bullet and try something new. I did my first sprint Tri in July, swam a 1km open water challenge in August and took part in a 45 mile bike ride from Richmond to Windsor Castle. My current challenge is to swim the equivalent of the English Channel (22 miles), for a spinal injuries charity, in my local pool between now and December 4. I still run up to 15 miles a week.
    My only problems are lymphoedema of the trunk (such a bore, no more skinny jeans for me), and bowel side effects from the radiotherapy.
    Based on what you do in the States, I just wonder whether I should insist on agressive chemo now, before the cancer returns?

    HI
    Glad to meet you here but sorry you had to find us.

    Is your treatment the "standard" in the UK?

    How are you monitored besides CA 125?

    Did you have a lot of lymph nodes removed? How many were "dirty"?

    My problem with a doctor saying "when the cancer recurs" is why not do everything one can do to prevent recurrence, especially at stage IIIc ?

    JOANN
  • HellieC
    HellieC Member Posts: 524 Member
    Loneville said:

    Hullo from the UK
    I found this website tonight. I entered "Is ANYONE doing research on UPSC?" into GOOGLE and I found you all!!!!
    Things are very different here in the UK. For one thing, money for treatment is not the problem thanks to the jolly old NHS. BUT, UPSC is so rare, that no one is doing research into advanced disease here.
    I was diagnosed exactly a year ago and surgery confirmed Stage IIIC disease. After surgery, I was treated with 6 weeks pelvic and abdominal radiotherapy only. That finished in January this year 2011.
    I am a Medic, now retired at 56 because of the cancer, so I was not surprised when the lousy prognosis was confirmed!
    The plan for me is that when the cancer recurs, I will be treated with carboplatin alone.
    BUT and BUT: part of me feels that this is not quite right.......
    I am disease free 9 months after radio, my markers are down and, having been a keen endurance runner before I was ill, decided to bite the bullet and try something new. I did my first sprint Tri in July, swam a 1km open water challenge in August and took part in a 45 mile bike ride from Richmond to Windsor Castle. My current challenge is to swim the equivalent of the English Channel (22 miles), for a spinal injuries charity, in my local pool between now and December 4. I still run up to 15 miles a week.
    My only problems are lymphoedema of the trunk (such a bore, no more skinny jeans for me), and bowel side effects from the radiotherapy.
    Based on what you do in the States, I just wonder whether I should insist on agressive chemo now, before the cancer returns?

    I am also from the UK
    Sorry that you had to join this group! I am also from the UK and I found this group a while back when Googling for research. I don't have UPSC but I have had two recurrences of endometrial adenocarcinoma (currently NED after latest surgery and chemo). The first recurrence was treated with external radiotherapy (best part of 60 Gy in total) and the second with surgery (Hartmann's) and chemo.
    I am sure that the "UPSC" ladies here will have lots of advice on the "standard" treatment protocol in the US. It may also be worth taking a look at the ovarian board here, as I understand that UPSC behaves like ovarian in some ways. The first line chemo seems to be taxol and carboplatin in a lot of cases (that's what I had, too) but others have had carbo only.
    Kindest wishes
    Helen
  • daisy366
    daisy366 Member Posts: 1,458 Member
    HellieC said:

    I am also from the UK
    Sorry that you had to join this group! I am also from the UK and I found this group a while back when Googling for research. I don't have UPSC but I have had two recurrences of endometrial adenocarcinoma (currently NED after latest surgery and chemo). The first recurrence was treated with external radiotherapy (best part of 60 Gy in total) and the second with surgery (Hartmann's) and chemo.
    I am sure that the "UPSC" ladies here will have lots of advice on the "standard" treatment protocol in the US. It may also be worth taking a look at the ovarian board here, as I understand that UPSC behaves like ovarian in some ways. The first line chemo seems to be taxol and carboplatin in a lot of cases (that's what I had, too) but others have had carbo only.
    Kindest wishes
    Helen

    Loneville
    Hi. I am a upsc sister - originally stage 3a 3 years ago. My initial treatment following surgery was the typical 6 rounds of carboplatin and taxol (I has a functional profile of biopsied tissue which confirmed that these were best chemos for me). I did NOT get adjuvent radiation as many/most others seem to get - my doctor did not recommend radiation for me. However I had recurrence in supraclavicular lymph nodes 15 months after completion of chemo. I then had carboplatin and radiation for that. I've been almost a year NED.

    I learned something from you. When I checked the NCCN guidelines which my doctor uses, I did not realize that radiation alone is an option listed there. I'm just curious what made your doctor choose this rather than chemo - let us know if you ask him.

    If I were you, I would discuss all this with my doctor. I also would change my thinking and don't "assume or expect" it will recur. That only puts a subconscious message in your brain and body.

    Even though you did not ask this, I will throw in my 2 cents about exercise. I have read that MODERATE exercise helps our immune system and discourages cancer. However vigorous exercise stresses the body which in turn lowers the immune system. Hence, I would encourage you to not overstress your body while training for your race. I applaud your exercise and will be cheering for you from the States!!!

    All the best. Mary Ann
  • germanlady
    germanlady Member Posts: 20
    bump

    bump
  • germanlady
    germanlady Member Posts: 20
    Lois B. said:

    USPC Survivor
    Good Evening Linda,

    Was just googling around and found this website. You are only the third person that I know that has had USPC. I was diagnosed with this in July 2008, underwent total hysterectomy, six rounds of chemo and five (I think) rounds of internal radiation. I live in Florida and was limited in my choice of Gyn/Oncologists. Well, after all the treatments - the doctor ordered a PET Scan and CA125 - the PET showed something going on in my lung and the CA125 was elevated. Then he called me to say I needed to come in to see him to discuss the options. I was not a happy camper but you have to do what you have to do. I saw him and he said now I'm treatable but not curable. So, I went for a second opinion - this doctor said to wait a while and repeat the tests. My daughter in-law who lives in Texas and is an RN said why don't you go to MD Anderson in Houston. So, I figured perhaps I could qualify for a trial and help someone down the road. My husband and I went to MD Anderson - and it was at that time I had another PET scan and blood work. Instead of waiting around the hospital for the results I told the doctor she could call me at my son's home in Texas and give me the results. Well, to make a long story short - she calls me on Friday - here I am with my granddaughter and husband at the community pool. The doctor told me she doesn't often have good news but after the studies and discussion with the specialists, I didn't have a recurrence and did not need further treatment. She said she'd see me in three months. Now it is September 2011 and I'll follow-up in six months' time. I'm so grateful to have found a group like this one.
    To give and receive encouragement is a blessing. Hope to hear from you.
    Lois

    so inspiring to read your
    so inspiring to read your story. Gives us all hope. Blessings to you
  • germanlady
    germanlady Member Posts: 20
    daisy366 said:

    Loneville
    Hi. I am a upsc sister - originally stage 3a 3 years ago. My initial treatment following surgery was the typical 6 rounds of carboplatin and taxol (I has a functional profile of biopsied tissue which confirmed that these were best chemos for me). I did NOT get adjuvent radiation as many/most others seem to get - my doctor did not recommend radiation for me. However I had recurrence in supraclavicular lymph nodes 15 months after completion of chemo. I then had carboplatin and radiation for that. I've been almost a year NED.

    I learned something from you. When I checked the NCCN guidelines which my doctor uses, I did not realize that radiation alone is an option listed there. I'm just curious what made your doctor choose this rather than chemo - let us know if you ask him.

    If I were you, I would discuss all this with my doctor. I also would change my thinking and don't "assume or expect" it will recur. That only puts a subconscious message in your brain and body.

    Even though you did not ask this, I will throw in my 2 cents about exercise. I have read that MODERATE exercise helps our immune system and discourages cancer. However vigorous exercise stresses the body which in turn lowers the immune system. Hence, I would encourage you to not overstress your body while training for your race. I applaud your exercise and will be cheering for you from the States!!!

    All the best. Mary Ann

    newbie
    Hello everyone, I was diagnosed Wednesday. I feel worse again today. I think I got this dreaded disease because of taking too many medications. For over 25 years, I have been taking lots of different meds for migraines. Have had gastroinestinal problems from the meds also. Nice to find this group. Blessings on all of you, Edith
  • germanlady
    germanlady Member Posts: 20
    daisy366 said:

    Loneville
    Hi. I am a upsc sister - originally stage 3a 3 years ago. My initial treatment following surgery was the typical 6 rounds of carboplatin and taxol (I has a functional profile of biopsied tissue which confirmed that these were best chemos for me). I did NOT get adjuvent radiation as many/most others seem to get - my doctor did not recommend radiation for me. However I had recurrence in supraclavicular lymph nodes 15 months after completion of chemo. I then had carboplatin and radiation for that. I've been almost a year NED.

    I learned something from you. When I checked the NCCN guidelines which my doctor uses, I did not realize that radiation alone is an option listed there. I'm just curious what made your doctor choose this rather than chemo - let us know if you ask him.

    If I were you, I would discuss all this with my doctor. I also would change my thinking and don't "assume or expect" it will recur. That only puts a subconscious message in your brain and body.

    Even though you did not ask this, I will throw in my 2 cents about exercise. I have read that MODERATE exercise helps our immune system and discourages cancer. However vigorous exercise stresses the body which in turn lowers the immune system. Hence, I would encourage you to not overstress your body while training for your race. I applaud your exercise and will be cheering for you from the States!!!

    All the best. Mary Ann

    newbie
    Hello everyone, I was diagnosed Wednesday. I feel worse again today. I think I got this dreaded disease because of taking too many medications. For over 25 years, I have been taking lots of different meds for migraines. Have had gastroinestinal problems from the meds also. Nice to find this group. Blessings on all of you, Edith
  • germanlady
    germanlady Member Posts: 20
    daisy366 said:

    Loneville
    Hi. I am a upsc sister - originally stage 3a 3 years ago. My initial treatment following surgery was the typical 6 rounds of carboplatin and taxol (I has a functional profile of biopsied tissue which confirmed that these were best chemos for me). I did NOT get adjuvent radiation as many/most others seem to get - my doctor did not recommend radiation for me. However I had recurrence in supraclavicular lymph nodes 15 months after completion of chemo. I then had carboplatin and radiation for that. I've been almost a year NED.

    I learned something from you. When I checked the NCCN guidelines which my doctor uses, I did not realize that radiation alone is an option listed there. I'm just curious what made your doctor choose this rather than chemo - let us know if you ask him.

    If I were you, I would discuss all this with my doctor. I also would change my thinking and don't "assume or expect" it will recur. That only puts a subconscious message in your brain and body.

    Even though you did not ask this, I will throw in my 2 cents about exercise. I have read that MODERATE exercise helps our immune system and discourages cancer. However vigorous exercise stresses the body which in turn lowers the immune system. Hence, I would encourage you to not overstress your body while training for your race. I applaud your exercise and will be cheering for you from the States!!!

    All the best. Mary Ann

    newbie
    Hello everyone, I was diagnosed Wednesday. I feel worse again today. I think I got this dreaded disease because of taking too many medications. For over 25 years, I have been taking lots of different meds for migraines. Have had gastroinestinal problems from the meds also. Nice to find this group. Blessings on all of you, Edith
  • germanlady
    germanlady Member Posts: 20

    newbie
    Hello everyone, I was diagnosed Wednesday. I feel worse again today. I think I got this dreaded disease because of taking too many medications. For over 25 years, I have been taking lots of different meds for migraines. Have had gastroinestinal problems from the meds also. Nice to find this group. Blessings on all of you, Edith

    Have my first consult with
    Have my first consult with the gyn/onco This Tuesday at 9:00 a.m. Thanks for listening. I am enjoying everyones posts. Edith
  • snowbird_11
    snowbird_11 Member Posts: 160

    Have my first consult with
    Have my first consult with the gyn/onco This Tuesday at 9:00 a.m. Thanks for listening. I am enjoying everyones posts. Edith

    Welcome, Edith, but sorry
    Welcome, Edith, but sorry you have a need to be here. I was diagnosed with UPSC 4 years ago, and was Stage IVB at staging/debulking surgery. You will know much more about what to expect after your gyn onc consult. Also, you will not know of any needed follow up treatment until after surgery and all pathology reports are in. Do not stress yourself with what may or may not have caused this as many healthy, active women with no prior health issues also get this disease. However you may find it helpful to read about what can affect cancer. - a book I recommend is Anti-Cancer A New Way of Life. This site will provide a great deal of information and the sharing of experiences as well as much support. Please ask any questions and use this to share your concerns, problems, experiences. We all learn so much from each other.
    Annie
  • deanna14
    deanna14 Member Posts: 732

    Hi, Lois, and welcome to the group!
    Welcome welcome! Yours is an encouraging story; 3 1/2 years with no recurrances! WONDERFUL!

    This long long thread probably brings more women to us than anything else, as it has always shown up on a Google search on UPSC on the 1st page. When you have time, you may enjoy reading the whole thread, as it is like a book written especially for only us, full of 'real time' experiences. Before we had our ouw "Uterine Cancer" Discussion Board, we all posted on this same thread under the "Gynecologic Cancers" Discussion Board of Cancer Survivor Network (CSN). But since then CSN has given us our own Uterine Cancer Discussion Board, and now you can post on specific topics, etc. Because this particular thread is so LONG, it loads so slowly that you may not get many responses. I suggest that you scroll up this page, and look at the column on your left, clicking on 'Discussion Boards'. Once you click on Discussion Boards, scroll down to the Uterine Cancer discussion board and click on that. Then please post a new discussion there, so that everyone can 'meet' you. ((((Lois))))

    Linda.... my heart is heavy!
    I was flipping back through this l oooooooo n g thread that started our journey those many scary months ago. Someone really should write a book or make a movie using all this insight we have recorded here.
    I simply wish that all the stories had happy endings. I was so lost and scared... we all were and we held hands have faced this monster together. Know that I am still holding your hand and you hold a piece of my heart. You are so courageous and are facing this new chapter with such grace! Thank you for always lifting us up and encouraging the warriors. Comfort is the key in the new chapter. I know you will make the most of every moment. Enjoy... (((Linda))) Thank you for being my friend! Stay comfortable... I will be checking in on you every day.

    PS... I don't like this part of the book!!
  • sleem
    sleem Member Posts: 92

    Have my first consult with
    Have my first consult with the gyn/onco This Tuesday at 9:00 a.m. Thanks for listening. I am enjoying everyones posts. Edith

    link 4 u
    C:\UPSC\Compass Early Uterine Papillary Serous Carcinoma.mht

    This link has been posted over time. Check it out. It has good history of the disease. Each of us has different backgrounds, ideas, & ways of handling UPSC. This article tells about what my journey was at MDA with 'sandwich' method. My ob/onco told me she was hitting my USPC with all that was available with both barrels. I was 1A grade 3 confined to one polyp in uterus. I'm 3 1/2 years out. I had chemo & radiation [vaginal), nodes removed even up to aorta, fat tissue from abdomen & all female parts gone. For me, this is what I selected. Everyone has their means to fight their USPC.

    I limit some things in my diet, do exercise in moderation. Spoke with a nutritionist at my hospital.

    This is a good place to receive support. It has helped me a lot from our fellow sisters.
    Wish that you didn't have to be here too; but it is a great help.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Sad News
    It is with great sadness that I make this post on behalf of my Mother, Linda Procopio. She passed away today after her long fight with Uterine Cancer. The Cancer Survivors Network Community provided Mom with wonderful support and my family is eternally grateful to you.

    Mom was blessed to be surrounded by our family as she passed and knew how loved she was in this life.

    Our family will keep each and every one of you in our prayers.
  • LizGrrr
    LizGrrr Member Posts: 127 Member

    newbie
    Hello everyone, I was diagnosed Wednesday. I feel worse again today. I think I got this dreaded disease because of taking too many medications. For over 25 years, I have been taking lots of different meds for migraines. Have had gastroinestinal problems from the meds also. Nice to find this group. Blessings on all of you, Edith

    A new member of the sisterhood...yay?
    Hi all - I'm a 45 year old pre-menopausal gal with 25 years of birth control pills in my system, so imagine my doctor's surprise when my laparoscopic hysterectomy for a fibroid turned up a grade 3 UPSC.

    The hysterectomy was on 10/17/11, the path reports came in on 10/20/11 which kind of put a gray cloud over what I was thinking was a really fast recovery.

    On 11/7/11 I had surgery #2 where I had a vertical incision made to take out the brachy, cervix, tubes, ovaries, nodes and omentum. Good news is that the paths came out all clear, bad news is that my uterus was morcellated during the laparoscopic hysterectomy so it looks like I'm in for chemo and/or radiation.

    I go in 11/22 for staple removal (anyone got insights on what that's like?) and on 11/23 I got back in to map out a chemo schedule. Happy Thanksgiving, lol!

    This thread has been helpful in managing my expectations about chemo and radiation and it's nice to have other ladies who I can relate to :)

    Liz
  • daisy366
    daisy366 Member Posts: 1,458 Member
    LizGrrr said:

    A new member of the sisterhood...yay?
    Hi all - I'm a 45 year old pre-menopausal gal with 25 years of birth control pills in my system, so imagine my doctor's surprise when my laparoscopic hysterectomy for a fibroid turned up a grade 3 UPSC.

    The hysterectomy was on 10/17/11, the path reports came in on 10/20/11 which kind of put a gray cloud over what I was thinking was a really fast recovery.

    On 11/7/11 I had surgery #2 where I had a vertical incision made to take out the brachy, cervix, tubes, ovaries, nodes and omentum. Good news is that the paths came out all clear, bad news is that my uterus was morcellated during the laparoscopic hysterectomy so it looks like I'm in for chemo and/or radiation.

    I go in 11/22 for staple removal (anyone got insights on what that's like?) and on 11/23 I got back in to map out a chemo schedule. Happy Thanksgiving, lol!

    This thread has been helpful in managing my expectations about chemo and radiation and it's nice to have other ladies who I can relate to :)

    Liz

    Liz
    Welcome to the sisterhood!! Re: the staple removal - very uneventful, nothing to fret about.

    I think your story speaks to the value of having a full abdominal hysterectomy from the get-go! I hope you are healing well.

    Some suggestions: having a port will save your veins. Get a tissue assay (functional profile) of the cancerous tissue (this will help determine best chemo regime for you). get copies of your records ongoing. ask questions (bring someone with you to appointments can help you with support, someone to help remember and ask questions). stay positive and learn about treatment options including integrative approaches. 2nd opinions are AOK if you would like one.

    Keep us posted here. We care. My best to you. Mary Ann