Newly diagnosed

2

Comments

  • CindyGSD
    CindyGSD Member Posts: 190
    ingridjee said:

    MMMT stage three same treatment
    Thank you Trish for sharing.
    I am going through the same treatment, same stage, same operation, from 7 lymph glands 1 was cancerous but had it also on the right tube and ovary, and the cervix.
    They said it is aggressive and thus I need aggressive treatment.
    Now one more round of chemo - I did not get a break on tiredness, bad mouth taste, bone pain. I also had allergic reaction to chemo and take it with steroids. In one month I have chemo and then maybe one good week after chemo of feeling well .
    I wonder how is radiation, some people say side effects are less than chemo . Well, I guess I will know.

    I am taking a day at the time, afterall it is almost impossible to plan anything but I do feel lots of uncertainty, specially because even though I work at home, I feel too tired to work, an I have sore throats and cannot speak on the phone. The STD pays dirt and I wonder if I could go back to work after radiation or even with radiation! ;)

    Thanks for sharing!

    Radiation...
    I have MMMT as well. Had 3 rounds of chemo, now I'm getting radiation (25 rounds) which will be followed by three more rounds of chemo. I work full time (though I still have my disability just in case) and have had no issues so far with the radiation. I've only had 8 treatments though and from what I understand side effects take a couple of weeks to show up. That said it sounds like diarrhea and fatigue are the most prevalent of the side effects, so hopefully it won't be too bad. I'll post again, if the side effects become too bad.

    Good luck and take care.

    Cindy
  • ybrlabs
    ybrlabs Member Posts: 11
    ybrlabs said:

    Doctors now not sure
    I met with my gyn oncologist on 11/9 and he went over the pathology report with me in detail. The concern now is they can't identify if the cells are from the uterus or ovary. I'm scheduled to have an abdominal hysterectomy/exploratory laparotomy on 11/22. I'm really nervous but have faith in my doctor. To top it off, one of my miniature horses managed to kick me in my groin the other day and I now have a nice hoof shaped bruise. Guess he wanted the doctors to know I belonged to him. At least it wasn't one of my big horses.

    Any advice for me regarding the surgery and recovery? I don't do well in hospitals and will be fighting to get out ASAP! Not the best way to spend Thanksgiving but at least I know it will be done.

    Thanks

    Sandy

    Surgery Tuesday
    My surgery is scheduled for Tuesday. I'm scared of what they might find but I'm hoping knowing who or what I'm fighting will take away some of my fear. I am now thinking every sniffling nose and cough is a symptom I missed. I have a couple of swollen lymph nodes in my groin that are freaking me out. Of course they are located right where I have the bruise from my horse kick. I'm afraid I may cause even more anxiety for my husband.

    On a happy note, I got a cute short hair cut today and it was fun to step back and not worry.

    Thanks for the continued support


    Sandy
  • LizGrrr
    LizGrrr Member Posts: 127 Member
    ybrlabs said:

    Surgery Tuesday
    My surgery is scheduled for Tuesday. I'm scared of what they might find but I'm hoping knowing who or what I'm fighting will take away some of my fear. I am now thinking every sniffling nose and cough is a symptom I missed. I have a couple of swollen lymph nodes in my groin that are freaking me out. Of course they are located right where I have the bruise from my horse kick. I'm afraid I may cause even more anxiety for my husband.

    On a happy note, I got a cute short hair cut today and it was fun to step back and not worry.

    Thanks for the continued support


    Sandy

    For Sandy and for Trish
    Hi Sandy - I went through this just a couple of weeks ago. Had a laparoscopic hysterectomy last month for a fibroid, recovery was fast but the path reports came in with UPSC. I've been in a state of semi-denial since then which actually helps a bit.

    I had surgery on 11/7 to remove the cervix, top 1/3 of vagina, ovaries, tubes, nodes and omentum. Was in the hospital for 5 days - pain control was the biggest issue for me. Morphine and Benadryl combo helped but the best was Torodol - like a miracle drug.

    Got home on 11/12 and swelled up like a balloon all over. Not sure if it's just a normal side effect from surgery (had a similar situation after the hyst but that went away after a couple of days) or lymphedema but it's starting to get better. However on 11/17 I rushed to the onc and found out my incision is infected. Grrrr. I'm on powerful antibiotics and things are starting to improve again. I was supposed to have staples out this week but the infection's delaying that. Not sure what the chemo/radiation schedule will be - that's next on the agenda to discuss with the onc.

    Do what feels best for you. Ask for help. Leave your modesty at the door :)

    Trish - I'm in Irving and have been treated at Medical City. Are you close by?

    Hugs to all from Liz in Dallas
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    LizGrrr said:

    For Sandy and for Trish
    Hi Sandy - I went through this just a couple of weeks ago. Had a laparoscopic hysterectomy last month for a fibroid, recovery was fast but the path reports came in with UPSC. I've been in a state of semi-denial since then which actually helps a bit.

    I had surgery on 11/7 to remove the cervix, top 1/3 of vagina, ovaries, tubes, nodes and omentum. Was in the hospital for 5 days - pain control was the biggest issue for me. Morphine and Benadryl combo helped but the best was Torodol - like a miracle drug.

    Got home on 11/12 and swelled up like a balloon all over. Not sure if it's just a normal side effect from surgery (had a similar situation after the hyst but that went away after a couple of days) or lymphedema but it's starting to get better. However on 11/17 I rushed to the onc and found out my incision is infected. Grrrr. I'm on powerful antibiotics and things are starting to improve again. I was supposed to have staples out this week but the infection's delaying that. Not sure what the chemo/radiation schedule will be - that's next on the agenda to discuss with the onc.

    Do what feels best for you. Ask for help. Leave your modesty at the door :)

    Trish - I'm in Irving and have been treated at Medical City. Are you close by?

    Hugs to all from Liz in Dallas

    I live in Oak Cliff part of
    I live in Oak Cliff part of Dallas and my GynOnc Team is at UT Southwestern Cancer Center on Inwood & Harry Hines in Dallas. It in NCI recognized. Sorry you are having problems. My surgery went ok but I kept my staples in for two weeks after surgery. trish
  • RoseyR
    RoseyR Member Posts: 471 Member
    ingridjee said:

    MMMT stage three same treatment
    Thank you Trish for sharing.
    I am going through the same treatment, same stage, same operation, from 7 lymph glands 1 was cancerous but had it also on the right tube and ovary, and the cervix.
    They said it is aggressive and thus I need aggressive treatment.
    Now one more round of chemo - I did not get a break on tiredness, bad mouth taste, bone pain. I also had allergic reaction to chemo and take it with steroids. In one month I have chemo and then maybe one good week after chemo of feeling well .
    I wonder how is radiation, some people say side effects are less than chemo . Well, I guess I will know.

    I am taking a day at the time, afterall it is almost impossible to plan anything but I do feel lots of uncertainty, specially because even though I work at home, I feel too tired to work, an I have sore throats and cannot speak on the phone. The STD pays dirt and I wonder if I could go back to work after radiation or even with radiation! ;)

    Thanks for sharing!

    Don't Worry about Radiation ...

    Dear Ingridjee,

    I too was diagnosed with your form of cancer albeit stage IB and clear lymph nodes.
    Had the same treatment (am finished with it all) and had no side effects from the pelvic radiation--perhaps because my integrative doctor asked me to take 90 mgs of zinc chelate a day (a high dose but OK if just temporary) throughout treatment to protect lining of my intestines. Also took two teaspoons of fish oil a day and shark-liver capsules (two a day) to protect intestines. He also recommnded curcumin - 500 mgs x 3 a day.

    Best,
    Rosey
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    ybrlabs said:

    Doctors now not sure
    I met with my gyn oncologist on 11/9 and he went over the pathology report with me in detail. The concern now is they can't identify if the cells are from the uterus or ovary. I'm scheduled to have an abdominal hysterectomy/exploratory laparotomy on 11/22. I'm really nervous but have faith in my doctor. To top it off, one of my miniature horses managed to kick me in my groin the other day and I now have a nice hoof shaped bruise. Guess he wanted the doctors to know I belonged to him. At least it wasn't one of my big horses.

    Any advice for me regarding the surgery and recovery? I don't do well in hospitals and will be fighting to get out ASAP! Not the best way to spend Thanksgiving but at least I know it will be done.

    Thanks

    Sandy

    Sending Sandy prayers on her surgery day
    Sending you thoughts and prayers for your speedy recovery....

    Hope surgery went well and you can finally get some accurate results and then it will be off to treatment for you!

    We will be here to guide and support you every step of the way....

    Check in when you can..

    Laurie
  • ybrlabs
    ybrlabs Member Posts: 11

    Sending Sandy prayers on her surgery day
    Sending you thoughts and prayers for your speedy recovery....

    Hope surgery went well and you can finally get some accurate results and then it will be off to treatment for you!

    We will be here to guide and support you every step of the way....

    Check in when you can..

    Laurie

    Back home
    I had my surgery on the 22nd as planned and came home today. The good news is that the doctors could not find anything abnormal with a visual look. They removed a large section of Omentum, my appendix, lymph nodes, uterus, ovaries, and Fallopian tubes. Dr Abbas andDr Zucker saw nothing abnormal. We won't have the biopsy results for 7-10 days. I'm actually hoping something is found because what if nothing appears? Where did the papillary serous cells originate.

    I'm recovering as expected. Feeling pretty bloated but I can work thru this. I have to give myself the anti-DVT shots in the morning and am nervous about that.

    Thanks for all of the positive thoughts and prayers!

    Sandy
  • ybrlabs
    ybrlabs Member Posts: 11

    Sending Sandy prayers on her surgery day
    Sending you thoughts and prayers for your speedy recovery....

    Hope surgery went well and you can finally get some accurate results and then it will be off to treatment for you!

    We will be here to guide and support you every step of the way....

    Check in when you can..

    Laurie

    Back home
    I had my surgery on the 22nd as planned and came home today. The good news is that the doctors could not find anything abnormal with a visual look. They removed a large section of Omentum, my appendix, lymph nodes, uterus, ovaries, and Fallopian tubes. Dr Abbas andDr Zucker saw nothing abnormal. We won't have the biopsy results for 7-10 days. I'm actually hoping something is found because what if nothing appears? Where did the papillary serous cells originate.

    I'm recovering as expected. Feeling pretty bloated but I can work thru this. I have to give myself the anti-DVT shots in the morning and am nervous about that.

    Thanks for all of the positive thoughts and prayers!

    Sandy
  • ybrlabs
    ybrlabs Member Posts: 11

    Sending Sandy prayers on her surgery day
    Sending you thoughts and prayers for your speedy recovery....

    Hope surgery went well and you can finally get some accurate results and then it will be off to treatment for you!

    We will be here to guide and support you every step of the way....

    Check in when you can..

    Laurie

    Back home
    I had my surgery on the 22nd as planned and came home today. The good news is that the doctors could not find anything abnormal with a visual look. They removed a large section of Omentum, my appendix, lymph nodes, uterus, ovaries, and Fallopian tubes. Dr Abbas andDr Zucker saw nothing abnormal. We won't have the biopsy results for 7-10 days. I'm actually hoping something is found because what if nothing appears? Where did the papillary serous cells originate.

    I'm recovering as expected. Feeling pretty bloated but I can work thru this. I have to give myself the anti-DVT shots in the morning and am nervous about that.

    Thanks for all of the positive thoughts and prayers!

    Sandy
  • fanniemay
    fanniemay Member Posts: 53
    ybrlabs said:

    Back home
    I had my surgery on the 22nd as planned and came home today. The good news is that the doctors could not find anything abnormal with a visual look. They removed a large section of Omentum, my appendix, lymph nodes, uterus, ovaries, and Fallopian tubes. Dr Abbas andDr Zucker saw nothing abnormal. We won't have the biopsy results for 7-10 days. I'm actually hoping something is found because what if nothing appears? Where did the papillary serous cells originate.

    I'm recovering as expected. Feeling pretty bloated but I can work thru this. I have to give myself the anti-DVT shots in the morning and am nervous about that.

    Thanks for all of the positive thoughts and prayers!

    Sandy

    Glad to hear that drs havent
    Glad to hear that drs havent found anything. Waiting for the biopsy report is so hard. 7 to 10 days is a long time to wait. I had my results in 3. I have USPS stage 1A. See my dr. on 12/15 to get my treatment schedule. I will be thinking of you. This is a great, supportive group to belong to. Sounds like you have a great team of drs. working with you. Keep us posted. God bless, Edith
  • Tresia23
    Tresia23 Member Posts: 77
    ybrlabs said:

    Back home
    I had my surgery on the 22nd as planned and came home today. The good news is that the doctors could not find anything abnormal with a visual look. They removed a large section of Omentum, my appendix, lymph nodes, uterus, ovaries, and Fallopian tubes. Dr Abbas andDr Zucker saw nothing abnormal. We won't have the biopsy results for 7-10 days. I'm actually hoping something is found because what if nothing appears? Where did the papillary serous cells originate.

    I'm recovering as expected. Feeling pretty bloated but I can work thru this. I have to give myself the anti-DVT shots in the morning and am nervous about that.

    Thanks for all of the positive thoughts and prayers!

    Sandy

    Anti dvt shots
    Hi Sandy,

    Just read all of your posts. I agree with others, it is hard waiting for biopsy results. It is a strange time all round dealing with cancer. Try to rest and let others help you. You will heal better if you take things gently.

    With giving shots, I was also a bit squeamish even though I am an RN and have given many hundreds of injections to others. I just kept to a ritual with my own shots. Tried not to think of it as my body (a bit of disassociation!) and also told myself that it was helping to keep me well.

    It must have been difficult for you talking to your daughter.

    Thinking of you,
    Georgia
  • LizGrrr
    LizGrrr Member Posts: 127 Member
    ybrlabs said:

    Back home
    I had my surgery on the 22nd as planned and came home today. The good news is that the doctors could not find anything abnormal with a visual look. They removed a large section of Omentum, my appendix, lymph nodes, uterus, ovaries, and Fallopian tubes. Dr Abbas andDr Zucker saw nothing abnormal. We won't have the biopsy results for 7-10 days. I'm actually hoping something is found because what if nothing appears? Where did the papillary serous cells originate.

    I'm recovering as expected. Feeling pretty bloated but I can work thru this. I have to give myself the anti-DVT shots in the morning and am nervous about that.

    Thanks for all of the positive thoughts and prayers!

    Sandy

    bloat = edema
    I was really bloated too after my surgery. When the lymph nodes have been messed with, it takes the body awhile to figure out how to drain fluids. Turns out I was retaining 22 pounds of fluid. Got some compression socks and wore them 2-3 hours and almost immediately started peeing massive quantities. Also started oozing from my incision (well, gushing may be a better word). Lost 12 pounds in 36 hours. Ask your dr :)

    Like you I also had clean paths. Doc offered observation or chemo. I'm doing the chemo because I don't want to have to go through this ever again!

    Liz in Dallas
  • Sandi_Zert
    Sandi_Zert Member Posts: 3
    Hi Sandy,
    I am glad to see

    Hi Sandy,

    I am glad to see you are getting wonderful support from this sight. Hang in there! I am also having anxiety from "not knowing" what tyoe of cancer I have. This cancer escaped detection by a Pap smear I just had done 6 weeks ago so I am puzzled that I now have a once inch half solid, half fluid mass growing in my uterine wall. I went into the ER with severe abdominal distress and wished I had appendicitus rather than this. I am a busy professional and can't afford this crisis now. I hope I can remain active while I have treatment.
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    ybrlabs said:

    Back home
    I had my surgery on the 22nd as planned and came home today. The good news is that the doctors could not find anything abnormal with a visual look. They removed a large section of Omentum, my appendix, lymph nodes, uterus, ovaries, and Fallopian tubes. Dr Abbas andDr Zucker saw nothing abnormal. We won't have the biopsy results for 7-10 days. I'm actually hoping something is found because what if nothing appears? Where did the papillary serous cells originate.

    I'm recovering as expected. Feeling pretty bloated but I can work thru this. I have to give myself the anti-DVT shots in the morning and am nervous about that.

    Thanks for all of the positive thoughts and prayers!

    Sandy

    shots
    The shots, I could not do them myself, I got my daughter to do it as I am really bad when it comes to needles. My daughter was squimish at first but she got better. She freaked if I made a sound though so I tried not to. When I was in the hospital the nurses did it but at home my daughter had to do it. I tried to do it once but I could not do it after that she had to. If you have someone that you trust maybe they can help. Take it easy during recovery. trish
  • Ro10
    Ro10 Member Posts: 1,561 Member

    shots
    The shots, I could not do them myself, I got my daughter to do it as I am really bad when it comes to needles. My daughter was squimish at first but she got better. She freaked if I made a sound though so I tried not to. When I was in the hospital the nurses did it but at home my daughter had to do it. I tried to do it once but I could not do it after that she had to. If you have someone that you trust maybe they can help. Take it easy during recovery. trish

    Trisha, giving yourself shots is not easy
    I am a nurse. When I was pregnant I needed B 6 shots for severe nausea. I had a terrible time giving myself those shots. Even is I got the needle in my leg, I would have a hard time injecting the Medicine because it burned so bad. Luckily I had nurse friends that would give me the shots.
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    Ro10 said:

    Trisha, giving yourself shots is not easy
    I am a nurse. When I was pregnant I needed B 6 shots for severe nausea. I had a terrible time giving myself those shots. Even is I got the needle in my leg, I would have a hard time injecting the Medicine because it burned so bad. Luckily I had nurse friends that would give me the shots.

    shots
    I just cannot imagine giving myself a shot even in my leg. These shots had to go in my stomach and while I do have a lot of stomach to choose from I just could not do it. By the time the month of shots were up I was bruised all over. My daughter had a hard time finding a place that was not already bruised to pinch to give me the last few shots. I would pick a place and say ok give it to me here and she would say no. Twice her fiancé had to come and do it because she was afraid to do it. He gives himself insulin shots so he is not afraid at all. The only problem he had was to inject the medicine slowly so it did not burn. Tiffany did it fast a few time at first and it burned bad. All she did was saying I'm sorry, I'm sorry, I did not mean to hurt you. I can laugh about it now but then it hurt. I just wish I was not a baby about needles. My best friend’s daughter had to give herself shots when she was pregnant because of a blood disorder they found but she has a beautiful 18 month old now so I say it was worth it. trish
  • Hilajoan
    Hilajoan Member Posts: 21

    Surgery & recovery
    I can talk a little bit on this even though I did not have USPC, I was diagnosed with Malignant Mixed Mullerian Tumor (MMMT). The tumor itself was 5.5x5 cm and a 1A in the uterus but they found two microscopic cells in 1 lymph node and bumped it up to a stage 3c. I had the abdominal hysterectomy/exploratory 8 April 2011. The Gyn Onc Dr said surgery would last 5-6 hours but only lasted 3.5. The moving to regular room after recovery was hard as they wanted me to move from gurney to bed. I had 1 large man and 1 tiny nurse to help move me. Not fun, hurt really bad. But after I got settled Morphine push was nice. The next day the nurses told me I had to get up and set in a chair. Friends that had hysterectomies before told me to put a pillow on my stomach and push down as you tried to get up as it would help. They told me that the pillow would become my best friend during recovery. IT did work and I continued doing that for about 4 weeks after surgery, used it in the car too. The nurses had goals for me every day and would write them on a white board. Get up sit in chair, go to bathroom, walk the halls, take a shower (with nurse help), go for longer walk, etc. They also gave me a tubey thing to work on my breathing so my lungs did not get fluid build-up in them. You would put it in your mouth and breathe in and had to move the internal ball up to a certain number. I had to do this for 15 minutes times 3 times a day. They kept moving the number up too!
    I basically took myself off the morphine as I did like it but made me goofy. I kept till Sunday. Get ready to lose all sense of modesty as I was UT Southwestern Hospital were they also do teaching, so lots of Fellow Drs come in and out of room and check you out. They came in the AM and in the PM. I stayed the Hospital for 7 days Friday night till Friday morning. I went home with staples and a drain bag. I had tubes, ovaries, cervix, uterus, 14 lymph nodes and the omentum removed. I stayed off work for 8 weeks for surgery. Four weeks after surgery started Chemo (carbo/taxol combination) on 6 May. Every 21 days for 6 treatments ended 22 August. Hair fell out 25 May. I think the funniest was that my nasal hair fell out too! How can a person try to avoid getting sick when they have no protection against breathing in germs up their noses. I did not understand that. I chose not to do a wig, in Texas in the summer is HOT (we broke the record of hottest days in summer this year) so could not wear hats or scarves, I sweated too much. I just went bald back to work and out in public.
    I am NED as of 12 Sep when I had my first CT scan after all the chemo. My CA125 was 15 before surgery, went to 169 before chemo but it dropped each chemo treatment till now it is 19 as of Sep. I go back for another CT scan 22 Nov and blood work 2 Dec then see the GynOnc Dr on 5 Dec.
    Trying to change diet and exercise more, the change in diet is hard to break after 55 years of eating what I wanted. Maybe that is why I got the cancer, but there are healthy people on this site that got it too, so only God knows. Just remember that He is there to help carry you through this journey. There is a lot of information on this site and a lot of women to help answers questions and help with support if you need it.
    trish

    MMMT, CarcinoSarcoma, Surgery, recovery and the future
    I had 'radical' hysterectomy on 14 November - just over 2 weeks ago and have carcinosarcoma - used to be called MMMT. Someone recommended the MD Anderson Center in Texas - though we have good facilities in London (England, where I live) but I would travel if there were reason to. Chemo - 6 rounds - scheduled, followed by 25 sessions of pelvic radiation. Just not sure whether the poisoning of the body and the burning of it to protect it for the future is the best possible way forward. Any ideas, anyone? Joan
  • Hilajoan
    Hilajoan Member Posts: 21
    RoseyR said:

    Don't Worry about Radiation ...

    Dear Ingridjee,

    I too was diagnosed with your form of cancer albeit stage IB and clear lymph nodes.
    Had the same treatment (am finished with it all) and had no side effects from the pelvic radiation--perhaps because my integrative doctor asked me to take 90 mgs of zinc chelate a day (a high dose but OK if just temporary) throughout treatment to protect lining of my intestines. Also took two teaspoons of fish oil a day and shark-liver capsules (two a day) to protect intestines. He also recommnded curcumin - 500 mgs x 3 a day.

    Best,
    Rosey

    Don't Worry??
    Thanks, Rosey, I've made a note of your integrative doctor's recommendations - to ask my onc. on Friday when I go. Joan
  • Hilajoan
    Hilajoan Member Posts: 21
    CindyGSD said:

    Funny...
    Whenever anyone asks what kind of cancer I have, I say..."not the good kind". I think it's funny, but I'm not sure everyone does.

    Cindy
    MMMT (carcinosarcoma) Stage 2 high grade.

    Funny....
    People look at me somewhat tenderly, as they ask how I am..... I say cheerily, 'I'm great, thanks, how are you'? Hope it diffuses the sympathy (though I do appreciate it). They clearly think I am dying - but I don't - even though I had breast cancer earlier this year and a mastectomy, and now endometrial carcinosarcoma and hysterectomy. Wow, sounds terrible, doesn't it, but honestly, nothing hurts except the surgery wounds a bit..... Good luck all, Joan
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    LizGrrr said:

    bloat = edema
    I was really bloated too after my surgery. When the lymph nodes have been messed with, it takes the body awhile to figure out how to drain fluids. Turns out I was retaining 22 pounds of fluid. Got some compression socks and wore them 2-3 hours and almost immediately started peeing massive quantities. Also started oozing from my incision (well, gushing may be a better word). Lost 12 pounds in 36 hours. Ask your dr :)

    Like you I also had clean paths. Doc offered observation or chemo. I'm doing the chemo because I don't want to have to go through this ever again!

    Liz in Dallas

    When do you start the chemo?
    When do you start the chemo? Will you do it at the Irving hospital?
    trish