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

lindaprocopio
lindaprocopio Member Posts: 1,980
edited March 2014 in Uterine/Endometrial Cancer #1
I was diagnosed with UPSC, and had a total hysterectomy and 25 lymph nodes removed for staging 2 weeks ago. The cancer had penetrated into the 2nd half of the uterine wall and into 1 fallopian tube, but my cervix and ovaries (all cut out now) were clear. One of the 25 nodes removed showed microscopic traces of the cancer, jumping my diagnosis to Stage 3-C. So now I have another 2 weeks to heal from my surgery before radiation and chemo begin. I had absolutely NO symptoms; this was originally caught during a routine annual PAP test this July, (which apparently never happens). UPSC is very resistant to treatment with a high incidence of recurrance. I guess I was hoping to find someone else here with the same cancer type that would tell me that the upcoming long months and months of aggressive radiation/chemo will allow me to greet the spring cancer-free. I can't find anyone who has this rare cancer.
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Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #7
    deanna14 said:

    Radiation Day 1
    Well... it was a breeze. It took about 20 minutes from the time I got there until the time I was dressed and ready to leave. Each Wednesday after the treatment, I will see the doctor. So, I was actually there almost an hour today. The other four days will probably take less than 30 minutes. He said I would probably not have any side affects until about week three and that would be most likely diarrhea.
    It was a good day... I went to lunch with a friend and went shopping for a little while. Now I'm off to take a nap :-).

    That doesn't sound too bad!
    How reasurring! Thanks so much for letting me know; that's extremely kind of you. So far, it's been pretty lopsided as far as what I am able to offer you, compared to the valuable insights you are able to give me. But our shared journey has just begun and I hope to one day be in a position to return the favor. If you picture yourself in my shoes, then you know what a gift your information is for me. Please know how much it is appreciated. Stay rested!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #8
    lindaprocopio said:

    That doesn't sound too bad!
    How reasurring! Thanks so much for letting me know; that's extremely kind of you. So far, it's been pretty lopsided as far as what I am able to offer you, compared to the valuable insights you are able to give me. But our shared journey has just begun and I hope to one day be in a position to return the favor. If you picture yourself in my shoes, then you know what a gift your information is for me. Please know how much it is appreciated. Stay rested!

    About your "11" CA125...
    I neglected to congratulate you on your low CA-125 efter your surgery!! I know that you didn't have an established 'pre-surgery' number to compare it to, but I think you can hug that number to your heart and legitimately feel optimistic that your surgery removed all of the cancer already. Maybe I am reading too much into this imperfect tool, but I am anxiously awaiting my CA-125 number following my surgery. Mine was 50 prior to surgery and I will have blood drawn November 4th and have my 'after-surgery' number about a week after that. If I am lucky enough to have a number like yours, I will rest easy during the rest of my treatment, believing in my heart that the cancer is already gone from my body, and that all of the rest of this is just a precaution. I thought that might give you another happy thought to cling to in the dark of night when the worries sometimes creep in. I wouldn't let a low CA-125 stop me from having the radiation and chemo, but I do think it is a symbol of justifiable hope.
  • deanna14
    deanna14 Member Posts: 732
    #9
    lindaprocopio said:

    About your "11" CA125...
    I neglected to congratulate you on your low CA-125 efter your surgery!! I know that you didn't have an established 'pre-surgery' number to compare it to, but I think you can hug that number to your heart and legitimately feel optimistic that your surgery removed all of the cancer already. Maybe I am reading too much into this imperfect tool, but I am anxiously awaiting my CA-125 number following my surgery. Mine was 50 prior to surgery and I will have blood drawn November 4th and have my 'after-surgery' number about a week after that. If I am lucky enough to have a number like yours, I will rest easy during the rest of my treatment, believing in my heart that the cancer is already gone from my body, and that all of the rest of this is just a precaution. I thought that might give you another happy thought to cling to in the dark of night when the worries sometimes creep in. I wouldn't let a low CA-125 stop me from having the radiation and chemo, but I do think it is a symbol of justifiable hope.

    Thanks for the encouragement
    I hadn't thought of it that way, but thanks. I really needed that perspective. I've had a rough few days, emotionally. Somehow starting treatment just made it all so real! My doctor put me on Effexor after surgery, partially because it is used for the menopausal symptoms and partially because he suspected I might have some depression. He assured me that I am justified in feeling a little depressed at my age, going through what I am. I never thought I would need them, but I have been having trouble sleeping. I just can't seem to shut my brain "off." You know, the what ifs... In my heart, I know that everything will be alright and that I can't change any of it. I just have to go through it and trust that the Lord will bring me through it. But I still think what if I would have done this or that. Anyway, yea I think the CA-125 result is really a positive sign. Thanks.
    Are you doing okay? How are you emotionally? Are you going to work through treatment? Do you have a good support system, people you can lean on? I will be here for you. I try to check this site every day or every other day. Please, if you need to vent, I will be here. God bless you, you are in my prayers every day.
    I had a good long cry last night with the support of my fiance. I woke up early this morning feeling very refreshed!
    Take care, talk to you soon.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #10
    deanna14 said:

    Thanks for the encouragement
    I hadn't thought of it that way, but thanks. I really needed that perspective. I've had a rough few days, emotionally. Somehow starting treatment just made it all so real! My doctor put me on Effexor after surgery, partially because it is used for the menopausal symptoms and partially because he suspected I might have some depression. He assured me that I am justified in feeling a little depressed at my age, going through what I am. I never thought I would need them, but I have been having trouble sleeping. I just can't seem to shut my brain "off." You know, the what ifs... In my heart, I know that everything will be alright and that I can't change any of it. I just have to go through it and trust that the Lord will bring me through it. But I still think what if I would have done this or that. Anyway, yea I think the CA-125 result is really a positive sign. Thanks.
    Are you doing okay? How are you emotionally? Are you going to work through treatment? Do you have a good support system, people you can lean on? I will be here for you. I try to check this site every day or every other day. Please, if you need to vent, I will be here. God bless you, you are in my prayers every day.
    I had a good long cry last night with the support of my fiance. I woke up early this morning feeling very refreshed!
    Take care, talk to you soon.

    I am sort of 'between treatments'.
    I had my really dark days right after my diagnosis, 1 bad night after I researched UPSC reoccurance rates; and another bad night when I got my Stage 3C pathology diagnosis. I sobbed both times more than I've ever cried for anyone or anything else in my life. (I don't know what that actually says about me as a person, but it's true.) I woke up one night crying, after dreaming of making love to my husband, afraid that I may never be that person again. But most of the time I push away all thoughts of it. I have my own business, and work from home (www.procopiofundraising.com) and have been very busy training people to do as much of my work as I think they can handle, reassuring my 24 clients that there will be no disruption in service, and doing extended planning of assignments for the staff. (Ordinarily I only plan out 2 months; I am now trying to have a tentative work plan for each client that extends out a full year.) I was pretty miserable the 1st week after my surgery, but I do not tolerate medication well (which doesn't bode well for my chemo) and haven't taken any pain killers of any kind since 2 days after my surgery. And now it's 3 weeks since my surgery and I am just now feeling good enough to do light work out in the garden, and go out to eat with friends, and tonight my grandchildren will sleep over for the 1st time since my surgery. So I guess I am in that brief period between treatments where life almost seems normal, almost. I have always been one of those busy busy busy people, scurrying around always productive, squeezing the most out of every moment of the day, trying to 'have it all'. I went to the gym every day, and am an organic gardener with huge gardens I love to work in. I am very close with my children and I have a wonderful (abeit anxiety-ridden) husband of 11 years who is having a worst time with this than I am. My oldest son is an attorney (35) and lives 5 hours away but has been home twice since my diagnosis. My youngest son (age 33) and his wife and 2 kids live less than 2 miles away and my schedule has always been filled with the grandkid's sports and school events and weekly sleep-overs and 'Grammy Days'; coupled with a 60-hour work week that extends until 11 pm each night. I have a couple of wonderful long-time girlfriends. I am blessed with a great support system. So, that's the LONG answer to how I am doing emotionally. Right now, between treatments, I am doing surprisingly well. Now, if my 'after surgery' CA-125 goes up when I get my results back around Nov 11th, I can see myself spiraling downward with the implications of that. But I try not to 'borrow trouble'. It's hard not to peek around corners and try and guess what is coming next. But try not to do the 'what ifs'. It just makes you unhappy and anxious. Even if you are not religious "put it in God's hands". I try not to show my fear and grief to my family, so finding you to talk to is really wonderful. Thanks.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #11
    deanna14 said:

    Thanks for the encouragement
    I hadn't thought of it that way, but thanks. I really needed that perspective. I've had a rough few days, emotionally. Somehow starting treatment just made it all so real! My doctor put me on Effexor after surgery, partially because it is used for the menopausal symptoms and partially because he suspected I might have some depression. He assured me that I am justified in feeling a little depressed at my age, going through what I am. I never thought I would need them, but I have been having trouble sleeping. I just can't seem to shut my brain "off." You know, the what ifs... In my heart, I know that everything will be alright and that I can't change any of it. I just have to go through it and trust that the Lord will bring me through it. But I still think what if I would have done this or that. Anyway, yea I think the CA-125 result is really a positive sign. Thanks.
    Are you doing okay? How are you emotionally? Are you going to work through treatment? Do you have a good support system, people you can lean on? I will be here for you. I try to check this site every day or every other day. Please, if you need to vent, I will be here. God bless you, you are in my prayers every day.
    I had a good long cry last night with the support of my fiance. I woke up early this morning feeling very refreshed!
    Take care, talk to you soon.

    How did 1st week of radiation go?
    You've been on my mind. I was wondering how the 1st week of radiation went. You okay? I see my radiology oncologist for the 1st time Monday, so it looks like I will be joining you with the daily radiation routine very soon. Please let me know that you are okay.
  • pjba11
    pjba11 Member Posts: 188
    #12
    USPC Grade 3 Stage 1C
    You sound so much like me. I was diagnosed 2YEARS ago. I have maxed out on a hysty, chemo, radiation and internal radiation. If you have any questions or would like to hear more of my story... just ask. Fight the fight. The journey is scarey and long. Life changes with one phone call and one word.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #13
    pjba11 said:

    USPC Grade 3 Stage 1C
    You sound so much like me. I was diagnosed 2YEARS ago. I have maxed out on a hysty, chemo, radiation and internal radiation. If you have any questions or would like to hear more of my story... just ask. Fight the fight. The journey is scarey and long. Life changes with one phone call and one word.

    I would LOVE to hear your story!
    2 years! I so wish you will be telling me that you had no re-occurance and that you are NED (No Evidence of Disease: a new abbreaviation I just learned!). But even if your story doesn't yet have that happy ending, I still very much want to hear it. I do better when I am prepared for unpleasantness. By 'maxing out' do you mean you did the full schedule prescribed, or that you took it as far as your body would allow before toxifying? I know everyone's different, but if you are still having side effects from the radiation, that could help me. You were Stage 1; I am Stage 3, so I may not have the option of NOT having full abdominal radiation.
  • pjba11
    pjba11 Member Posts: 188
    #14
    lindaprocopio said:

    I would LOVE to hear your story!
    2 years! I so wish you will be telling me that you had no re-occurance and that you are NED (No Evidence of Disease: a new abbreaviation I just learned!). But even if your story doesn't yet have that happy ending, I still very much want to hear it. I do better when I am prepared for unpleasantness. By 'maxing out' do you mean you did the full schedule prescribed, or that you took it as far as your body would allow before toxifying? I know everyone's different, but if you are still having side effects from the radiation, that could help me. You were Stage 1; I am Stage 3, so I may not have the option of NOT having full abdominal radiation.

    NED
    NED!!! I had not heard that term. BUT YES!! USE IT FOR ME!! IT FITS. How I pray it 'fits' you soon too!! My prayers are with you.
  • pjba11
    pjba11 Member Posts: 188
    #15
    lindaprocopio said:

    I would LOVE to hear your story!
    2 years! I so wish you will be telling me that you had no re-occurance and that you are NED (No Evidence of Disease: a new abbreaviation I just learned!). But even if your story doesn't yet have that happy ending, I still very much want to hear it. I do better when I am prepared for unpleasantness. By 'maxing out' do you mean you did the full schedule prescribed, or that you took it as far as your body would allow before toxifying? I know everyone's different, but if you are still having side effects from the radiation, that could help me. You were Stage 1; I am Stage 3, so I may not have the option of NOT having full abdominal radiation.

    maxed out
    I am sorry I was so caught up in all of this that I may not have answered you question on maxing out... I had all of my treatments except I stopped after 5 chemos instead of 6. My Dr was very supportive of this. She said she had nothing to support the theory that 6 would 'cure' me and 5 would not. We are all different. I did do the rest of my 25 radiation (external) and 3 internal. I still have to use a dialator and cannot do estrogen. But no other meds. My hair came back thicker and instead of stick straight as I had ... it was curly! Now it is straight and not as thick. But it was fun while it lasted... I have a full body scan every 3 months and a CA 125 every 3 months. So far so good. I wish all of the best to your future too. My prayers are with you. If I had known 2 years ago what I know now none of it would have been as difficult. Hang in there. May any 'surprises' be good ones.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #16
    pjba11 said:

    maxed out
    I am sorry I was so caught up in all of this that I may not have answered you question on maxing out... I had all of my treatments except I stopped after 5 chemos instead of 6. My Dr was very supportive of this. She said she had nothing to support the theory that 6 would 'cure' me and 5 would not. We are all different. I did do the rest of my 25 radiation (external) and 3 internal. I still have to use a dialator and cannot do estrogen. But no other meds. My hair came back thicker and instead of stick straight as I had ... it was curly! Now it is straight and not as thick. But it was fun while it lasted... I have a full body scan every 3 months and a CA 125 every 3 months. So far so good. I wish all of the best to your future too. My prayers are with you. If I had known 2 years ago what I know now none of it would have been as difficult. Hang in there. May any 'surprises' be good ones.

    Thanks soooo much!
    Yours is the success story I have been trying so hard to find. I could HUG you! Was it the internal rads that left you needing to use the dilator? I may not have a choice, and I DO want to be aggressive, but I have always LOVED my sex life and so worry about all that with the radiation. My husband says he'd go without sex forever to have me live, but I'm not going to let that happen if I can help it. Does the radiation oncologist talk about that openly or do I need to ask about that possible side effect? I am Stage 3, so I think they'll be doing all the radiation and chemo my body can take. If I get any news tomorrow about my treatment calendar, I'll post here again when I get home.
  • pjba11
    pjba11 Member Posts: 188
    #17
    lindaprocopio said:

    Thanks soooo much!
    Yours is the success story I have been trying so hard to find. I could HUG you! Was it the internal rads that left you needing to use the dilator? I may not have a choice, and I DO want to be aggressive, but I have always LOVED my sex life and so worry about all that with the radiation. My husband says he'd go without sex forever to have me live, but I'm not going to let that happen if I can help it. Does the radiation oncologist talk about that openly or do I need to ask about that possible side effect? I am Stage 3, so I think they'll be doing all the radiation and chemo my body can take. If I get any news tomorrow about my treatment calendar, I'll post here again when I get home.

    the changes
    It is of my opinion that you do not have to be concerned about your sex life from what I have experienced... the Dr actually recommends sex a minumum of 3 times a week or use your dialator that often to keep your muscles closer to normal. The rad dept gals brought me the dialators and told me about the cause... otherwise I knew nothing about this. It was a surprise to me, but I would have gone through all of it either way. The internal treatments were not bad. The simulation takes any surprises away. There is no pain, maybe just a steady pressure sensation. 1/3 of my vagina was taken in my surgery. I was told it is the combination of radiations that causes atrophy..spelling?? I have also been told that taking fish oil capsulses will really help. Many have a very thin lining left in the vagina because of no estrogen. It really is not that big of a factor. Life is great. I will be waiting to hear all of your GOOD NEWS. PS MY oncologist and I had a great time laughing when I told her that the gals actually asked me how big my husband was. ( so she knew what size dialator to send with me.) I skirted the issue enough that they sent me 3 sizes just in case..... IS NOTHING SACRED HERE!! HA!! ONce again you have my prayers. Good luck.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #18
    pjba11 said:

    the changes
    It is of my opinion that you do not have to be concerned about your sex life from what I have experienced... the Dr actually recommends sex a minumum of 3 times a week or use your dialator that often to keep your muscles closer to normal. The rad dept gals brought me the dialators and told me about the cause... otherwise I knew nothing about this. It was a surprise to me, but I would have gone through all of it either way. The internal treatments were not bad. The simulation takes any surprises away. There is no pain, maybe just a steady pressure sensation. 1/3 of my vagina was taken in my surgery. I was told it is the combination of radiations that causes atrophy..spelling?? I have also been told that taking fish oil capsulses will really help. Many have a very thin lining left in the vagina because of no estrogen. It really is not that big of a factor. Life is great. I will be waiting to hear all of your GOOD NEWS. PS MY oncologist and I had a great time laughing when I told her that the gals actually asked me how big my husband was. ( so she knew what size dialator to send with me.) I skirted the issue enough that they sent me 3 sizes just in case..... IS NOTHING SACRED HERE!! HA!! ONce again you have my prayers. Good luck.

    I thank you; my HUSBAND thanks you! ;D
    You are giving me the reasurrance I need; I am in your debt! I wish that 'deanna14' would pop back in and let me know she's okay after her 1st full week of radiation. Your 'happy ending' would be so good for her to read; it's wonderful to know someone that came through all this and is healthy and happy again. Deanna is only 33, so has the instant menopause that I was spared since 'the change' was years ago for me, long before the cancer. Your cheery posts would be much better for her than my slightly anxious ones! Sex 3 times a week; that sounds good after a month of 'restrictions' with another 4 weeks before I will be back in commission following the surgery. With my luck I will be too sore and dehydrated by then from the radiation to even care! HA!
  • pjba11
    pjba11 Member Posts: 188
    #19
    welcome!!
    Yes, I hope to hear from her too. We are all in this together. Just another bit of humor (which can be so hard to find some days) When I was being told about the dialators the nurse practioner was trying so hard to get me to understand that I had to use the dialater or have sex 3 time at least 3X week and that it was so very important... she must have said this 6 times... finally I couldn't help myself... I said "well, I will try to cut my husband back to that ,,, but who knows how that will go." The look on her face was priceless. I had to keep a straight face all the way out into the hallway. I think a lot of people getting off the elevator wondered what could be so funny in onlcology. KEEP THE FAITH!!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #20
    pjba11 said:

    welcome!!
    Yes, I hope to hear from her too. We are all in this together. Just another bit of humor (which can be so hard to find some days) When I was being told about the dialators the nurse practioner was trying so hard to get me to understand that I had to use the dialater or have sex 3 time at least 3X week and that it was so very important... she must have said this 6 times... finally I couldn't help myself... I said "well, I will try to cut my husband back to that ,,, but who knows how that will go." The look on her face was priceless. I had to keep a straight face all the way out into the hallway. I think a lot of people getting off the elevator wondered what could be so funny in onlcology. KEEP THE FAITH!!

    HA! HA! HA! HA! HA! That's so great!
    OHHHHHH! I hope I get a chance to use that one!! That's hysterical! You made my night! :D
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #21
    pjba11 said:

    welcome!!
    Yes, I hope to hear from her too. We are all in this together. Just another bit of humor (which can be so hard to find some days) When I was being told about the dialators the nurse practioner was trying so hard to get me to understand that I had to use the dialater or have sex 3 time at least 3X week and that it was so very important... she must have said this 6 times... finally I couldn't help myself... I said "well, I will try to cut my husband back to that ,,, but who knows how that will go." The look on her face was priceless. I had to keep a straight face all the way out into the hallway. I think a lot of people getting off the elevator wondered what could be so funny in onlcology. KEEP THE FAITH!!

    They want to do the CHEMO 1st, THEN the radiation!
    Hi, pjba11! (Is there another name I can use??) I'm posting this here, hoping that Deanna and Marge will find their way to this thread, so that we four 'UPSC sisters' will be in one place. I had my initial consultation with my radiology oncologist, and he thinks I should have my chemo 1st before the radiation. He says that radiation sometimes compromises the bone marrow to the point where you are then unable to complete all of the chemo rounds. The radiation doctor echoed what you said: he said he almost never does full abdominal radiation anymore because the side effects are so extreme, and that he would want to do pelvic radiation initially after the chemo, followed by internal radiation. (I guess he saves full abdominal radiation for reoccurance or something!) He also echoed your sentiment that the higher post-surgery CA125 was probably a reaction to the surgery itself and that I shouldn't worry about that. (You are AMAZING! I'm paying him big bucks to tell me what you told me for free! Thank you!) So now I wait for the chemo oncologist to call for a consultation. (I'm no good at waiting; I'll call him if many days go by!) Meanwhile the radiology doc ordered an abdominal / pelvis CT-scan, & chest Xray for this Thursday. Oh, and I never expected the radiation doctor to do an internal exam, but he DID! (even a rectal poke around! EW!) I really wanted to come out of today's appointment with a treatment schedule so that I could plan Thanksgiving and Christmas and know if I will be well enough to cook and entertain. Ah, well. We can do 'take out' Thanksgiving if need be!
  • pjba11
    pjba11 Member Posts: 188
    #22
    lindaprocopio said:

    They want to do the CHEMO 1st, THEN the radiation!
    Hi, pjba11! (Is there another name I can use??) I'm posting this here, hoping that Deanna and Marge will find their way to this thread, so that we four 'UPSC sisters' will be in one place. I had my initial consultation with my radiology oncologist, and he thinks I should have my chemo 1st before the radiation. He says that radiation sometimes compromises the bone marrow to the point where you are then unable to complete all of the chemo rounds. The radiation doctor echoed what you said: he said he almost never does full abdominal radiation anymore because the side effects are so extreme, and that he would want to do pelvic radiation initially after the chemo, followed by internal radiation. (I guess he saves full abdominal radiation for reoccurance or something!) He also echoed your sentiment that the higher post-surgery CA125 was probably a reaction to the surgery itself and that I shouldn't worry about that. (You are AMAZING! I'm paying him big bucks to tell me what you told me for free! Thank you!) So now I wait for the chemo oncologist to call for a consultation. (I'm no good at waiting; I'll call him if many days go by!) Meanwhile the radiology doc ordered an abdominal / pelvis CT-scan, & chest Xray for this Thursday. Oh, and I never expected the radiation doctor to do an internal exam, but he DID! (even a rectal poke around! EW!) I really wanted to come out of today's appointment with a treatment schedule so that I could plan Thanksgiving and Christmas and know if I will be well enough to cook and entertain. Ah, well. We can do 'take out' Thanksgiving if need be!

    from pj
    What a day you have had... I finally remembered that the Einstein Institute had the phase 2 clinical trial on upsc. I hope you take the time to research this. I feel that and a suppliment I am taking is why I am alive. This trial specifically wants the 3 chemos then the radiation then the other 3 chemos then the brachy. I had to really fight to get my Drs to do this. But I/they did it. I have never had any rad. do any internals. The only internal I had was from my gyn/oncologist. The people who worked on me wanted to leave everything alone so that I could heal from my hysti. My oncologist has never done any internal. I passed up the first rad Dr. he gave me the creeps and he was not even close to wanting to hear how I wanted my treatments sandwiched. 'he would set up my routine' HA! When I went to the next Rad dept they had a long office call to discuss what I wanted to do and then sent me home.. 5 hour drive. The next appointment that amazing Dr had the complete clinical trial IN HAND A MIRACLE. He said he had to go through H and back to get the complete trial for me .... but I know in my heart and mind that he saved/extended my life to this point. We did the simulation and on we went. I am also taking a suppliment that is my 'mini kemo.' I do not know if I am able to talk about suppliments on this site. I do not sell it. My cousin had cancer and was sent home in a wheel chair to die then he found this suppliment (out of the thousands on the internet) went on this suppliment and he is alive and well for at least 5 years now. ( in my opinion that was not chance..) You have a lot of decisions to make... how well I remember!! What ever you decide to do will be a step in the right direction as long as it is aggressive. Most of what you have to deal with is not bad. I can not think of a thing that would make me stop doing it all again if I had to. I did not get a port for my chemo. Drink at least a bottle of water.... chug it down ALL OF IT as soon as you are out of radiation. Most of the time patients throats get very dry. Nurses do not tell you this. If you do not drink right away you may have trouble breathing easily during the night. My little girl used to lay by me and say breath again mom. One night I passed out and she thought I died. Poor little girl. Then I researched the water thing and it worked!!! This is a lot of typing.. if you ever want to talk just call. (Or are we not able to do that type of thing on this site. ) I am sure you have a lot to talk about with your family now. It sounds like your husband is emotionally and physicall supportive .. but I know he has a difficult role in this. I thank God every day that I am the one with cancer because I would not have been strong enough to be the care giver for those I love. I had to do it for my mom. I would not give that up for anything in the world. Nor could I repeat it. God be with all of our families that we never give them more than they can handle. I have to take my daughter to dance class for an hour, but if you need me I want you to know I WILL WALK WITH YOU ON THIS JOURNEY AS FAR AND AS OFTEN AS YOU NEED ME.
  • pjba11
    pjba11 Member Posts: 188
    #23
    lindaprocopio said:

    They want to do the CHEMO 1st, THEN the radiation!
    Hi, pjba11! (Is there another name I can use??) I'm posting this here, hoping that Deanna and Marge will find their way to this thread, so that we four 'UPSC sisters' will be in one place. I had my initial consultation with my radiology oncologist, and he thinks I should have my chemo 1st before the radiation. He says that radiation sometimes compromises the bone marrow to the point where you are then unable to complete all of the chemo rounds. The radiation doctor echoed what you said: he said he almost never does full abdominal radiation anymore because the side effects are so extreme, and that he would want to do pelvic radiation initially after the chemo, followed by internal radiation. (I guess he saves full abdominal radiation for reoccurance or something!) He also echoed your sentiment that the higher post-surgery CA125 was probably a reaction to the surgery itself and that I shouldn't worry about that. (You are AMAZING! I'm paying him big bucks to tell me what you told me for free! Thank you!) So now I wait for the chemo oncologist to call for a consultation. (I'm no good at waiting; I'll call him if many days go by!) Meanwhile the radiology doc ordered an abdominal / pelvis CT-scan, & chest Xray for this Thursday. Oh, and I never expected the radiation doctor to do an internal exam, but he DID! (even a rectal poke around! EW!) I really wanted to come out of today's appointment with a treatment schedule so that I could plan Thanksgiving and Christmas and know if I will be well enough to cook and entertain. Ah, well. We can do 'take out' Thanksgiving if need be!

    clincal trial preview
    In case you are interested I wanted to send you this while I can remember it. My radiology oncologist found the actual trial which was many many pages. This is a phase 2 trial as far as I know. I did the brachy after this. I also only did pelvic radiation not whole abd.


    Weeks 1-9
    Paclitaxel 175 mg/m2/3 hour & Carboplatin (AUC=7.5)
    Repeat every 21 days x 3 cycles


    Weeks 8-13
    Pelvic and Para-Arotic Radition 6MV Photon Beam Energy
    1.8 Gy Dose/FX
    Total Dose 45 Gy


    Week 14, 15,16
    High Dose Radiation (HDR) X3
    Nucleotron Microselection Afterloading technique
    5 Gy to 0.5cm Depth from the Vaginal Cylinder Surface
    Total Dose 15Gy


    Weeks 14
    Paclitaxel 175 mg/m2/3 hour & Carboplatin (AUC=6.5)
    Repeat q 21 days x 3 cycles
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #24
    pjba11 said:

    from pj
    What a day you have had... I finally remembered that the Einstein Institute had the phase 2 clinical trial on upsc. I hope you take the time to research this. I feel that and a suppliment I am taking is why I am alive. This trial specifically wants the 3 chemos then the radiation then the other 3 chemos then the brachy. I had to really fight to get my Drs to do this. But I/they did it. I have never had any rad. do any internals. The only internal I had was from my gyn/oncologist. The people who worked on me wanted to leave everything alone so that I could heal from my hysti. My oncologist has never done any internal. I passed up the first rad Dr. he gave me the creeps and he was not even close to wanting to hear how I wanted my treatments sandwiched. 'he would set up my routine' HA! When I went to the next Rad dept they had a long office call to discuss what I wanted to do and then sent me home.. 5 hour drive. The next appointment that amazing Dr had the complete clinical trial IN HAND A MIRACLE. He said he had to go through H and back to get the complete trial for me .... but I know in my heart and mind that he saved/extended my life to this point. We did the simulation and on we went. I am also taking a suppliment that is my 'mini kemo.' I do not know if I am able to talk about suppliments on this site. I do not sell it. My cousin had cancer and was sent home in a wheel chair to die then he found this suppliment (out of the thousands on the internet) went on this suppliment and he is alive and well for at least 5 years now. ( in my opinion that was not chance..) You have a lot of decisions to make... how well I remember!! What ever you decide to do will be a step in the right direction as long as it is aggressive. Most of what you have to deal with is not bad. I can not think of a thing that would make me stop doing it all again if I had to. I did not get a port for my chemo. Drink at least a bottle of water.... chug it down ALL OF IT as soon as you are out of radiation. Most of the time patients throats get very dry. Nurses do not tell you this. If you do not drink right away you may have trouble breathing easily during the night. My little girl used to lay by me and say breath again mom. One night I passed out and she thought I died. Poor little girl. Then I researched the water thing and it worked!!! This is a lot of typing.. if you ever want to talk just call. (Or are we not able to do that type of thing on this site. ) I am sure you have a lot to talk about with your family now. It sounds like your husband is emotionally and physicall supportive .. but I know he has a difficult role in this. I thank God every day that I am the one with cancer because I would not have been strong enough to be the care giver for those I love. I had to do it for my mom. I would not give that up for anything in the world. Nor could I repeat it. God be with all of our families that we never give them more than they can handle. I have to take my daughter to dance class for an hour, but if you need me I want you to know I WILL WALK WITH YOU ON THIS JOURNEY AS FAR AND AS OFTEN AS YOU NEED ME.

    Thank You!
    You are such a blessing and a treasure for me! I have no idea what the roles are here, but my email address is XXXXXX@XXX.XXX if you want to chat outside of here. I figure I can leave this up here until I hear from you, and then go in and EDIT my email address back out in case this is a faux pas. HA!
  • shortmarge
    shortmarge Member Posts: 291
    #25
    Here's My Story
    I wasn't feeling well, kind of tired and peeing non stop and had pain on my right side. I have had colon problems in the past and cyst on my right ovary in the past so I wasn't sure where the pain was coming from. My mother had colon cancer so that has always been a big concern for me. Well my regular Dr. sent me for a CT scan. They found that I had a deflating cyst on my right ovary (the pain); a fibroid on my left and the uterine lining was a little thick so she sent me to the OB/GYN. The OB set me up for an internal ultrasound. After that was done he said that the my ovaries and tubes looked great but there in was some thickening in my lining and a small fibroid and looked me straight in the eye and said that it was not an OB/GYN problem. I persisted and asked him if it was normal for me to have my periods 18 days, 20 days or God only knows how many days apart. Was it my age? He said no that my period should be getting further apart not closer so he decided to do a biopsy which showed that I had Uterine Papillary Serous Carcinoma. So much for not being an OB/GYN problem.....

    Like you Linda, I had the same surgery. The preliminary pathology came back as no more cancer; it seemed that when he did the biopsy he got the one and only tumor. Well, I went to the oncologist yesterday and found out that they found a second cancer, clear cell carcinoma and that it had slightly penetrated my cervix. She told me she had many discussions with the pathologist about what stage of cancer it was. She felt it was 1B but the pathologist won and they are calling Stage IIA.

    I will be having Chemo and radiation (vaginal cuff radiation). I start chemo on Friday.

    I am not afraid, I'm just really angry. I cry more out of anger and when my husband starts crying. I have a lot to live for, my daughter graduates from high school this year, I have three older sons and two beautiful grandsons.

    As of now I am cancer free and I plan on staying that way!!!!

    PJ is there a way that you can send that information on the supplement? I read that a lack of iodine causes a lot of female and male reproductive cancers.

    Linda to add a person to your buddy list there is a little person icon next to their name, just click on it.

    I send hugs to all that are going through this and will be here for you!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #26
    shortmarge said:

    Here's My Story
    I wasn't feeling well, kind of tired and peeing non stop and had pain on my right side. I have had colon problems in the past and cyst on my right ovary in the past so I wasn't sure where the pain was coming from. My mother had colon cancer so that has always been a big concern for me. Well my regular Dr. sent me for a CT scan. They found that I had a deflating cyst on my right ovary (the pain); a fibroid on my left and the uterine lining was a little thick so she sent me to the OB/GYN. The OB set me up for an internal ultrasound. After that was done he said that the my ovaries and tubes looked great but there in was some thickening in my lining and a small fibroid and looked me straight in the eye and said that it was not an OB/GYN problem. I persisted and asked him if it was normal for me to have my periods 18 days, 20 days or God only knows how many days apart. Was it my age? He said no that my period should be getting further apart not closer so he decided to do a biopsy which showed that I had Uterine Papillary Serous Carcinoma. So much for not being an OB/GYN problem.....

    Like you Linda, I had the same surgery. The preliminary pathology came back as no more cancer; it seemed that when he did the biopsy he got the one and only tumor. Well, I went to the oncologist yesterday and found out that they found a second cancer, clear cell carcinoma and that it had slightly penetrated my cervix. She told me she had many discussions with the pathologist about what stage of cancer it was. She felt it was 1B but the pathologist won and they are calling Stage IIA.

    I will be having Chemo and radiation (vaginal cuff radiation). I start chemo on Friday.

    I am not afraid, I'm just really angry. I cry more out of anger and when my husband starts crying. I have a lot to live for, my daughter graduates from high school this year, I have three older sons and two beautiful grandsons.

    As of now I am cancer free and I plan on staying that way!!!!

    PJ is there a way that you can send that information on the supplement? I read that a lack of iodine causes a lot of female and male reproductive cancers.

    Linda to add a person to your buddy list there is a little person icon next to their name, just click on it.

    I send hugs to all that are going through this and will be here for you!

    Everyone's story is so different, but still UPSC
    I'm sorry to hear that you had the 2nd cancer, but how wonderful that they think they got it all!!! I would be dancing in the streets to hear that, although that is not my diagnosis (I'm stage IIIc.) But I share your frustration that the doctors so often seem surprised by what they find in the pathology: that realy shakes my confidence in them. I will probably start my chemo next week. I see my chemo doctor tomorrow, and also have a CT scan and chest Xray scheduled for tomorrow evening by the radiation oncologist. More tests always makes me nervous,...like what are they worrying about and checking on?? I worry that he heard something when he listened to my chest, or that he felt something when he did all that degrading internal digital probing. Hopefully this is just a routine thing, as I haven't had ANY imaging done yet, and maybe they are just catching up on routine diagnostics. HOPE SO!! Please try and find out what chemo cocktail you're taking and how many rounds they plan for you. Interesting that they are doing the chemo first; my oncologists disagreed on that, but now I am pretty sure chemo will be first. With these aggressive 'traveling' sneaky cancers that stay small and hide so well, I guess they want to do a broad attack, body-wide, as fast as they can. Then the radiation can focus in on the area most likely to be the reoccurance site. Forgive my ineptitude, but where do I find your name with the little person icon so that I can "Buddy" you?? (((((((Marge)))))))

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