UPSC Recurrence

2»

Comments

  • daisy366
    daisy366 Member Posts: 1,458 Member

    mary ann
    only a few seconds left online
    am mailing package
    info regarding cyberknife and other things
    Much love,

    Claudia
    Call me soon as

    update - saw radio-onc
    I am VERY pleased with my new radio-doc. Ivy league trained and very kind and accessible via phone and email. He said he has had success with UPSC and this location and cited a patient doing very well. I am very confident with him and my gyn-onc team. They both foresee success.

    I was fitted with my (Darth Vader) mask yesterday and they took CT scans of my neck (supraclavicular lymph nodes)and marked the mask. I have to return next week for more marking and after the doc reviews scans he will decide what machine to use - there are 2 different locations possible depending on machine. Only disconcerting thing was, I had the mask on for about 15 minutes total while it hardened and they did the scans. It was strange to not be able to talk though I could still swallow. When the tech unclamped me I said, "You really know how to shut a person up!!" Later at work we joked that we could probably use several of these!!

    Anyway, Starting Sept 28 the plan is:
    1) low dose Carboplatin weekly
    2) 7 weeks (35 sessions) of IMRT

    Everyone seems to think I will be able to carry on normal activities though they cautioned me that I may have sore throat. I hope I will still be able to sing through this - but that is a small issue in light of everything else.

    So, I shall carry on - Love to all, Mary Ann
  • maggie_wilson
    maggie_wilson Member Posts: 596
    daisy366 said:

    update - saw radio-onc
    I am VERY pleased with my new radio-doc. Ivy league trained and very kind and accessible via phone and email. He said he has had success with UPSC and this location and cited a patient doing very well. I am very confident with him and my gyn-onc team. They both foresee success.

    I was fitted with my (Darth Vader) mask yesterday and they took CT scans of my neck (supraclavicular lymph nodes)and marked the mask. I have to return next week for more marking and after the doc reviews scans he will decide what machine to use - there are 2 different locations possible depending on machine. Only disconcerting thing was, I had the mask on for about 15 minutes total while it hardened and they did the scans. It was strange to not be able to talk though I could still swallow. When the tech unclamped me I said, "You really know how to shut a person up!!" Later at work we joked that we could probably use several of these!!

    Anyway, Starting Sept 28 the plan is:
    1) low dose Carboplatin weekly
    2) 7 weeks (35 sessions) of IMRT

    Everyone seems to think I will be able to carry on normal activities though they cautioned me that I may have sore throat. I hope I will still be able to sing through this - but that is a small issue in light of everything else.

    So, I shall carry on - Love to all, Mary Ann

    mary ann--i was so happy to read your update....

    it brought tears to my eyes. how great to have such a good doctor team now, who forecast success for you. sounds like a fairly rigorous, but eminently doable regimen; and maybe you can sing as well through this. count on it, we will all be singing on this end! i'm so happy for you, mary ann; well be thinking of you especially from the 28th, right around the corner.

    don't forget to keep us posted.

    hugs and sisterhood,
    maggie
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454

    mary ann--i was so happy to read your update....

    it brought tears to my eyes. how great to have such a good doctor team now, who forecast success for you. sounds like a fairly rigorous, but eminently doable regimen; and maybe you can sing as well through this. count on it, we will all be singing on this end! i'm so happy for you, mary ann; well be thinking of you especially from the 28th, right around the corner.

    don't forget to keep us posted.

    hugs and sisterhood,
    maggie

    Mary Ann
    Sounds like you have a wonderful team, and I like that you mention that they are very accessible by phone and email.

    It all sounds very encouraging.

    Strength, healing and peace to you!

    Hugs!
  • kkstef
    kkstef Member Posts: 688 Member
    daisy366 said:

    update - saw radio-onc
    I am VERY pleased with my new radio-doc. Ivy league trained and very kind and accessible via phone and email. He said he has had success with UPSC and this location and cited a patient doing very well. I am very confident with him and my gyn-onc team. They both foresee success.

    I was fitted with my (Darth Vader) mask yesterday and they took CT scans of my neck (supraclavicular lymph nodes)and marked the mask. I have to return next week for more marking and after the doc reviews scans he will decide what machine to use - there are 2 different locations possible depending on machine. Only disconcerting thing was, I had the mask on for about 15 minutes total while it hardened and they did the scans. It was strange to not be able to talk though I could still swallow. When the tech unclamped me I said, "You really know how to shut a person up!!" Later at work we joked that we could probably use several of these!!

    Anyway, Starting Sept 28 the plan is:
    1) low dose Carboplatin weekly
    2) 7 weeks (35 sessions) of IMRT

    Everyone seems to think I will be able to carry on normal activities though they cautioned me that I may have sore throat. I hope I will still be able to sing through this - but that is a small issue in light of everything else.

    So, I shall carry on - Love to all, Mary Ann

    Mary Ann
    Hi Mary Ann, Am glad you posted your plan. It sounds like it will be challenging but "do-able". Interesting how that word "do-able" takes on new meaning isn't it? However, for the Sister Warriors here, everything can be done, just some things are more taxing than other things!

    I am SOOOO happy that you have found a radiation onc that you like, is personable and very qualified... That is a great find! I am impressed how accessible he is. I don't think many Drs. make themselves readily available via email.

    Your Darth Vader mask sounds a bit confining? Hmmm...with Halloween coming up there may be a use for that after you complete your treatment!

    I pray that you will not have to deal with a sore throat or other side effects.....Know that we are all there with you "virtually" on the 28th and through each of the following treatments.

    VERY BIG HUGS, MARY ANN!!!

    Keep us posted! Karen
  • daisy366 said:

    update - saw radio-onc
    I am VERY pleased with my new radio-doc. Ivy league trained and very kind and accessible via phone and email. He said he has had success with UPSC and this location and cited a patient doing very well. I am very confident with him and my gyn-onc team. They both foresee success.

    I was fitted with my (Darth Vader) mask yesterday and they took CT scans of my neck (supraclavicular lymph nodes)and marked the mask. I have to return next week for more marking and after the doc reviews scans he will decide what machine to use - there are 2 different locations possible depending on machine. Only disconcerting thing was, I had the mask on for about 15 minutes total while it hardened and they did the scans. It was strange to not be able to talk though I could still swallow. When the tech unclamped me I said, "You really know how to shut a person up!!" Later at work we joked that we could probably use several of these!!

    Anyway, Starting Sept 28 the plan is:
    1) low dose Carboplatin weekly
    2) 7 weeks (35 sessions) of IMRT

    Everyone seems to think I will be able to carry on normal activities though they cautioned me that I may have sore throat. I hope I will still be able to sing through this - but that is a small issue in light of everything else.

    So, I shall carry on - Love to all, Mary Ann

    This comment has been removed by the Moderator
  • norma2
    norma2 Member Posts: 479
    daisy366 said:

    update - saw radio-onc
    I am VERY pleased with my new radio-doc. Ivy league trained and very kind and accessible via phone and email. He said he has had success with UPSC and this location and cited a patient doing very well. I am very confident with him and my gyn-onc team. They both foresee success.

    I was fitted with my (Darth Vader) mask yesterday and they took CT scans of my neck (supraclavicular lymph nodes)and marked the mask. I have to return next week for more marking and after the doc reviews scans he will decide what machine to use - there are 2 different locations possible depending on machine. Only disconcerting thing was, I had the mask on for about 15 minutes total while it hardened and they did the scans. It was strange to not be able to talk though I could still swallow. When the tech unclamped me I said, "You really know how to shut a person up!!" Later at work we joked that we could probably use several of these!!

    Anyway, Starting Sept 28 the plan is:
    1) low dose Carboplatin weekly
    2) 7 weeks (35 sessions) of IMRT

    Everyone seems to think I will be able to carry on normal activities though they cautioned me that I may have sore throat. I hope I will still be able to sing through this - but that is a small issue in light of everything else.

    So, I shall carry on - Love to all, Mary Ann

    {{{thinking of you}}}
    Just want you to know you are in my prayers. You are an inspiration.
  • Demodiva2
    Demodiva2 Member Posts: 1
    UPSC Stage 1A Grade 3

    Love this site, and all the terrific support it gives! I read it often, but haven't posted until now. Wondering if anyone out there chose no adjunctive therapy; hoped we could exchange experiences and ideas. I was diagnosed with UPSC Stage 1A Grade 3 in June of 2015, at age 66; discovered it due to several months of postmenopausal spotting, which finally prompted me to ask first for a D&C at my ob/gyn, hoping to find only fibroids; within the day, as soon as he'd looked at the tissues, he scheduled me for an onco consult asap. I had a full hysterectomy, along with fallopian tubes and ovaries removed; no lymph nodes taken out (but had declined a CT scan, so doc judged by "old school" methodology -- mainly visual. Knowing that I was going to refuse adjunctive therapy, and "go the natural route," I did not wish to undergo the excessive radiation of an abdominal C-T (had read on the Johns Hopkins site that it's equivalent to several hundred chest xrays.) My children are all grown; two live out on the west coast, as do my two young grandchildren. My husband is twenty years my senior, third marriage for both of us. 

  • Soup52
    Soup52 Member Posts: 908 Member
    Demodiva2 said:

    UPSC Stage 1A Grade 3

    Love this site, and all the terrific support it gives! I read it often, but haven't posted until now. Wondering if anyone out there chose no adjunctive therapy; hoped we could exchange experiences and ideas. I was diagnosed with UPSC Stage 1A Grade 3 in June of 2015, at age 66; discovered it due to several months of postmenopausal spotting, which finally prompted me to ask first for a D&C at my ob/gyn, hoping to find only fibroids; within the day, as soon as he'd looked at the tissues, he scheduled me for an onco consult asap. I had a full hysterectomy, along with fallopian tubes and ovaries removed; no lymph nodes taken out (but had declined a CT scan, so doc judged by "old school" methodology -- mainly visual. Knowing that I was going to refuse adjunctive therapy, and "go the natural route," I did not wish to undergo the excessive radiation of an abdominal C-T (had read on the Johns Hopkins site that it's equivalent to several hundred chest xrays.) My children are all grown; two live out on the west coast, as do my two young grandchildren. My husband is twenty years my senior, third marriage for both of us. 

    I think you would get better

    I think you would get better response if you start a new post. I don’t recognize most of theothers on this post except for notime.

  • Soup52
    Soup52 Member Posts: 908 Member
    Soup52 said:

    I think you would get better

    I think you would get better response if you start a new post. I don’t recognize most of theothers on this post except for notime.

    Oops I meant Kaleena

    Oops I meant Kaleena

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Demodiva2 said:

    UPSC Stage 1A Grade 3

    Love this site, and all the terrific support it gives! I read it often, but haven't posted until now. Wondering if anyone out there chose no adjunctive therapy; hoped we could exchange experiences and ideas. I was diagnosed with UPSC Stage 1A Grade 3 in June of 2015, at age 66; discovered it due to several months of postmenopausal spotting, which finally prompted me to ask first for a D&C at my ob/gyn, hoping to find only fibroids; within the day, as soon as he'd looked at the tissues, he scheduled me for an onco consult asap. I had a full hysterectomy, along with fallopian tubes and ovaries removed; no lymph nodes taken out (but had declined a CT scan, so doc judged by "old school" methodology -- mainly visual. Knowing that I was going to refuse adjunctive therapy, and "go the natural route," I did not wish to undergo the excessive radiation of an abdominal C-T (had read on the Johns Hopkins site that it's equivalent to several hundred chest xrays.) My children are all grown; two live out on the west coast, as do my two young grandchildren. My husband is twenty years my senior, third marriage for both of us. 

    Demodiva2,

    Demodiva2,

    As Soup suggested, you might want to start a new thread.  This one is rather old and I am sure the ladies will respond.  

    I know there are a few women who have also asked about getting/not getting the adjunct therapy, and I think the majority ended up getting it.  One particular women who chose not to get it has not posted in years.  I was diagnosed with UPSC, Stage 1A Grade 3 at 49.  I had both chemo and radiation and worked through it all.  Everyone has to make the decision for themselves and everyone responds differently to the therapy.   Unfortunately I cannot give you any insight in to natural therapy.  

    As I belive Lou Ann says, "welcome to the club no one wants to be a member of".  It is a good group of women here and I am sure they will welcome you with open arms.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Soup52 said:

    I think you would get better

    I think you would get better response if you start a new post. I don’t recognize most of theothers on this post except for notime.

    hey soup. I went to post a

    hey soup. I went to post a 'winky' eyed guy and I think it is waiting to be posted.  I posted now - so you are good. ;)

  • pinky104
    pinky104 Member Posts: 574 Member
    Soup52 said:

    I think you would get better

    I think you would get better response if you start a new post. I don’t recognize most of theothers on this post except for notime.

    Soup52

    The reason you don't recognize most of the others is because at least four, possibly five or more, have passed away.  Daisy366, lindaprocopio, jazzy1, and Ro10 are all gone.  I'm not sure about one other, but I think she's passed, too, as I remember the first name as one that someone else on here mentioned to me.  Lindaprocopio was, I believe, the first member of the uterine board.  It's sad that some of those who gave the most advice are no longer with us.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    pinky104 said:

    Soup52

    The reason you don't recognize most of the others is because at least four, possibly five or more, have passed away.  Daisy366, lindaprocopio, jazzy1, and Ro10 are all gone.  I'm not sure about one other, but I think she's passed, too, as I remember the first name as one that someone else on here mentioned to me.  Lindaprocopio was, I believe, the first member of the uterine board.  It's sad that some of those who gave the most advice are no longer with us.

    pinky, sadly you are correct

    pinky, sadly you are correct on us losing all of those ladies.  Someone sent me a PM berating me once for saying "they are no longer with us", when in fact, it was/is true.  I deleted that person's PM without replying.  When you are fortunate to be around for years, we mourn the ones we love, and certainly, these women were all part of our family.   

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member

    pinky, sadly you are correct

    pinky, sadly you are correct on us losing all of those ladies.  Someone sent me a PM berating me once for saying "they are no longer with us", when in fact, it was/is true.  I deleted that person's PM without replying.  When you are fortunate to be around for years, we mourn the ones we love, and certainly, these women were all part of our family.   

    Where's the like button?

    i definitely agree. I grieve for Helen and Debra Jo but I would hate not knowing. Three ladies on this thread other than the ones mentioned have also died. I remember them fondly and appreciate seeing their faces again when an old thread pops up. 

  • Soup52
    Soup52 Member Posts: 908 Member
    pinky104 said:

    Soup52

    The reason you don't recognize most of the others is because at least four, possibly five or more, have passed away.  Daisy366, lindaprocopio, jazzy1, and Ro10 are all gone.  I'm not sure about one other, but I think she's passed, too, as I remember the first name as one that someone else on here mentioned to me.  Lindaprocopio was, I believe, the first member of the uterine board.  It's sad that some of those who gave the most advice are no longer with us.

    That’s what I figured that

    That’s what I figured that the others have passed away, but I was hesitant to say it.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited November 2017 #37
    Unfortunate Reality

    This is the unfortunate reality of our disease. No way to sugar coat it nor should we.