I am newly diagnosed with UPSC.

24

Comments

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    DoonyL7 said:

    Hello Mary Ann,
    No evidience of disease gee whiz I'm such a dummy. Since I am still in treatment right now doctor seems to be interested in bloodcounts and C-125 results. Mine was 135 before surgery and now at 14 after first round of chemo. I saw where you are dealing with insurance problems. Such a pain in the toot, like you don't have enough to worry about....
    I think your hubby is just plain scarred. I am glad he confided in you though. My hubby was sitting next to me when chemo nurse went over drugs side effects. He had no place to hide.
    In my oppinion nothing clears a room like saying you have cancer :). I also love going out of the house with my new "bald" look. Let them look! I could care less.
    Anyway I am trying to be more positive but mostly one foot in front of other works for now.
    Thanks for your support. I will pray for those self important jerks at your insurance co. that they may see the person and not just the paperwork. Hugs, Lorna

    You are not a dummy.
    I came to this board and did not know what NED was either. I asked my doctor at one of my visit so she had to tell me. I love the fact that you are doing the bald thing and let everyone look and not caring. I too went bald, it was last summer, in Texas where we had 100 degree days, not wearing a wig, hat or scarf in that heat. I had several kids look at me funny but it really did not bother me. One woman came up and said I remember that look, I had it last year, hang in there it will grow back. I did have a lot of men stop me in stores and ask if I was going through chemo, they stopped and said been there done that, and gave encourgement to hang in there. I came back to work bald it was not bad. My hair has since grown out, I have had one hair cut to get it short again and need another one. Please try to keep a positive attitude because it is everything. There is that saying this to shall pass. It is a one day at a time deal right now but it will pass. Praying for you. trish
  • ConnieSW
    ConnieSW Member Posts: 1,677 Member

    You are not a dummy.
    I came to this board and did not know what NED was either. I asked my doctor at one of my visit so she had to tell me. I love the fact that you are doing the bald thing and let everyone look and not caring. I too went bald, it was last summer, in Texas where we had 100 degree days, not wearing a wig, hat or scarf in that heat. I had several kids look at me funny but it really did not bother me. One woman came up and said I remember that look, I had it last year, hang in there it will grow back. I did have a lot of men stop me in stores and ask if I was going through chemo, they stopped and said been there done that, and gave encourgement to hang in there. I came back to work bald it was not bad. My hair has since grown out, I have had one hair cut to get it short again and need another one. Please try to keep a positive attitude because it is everything. There is that saying this to shall pass. It is a one day at a time deal right now but it will pass. Praying for you. trish

    Motto
    "This too shall pass" has been my motto since I was a girl. It gets me through the bad times and insures I cherish every minute of the good.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    ConnieSW said:

    Motto
    "This too shall pass" has been my motto since I was a girl. It gets me through the bad times and insures I cherish every minute of the good.

    Bald and Beautiful
    I did the bald thing too and found that people treated me pretty nice.

    I'm not sure if I will or won't be bald - have had 2 nurses tell me opposite. Time will tell but I will again be sporting my shiny skull.

    Not have a hot hurting head from wig and no chin hairs to pluck - it's all good!!! lol
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    daisy366 said:

    Bald and Beautiful
    I did the bald thing too and found that people treated me pretty nice.

    I'm not sure if I will or won't be bald - have had 2 nurses tell me opposite. Time will tell but I will again be sporting my shiny skull.

    Not have a hot hurting head from wig and no chin hairs to pluck - it's all good!!! lol

    I was happy with not having my mustache to pluck
    I had one hair under my chin that I always had to pluck. 1 yr out and it has not grown back. But the hair on my top lip has. I hate that so i pull them out. Has anyone tried the new thing the No-No yet? When the green stuff came out several years ago my young daughter at the time bought it. It was not wax but green sticky stuff that said on the infomercial that it did not hurt. LIES. but with a 17 yr daughter who knew everything, my sister and I could not tell her anything. I helped her put the green stuff an her leg and rubbed the little white cloth over it. She then told me to pull it off fast as the directions said, I did. She screamed. She did not use it again. It sat in our cabinet for about a year before I told her I was throwing it away since she was not going to use it.
    I was lucky that my head did not hurt when I had chemo but the few times I tried to wear a hat I sweated like crazy, took the hat off and my head looked like someone had poured a glass of water on my head. That is why i just went bald, it was cooler.

    Good Luck with your treatment and may it take care of any cells that may be lurking. Prayers. trisha
  • DoonyL7
    DoonyL7 Member Posts: 33

    You are not a dummy.
    I came to this board and did not know what NED was either. I asked my doctor at one of my visit so she had to tell me. I love the fact that you are doing the bald thing and let everyone look and not caring. I too went bald, it was last summer, in Texas where we had 100 degree days, not wearing a wig, hat or scarf in that heat. I had several kids look at me funny but it really did not bother me. One woman came up and said I remember that look, I had it last year, hang in there it will grow back. I did have a lot of men stop me in stores and ask if I was going through chemo, they stopped and said been there done that, and gave encourgement to hang in there. I came back to work bald it was not bad. My hair has since grown out, I have had one hair cut to get it short again and need another one. Please try to keep a positive attitude because it is everything. There is that saying this to shall pass. It is a one day at a time deal right now but it will pass. Praying for you. trish

    Lol so nice to know another out there doing the bald thing. I mean realy a wig would be just too hot. My heads sweats like crazy just from a hat. Oh I have to tell you when I go to store it is my hubby who says...Ya got your hat????? Its almost like I'm an embarrestment. Next time he does it gonna say something. My oldest son just asked me if my hair will grow back now that 1st chemo is over. I said probably but second round of chemo will take care of that....you take care Trish......lorna
  • DoonyL7
    DoonyL7 Member Posts: 33
    daisy366 said:

    Bald and Beautiful
    I did the bald thing too and found that people treated me pretty nice.

    I'm not sure if I will or won't be bald - have had 2 nurses tell me opposite. Time will tell but I will again be sporting my shiny skull.

    Not have a hot hurting head from wig and no chin hairs to pluck - it's all good!!! lol

    Funny you mentioned chin hairs. I just discovered by nose hair has disappeared :).....lorna
  • DoonyL7
    DoonyL7 Member Posts: 33

    I was happy with not having my mustache to pluck
    I had one hair under my chin that I always had to pluck. 1 yr out and it has not grown back. But the hair on my top lip has. I hate that so i pull them out. Has anyone tried the new thing the No-No yet? When the green stuff came out several years ago my young daughter at the time bought it. It was not wax but green sticky stuff that said on the infomercial that it did not hurt. LIES. but with a 17 yr daughter who knew everything, my sister and I could not tell her anything. I helped her put the green stuff an her leg and rubbed the little white cloth over it. She then told me to pull it off fast as the directions said, I did. She screamed. She did not use it again. It sat in our cabinet for about a year before I told her I was throwing it away since she was not going to use it.
    I was lucky that my head did not hurt when I had chemo but the few times I tried to wear a hat I sweated like crazy, took the hat off and my head looked like someone had poured a glass of water on my head. That is why i just went bald, it was cooler.

    Good Luck with your treatment and may it take care of any cells that may be lurking. Prayers. trisha

    I have a better story about that sticky stuff. I used it for a "bikini" wax. I put it on both sides, put the little material thing on it and pulled. OMG the pain was unbelievable! I sat on the tub for 15 mins before I could bring my self to remove the other one. The worse thing is it didn't even work well. "Lies" is right, never again.....You take care Trish....lorna
  • DoonyL7
    DoonyL7 Member Posts: 33

    I was happy with not having my mustache to pluck
    I had one hair under my chin that I always had to pluck. 1 yr out and it has not grown back. But the hair on my top lip has. I hate that so i pull them out. Has anyone tried the new thing the No-No yet? When the green stuff came out several years ago my young daughter at the time bought it. It was not wax but green sticky stuff that said on the infomercial that it did not hurt. LIES. but with a 17 yr daughter who knew everything, my sister and I could not tell her anything. I helped her put the green stuff an her leg and rubbed the little white cloth over it. She then told me to pull it off fast as the directions said, I did. She screamed. She did not use it again. It sat in our cabinet for about a year before I told her I was throwing it away since she was not going to use it.
    I was lucky that my head did not hurt when I had chemo but the few times I tried to wear a hat I sweated like crazy, took the hat off and my head looked like someone had poured a glass of water on my head. That is why i just went bald, it was cooler.

    Good Luck with your treatment and may it take care of any cells that may be lurking. Prayers. trisha

    I have a better story about that sticky stuff. I used it for a "bikini" wax. I put it on both sides, put the little material thing on it and pulled. OMG the pain was unbelievable! I sat on the tub for 15 mins before I could bring my self to remove the other one. The worse thing is it didn't even work well. "Lies" is right, never again.....You take care Trish....lorna
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    DoonyL7 said:

    Funny you mentioned chin hairs. I just discovered by nose hair has disappeared :).....lorna

    Nose hair! That was the one
    Nose hair! That was the one thing that seemed to bother me the most is losing my nose hair. We need the nose hair to capture the bad things before they get into our systems. Without it how can we have that first step of protection? It was after I finished all the chemo last year in August then in Feb 2012 I got called for Jury duty. I wore a surgical mask down in the central jury room because I did not want to breathe in everyone's germs. Once we got upstairs to the court room I took it off. But when they asked does anyone have a good reason they cannot serve, I told them that I had just finished chemo and my immune system was compromised and I did not feel comfortable setting in the court room with people coughing and sneezing. They did not pick me but the people on each side of me got picked. I did find the little things like band aids that go over your nostril, it is from the web site First Defense Nasal Screens (shown on Shark Tank) and I bought a supply of them. It is great when the season changes and all the pollen, mold and ragweed are out. Praying for you and all on this site. trish
  • seaturtle
    seaturtle Member Posts: 41
    DoonyL7 said:

    Lol so nice to know another out there doing the bald thing. I mean realy a wig would be just too hot. My heads sweats like crazy just from a hat. Oh I have to tell you when I go to store it is my hubby who says...Ya got your hat????? Its almost like I'm an embarrestment. Next time he does it gonna say something. My oldest son just asked me if my hair will grow back now that 1st chemo is over. I said probably but second round of chemo will take care of that....you take care Trish......lorna

    Support
    You mentioned your husband's reaction. I was saddened when I told a couple of friends about mine. There was no reaction except "Oh, I am sorry). Same thing when I returned from surgery. I needed someone to talk to about all of it. I think my friends simply do not want to face the fact that I am ill or just want to keep away from the subject.

    Then I came here, and so glad I did.
  • janh_in_ontario
    janh_in_ontario Member Posts: 151 Member
    seaturtle said:

    Support
    You mentioned your husband's reaction. I was saddened when I told a couple of friends about mine. There was no reaction except "Oh, I am sorry). Same thing when I returned from surgery. I needed someone to talk to about all of it. I think my friends simply do not want to face the fact that I am ill or just want to keep away from the subject.

    Then I came here, and so glad I did.

    Timid Friends
    I think one of the things I have learned through all this crap is when someone has cancer - don't try to convince them it is nothing. I think the human spirit believes if we say it - it will be - but I find I am OFFENDED now when people do that to me. Especially when I am waiting for results - I HATE for someone to say it's probably nothing.
    I am not talking about on here - I mean "out there in normie land". When someone here says it - it is from personal experience - like I would say to someone "I had some bleeding and so far it has proven to be just scar tissue" but we all KNOW it could be something else and we usually preface it with that acknowledgement. But a few months ago an ultrasound showed "2 masses" at the vaginal cuff - after I had been bleeding off and on for 8 months - I was offended when people tried to tell me I was overreacting and it was probably nothing.
    Does anyone else find this - or am I super sensitive?
    I love that we can come on here and say whatever we feel - it really is the only place I can do that. I try to be strong for my family and I don't want work to know I could be sick again - so this is my safe place.
    Thanks for listening!
    Jan
  • jonesgrp
    jonesgrp Member Posts: 3

    Timid Friends
    I think one of the things I have learned through all this crap is when someone has cancer - don't try to convince them it is nothing. I think the human spirit believes if we say it - it will be - but I find I am OFFENDED now when people do that to me. Especially when I am waiting for results - I HATE for someone to say it's probably nothing.
    I am not talking about on here - I mean "out there in normie land". When someone here says it - it is from personal experience - like I would say to someone "I had some bleeding and so far it has proven to be just scar tissue" but we all KNOW it could be something else and we usually preface it with that acknowledgement. But a few months ago an ultrasound showed "2 masses" at the vaginal cuff - after I had been bleeding off and on for 8 months - I was offended when people tried to tell me I was overreacting and it was probably nothing.
    Does anyone else find this - or am I super sensitive?
    I love that we can come on here and say whatever we feel - it really is the only place I can do that. I try to be strong for my family and I don't want work to know I could be sick again - so this is my safe place.
    Thanks for listening!
    Jan

    Newly diagnosed
    Hello all: so happy to have found this group. I am newly diagnosed this week. I am 64 and started having post menopausal spotting in late July 2012. I had hysteropscopy and D&C 10 days ago and know that this is Grade 3. Surgery Oct. 29 for staging. I am especially interested in complementary treatments, nutrition, acupuncture, massage etc. as well as in how to cope with well-meaning friends and family. Thanks so much!
  • daisy366
    daisy366 Member Posts: 1,458 Member
    jonesgrp said:

    Newly diagnosed
    Hello all: so happy to have found this group. I am newly diagnosed this week. I am 64 and started having post menopausal spotting in late July 2012. I had hysteropscopy and D&C 10 days ago and know that this is Grade 3. Surgery Oct. 29 for staging. I am especially interested in complementary treatments, nutrition, acupuncture, massage etc. as well as in how to cope with well-meaning friends and family. Thanks so much!

    Jonesgrp
    Sorry you've come to join us here. This is great place for support.

    Hope you have GYN Onc to do your surgery. Please request tissue assay - this will save guessing about best treatment in the future.

    Hope all goes smoothly for you. Keep us posted.

    Mary Ann
  • daisy366
    daisy366 Member Posts: 1,458 Member

    Timid Friends
    I think one of the things I have learned through all this crap is when someone has cancer - don't try to convince them it is nothing. I think the human spirit believes if we say it - it will be - but I find I am OFFENDED now when people do that to me. Especially when I am waiting for results - I HATE for someone to say it's probably nothing.
    I am not talking about on here - I mean "out there in normie land". When someone here says it - it is from personal experience - like I would say to someone "I had some bleeding and so far it has proven to be just scar tissue" but we all KNOW it could be something else and we usually preface it with that acknowledgement. But a few months ago an ultrasound showed "2 masses" at the vaginal cuff - after I had been bleeding off and on for 8 months - I was offended when people tried to tell me I was overreacting and it was probably nothing.
    Does anyone else find this - or am I super sensitive?
    I love that we can come on here and say whatever we feel - it really is the only place I can do that. I try to be strong for my family and I don't want work to know I could be sick again - so this is my safe place.
    Thanks for listening!
    Jan

    janh
    The "normies" just don't "get it". Can't expect too much from them.
  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    daisy366 said:

    janh
    The "normies" just don't "get it". Can't expect too much from them.

    Jan, I, too, find myself
    Jan, I, too, find myself offended by some of the well meaning remarks that others make re my diagnosis. I always respond graciously but even before I had cancer I didn't say things to others like, "I know you will be fine.". No one can make that promise. I want an honest response that simply wishes me the best.
  • jonesgrp
    jonesgrp Member Posts: 3
    daisy366 said:

    Jonesgrp
    Sorry you've come to join us here. This is great place for support.

    Hope you have GYN Onc to do your surgery. Please request tissue assay - this will save guessing about best treatment in the future.

    Hope all goes smoothly for you. Keep us posted.

    Mary Ann

    Thanks
    Thank you for the support! Yes I have an excellent GYN oncologist who will perform my surgery. I JUST WANT THIS SURGERY TO BE OVER so that I have the most complete picture of my status and understand what I am up against. I was actually expecting a dx of ovarian cancer because of my symptoms. I have a lot to learn about this cancer...
  • txtrisha55
    txtrisha55 Member Posts: 693 Member

    Timid Friends
    I think one of the things I have learned through all this crap is when someone has cancer - don't try to convince them it is nothing. I think the human spirit believes if we say it - it will be - but I find I am OFFENDED now when people do that to me. Especially when I am waiting for results - I HATE for someone to say it's probably nothing.
    I am not talking about on here - I mean "out there in normie land". When someone here says it - it is from personal experience - like I would say to someone "I had some bleeding and so far it has proven to be just scar tissue" but we all KNOW it could be something else and we usually preface it with that acknowledgement. But a few months ago an ultrasound showed "2 masses" at the vaginal cuff - after I had been bleeding off and on for 8 months - I was offended when people tried to tell me I was overreacting and it was probably nothing.
    Does anyone else find this - or am I super sensitive?
    I love that we can come on here and say whatever we feel - it really is the only place I can do that. I try to be strong for my family and I don't want work to know I could be sick again - so this is my safe place.
    Thanks for listening!
    Jan

    Not super sensitive
    It is the well meaning friends that do not understand our fears. Not going through it themselves they cannot understand it. The one thing I have noticed about my cancer, is now I seem to be the go-to girl at my work. Me fighting caner and it going through my work place, coming back to work bald and talking about it with close friends at work. I am now the one everyone seems to come to. Trish, you have been there so tell me what to do? How did you know? How did they find it? What is chemo like? It is kinda funny but I answer the best why I know how. One man was using a chemo cream for a skin cancer on his face and wanted to know if he would lose his hair because he did not want to use it if his hair would fall out. I told him he would have to ask his dr that question but I thought that since it was just a topical cream and not being shot through his whole blood stream that he would not lose his hair. He talked to his dr and he used the cream and did not lose his hair. It keeps me on my toes, talking to people about cancer but it seems to help them too. I do get those that refuse to even think that it might come back but in life there are no guarantees but they do not understand that. Wishing you well. trish
  • DoonyL7
    DoonyL7 Member Posts: 33

    Nose hair! That was the one
    Nose hair! That was the one thing that seemed to bother me the most is losing my nose hair. We need the nose hair to capture the bad things before they get into our systems. Without it how can we have that first step of protection? It was after I finished all the chemo last year in August then in Feb 2012 I got called for Jury duty. I wore a surgical mask down in the central jury room because I did not want to breathe in everyone's germs. Once we got upstairs to the court room I took it off. But when they asked does anyone have a good reason they cannot serve, I told them that I had just finished chemo and my immune system was compromised and I did not feel comfortable setting in the court room with people coughing and sneezing. They did not pick me but the people on each side of me got picked. I did find the little things like band aids that go over your nostril, it is from the web site First Defense Nasal Screens (shown on Shark Tank) and I bought a supply of them. It is great when the season changes and all the pollen, mold and ragweed are out. Praying for you and all on this site. trish

    nose hair
    I had to see my GP to renew my scripts. I was terrified sitting in the waiting room with sick folks. I never thought about a mask, good idea.
  • DoonyL7
    DoonyL7 Member Posts: 33
    seaturtle said:

    Support
    You mentioned your husband's reaction. I was saddened when I told a couple of friends about mine. There was no reaction except "Oh, I am sorry). Same thing when I returned from surgery. I needed someone to talk to about all of it. I think my friends simply do not want to face the fact that I am ill or just want to keep away from the subject.

    Then I came here, and so glad I did.

    support
    I really think friends are just plain scared of saying the wrong thing. My oldest friend, I know her since I was 13, just said she didn't know how I am dealing with this disease. I told her one day at a time......
  • DoonyL7
    DoonyL7 Member Posts: 33

    Timid Friends
    I think one of the things I have learned through all this crap is when someone has cancer - don't try to convince them it is nothing. I think the human spirit believes if we say it - it will be - but I find I am OFFENDED now when people do that to me. Especially when I am waiting for results - I HATE for someone to say it's probably nothing.
    I am not talking about on here - I mean "out there in normie land". When someone here says it - it is from personal experience - like I would say to someone "I had some bleeding and so far it has proven to be just scar tissue" but we all KNOW it could be something else and we usually preface it with that acknowledgement. But a few months ago an ultrasound showed "2 masses" at the vaginal cuff - after I had been bleeding off and on for 8 months - I was offended when people tried to tell me I was overreacting and it was probably nothing.
    Does anyone else find this - or am I super sensitive?
    I love that we can come on here and say whatever we feel - it really is the only place I can do that. I try to be strong for my family and I don't want work to know I could be sick again - so this is my safe place.
    Thanks for listening!
    Jan

    timid friends
    hello Jan,
    I really think I am more of a realist then most folks. I even told my doc that I don't need her to suger coat things. I don't need a chemo nurse to tell me bald is beautiful.

    I am not offended by others comments. I know thats where they are coming from....I'm not going to tell you I wouldn't love to survive this thing. Therefor any abnormal symptom I react too immediately. I have a respect for this cancer. I give it the attention it deserves. And yes, I most often see the glass half empty....but thats just me.....lorna