Uterine Papillary Serous Carcinoma (UPSC): any others here???
Comments
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from pjlindaprocopio 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!
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.0 -
clincal trial previewlindaprocopio 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!
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 cycles0 -
Thank You!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.
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!0 -
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!0 -
Everyone's story is so different, but still UPSCshortmarge 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!
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)))))))0 -
I'm still here.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!
Hi Linda,
Sorry I haven't been around for a while. I have been very busy with treatments and I am getting married on the 29th of this month. I always knew I had a wonderful man in my life, but going through all of this together has brought us closer than ever. If ever I doubted his love for me, I don't now. He has been my rock and I can't imagine life without him. Anyway, we are having a small family ceremony, but it is a lot of details to put together!
I am on day 11 of external pelvic radiation treatments. I have had some mild nausea in the afternoons, but nothing I can't live with. I am also having some fatigue, but I am not working, so I just lay down and rest when I need to. This week, I have started with some mild intestinal side effects. I haven't had to take medication for it yet though.
The oncologists and the radiation doctor both agreed that the very top of my vagina was not completely healed yet, but we needed to get treatment started. I am a little worried because I am restricted to no sex until my vagina is healed. They are not planning on checking until by external treatments are completed the first week of December. I have heard and read about the dilators or having sex 3 times per week. What happens since I am restricted? I guess I need to find out if there will be damage because of this. I sure hope not, I am only 33 and getting married in a few weeks. I would do anything to live, but it will be difficult if we lose that intimacy!!! Any ideas?
I hope you get your oncology appointment soon. I definately think the waiting is the most difficult part emotionaltly. We ARE going to get through this...0 -
CTlindaprocopio said: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)))))))
Linda,
I had a CT of chest, abdomen and pelvis after my first visit with the radiation oncologist. I was told that it is a baseline to make sure that it hasn't spread. Also, it will be used as a comparison film when you complete treatment and have follow up CT's to monitor for reoccurance. Then I had another CT without contrast during simulation for radiation, when they made my molds and placed my tattoos. Hope this makes you feel better about your upcoming diagnostic exams!!0 -
Thanks so much for the reassurance, Deanna!deanna14 said:CT
Linda,
I had a CT of chest, abdomen and pelvis after my first visit with the radiation oncologist. I was told that it is a baseline to make sure that it hasn't spread. Also, it will be used as a comparison film when you complete treatment and have follow up CT's to monitor for reoccurance. Then I had another CT without contrast during simulation for radiation, when they made my molds and placed my tattoos. Hope this makes you feel better about your upcoming diagnostic exams!!
Thanks so much! It's awful how the mind immediately starts worrying and thinking the worst. How is the radiation going? Do they consider what you are having 'full abdominal' or 'pelvic' radiation? They only want to do pelvic radiation on me and I have mixed feelings. I don't relish the possible side effects of full abdominal radiation, but I am Stage IIIc, and I want to be very aggressive with this. I am glad to see you posting again, now that we have 2 other 'UPSC sisters' posting here and have even more perspectives and experiences to share amongst us. It's not a club anyone would want to join, but I am still so very happy to have the other 3 of you to travel down this road with. Is your radiation going good? You okay?0 -
:-)lindaprocopio said:Thanks so much for the reassurance, Deanna!
Thanks so much! It's awful how the mind immediately starts worrying and thinking the worst. How is the radiation going? Do they consider what you are having 'full abdominal' or 'pelvic' radiation? They only want to do pelvic radiation on me and I have mixed feelings. I don't relish the possible side effects of full abdominal radiation, but I am Stage IIIc, and I want to be very aggressive with this. I am glad to see you posting again, now that we have 2 other 'UPSC sisters' posting here and have even more perspectives and experiences to share amongst us. It's not a club anyone would want to join, but I am still so very happy to have the other 3 of you to travel down this road with. Is your radiation going good? You okay?
Sorry. I posted this above then saw your last post. Confusing. Anyway...
Hi Linda,
Sorry I haven't been around for a while. I have been very busy with treatments and I am getting married on the 29th of this month. I always knew I had a wonderful man in my life, but going through all of this together has brought us closer than ever. If ever I doubted his love for me, I don't now. He has been my rock and I can't imagine life without him. Anyway, we are having a small family ceremony, but it is a lot of details to put together!
I am on day 11 of external pelvic radiation treatments. I have had some mild nausea in the afternoons, but nothing I can't live with. I am also having some fatigue, but I am not working, so I just lay down and rest when I need to. This week, I have started with some mild intestinal side effects. I haven't had to take medication for it yet though.
The oncologists and the radiation doctor both agreed that the very top of my vagina was not completely healed yet, but we needed to get treatment started. I am a little worried because I am restricted to no sex until my vagina is healed. They are not planning on checking until by external treatments are completed the first week of December. I have heard and read about the dilators or having sex 3 times per week. What happens since I am restricted? I guess I need to find out if there will be damage because of this. I sure hope not, I am only 33 and getting married in a few weeks. I would do anything to live, but it will be difficult if we lose that intimacy!!! Any ideas?
I hope you get your oncology appointment soon. I definately think the waiting is the most difficult part emotionaltly. We ARE going to get through this...0 -
testdeanna14 said::-)
Sorry. I posted this above then saw your last post. Confusing. Anyway...
Hi Linda,
Sorry I haven't been around for a while. I have been very busy with treatments and I am getting married on the 29th of this month. I always knew I had a wonderful man in my life, but going through all of this together has brought us closer than ever. If ever I doubted his love for me, I don't now. He has been my rock and I can't imagine life without him. Anyway, we are having a small family ceremony, but it is a lot of details to put together!
I am on day 11 of external pelvic radiation treatments. I have had some mild nausea in the afternoons, but nothing I can't live with. I am also having some fatigue, but I am not working, so I just lay down and rest when I need to. This week, I have started with some mild intestinal side effects. I haven't had to take medication for it yet though.
The oncologists and the radiation doctor both agreed that the very top of my vagina was not completely healed yet, but we needed to get treatment started. I am a little worried because I am restricted to no sex until my vagina is healed. They are not planning on checking until by external treatments are completed the first week of December. I have heard and read about the dilators or having sex 3 times per week. What happens since I am restricted? I guess I need to find out if there will be damage because of this. I sure hope not, I am only 33 and getting married in a few weeks. I would do anything to live, but it will be difficult if we lose that intimacy!!! Any ideas?
I hope you get your oncology appointment soon. I definately think the waiting is the most difficult part emotionaltly. We ARE going to get through this...
P.S.
Good luck with your tests... I'll be thinking of you and praying for you.0 -
Whoops! I missed this post, replying instead to your later postdeanna14 said:I'm still here.
Hi Linda,
Sorry I haven't been around for a while. I have been very busy with treatments and I am getting married on the 29th of this month. I always knew I had a wonderful man in my life, but going through all of this together has brought us closer than ever. If ever I doubted his love for me, I don't now. He has been my rock and I can't imagine life without him. Anyway, we are having a small family ceremony, but it is a lot of details to put together!
I am on day 11 of external pelvic radiation treatments. I have had some mild nausea in the afternoons, but nothing I can't live with. I am also having some fatigue, but I am not working, so I just lay down and rest when I need to. This week, I have started with some mild intestinal side effects. I haven't had to take medication for it yet though.
The oncologists and the radiation doctor both agreed that the very top of my vagina was not completely healed yet, but we needed to get treatment started. I am a little worried because I am restricted to no sex until my vagina is healed. They are not planning on checking until by external treatments are completed the first week of December. I have heard and read about the dilators or having sex 3 times per week. What happens since I am restricted? I guess I need to find out if there will be damage because of this. I sure hope not, I am only 33 and getting married in a few weeks. I would do anything to live, but it will be difficult if we lose that intimacy!!! Any ideas?
I hope you get your oncology appointment soon. I definately think the waiting is the most difficult part emotionaltly. We ARE going to get through this...
Sorry for the confusion. I missed this post and replied to your later one, so just ignore my questions about your radiation in my other post. CONGRATULATIONS ON YOUR WEDDING! What a wonderful man! To know to do such a reassuring, loving and affirming act NOW, instead of later! He's a 'keeper', for sure! I think that's just beautiful and I am so happy for you.
I am glad that yours is also 'pelvic' radiation because if you had 'full abdominal', I may have had to re-visit my radiation doc's recommendation, since we both are Stage IIIc. And I didn't want to face the side effects of full abdominal if I don't have to. I'm also still under 'no sex' restrictions, too, for at least another 2 or 3 weeks. I don't think the dilator routine starts until AFTER the radiation is OVER, so you may have your restrictions lifted by the time the 'sex 3 times a week' requirement kicks in. But we should let Peggy (pjba11) reply to that, as she is the one with real experience here.
PEGGY???? YOU THERE???
0 -
Chemolindaprocopio said: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)))))))
I will be having Paclitaxel and Carboplatin 6 rounds every 3 weeks for 18 weeks.
The little icon should be next to my shortmarge name.
Stay strong...0 -
pelvic vs brachylindaprocopio said:Whoops! I missed this post, replying instead to your later post
Sorry for the confusion. I missed this post and replied to your later one, so just ignore my questions about your radiation in my other post. CONGRATULATIONS ON YOUR WEDDING! What a wonderful man! To know to do such a reassuring, loving and affirming act NOW, instead of later! He's a 'keeper', for sure! I think that's just beautiful and I am so happy for you.
I am glad that yours is also 'pelvic' radiation because if you had 'full abdominal', I may have had to re-visit my radiation doc's recommendation, since we both are Stage IIIc. And I didn't want to face the side effects of full abdominal if I don't have to. I'm also still under 'no sex' restrictions, too, for at least another 2 or 3 weeks. I don't think the dilator routine starts until AFTER the radiation is OVER, so you may have your restrictions lifted by the time the 'sex 3 times a week' requirement kicks in. But we should let Peggy (pjba11) reply to that, as she is the one with real experience here.
PEGGY???? YOU THERE???
Hi you two.... congrats from me also. I feel like the old timer here, but I will sure let you know my opinion. If your Dr tells you something different please follow that first!! I was not given details of the dialators until during/after the brachy .... I was told it is accumulative (spelled wrong!) in other words it is ongoing for the rest of our lives. The dialators I got had instructions that I did not need to use them until my brachy had healed. When I started my brachy my external radiation was almost healed. They were so careful not to do pelvics etc because I was so 'fresh' from the external beam radiation. There will always be time to use the dialator. It is my opinion to heal completely internally before you do much with your dialator. The walls of the vagina are so thin from no estrogen ( our surgery) plus our radiation that we can bleed and get infections so very easy. Our immune systems are hit hard right now. (can you beleive I ate mostly peanut butter during my external radiation and the peanut butter I was eating just happened to be the recalled jars that were contaminated with salmonella. So I had all of the salmonella side effects plus radiation side effects at once. Nasty!!) Please be sure that your type of UPSC cancer does not 'react' to estrogen if any of your general practioners recommends any of the estrogen creams. Some medical Doctors don't realize that most of our UPSC should not use additional estrogen for any lurking cells to feed on. Many thought that the estrogen from plants would help.. last I heard even that was not good. If either of you know more on this please post it.0 -
supplimentshortmarge 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!
So sorry to hear you are in this mess too!! But nice to meet you. I am taking Z Natural 15 drops 3 X day. I also do essiak, multi vit. calcium, and fish oil caps. I do the essiak and Z every day and the rest of them as often as I think of them. If you have an email address I can send a report from one doctor in the Z natural it is also been known as cellular defense in the past.0 -
same heredeanna14 said:CT
Linda,
I had a CT of chest, abdomen and pelvis after my first visit with the radiation oncologist. I was told that it is a baseline to make sure that it hasn't spread. Also, it will be used as a comparison film when you complete treatment and have follow up CT's to monitor for reoccurance. Then I had another CT without contrast during simulation for radiation, when they made my molds and placed my tattoos. Hope this makes you feel better about your upcoming diagnostic exams!!
That is exactly what I would have said.0 -
pjba11 said:
suppliment
So sorry to hear you are in this mess too!! But nice to meet you. I am taking Z Natural 15 drops 3 X day. I also do essiak, multi vit. calcium, and fish oil caps. I do the essiak and Z every day and the rest of them as often as I think of them. If you have an email address I can send a report from one doctor in the Z natural it is also been known as cellular defense in the past.
my e-mail address is shortmarge@yahoo.com0 -
will sendshortmarge said:e-mail
my e-mail address is shortmarge@yahoo.com
I will send you all the information I have. I just went outside and found our beautiful dog Rae dead. She had cancer. This Cancer makes me so angry!! WE NEED TO BEAT IT GIRLS!!!!0 -
Thanks! I knew you'd have some perspective for us!
I have had a tiny worry since the radiology oncologist felt the need to stick a finger up there to do some 'finger inside/other hand on the belly' palpatation, since I had a little pink on my toilet paper right after that exam. I am hoping it was just pink KY jelly/lubricant (does KY ever come in pink??) There was nothing since then, but of course, the worry of infection immediately crossed my mind, since my surgery was just 4 weeks ago and my stitches up there are still pretty new. I'll be alert to any symptoms down there and make a cautionery protest if anyone else feels the need to poke around any time soon! We really appreciate your experience here, as this is SUCH unchartered waters for us newbies!0 -
OH NO!!! How SAD!!!pjba11 said:will send
I will send you all the information I have. I just went outside and found our beautiful dog Rae dead. She had cancer. This Cancer makes me so angry!! WE NEED TO BEAT IT GIRLS!!!!
We lost pur pet rabbit just before I found out about my cancer, and those 2 sad events will be forver linked in our minds as a part of the "worst month ever". I'm so sorry for your loss, kiddo. HUGS!0 -
no estrogenlindaprocopio said:Thanks! I knew you'd have some perspective for us!
I have had a tiny worry since the radiology oncologist felt the need to stick a finger up there to do some 'finger inside/other hand on the belly' palpatation, since I had a little pink on my toilet paper right after that exam. I am hoping it was just pink KY jelly/lubricant (does KY ever come in pink??) There was nothing since then, but of course, the worry of infection immediately crossed my mind, since my surgery was just 4 weeks ago and my stitches up there are still pretty new. I'll be alert to any symptoms down there and make a cautionery protest if anyone else feels the need to poke around any time soon! We really appreciate your experience here, as this is SUCH unchartered waters for us newbies!
Thank you for Rae. Sorry your rabbit died. (wasn't there a joke about that in the 'old days'?) I would bet quite a bit on this symptom being thin lining from lack of estrogen. That always caused a bit of pink for me. My gyn is so worried for me on this too. Try to stay with non petro product with no estrogen if you need lubrications. That is what they tell me.... now if you find such a product let me know!!0
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