Uterine Papillary Serous Carcinoma (UPSC): any others here???
Comments
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You are not alone!Therev21 said:Newly Diagnosed
Just got the shocking news on Monday of UPSC and I am terrified! I have a PET scan tomorrow and surgery on 2/19. Won't know my stage until surgery.
Any words of encouragement would be greatly appreciated.
RebeccaTherev21,
It is COMPLETELY overwhelming and Debrajo is correct, you are not alone. Please come back here to ask any questions. You are lucky, you found this site early. I just found it now and I have finished the treatment regime in December and think the women here could have helped me tremendously.
There are people here that have walked in these shoes before you and whatever we have to share we will.
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UPSC - 8 years out
Hello everyone. I went through menopause early (40). Every thing was going fine until 6/2004 when I started bleeding. After 12 years I knew this was bad, set up gyn appointment for 7/2004. She did a uterine biopsy ( which by the way, hurt like hell!). The pathology report came back in one week, the big "C", bummer. Met with oncologist 11/2 weeks later, hysterectomy 8/28/04. The pathology report from surgery said " endometreoid carcinoma AND high grade serous papillary carcinoma". Had a horrible time with incision not healing ( didn't completely close for 4 months). End of Sept I started 3 once a week internal radiation treatments. The onc nor his nurse could tell me exactly what to expect boy was that an eye opening experience! Then I started chemo. Onc had originally verbally said 8 monthly treatments, 2 weeks before I started the " chemo councilor" gave me papers that explained what drugs I would be given. This sheet said 6 treatments. After only 4 treatments onc stopped them without any explanation. 2 weeks after my 4 month checkup the onc called " I am soooo sorry, the cancer has returned......." The cancer was in my vagina this time. Not a happy camper! I endured 25 external radiation treatments, even though I received 2nd degree burns inside and out. The following week I started 3 more internal radiations. They REALLY should have done the internal first! This procedure was uncomfortable and embarrassing the first time but now with the radiation burns it was almost unbearable. My last treatment was in 2006 but I am still seeing the onc because of the permanent damage caused by the radiation. The onc had to switch to a pediatric speculum a couple of years ago and last year she couldn't use one at all. Sex is out of the question now and I have severe problems with my bowels. I wish my journey had been a lot smoother. The onc still does a pap ( without the speculum). I told her I didn't expect to have cancer come back there, it has become a burn't pot roast! If I were a cancer cell I'd find a nice juicy T- bone somewhere else on my body!
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I am so happy to see yourTentoumushi said:UPSC - 8 years out
Hello everyone. I went through menopause early (40). Every thing was going fine until 6/2004 when I started bleeding. After 12 years I knew this was bad, set up gyn appointment for 7/2004. She did a uterine biopsy ( which by the way, hurt like hell!). The pathology report came back in one week, the big "C", bummer. Met with oncologist 11/2 weeks later, hysterectomy 8/28/04. The pathology report from surgery said " endometreoid carcinoma AND high grade serous papillary carcinoma". Had a horrible time with incision not healing ( didn't completely close for 4 months). End of Sept I started 3 once a week internal radiation treatments. The onc nor his nurse could tell me exactly what to expect boy was that an eye opening experience! Then I started chemo. Onc had originally verbally said 8 monthly treatments, 2 weeks before I started the " chemo councilor" gave me papers that explained what drugs I would be given. This sheet said 6 treatments. After only 4 treatments onc stopped them without any explanation. 2 weeks after my 4 month checkup the onc called " I am soooo sorry, the cancer has returned......." The cancer was in my vagina this time. Not a happy camper! I endured 25 external radiation treatments, even though I received 2nd degree burns inside and out. The following week I started 3 more internal radiations. They REALLY should have done the internal first! This procedure was uncomfortable and embarrassing the first time but now with the radiation burns it was almost unbearable. My last treatment was in 2006 but I am still seeing the onc because of the permanent damage caused by the radiation. The onc had to switch to a pediatric speculum a couple of years ago and last year she couldn't use one at all. Sex is out of the question now and I have severe problems with my bowels. I wish my journey had been a lot smoother. The onc still does a pap ( without the speculum). I told her I didn't expect to have cancer come back there, it has become a burn't pot roast! If I were a cancer cell I'd find a nice juicy T- bone somewhere else on my body!
I am so happy to see your post but so sorry for the horrible time you have had. Know that your ordeal has given me hope to live 8 years and not let this beast of a cnacer win. We are here to kick its ugly self out!! best wishes for you always.
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dilator and tissue bleeding questionspjba11 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!!Hi I am Christine, I am new to the site and joined because I wanted to see if there were any other women out there that could share their thoughts and experience in using the dilator. I saw your post and thought your comment was cute!! However it was several years ago and the site is a little overwhelming when trying to narrow down a topic...Can you perhaps direct me to a place on the site that deal with women after treatment and issues like the dilator and just life in general after uterin cancer. Im five years cancer free but live with the radiation damage and related issues dayly.
look forward to hearing any news or thoughts all the best!
Christine
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dilator and tissue bleeding questionspjba11 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!!Hi I am Christine, I am new to the site and joined because I wanted to see if there were any other women out there that could share their thoughts and experience in using the dilator. I saw your post and thought your comment was cute!! However it was several years ago and the site is a little overwhelming when trying to narrow down a topic...Can you perhaps direct me to a place on the site that deal with women after treatment and issues like the dilator and just life in general after uterin cancer. Im five years cancer free but live with the radiation damage and related issues dayly.
look forward to hearing any news or thoughts all the best!
Christine
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UPDCNoTimeForCancer said:Get a second opinion
Dear Florida,
While my UPSC was luckily caught early, stage 1A, and I had hoped that since it was early that I wouldn't have to have the chemo/radiation/chemo sandwich, I did. Looking back and not knowing anything about cancer I am so happy I did!!
While I was VERY fortunate to have mild side effects, my radiologist even said to me, "you don't understand, people don't do as well as you did", I know it is what I had to do to beat this evil, beast down. Yes, I did lose my hair and my friends and I all cried when it got shaved, and then I took a picture, bald, surrounded by bald men I work with.
I can't wait to participate in the National Race to End Women's Cancer in DC this November and meet some of the sisters who have battled this disease like me. http://www.foundationforwomenscancer.org
"Never, ever, ever, ever, ever, ever, ever, give up." - Winston Churchill
Good luck and God bless.
I've had one chemo and will have 2nd brachytherapy this week. I was diagnosed Stage IA and have 2 more brachytherapy and 2 more chemo. I had a very achy foot for 3 or 4 days about 4 days after chemo. They gave me pain medication that took care of it. I think I'm going to shave/clip my hair myself and not look at myself until I think I can handle it. I'm not worrying about it, though I JUST finished growing all the color out of my hair when I got the diagnosis. I have a pretty wig. It's stuff we have to do so I guess we might as well do it, huh? I'm being treated at the University of Iowa hospitals and they have been wonderful.
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MThersaMTheresa said:UPDC
I've had one chemo and will have 2nd brachytherapy this week. I was diagnosed Stage IA and have 2 more brachytherapy and 2 more chemo. I had a very achy foot for 3 or 4 days about 4 days after chemo. They gave me pain medication that took care of it. I think I'm going to shave/clip my hair myself and not look at myself until I think I can handle it. I'm not worrying about it, though I JUST finished growing all the color out of my hair when I got the diagnosis. I have a pretty wig. It's stuff we have to do so I guess we might as well do it, huh? I'm being treated at the University of Iowa hospitals and they have been wonderful.
I, too, had just finished growing the color out of my hair when I was diagnosed. I decided that at least it allowed me to compare per and post chemo hair. It was exactly the same before and after unlike the experience of so many of you. However, I am currently visiting family in SE ohio and my hair becomes more wavy and actually curly in the summer months here.
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Hi, Glad you are 8 yearsTentoumushi said:UPSC - 8 years out
Hello everyone. I went through menopause early (40). Every thing was going fine until 6/2004 when I started bleeding. After 12 years I knew this was bad, set up gyn appointment for 7/2004. She did a uterine biopsy ( which by the way, hurt like hell!). The pathology report came back in one week, the big "C", bummer. Met with oncologist 11/2 weeks later, hysterectomy 8/28/04. The pathology report from surgery said " endometreoid carcinoma AND high grade serous papillary carcinoma". Had a horrible time with incision not healing ( didn't completely close for 4 months). End of Sept I started 3 once a week internal radiation treatments. The onc nor his nurse could tell me exactly what to expect boy was that an eye opening experience! Then I started chemo. Onc had originally verbally said 8 monthly treatments, 2 weeks before I started the " chemo councilor" gave me papers that explained what drugs I would be given. This sheet said 6 treatments. After only 4 treatments onc stopped them without any explanation. 2 weeks after my 4 month checkup the onc called " I am soooo sorry, the cancer has returned......." The cancer was in my vagina this time. Not a happy camper! I endured 25 external radiation treatments, even though I received 2nd degree burns inside and out. The following week I started 3 more internal radiations. They REALLY should have done the internal first! This procedure was uncomfortable and embarrassing the first time but now with the radiation burns it was almost unbearable. My last treatment was in 2006 but I am still seeing the onc because of the permanent damage caused by the radiation. The onc had to switch to a pediatric speculum a couple of years ago and last year she couldn't use one at all. Sex is out of the question now and I have severe problems with my bowels. I wish my journey had been a lot smoother. The onc still does a pap ( without the speculum). I told her I didn't expect to have cancer come back there, it has become a burn't pot roast! If I were a cancer cell I'd find a nice juicy T- bone somewhere else on my body!
Hi, Glad you are 8 years out. Sorry for your burning. I had internal radiaiton and also had some burning. I would be interested to know what stage you were when they originally diagnosed you? Thank you..God Bless
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Hopeful CommentsGabbyMaude said:Surviving UPSC
Hi friend - I was diagnosed with stage IV UPSC 3.5 years ago. I have had 18 months of chemo and 45 radiation treatments. I am currently in a clinical trial as I have a thrid recurrence. The good news is that I am doing okay, still working full time and able to handle the treatment. It's so important to stay as positive as possible, and to live each day to the fullest. Friends, activities, artwork, church - these are all things that have helped me. I talk to my cancer (your lease is up! I want to evict you!!!) I also keep a blog to communicate with friends and relatives not close by - my blog is www.Apopsal.blogspot.com. Let me know if you need any other thought or suggestions. My thoughts and meditations are with you!!
.
Your comments are so encouraging. I just got my dianosis of stage 2 UPSC yesterday but didn't have any idea what it was until I went online to look it up. I am shell-shocked. My doc had told me when he first examined me that he could probably just remove my uterus and I would have a great life thereafter. That was before the biopsy and PET scan. This is a very serious and aggressive cancer. I am still in shock. I am 67 and My husband, friends and family have been very supportive. My faith is strong and I will continue to have faith that everything will turn out OK in the end.
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UPSCnancynutri said:Hopeful Comments
Your comments are so encouraging. I just got my dianosis of stage 2 UPSC yesterday but didn't have any idea what it was until I went online to look it up. I am shell-shocked. My doc had told me when he first examined me that he could probably just remove my uterus and I would have a great life thereafter. That was before the biopsy and PET scan. This is a very serious and aggressive cancer. I am still in shock. I am 67 and My husband, friends and family have been very supportive. My faith is strong and I will continue to have faith that everything will turn out OK in the end.
When I was first diagnosed April 3, I went to the internet and couldn't find a thing on this. My story is different, I had complete hysterectomy 1987, Thought I would skip this part...guess not. I am 65, have trusted Christ for 30 years, but this is a spiritual bootcamp I hadn't counted on. I finished my 2 chemo (out of 6) I hope I can finish....the week after chemo makes me long for heaven!
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fanniemay said:
Hi, Glad you are 8 years
Hi, Glad you are 8 years out. Sorry for your burning. I had internal radiaiton and also had some burning. I would be interested to know what stage you were when they originally diagnosed you? Thank you..God Bless
It's been a while since I logged-on, but I would really like to know if someone has gone before me on this. I had surgery in November 2011 with stage 3 UPSC. Post surgical CA-125 was 814. after 6 rounds of chemo it came all the way down to 60. In May 2012 I started on megestrol 160 mg/day and by late December it was 49, up from 30 in October. By late January I felt something wasn't right. I had some blood work done and my CA 125 was back to 365 so I started another series of chemo...same drugs, taxol and carboplatin. I've completed 5 treatments and my CA 125 after 4 has gone down to about 75. One more to go.
This chemo has been different. More fatigue with low red counts. Has anyone gone from remission back to chemo? Then what? I'd really appreciate hearing from you.
God bless you all.
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Hi Maggie and hugsMaggie_mac said:It's been a while since I logged-on, but I would really like to know if someone has gone before me on this. I had surgery in November 2011 with stage 3 UPSC. Post surgical CA-125 was 814. after 6 rounds of chemo it came all the way down to 60. In May 2012 I started on megestrol 160 mg/day and by late December it was 49, up from 30 in October. By late January I felt something wasn't right. I had some blood work done and my CA 125 was back to 365 so I started another series of chemo...same drugs, taxol and carboplatin. I've completed 5 treatments and my CA 125 after 4 has gone down to about 75. One more to go.
This chemo has been different. More fatigue with low red counts. Has anyone gone from remission back to chemo? Then what? I'd really appreciate hearing from you.
God bless you all.
I was diagnoised in 2011 with this cancer but in the cervic stage 4 then ovarian cancer stage 3 , been going well and was stable and undercontrol but about 8 weeks ago started getting back pain , seems its wrapped a tumour around my Urethea am having a stint in tomorrow and was started on carbo / Lipsomal Doxorubicin ( its pink chemo ) will have 4 rounds once amonth then they will check me and see how we go my ca 125 numbers are much lower than yours they had gone to 188 but now are 165 ..... Fight hard and stay strong Maggie this cancer needs to evacuate ............big hugs Donna
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Grandma diagnosed March 5th with UPSC
Hello all, I am Keaton and my grandma (who is my best friend) was diagnosed with (they never have us a stage) USunderstands stand the chances of her surving and getting to see me be married are slim, but I want to know what you guys have to say. We just saw her onocologist wed. And she told us that the taxol/Carboplatin chemo is NOT stopping the cancer from spreading. she said that her cancer is in curable and signed us up for a phase I clinical trial. She will be taking the TAS-102 chemo instead. Do any of you know anymore options we may have? She is not weak. She can walk and laugh and work without any problems, and when she does put on her beautiful wig & makeup you wouldn't even me able to tell she has cancer. I am at a loss. I love her so much and this has broken my heart. She is only 62 and so full of life. What do we do now?
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Keaton sorry to hear about your GrandmaKETrey5 said:Grandma diagnosed March 5th with UPSC
Hello all, I am Keaton and my grandma (who is my best friend) was diagnosed with (they never have us a stage) USunderstands stand the chances of her surving and getting to see me be married are slim, but I want to know what you guys have to say. We just saw her onocologist wed. And she told us that the taxol/Carboplatin chemo is NOT stopping the cancer from spreading. she said that her cancer is in curable and signed us up for a phase I clinical trial. She will be taking the TAS-102 chemo instead. Do any of you know anymore options we may have? She is not weak. She can walk and laugh and work without any problems, and when she does put on her beautiful wig & makeup you wouldn't even me able to tell she has cancer. I am at a loss. I love her so much and this has broken my heart. She is only 62 and so full of life. What do we do now?
I am sorry that you and your Grandma are going through this. I do not know anything about the clinical trial she will be entering. I hope. She does well with it and it shrinks her tumors. Try to find some joy in each day and make some wonderful memories. Come back with any questions you may have. You might want to start a new post, as this loooong thread can be hard to find new posts sometimes. We will be here to support you and you Grandma. In peace and caring.
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HopeRo10 said:Keaton sorry to hear about your Grandma
I am sorry that you and your Grandma are going through this. I do not know anything about the clinical trial she will be entering. I hope. She does well with it and it shrinks her tumors. Try to find some joy in each day and make some wonderful memories. Come back with any questions you may have. You might want to start a new post, as this loooong thread can be hard to find new posts sometimes. We will be here to support you and you Grandma. In peace and caring.
Don't give up, Keaton. Incurable is not the same as untreatable. Hopefully your grandma has many years left.
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Thank you both
Thank you both for replying. She is very strong and even the doctor said she has a very strong body. I hope maybe a miracle can happen, as the CT scan showed her pancreas, kidneys, gallbladder, & liver were all unremarkablShe they said the ct scan showed that her lymph nodes were enlarged. Is there still any hope? Thanks to all.
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Keaton there is always hopeKETrey5 said:Thank you both
Thank you both for replying. She is very strong and even the doctor said she has a very strong body. I hope maybe a miracle can happen, as the CT scan showed her pancreas, kidneys, gallbladder, & liver were all unremarkablShe they said the ct scan showed that her lymph nodes were enlarged. Is there still any hope? Thanks to all.
I too was told in 1/09 that my cancer was not curable,but treatable. My lymph nodes have been enlarged and then the chemo stinks them. As I said earlier keep positive thoughts. Take one day at a time.
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My momRo10 said:Keaton there is always hope
I too was told in 1/09 that my cancer was not curable,but treatable. My lymph nodes have been enlarged and then the chemo stinks them. As I said earlier keep positive thoughts. Take one day at a time.
my mom is 62 years old and was recently diagnosed with this terrible cancer. Her onc apt is for today. The ct showed a carcinomatosis with omental involvement but ln, liver spleen kidneys pancreas seem to be ok. I'm so scared about what the oncologist will say. Any advice will be appreciated
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AppointmentGolov003@gmail.com said:My mom
my mom is 62 years old and was recently diagnosed with this terrible cancer. Her onc apt is for today. The ct showed a carcinomatosis with omental involvement but ln, liver spleen kidneys pancreas seem to be ok. I'm so scared about what the oncologist will say. Any advice will be appreciated
Will you be going with her? Someone needs to take good notes. Emotions make it hard to take in and remember everything that is said. After that, come back here with your info and we'll help you with questions, support, etc. We've all been there and we understand what you are going through.
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My sister who is an md willConnieSW said:Appointment
Will you be going with her? Someone needs to take good notes. Emotions make it hard to take in and remember everything that is said. After that, come back here with your info and we'll help you with questions, support, etc. We've all been there and we understand what you are going through.
My sister who is an md will be going today
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