Uterine Papillary Serous Carcinoma (UPSC): any others here???
Comments
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Now and the futurepjba11 said:will be looking forward to hearing from you when you can
It is a very difficult journey and as I have said in the past it is the most difficult journey of your life for your life. I was NED for many months before I would quit looking at other people with envy saying to myself why are they well and doing what ever they want to do while I am stuck with this crap.... then it dawned on me. I am done with cancer. I still have many many days when I feel a twinge or somethng new for pain and panic, but I have convinced myself that I have no more of a percentage of getting cancer than anyone else that I meet on the street. It took me awhile to feel that way... but now I do. It has helped me alot. Even if I did get cancer recurrences now I feel that I have been through it once and will now know how to make better decisions the second time. We are all here to help you get through what ever bothers you the most. Just ask!! We are all sisters now. God bless. Peggy
Thank you Peggy.
You said it all, that is what goes through my mind.
I have to spend some time reading all the posts to get to know you all.
Maylynne0 -
Welcome welcome, Maylynne!maylynne said:Now and the future
Thank you Peggy.
You said it all, that is what goes through my mind.
I have to spend some time reading all the posts to get to know you all.
Maylynne
Sorry to meet under these circumstances, but so glad that you have found us. If you read all of this long long thread, you'll learn more about UPSC as it is TODAY (not all that old scary stuff you come upon online with Google searching!) than any book. We don't use this long long thread much because it loads so S-L-O-W-L-Y due to the number of posts. So feel free to start a new thread if you have a particular question, or post under any of the shorter threads if you are frustrated by the slow loading of this post.
Big hugs to a new UPSC Sister ((((Maylynne)))))0 -
Welcome welcome, Maylynne!maylynne said:Now and the future
Thank you Peggy.
You said it all, that is what goes through my mind.
I have to spend some time reading all the posts to get to know you all.
Maylynne
ARGH! Triple post. SORRY. I KNOW I should only click on SUBMIT once eben if it takes an eternity to actually DO anything. & yet I click again. (blush)0 -
Welcome welcome, Maylynne!maylynne said:Now and the future
Thank you Peggy.
You said it all, that is what goes through my mind.
I have to spend some time reading all the posts to get to know you all.
Maylynne
Sorry. It posted 3 times and I am EDITing out my duplicated messages. As long as I have the floor anyway (HA!), when you talk about peritoneal cytology, do you mean they found cancer cells on the 'washing'? And that alone can jump your diagnosis to Stage 3? I did not know that! They found microscopic cancer cells in 1 of the 25 lymph nodes they removed in my surgery and also found cells in the peritoneal cavity washing liquid, but I didn't know that could affect staging decisions. I am considered Stage III-c. You make me feel really good about my chances of being CURED. My CA-125 is now in the normal range and I've had 2 clear CT-scans, but I am still in the midst of treatment. When my treatment regime is over, I hope I can stop being afraid. Survivors like you and Peggy really give those of us in treatment justifiable hope.0 -
Peritoneal cytologylindaprocopio said:Welcome welcome, Maylynne!
Sorry. It posted 3 times and I am EDITing out my duplicated messages. As long as I have the floor anyway (HA!), when you talk about peritoneal cytology, do you mean they found cancer cells on the 'washing'? And that alone can jump your diagnosis to Stage 3? I did not know that! They found microscopic cancer cells in 1 of the 25 lymph nodes they removed in my surgery and also found cells in the peritoneal cavity washing liquid, but I didn't know that could affect staging decisions. I am considered Stage III-c. You make me feel really good about my chances of being CURED. My CA-125 is now in the normal range and I've had 2 clear CT-scans, but I am still in the midst of treatment. When my treatment regime is over, I hope I can stop being afraid. Survivors like you and Peggy really give those of us in treatment justifiable hope.
Yes that means the "washings". Positive washings can happen at surgery, when a few cancer cells escape, particularly with laproscopic surgery. Not sure if it happens at surgery whether it is different to it happening before. From what I have read, certain articles
claim that they are not sure about the positive cytology and how it affects the prognosis. It may just mean that the cancer is aggressive. My surgeon told me that I just had a few cells, and that is why I needed pelvic radiation.
There was a lot of discussion as to whether I really needed radiation as the cancer was in a polyp. I am glad they decided to do the radiation.
So from a stage 1a I was upped to a 3a.
Once you get through your treatments, you will be able to be a lot more positive. The protocol that was used for my treatment is determined by the Canadian Cancer society.(British Columbia) They are supposed to be one of the best Cancer agencies. Time will tell.
I have been reading some of your posts, and you are a brave lady, keep it up. The sex thing is also ok, once you are healed after radiation you use a dilator. I was told for 1 year. I have had no problems so far. The first time one is a little nervous, as you feel rather fragile.
Also eat a low fibre diet during radiation, it helps the bowels. Talk to you soon. M0 -
functional profiling and staginglindaprocopio said:Had my chemo, with transfusion planned for NEXT Monday
I was able to have my chemo today! It was conditionally approved, as long as I agreed to come back next Monday, have another blood test, and am prepared to have a blood transfusion unless my hemoglobin (red counts) miraculously go UP after the chemo instead of further DOWN, which is the expected result. But for today’s blood work, the extra week’s delay allowed my platelet count to triple to well within the safe range. My red count only went up from 9.6 to 9.7, ALMOST to the safe threshold number of 10, and good enough for him to make an exception, with the transfusion next week. All I have to do is be careful not to faint and I can’t drive all week. I just have to get up slowly from the couch or out of bed; keep my head above my heart when I bend over; and not take any long hot baths or showers. And I’ll hold the rail and stop when I go up and down steps if I feel whoosy. I’ll be fine. So I have 4 of my total scheduled 6 chemo rounds in me, and a plan for the getting the last 2. They had to make 3 tries before they could get the intravenous in me for the chemo, as my veins are getting all scarred and hard from the earlier chemo. Surely I have 2 more good veins left and won't have to get a port just for those 2, although the poor girl poking me with the needles said she wished I would! So I am fine and very happy tonight, glad to be one step closer to this ordeal being over.
I asked Dr. White about all the research I did, and he said that it will be many years before that type of testing is done in this country. He told me that he thought I should take a break from internet research. THAT isn't likely! And if I have any kind of recurrance that involves surgery, this WILL come up again, but next time with my gyn-onc surgeon. So don't be surprised if your oncologists aren't receptive to this idea initially.
It was like a reunion today, with 3 of my "every Monday" chemo buddies all in for treatments, and that always makes the time go by faster. Now I need to email my family and friends that I promised to report to. I am exhausted, but may not be able to sleep tonight again, and "hampster days are here AGAIN" (so soon!) with the steroids jazzing me up.
Hi Linda and all,
I have been reading your posts - boy there are alot! and very interesting and informative - but had to respond to this one immediately. Lucky for me I had the functional profiling done after surgery - I guess I thought this was a standard procedure. It showed the Taxol/Carboplatin to have the best response of all the combinations tested. Others included Carboplatin/Gemcitabine which was also responsive, carbo/docetaxel (still responsive), and doxorubicin (not responsive).
The staging process is also interesting to me. After surgery I was told I was stage IIIc - all lymph nodes tested from surgery were negative. But subsequent PET scan showed metastasis in several distant areas - which I assumed changed my stage to IV, though my doctor has never foramlly told me this. I thought he was trying not to scare me. I guess it's time I came out at asked him to explain.
Daisy0 -
My mom's story - so far
My 76 year old mother has UPSC and I would like to share her story so others might be encouraged. She lives in Central Calif. in a city of about 120,000 people. In March 2008 mom had a hysterectomy and was diagnosed with uterine cancer. Her oncologist said she had "garden variety" uterine cancer. He did NOT tell us she had UPSC (I don't think he even knew). The cancer was limited to the pelvic area. She had 5 weeks of radiation, 5 days a week,chemo once a week and brachytherapy. (She never lost her hair and the side effects were blessedly minimal) A CT scan showed a small tumor on her liver which was removed completely by the amazing and wonderful Dr. Nicholas Nissen at Cedars Sinai Hospital in Los Angeles. After she healed from that surgery, she had a PET scan that showed the previous pelvic cancer "spots" were gone but now there were 2 small spots near the aortic lymph nodes. Mom had a second 5 week course of radiation and chemo. Before this course was done we had decided to seek a 2nd opinion because her oncologist was so un-enthusiastic and indifferent, did not offer a lot of information and spent very little time with her. He met with her in December to discuss the final PET scan and said with the report looked good and she should come back in August for another PET scan. We asked why she had to wait so long for a follow up and he said her insurance wouldn't cover another PET scan so soon. We didn't feel 100% relieved because the report stated that there were "residual" spots that might be inflammation; the doc said those spots MIGHT go away in a few weeks.
On 4/1/09, we met with Dr. Beth Karlan, a women's cancer specialist at Cedars Sinai, had a new PET scan (insurance OK'd - no problem) and found out that my mom was cancer free and in remission! She will have another PET scan at Cedars in July.
Last week, mom felt tired and had a little back pain. Her gen. practitioner gave her a blood test and told her she was having a heart attack! She was immediately admitted to the local hospital and this past Monday she had heart surgery: a quadruple bypass. She is doing well and will be released in about 4 days. I have since learned that chemo and radiation can damage heart valves and doctors should check for heart damage during or after cancer treatment. My mother is slim, eats healthy and is in great shape for her age but her family has a history of heart disease. She had complained to her onocologist several times about feeling a pressure in her chest and shortness of breath - but her oncologist and radiation oncologist both told her it was just due to the radiation.
Sorry for this long post, I am finally ready to make 2 points:
First - Remission is not impossible with UPSC - Dr. Karlan has several patients who have been in remission for 15 years or more.
Second - always get a 2nd opinion, and ALWAYS go to a gynecological oncologist for any type of womens cancer.
Best wishes and good luck to everyone!0 -
Thank you SOOOO much for that encouraging post!!!!
What a blessing you are to have made it a point to share that encouraging and hopeful story with us! THANK YOU! Each of us with UPSC will sleep a little easier with the reinforcement to our determination and the hope that you have bolstered up. BIG HUGS!!0 -
Thank you SOOOO much for that encouraging post!!!!
What a blessing you are to have made it a point to share that encouraging and hopeful story with us! THANK YOU! Each of us with UPSC will sleep a little easier with the reinforcement to our determination and the hope that you have bolstered up. BIG HUGS!!0 -
Thank you SOOOO much for that encouraging post!!!!
What a blessing you are to have made it a point to share that encouraging and hopeful story with us! THANK YOU! Each of us with UPSC will sleep a little easier with the reinforcement to our determination and the hope that you have bolstered up. BIG HUGS!!0 -
Thank you Daughter No 1DaughterNo1 said:My mom's story - so far
My 76 year old mother has UPSC and I would like to share her story so others might be encouraged. She lives in Central Calif. in a city of about 120,000 people. In March 2008 mom had a hysterectomy and was diagnosed with uterine cancer. Her oncologist said she had "garden variety" uterine cancer. He did NOT tell us she had UPSC (I don't think he even knew). The cancer was limited to the pelvic area. She had 5 weeks of radiation, 5 days a week,chemo once a week and brachytherapy. (She never lost her hair and the side effects were blessedly minimal) A CT scan showed a small tumor on her liver which was removed completely by the amazing and wonderful Dr. Nicholas Nissen at Cedars Sinai Hospital in Los Angeles. After she healed from that surgery, she had a PET scan that showed the previous pelvic cancer "spots" were gone but now there were 2 small spots near the aortic lymph nodes. Mom had a second 5 week course of radiation and chemo. Before this course was done we had decided to seek a 2nd opinion because her oncologist was so un-enthusiastic and indifferent, did not offer a lot of information and spent very little time with her. He met with her in December to discuss the final PET scan and said with the report looked good and she should come back in August for another PET scan. We asked why she had to wait so long for a follow up and he said her insurance wouldn't cover another PET scan so soon. We didn't feel 100% relieved because the report stated that there were "residual" spots that might be inflammation; the doc said those spots MIGHT go away in a few weeks.
On 4/1/09, we met with Dr. Beth Karlan, a women's cancer specialist at Cedars Sinai, had a new PET scan (insurance OK'd - no problem) and found out that my mom was cancer free and in remission! She will have another PET scan at Cedars in July.
Last week, mom felt tired and had a little back pain. Her gen. practitioner gave her a blood test and told her she was having a heart attack! She was immediately admitted to the local hospital and this past Monday she had heart surgery: a quadruple bypass. She is doing well and will be released in about 4 days. I have since learned that chemo and radiation can damage heart valves and doctors should check for heart damage during or after cancer treatment. My mother is slim, eats healthy and is in great shape for her age but her family has a history of heart disease. She had complained to her onocologist several times about feeling a pressure in her chest and shortness of breath - but her oncologist and radiation oncologist both told her it was just due to the radiation.
Sorry for this long post, I am finally ready to make 2 points:
First - Remission is not impossible with UPSC - Dr. Karlan has several patients who have been in remission for 15 years or more.
Second - always get a 2nd opinion, and ALWAYS go to a gynecological oncologist for any type of womens cancer.
Best wishes and good luck to everyone!
Thanks so much for sharing your mother's story. It is very encouraging to hear about her remission from UPSC. Thank the Lord that her heart symptoms were caught and treated and that she is doing well.
God Bless you and your mother!0 -
Daughter #1 Thank you for the encouragementDaughterNo1 said:My mom's story - so far
My 76 year old mother has UPSC and I would like to share her story so others might be encouraged. She lives in Central Calif. in a city of about 120,000 people. In March 2008 mom had a hysterectomy and was diagnosed with uterine cancer. Her oncologist said she had "garden variety" uterine cancer. He did NOT tell us she had UPSC (I don't think he even knew). The cancer was limited to the pelvic area. She had 5 weeks of radiation, 5 days a week,chemo once a week and brachytherapy. (She never lost her hair and the side effects were blessedly minimal) A CT scan showed a small tumor on her liver which was removed completely by the amazing and wonderful Dr. Nicholas Nissen at Cedars Sinai Hospital in Los Angeles. After she healed from that surgery, she had a PET scan that showed the previous pelvic cancer "spots" were gone but now there were 2 small spots near the aortic lymph nodes. Mom had a second 5 week course of radiation and chemo. Before this course was done we had decided to seek a 2nd opinion because her oncologist was so un-enthusiastic and indifferent, did not offer a lot of information and spent very little time with her. He met with her in December to discuss the final PET scan and said with the report looked good and she should come back in August for another PET scan. We asked why she had to wait so long for a follow up and he said her insurance wouldn't cover another PET scan so soon. We didn't feel 100% relieved because the report stated that there were "residual" spots that might be inflammation; the doc said those spots MIGHT go away in a few weeks.
On 4/1/09, we met with Dr. Beth Karlan, a women's cancer specialist at Cedars Sinai, had a new PET scan (insurance OK'd - no problem) and found out that my mom was cancer free and in remission! She will have another PET scan at Cedars in July.
Last week, mom felt tired and had a little back pain. Her gen. practitioner gave her a blood test and told her she was having a heart attack! She was immediately admitted to the local hospital and this past Monday she had heart surgery: a quadruple bypass. She is doing well and will be released in about 4 days. I have since learned that chemo and radiation can damage heart valves and doctors should check for heart damage during or after cancer treatment. My mother is slim, eats healthy and is in great shape for her age but her family has a history of heart disease. She had complained to her onocologist several times about feeling a pressure in her chest and shortness of breath - but her oncologist and radiation oncologist both told her it was just due to the radiation.
Sorry for this long post, I am finally ready to make 2 points:
First - Remission is not impossible with UPSC - Dr. Karlan has several patients who have been in remission for 15 years or more.
Second - always get a 2nd opinion, and ALWAYS go to a gynecological oncologist for any type of womens cancer.
Best wishes and good luck to everyone!
I too appreciate you sharing you Mother's story with us. It is wonderful she has been in remission for 15 years. That sure gives us a lot of hope. I hope she recovers soon from her by-pass surgery.0 -
Just moving our LONGEST, OLDEST, & BEST thread to page 1.lindaprocopio said:Thank you SOOOO much for that encouraging post!!!!
What a blessing you are to have made it a point to share that encouraging and hopeful story with us! THANK YOU! Each of us with UPSC will sleep a little easier with the reinforcement to our determination and the hope that you have bolstered up. BIG HUGS!!
There are so many new women posting with UPSC that I wanted to move this old thread up to page 1, and encourage those with the time to sit down and read this from start to finish, like a book about having UPSC. I think you will find it well worth your time, and the best resource on the web for 'real time' information and experience. ENJOY!0 -
Mom was just diagnosed with UPSC. We have so many questions.
My Mom was just diagnosed with UPSC; stage IV.
I have so many questions... Could you help me find some answers?
How uncommon is this cancer?
They were unable to remove her uterus, because the tumor was wrapped around her kidneys. They are doing chemo in order to shrink the cancer enough to remove the uterus.
Has any of you had it done this way? Was it successful?
Mom's cancer is spreading so quickly. It spread a bunch within the couple of weeks prior to chemo.
Is this unusual?
She is getting so sick, so quickly. We are wondering about hope.0 -
UPSC
OK. I still don't know how many here have UPSC. There are 390-some responses here. Does anyone have an "official" count?0 -
No, but would be grateful if you would take one.princepack said:UPSC
OK. I still don't know how many here have UPSC. There are 390-some responses here. Does anyone have an "official" count?
Thanks for your help.
Claudia0 -
The "UN" official countcalifornia_artist said:No, but would be grateful if you would take one.
Thanks for your help.
Claudia
OK. So, since I have nothing better to do today... I went through this blog and counted. Looks like there are 12 of us here with UPSC and 3 whose mom's have UPSC to bring us to a total of 15. I wrote down all of your screen names. You will all be on my friend's list as soon as I get some food in me. Can't eat after 11 am today because of my surgery tomorrow and it is 9:30 am now. I gotta get eating (haven't even had breakfast yet)!!!0 -
I think the count is much higherprincepack said:The "UN" official count
OK. So, since I have nothing better to do today... I went through this blog and counted. Looks like there are 12 of us here with UPSC and 3 whose mom's have UPSC to bring us to a total of 15. I wrote down all of your screen names. You will all be on my friend's list as soon as I get some food in me. Can't eat after 11 am today because of my surgery tomorrow and it is 9:30 am now. I gotta get eating (haven't even had breakfast yet)!!!
When I signed on this site in January I was the 10th person with UPSC to sign on thus the Name Ro 10. On my June 16th post I wrote that we had "60 sisters" who had signed in to this site by then. I know there have been many more that have signed on since June. It is sad that we have had so many ladies and family members that have signed on to this site. It does seem that there are many more young ladies signing in. I wish the number would not increase, but I know that won't happen.
Wishing you good luck with your surgery. In peace and caring.0 -
how are you?lindaprocopio said:Just moving our LONGEST, OLDEST, & BEST thread to page 1.
There are so many new women posting with UPSC that I wanted to move this old thread up to page 1, and encourage those with the time to sit down and read this from start to finish, like a book about having UPSC. I think you will find it well worth your time, and the best resource on the web for 'real time' information and experience. ENJOY!
I just found this site this morning and then this afternoon I found your postings. it is so wonderful to see these posts from the women with the same dx as me- UPSC- stage 4. I didn't have time to read through the entire list of postings but I would love to know how you are doing today. hope all is well and would love to "talk" to you.
elizabeth0 -
uterine papillary serous cancerDaughterNo1 said:My mom's story - so far
My 76 year old mother has UPSC and I would like to share her story so others might be encouraged. She lives in Central Calif. in a city of about 120,000 people. In March 2008 mom had a hysterectomy and was diagnosed with uterine cancer. Her oncologist said she had "garden variety" uterine cancer. He did NOT tell us she had UPSC (I don't think he even knew). The cancer was limited to the pelvic area. She had 5 weeks of radiation, 5 days a week,chemo once a week and brachytherapy. (She never lost her hair and the side effects were blessedly minimal) A CT scan showed a small tumor on her liver which was removed completely by the amazing and wonderful Dr. Nicholas Nissen at Cedars Sinai Hospital in Los Angeles. After she healed from that surgery, she had a PET scan that showed the previous pelvic cancer "spots" were gone but now there were 2 small spots near the aortic lymph nodes. Mom had a second 5 week course of radiation and chemo. Before this course was done we had decided to seek a 2nd opinion because her oncologist was so un-enthusiastic and indifferent, did not offer a lot of information and spent very little time with her. He met with her in December to discuss the final PET scan and said with the report looked good and she should come back in August for another PET scan. We asked why she had to wait so long for a follow up and he said her insurance wouldn't cover another PET scan so soon. We didn't feel 100% relieved because the report stated that there were "residual" spots that might be inflammation; the doc said those spots MIGHT go away in a few weeks.
On 4/1/09, we met with Dr. Beth Karlan, a women's cancer specialist at Cedars Sinai, had a new PET scan (insurance OK'd - no problem) and found out that my mom was cancer free and in remission! She will have another PET scan at Cedars in July.
Last week, mom felt tired and had a little back pain. Her gen. practitioner gave her a blood test and told her she was having a heart attack! She was immediately admitted to the local hospital and this past Monday she had heart surgery: a quadruple bypass. She is doing well and will be released in about 4 days. I have since learned that chemo and radiation can damage heart valves and doctors should check for heart damage during or after cancer treatment. My mother is slim, eats healthy and is in great shape for her age but her family has a history of heart disease. She had complained to her onocologist several times about feeling a pressure in her chest and shortness of breath - but her oncologist and radiation oncologist both told her it was just due to the radiation.
Sorry for this long post, I am finally ready to make 2 points:
First - Remission is not impossible with UPSC - Dr. Karlan has several patients who have been in remission for 15 years or more.
Second - always get a 2nd opinion, and ALWAYS go to a gynecological oncologist for any type of womens cancer.
Best wishes and good luck to everyone!
This is my first post. I would love to hear back from any of you!
My sister was diagnosed 12 months ago at age 55. She was incredibly healthy in every way at diagnosis. She had surgery/hysterectomy Jan 2009, then 5 months of chemo followed by 2 months of radiation. After a clean PET scan a couple months ago, her Dr. believes the cancer has returned. I would appreciate any suggestions at this point. Has anyone had any success with alternative medicine? She is being treated by an experienced physician who is board certified in Gynecologic Oncology and Obstetrics & Gynecology. However, she had not received a second opinion.0
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