Which UPSC Sisters haven't found us yet in our new site location?

lindaprocopio

Who is still among the missing of the UPSC Sisters? Do any of you have email addresses so that we can let any of the others who haven't posted yet here, know where we are? I wish they'd fix the 'email notification' feature since that would give them the link automatically.

california_artist

Hormone therapy for upsc
Hey,
Has anyone had any discussion with their doctors about hormone therapy. UPSC often is progesterone receptive and does respond to forms of progestin therapy, but neither of the oncologists I've seen have been willing to even test for progesterone receptors. My brother at the same age as I was when diagnosed with my cancer, was diagnosed with prostate cancer, a very agressive form, and was given hormone therapy when he asked, after his cancer returned a year later. The treatment brought his number down to zero, and he's been fine since, five years. So I was thinking and reading, and wondering due to the similarities about hormone therapy for me.
Ah, any ideas????
Love and kisses
Claudia
claudiaallen27@yahoo.com
906 864-9827
Thought I'd add contact info. Not much of a talker about the weather though.

lindaprocopio

california_artist said:

Hormone therapy for upsc
Hey,
Has anyone had any discussion with their doctors about hormone therapy. UPSC often is progesterone receptive and does respond to forms of progestin therapy, but neither of the oncologists I've seen have been willing to even test for progesterone receptors. My brother at the same age as I was when diagnosed with my cancer, was diagnosed with prostate cancer, a very agressive form, and was given hormone therapy when he asked, after his cancer returned a year later. The treatment brought his number down to zero, and he's been fine since, five years. So I was thinking and reading, and wondering due to the similarities about hormone therapy for me.
Ah, any ideas????
Love and kisses
Claudia
claudiaallen27@yahoo.com
906 864-9827
Thought I'd add contact info. Not much of a talker about the weather though.

Hi, Claudia! I did a little research on Tamoxifen
Thanks for checking in; I wasn't sure my Private Messages would reach anyone. Until recently, I didn't even know this Board had that feature, and I had an OLD message waiting for me.

One of the women with ovarian cancer asked us if there was any emphasis on trying to reduce estrogen in the line of treatments for UPSC. She was taking tamoxifen to suppress it, and it was apparently working to keep what may be recurrent ovarian cancer at bay for her, and it was prescribed to two other women she knew with ovarian cancer. She noted that endometrial uterine cancer is typically encouraged by excessive estrogen. I am always interested in treatments for recurrent ovarian cancer because the initial treatment for ovarian cancer is so similar to what they treat us with (8 rounds of carboplatin/pacitaxel), and UPSC is considered highly recurrent too. The ovarian cancer Discussion Board is well worth reading because their oncologists are forced to be extremely creative and aggressive the longer they survive. I hope to NOT recur (UNDERSTATEMENT) but I want to have my game plan just in case.

So I looked it up, and ended up fairly confused. If you Google 'tamoxifen' and 'endometrial cancer', you'll see all kind of articles about how breast cancer survivors were more at risk of DEVELOPING endometrial cancer by taking tamoxifen, multi-year. So maybe hormone therapy for UPSC would be a different estrogen reducing drug?? Any hormone therapy drug names we could research? I have chemo next on Feb. 16th and the tamoxifen question is already on my list, although my oncologist already told me to take a 'research' break and is probably getting tired of all my endless questions. But I'm not likely to be passive about my treatment.

california_artist

lindaprocopio said:

Hi, Claudia! I did a little research on Tamoxifen
Thanks for checking in; I wasn't sure my Private Messages would reach anyone. Until recently, I didn't even know this Board had that feature, and I had an OLD message waiting for me.

One of the women with ovarian cancer asked us if there was any emphasis on trying to reduce estrogen in the line of treatments for UPSC. She was taking tamoxifen to suppress it, and it was apparently working to keep what may be recurrent ovarian cancer at bay for her, and it was prescribed to two other women she knew with ovarian cancer. She noted that endometrial uterine cancer is typically encouraged by excessive estrogen. I am always interested in treatments for recurrent ovarian cancer because the initial treatment for ovarian cancer is so similar to what they treat us with (8 rounds of carboplatin/pacitaxel), and UPSC is considered highly recurrent too. The ovarian cancer Discussion Board is well worth reading because their oncologists are forced to be extremely creative and aggressive the longer they survive. I hope to NOT recur (UNDERSTATEMENT) but I want to have my game plan just in case.

So I looked it up, and ended up fairly confused. If you Google 'tamoxifen' and 'endometrial cancer', you'll see all kind of articles about how breast cancer survivors were more at risk of DEVELOPING endometrial cancer by taking tamoxifen, multi-year. So maybe hormone therapy for UPSC would be a different estrogen reducing drug?? Any hormone therapy drug names we could research? I have chemo next on Feb. 16th and the tamoxifen question is already on my list, although my oncologist already told me to take a 'research' break and is probably getting tired of all my endless questions. But I'm not likely to be passive about my treatment.

Hormone therapy
Hey,
Actually, I wasn't referring to hormones used to suppress estrogen, but hormones used take up the receptors for progesterone, which UPSC is prone to have. The most common hormone replacement used is progestin and occasionally, RU-486 mega something or another.
The number of progesterone receptors can be an indicator of how well or poorly a cancer person might fair.
Wait, okay, I looked it up:"The most common Hormonal treatment has been progestational agents, which produce good anti-tumor responses in as many as 15 to 30% of patients. These responses are associated with significant improvement in survival. Progesterone and estrogen hormone receptors have been identified in endometrial carcinoma tissues. Responses the hormones are correlated with the presence and level of hormone receptors and the degree of tumor differentiation. Standard progestational agents include hydroxyprogesterone (Delalutin), medroxyprogesterone (Provera), and megestrol (Megace)."
I have printed out around 17 pages from this website and while I don't have the url, as it was in my early confused days of web surfing, I believe it is from the National Cancer institute. The papers give a phone number of 1 800 4 CANCER. In another place in the paper it says "Patients positive for estrogen and progesterone receptors respoond best to progestin therapy. A receptor-poor status may predict not only poor response to progestins but also a better response to cytotoxic chemotherapy."
Anywho, my take on it, and is totally my opinion, we women ought to insist on having our tumors tested for progesterone and estrogen receptors. I have asked two oncologists and neither is willing to do that. Anybody got a big stick I can poke 'em with???? Or do we not use sticks anymore??
Love and kisses,
Claudia
Ah, I'm not really sure where this goes, I respond one place and it seems to go somewhere entirely different.

lindaprocopio

california_artist said:

Hormone therapy
Hey,
Actually, I wasn't referring to hormones used to suppress estrogen, but hormones used take up the receptors for progesterone, which UPSC is prone to have. The most common hormone replacement used is progestin and occasionally, RU-486 mega something or another.
The number of progesterone receptors can be an indicator of how well or poorly a cancer person might fair.
Wait, okay, I looked it up:"The most common Hormonal treatment has been progestational agents, which produce good anti-tumor responses in as many as 15 to 30% of patients. These responses are associated with significant improvement in survival. Progesterone and estrogen hormone receptors have been identified in endometrial carcinoma tissues. Responses the hormones are correlated with the presence and level of hormone receptors and the degree of tumor differentiation. Standard progestational agents include hydroxyprogesterone (Delalutin), medroxyprogesterone (Provera), and megestrol (Megace)."
I have printed out around 17 pages from this website and while I don't have the url, as it was in my early confused days of web surfing, I believe it is from the National Cancer institute. The papers give a phone number of 1 800 4 CANCER. In another place in the paper it says "Patients positive for estrogen and progesterone receptors respoond best to progestin therapy. A receptor-poor status may predict not only poor response to progestins but also a better response to cytotoxic chemotherapy."
Anywho, my take on it, and is totally my opinion, we women ought to insist on having our tumors tested for progesterone and estrogen receptors. I have asked two oncologists and neither is willing to do that. Anybody got a big stick I can poke 'em with???? Or do we not use sticks anymore??
Love and kisses,
Claudia
Ah, I'm not really sure where this goes, I respond one place and it seems to go somewhere entirely different.

I'll share what I found on estrogen replacement therapy
I found a website article (circa 2006) that talks about this:
http://emedicine.medscape.com/article/258148-treatment
This is really hard to understand, but maybe together we can figure out what they're saying:

The use of estrogen replacement therapy (ERT) in women with a history of endometrial cancer is controversial in stage I, grade 1 endometrioid adenocarcinoma. The results of the recent Women's Health Initiative (WHI) have only clouded this issue. Although data are limited, patients who are in complete remission or who have surgical stage I disease and have undergone optimal treatment may be candidates for ERT. The Gynecologic Oncology Group study designed to evaluate ERT in early-stage endometrial cancer patients was closed prematurely because of the fallout from the WHI results. As a result, it is hard to draw any conclusions from the authors' data. Therapy should be individualized and extensive counseling regarding risks, benefits, and alternatives must be completed prior to initiating estrogen replacement therapy. An alternative for relief of vasomotor symptoms is clonidine. Raloxifene is a selective estrogen receptor modulator, has bone protective benefits without increased risk of endometrial or breast cancer, and may be used as an alternative. However, vasomotor symptoms may worsen with raloxifene.

While unopposed estrogens have an adverse effect in terms of risk, progestins have a well-known protective effect on the endometrium even when administered in combination with estrogen replacement.

Four routes of spread occur beyond the uterus:
1.) Direct/local spread accounts for the majority of local extension beyond the uterus.
2.) Lymphatic spread accounts for spread to pelvic, para-aortic, and, rarely, inguinal lymph nodes.
3.) Hematologic spread is responsible for metastases to the lungs, liver, bone, and brain (rare).
4.) Peritoneal/transtubal spread results in intraperitoneal implants, particularly with uterine papillary serous carcinoma (UPSC), similar to the pattern observed in ovarian cancer.

After tumor reductive surgery for extrapelvic/advanced disease at the time of laparotomy, adjuvant/adjunctive therapy is individualized. Localized radiation therapy is administered for CNS and bone metastases. Adjuvant whole-abdominal radiation therapy is reserved for those who have no macroscopic extrapelvic disease secondary to its high morbidity; however, this is controversial. Otherwise, these patients are treated with chemotherapy and/or progestin or antiestrogen therapy. Medroxyprogesterone acetate and megestrol therapy is efficacious for those low-grade tumors that are estrogen and/or progesterone receptor–positive.

Tamoxifen is an effective alternative when progestin therapy is contraindicated (eg, coronary artery disease, breast cancer). A 75-80% objective response occurs with estrogen and/or progesterone receptor–positive tumors compared to less than 5% in the absence of estrogen and/or progesterone receptor–positive tumors. Unfortunately, the tumors that tend to have intra-abdominal metastases are high grade and are less likely to be estrogen and/or progesterone receptor–positive tumors (15-41%). In cases of advanced disease, sending tissue, specifically from metastatic sites, for receptor analysis is useful. Metastases are receptor positive in 25% of metastatic tumors compared to 60% of primary tumors.

However, if advanced disease is present, progestin therapy and doxorubicin-based chemotherapy have a role. If the tumor is hormone receptor–rich, it may be amenable to progestin or antiestrogen therapy.

Ro10

lindaprocopio said:

I'll share what I found on estrogen replacement therapy
I found a website article (circa 2006) that talks about this:
http://emedicine.medscape.com/article/258148-treatment
This is really hard to understand, but maybe together we can figure out what they're saying:

The use of estrogen replacement therapy (ERT) in women with a history of endometrial cancer is controversial in stage I, grade 1 endometrioid adenocarcinoma. The results of the recent Women's Health Initiative (WHI) have only clouded this issue. Although data are limited, patients who are in complete remission or who have surgical stage I disease and have undergone optimal treatment may be candidates for ERT. The Gynecologic Oncology Group study designed to evaluate ERT in early-stage endometrial cancer patients was closed prematurely because of the fallout from the WHI results. As a result, it is hard to draw any conclusions from the authors' data. Therapy should be individualized and extensive counseling regarding risks, benefits, and alternatives must be completed prior to initiating estrogen replacement therapy. An alternative for relief of vasomotor symptoms is clonidine. Raloxifene is a selective estrogen receptor modulator, has bone protective benefits without increased risk of endometrial or breast cancer, and may be used as an alternative. However, vasomotor symptoms may worsen with raloxifene.

While unopposed estrogens have an adverse effect in terms of risk, progestins have a well-known protective effect on the endometrium even when administered in combination with estrogen replacement.

Four routes of spread occur beyond the uterus:
1.) Direct/local spread accounts for the majority of local extension beyond the uterus.
2.) Lymphatic spread accounts for spread to pelvic, para-aortic, and, rarely, inguinal lymph nodes.
3.) Hematologic spread is responsible for metastases to the lungs, liver, bone, and brain (rare).
4.) Peritoneal/transtubal spread results in intraperitoneal implants, particularly with uterine papillary serous carcinoma (UPSC), similar to the pattern observed in ovarian cancer.

After tumor reductive surgery for extrapelvic/advanced disease at the time of laparotomy, adjuvant/adjunctive therapy is individualized. Localized radiation therapy is administered for CNS and bone metastases. Adjuvant whole-abdominal radiation therapy is reserved for those who have no macroscopic extrapelvic disease secondary to its high morbidity; however, this is controversial. Otherwise, these patients are treated with chemotherapy and/or progestin or antiestrogen therapy. Medroxyprogesterone acetate and megestrol therapy is efficacious for those low-grade tumors that are estrogen and/or progesterone receptor–positive.

Tamoxifen is an effective alternative when progestin therapy is contraindicated (eg, coronary artery disease, breast cancer). A 75-80% objective response occurs with estrogen and/or progesterone receptor–positive tumors compared to less than 5% in the absence of estrogen and/or progesterone receptor–positive tumors. Unfortunately, the tumors that tend to have intra-abdominal metastases are high grade and are less likely to be estrogen and/or progesterone receptor–positive tumors (15-41%). In cases of advanced disease, sending tissue, specifically from metastatic sites, for receptor analysis is useful. Metastases are receptor positive in 25% of metastatic tumors compared to 60% of primary tumors.

However, if advanced disease is present, progestin therapy and doxorubicin-based chemotherapy have a role. If the tumor is hormone receptor–rich, it may be amenable to progestin or antiestrogen therapy.

You certainly do thorough research
Linda you really are thorough with your research. Thanks for all of the information. Hope you are feeling stronger now.

lindaprocopio

Ro10 said:

You certainly do thorough research
Linda you really are thorough with your research. Thanks for all of the information. Hope you are feeling stronger now.

Thanks, now the trick is INTERPRETING the research.
I wish I were better at undertanding exactly what they are saying. My questions is: WHEN would this testing be done? Is this something that needs to be done on fresh tissue samples right after surgery? It doesn't sound like a blood test or anything non-invasive and easy. The stuff I pulled out makes it sound like this might be yet another 'tumor tissue test' that could be done after 'Recurrence' debulking surgery. (ARGH, I hate to think about recurrence!) But I am not 100% sure. Anyone alse know? This is something we may be able to ask at the Ovarian Discussion Board as many of them are of hormone therapy following recurrence and maybe even as a precautionery 'after chemo' ongoing treatment.

In my research I came across some other tidbits that I hesitate to post because there's no use worrying. But this article said that UPSC recurrence is most likely to happen within the first 2 years (happy news for Peggy as she has passed that anniversary), and that after surviving 2 years NED, the chance of recurrence goes way down. The article noted that UPSC is more resistant to carboplatin/taxol chemotherapy than ovarian cancer is, although that is still their recommended treatment regime. It noted that vaginal cuff radiation almost completely eliminates the recurrence of UPSC at the vaginal cuff and that is where the cancer is most likely to recur if it is going to recur locally. If it is going to recur more distantly the peretonial cavity, lungs, and liver are prime targets.

Let's not think about recurrence! Let's focus on the battle at hand and make sure we win! The goal for most of us here, right now, is NEVER to recur.

deanna14

lindaprocopio said:

Thanks, now the trick is INTERPRETING the research.
I wish I were better at undertanding exactly what they are saying. My questions is: WHEN would this testing be done? Is this something that needs to be done on fresh tissue samples right after surgery? It doesn't sound like a blood test or anything non-invasive and easy. The stuff I pulled out makes it sound like this might be yet another 'tumor tissue test' that could be done after 'Recurrence' debulking surgery. (ARGH, I hate to think about recurrence!) But I am not 100% sure. Anyone alse know? This is something we may be able to ask at the Ovarian Discussion Board as many of them are of hormone therapy following recurrence and maybe even as a precautionery 'after chemo' ongoing treatment.

In my research I came across some other tidbits that I hesitate to post because there's no use worrying. But this article said that UPSC recurrence is most likely to happen within the first 2 years (happy news for Peggy as she has passed that anniversary), and that after surviving 2 years NED, the chance of recurrence goes way down. The article noted that UPSC is more resistant to carboplatin/taxol chemotherapy than ovarian cancer is, although that is still their recommended treatment regime. It noted that vaginal cuff radiation almost completely eliminates the recurrence of UPSC at the vaginal cuff and that is where the cancer is most likely to recur if it is going to recur locally. If it is going to recur more distantly the peretonial cavity, lungs, and liver are prime targets.

Let's not think about recurrence! Let's focus on the battle at hand and make sure we win! The goal for most of us here, right now, is NEVER to recur.

Genetic Counselor
Linda, I may be able to shed some light on some of this in the future. I have been referred to a genetic counselor for the Lynch Syndrome or HNPCC. I don't have any biologic children, but I have 2 neices and 3 nephews that could be affected by this and then of course any offspring they may have. I think I will pursue it mainly for this purpose.
I had a long discussion today with my gyn/onc and the concern we all have and have discussed are legitimate. The problem is that there just isn't much data on UPSC. Drat... we had to go and get the oddball.
We also talked about possible screening for my neices and nephews. Obviously for the boys it would be frequent (yearly) colonoscopies starting at 29 yo or 10 yrs prior to my uterine dx and my brothers colon dx. We were both 39 when diagnosed. For the girls, it would mean yearly biopsies of the endometrium. My doc said if he were there provider he would recommend them getting their baby making done before the age of 29 and doing the hyst!
Drastic, but cutting edge in eliminating what we are going through.
Knowledge is power!

Ro10

deanna14 said:

Genetic Counselor
Linda, I may be able to shed some light on some of this in the future. I have been referred to a genetic counselor for the Lynch Syndrome or HNPCC. I don't have any biologic children, but I have 2 neices and 3 nephews that could be affected by this and then of course any offspring they may have. I think I will pursue it mainly for this purpose.
I had a long discussion today with my gyn/onc and the concern we all have and have discussed are legitimate. The problem is that there just isn't much data on UPSC. Drat... we had to go and get the oddball.
We also talked about possible screening for my neices and nephews. Obviously for the boys it would be frequent (yearly) colonoscopies starting at 29 yo or 10 yrs prior to my uterine dx and my brothers colon dx. We were both 39 when diagnosed. For the girls, it would mean yearly biopsies of the endometrium. My doc said if he were there provider he would recommend them getting their baby making done before the age of 29 and doing the hyst!
Drastic, but cutting edge in eliminating what we are going through.
Knowledge is power!

Scary information for family members
I am going to talk to my gyn/onc when I go Feb 19 about the genetic link. I have two daughters, and would not like to see them get this. I also have a niece whose father got diagnosed with colon cancer at the age of 56. Unfortunately her mother has breast cancer, so she has cancer on both sides of her family.
What is the HNPCC? I don't remember reading about that. I looked up Lynch Syndrome after reading on one of the earlier posts.
Hope you are doing okay after your second chemo.

deanna14

Ro10 said:

Scary information for family members
I am going to talk to my gyn/onc when I go Feb 19 about the genetic link. I have two daughters, and would not like to see them get this. I also have a niece whose father got diagnosed with colon cancer at the age of 56. Unfortunately her mother has breast cancer, so she has cancer on both sides of her family.
What is the HNPCC? I don't remember reading about that. I looked up Lynch Syndrome after reading on one of the earlier posts.
Hope you are doing okay after your second chemo.

HNPCC and Lynch Syndrome
Same thing... originally it was called Lynch Syndrome, but now they are calling it HNPCC (if I am understanding the doctor correctly). Hereditary Non-polyposis colon cancer (HNPCC). One of the qualifying factors for testing is one first degree relative with early age onset colon or uterine cancer. My mother was dx with uterine ca at age 51 (caught early tx by hyst). My brother was dx with colon cancer at at 39,(like me), and he underwent almost a year of chemotherapy. He didn't lose his hair!lol My mother also had estrogen receptive breast cancer 5 years ago. So seeing the genetic counselor is probably a good idea for me.
I'm doing well post chemo number 2... wired as you can probably tell from my posts. Ramble...
I hope this finds you feeling well. I say where you posted earlier that you haven't lost your hair yet. For me it started on day 13 (last Monday) and today it is just a layer of fine baby hair on the top and some peach fuzz on the bottom.
Hang in there.
Love and Hugs,
Deanna

deanna14

deanna14 said:

HNPCC and Lynch Syndrome
Same thing... originally it was called Lynch Syndrome, but now they are calling it HNPCC (if I am understanding the doctor correctly). Hereditary Non-polyposis colon cancer (HNPCC). One of the qualifying factors for testing is one first degree relative with early age onset colon or uterine cancer. My mother was dx with uterine ca at age 51 (caught early tx by hyst). My brother was dx with colon cancer at at 39,(like me), and he underwent almost a year of chemotherapy. He didn't lose his hair!lol My mother also had estrogen receptive breast cancer 5 years ago. So seeing the genetic counselor is probably a good idea for me.
I'm doing well post chemo number 2... wired as you can probably tell from my posts. Ramble...
I hope this finds you feeling well. I say where you posted earlier that you haven't lost your hair yet. For me it started on day 13 (last Monday) and today it is just a layer of fine baby hair on the top and some peach fuzz on the bottom.
Hang in there.
Love and Hugs,
Deanna

California_artist
Welcome to the group. Have you too been diagnosed UPSC? What treatments have you received. I hope this finds you feeling well. In regards to the hormones... at this point in time my doctor is telling me that the goal for me is to never take hormone replacement. Natural or synthetic. There are over the counter supplements, but he tells me to steer clear of "phyto estrogens." What stage is your disease? I apologize if you have posted this information already, I didn't see it anywhere
I hope we can help you through this difficult time.

cookie1948

uterine serous carcinoma
i just happened on this website and notice that all of you talking about uterine cancer are young. My mom is 85 and the dr told her that she has uterine serous carcinoma. I went with her to the surgeon today. they want to do a total hysterectomy., and she had the CA125 blood test today and a cat scan is being set up. She is in pretty good health considering so this was a shock. She's had a couple of mini strokes a while back but does not look or act 85 and never suspected cancer until one week of staining and her primary dr sent her to a gynecologist where she had biopsies and a scraping. no sign of cancer at the cervix but in endometrium lining and uterus. Surgeon said she may just have to have the surgery and may not need chemo and besides at this age she doesn't want to go thru chemo. what do u gals suggest?

viejachinita

New member
Hello sisters of UPSC,
I have posted a comment but seemed at the wrong place, anyway, I am writing to you again. My son has posted a message for me and thank you very much for all your support through the messages that I received at my email address.

I was in shocked because last month I was a healthy woman and then this month I am almost dying with a rare cancer. since my doctor told me if I don't fight for it then it will eventually eat up all my organs and die painfully. Well, I am not afraid of death but surely very afraid of pain. So I made up my mind to fight against it. I have read almost all of your cases and found out that most of you are receiving both radiation and chemo but my doctor told me (I have tried with 2 doctors) that what I need is just chemo, but I am at stage IIIC, I am very confused and don't understand why? do anyone of you know the reason? Have any of you try the clinical trial, they are developing a new combination of chemical at applying for the patients with III and IV stages. would it be better to try the new one?

Any idea or information are welcomed since I am a new member and suppose to get the chemo next weekend, so I rather prefer to get more information as possible to discuss with my doctor before starting anything, right?

Thank you very much for all your support and hope to hear from you soon!

lindaprocopio

cookie1948 said:

uterine serous carcinoma
i just happened on this website and notice that all of you talking about uterine cancer are young. My mom is 85 and the dr told her that she has uterine serous carcinoma. I went with her to the surgeon today. they want to do a total hysterectomy., and she had the CA125 blood test today and a cat scan is being set up. She is in pretty good health considering so this was a shock. She's had a couple of mini strokes a while back but does not look or act 85 and never suspected cancer until one week of staining and her primary dr sent her to a gynecologist where she had biopsies and a scraping. no sign of cancer at the cervix but in endometrium lining and uterus. Surgeon said she may just have to have the surgery and may not need chemo and besides at this age she doesn't want to go thru chemo. what do u gals suggest?

Welcome Cookie and Willie's mom to the UPSC Sisters!
(Is there a better name I can address you as, other than 'Cookie' and 'Willie's Mom' now that we are UPSC Sisters?)

We are always saddened to learn of others that share this horrible disease, but always glad that you have found your way here for support and hope. We will help you all we can to be prepared for the battle ahead and help you be informed for the many treatment decisions that you may have to make. Please stay with us, and when your time allows, read through the long long thread here on this Board where we posted our original UPSC messages before they gave us our own Uterine Cancer Board (very slow loading because of its size, but it does eventually load to your computer). In that thread we have most of the research we did into various chemo drug options and detail the chemo and radiation side effects we experienced, etc. That will give you a better overview of UPSC cancer than any book you'll be able to find, as it is 'real world' and happening NOW.

Please don't let the statistics you find online about UPSC scare you too much, as anything online older than a year or so is outdated. & All of those 5-year survival studies include people treated 5+ years ago, when treatments were very different and the prognosis for UPSC was very grim. You can beat this cancer. We have survivors here that can assure you of that!

Please ask for the surgery pathology reports when you next see your oncologist, or phone ahead so they have them printed out for you. You'll also want to get printed-out reports on your blood work and CA-125s if you have any worries regarding those. (As long as your blood work 'numbers' are good, you may not need to study your numbers, but you'll want them if you start having trouble.) That way we can help you interpret how you're doing, information you'll need to be pro-active in your own treatment.

lindaprocopio

viejachinita said:

New member
Hello sisters of UPSC,
I have posted a comment but seemed at the wrong place, anyway, I am writing to you again. My son has posted a message for me and thank you very much for all your support through the messages that I received at my email address.

I was in shocked because last month I was a healthy woman and then this month I am almost dying with a rare cancer. since my doctor told me if I don't fight for it then it will eventually eat up all my organs and die painfully. Well, I am not afraid of death but surely very afraid of pain. So I made up my mind to fight against it. I have read almost all of your cases and found out that most of you are receiving both radiation and chemo but my doctor told me (I have tried with 2 doctors) that what I need is just chemo, but I am at stage IIIC, I am very confused and don't understand why? do anyone of you know the reason? Have any of you try the clinical trial, they are developing a new combination of chemical at applying for the patients with III and IV stages. would it be better to try the new one?

Any idea or information are welcomed since I am a new member and suppose to get the chemo next weekend, so I rather prefer to get more information as possible to discuss with my doctor before starting anything, right?

Thank you very much for all your support and hope to hear from you soon!

Whoops! I thought Willie was your DAUGHTER, not your son!
My apologies to Willie! I have 2 devoted concerned sons myself, so I don't know why I assumed Willie was your daughter.

I originally replied to your post and Cookie's in another response that I THINK will end up ABOVE your post, so please scroll UP just in case. Like you, I am never sure where my post will end up, even after all of the posts I have made here.

Warmest welcome to you and thank you for responding to our welcoming emails by coming here. Willie must know you very well and love you very much, for he knew that you would join us if invited, and very much wanted you to have this resource as a place to share your worries and get other opinions from those most likely to have wrestled with the same questions. And just as we can be a resource to you, you will be a resource to us. Every additional oncologist's opinion is an opinion we all ponder and take to our own oncologists. We are all open to new treatment ideas! So PLEASE get as much detail as you can on this new chemo-only regime as it adds to our collective options.

BIG HUGS & in my prayers!!

viejachinita

lindaprocopio said:

Whoops! I thought Willie was your DAUGHTER, not your son!
My apologies to Willie! I have 2 devoted concerned sons myself, so I don't know why I assumed Willie was your daughter.

I originally replied to your post and Cookie's in another response that I THINK will end up ABOVE your post, so please scroll UP just in case. Like you, I am never sure where my post will end up, even after all of the posts I have made here.

Warmest welcome to you and thank you for responding to our welcoming emails by coming here. Willie must know you very well and love you very much, for he knew that you would join us if invited, and very much wanted you to have this resource as a place to share your worries and get other opinions from those most likely to have wrestled with the same questions. And just as we can be a resource to you, you will be a resource to us. Every additional oncologist's opinion is an opinion we all ponder and take to our own oncologists. We are all open to new treatment ideas! So PLEASE get as much detail as you can on this new chemo-only regime as it adds to our collective options.

BIG HUGS & in my prayers!!

Please don't worry about
Please don't worry about that, I have two very devoted and wonderful sons, Willie helps me a lot when I was so sad and depressed. YOur message makes me feel being concerned by somebody I am so appreciated. Yes, I will discuss further more with my oncologist about this chemo only treatment. But if you can please ask your doctor as well to understand why? By far, they just told me that because of the stage (well, actually my "stage") I just need chemo, I didn't get too detail with her at that moment, because I have no sufficient material on hand. May be I am in a too serious situation, I really don't know but after I did a bit more research at the internet I found out that almost all of the cases they did the treatment with the combination of radiation and chemo.

So if you can ask your doctor with this chemo only treatment, I can have a better concept to discuss with mine. Thank you very much. ah, by the way, I am at the stage IIIC.

Thanks! Happy Valentine's Day!

deanna14

viejachinita said:

Please don't worry about
Please don't worry about that, I have two very devoted and wonderful sons, Willie helps me a lot when I was so sad and depressed. YOur message makes me feel being concerned by somebody I am so appreciated. Yes, I will discuss further more with my oncologist about this chemo only treatment. But if you can please ask your doctor as well to understand why? By far, they just told me that because of the stage (well, actually my "stage") I just need chemo, I didn't get too detail with her at that moment, because I have no sufficient material on hand. May be I am in a too serious situation, I really don't know but after I did a bit more research at the internet I found out that almost all of the cases they did the treatment with the combination of radiation and chemo.

So if you can ask your doctor with this chemo only treatment, I can have a better concept to discuss with mine. Thank you very much. ah, by the way, I am at the stage IIIC.

Thanks! Happy Valentine's Day!

Welcome Belinda!
Hi, I am Deanna. I am a 39 yr old with UPSC Stage IIIC. We are all going to fight this and we are all going to win! I too, am curious about the chemo only regime that your doc is recommending. I have only heard of this being treated with chemo and radiation. I have just finished chemo #2 and finished my radiation on December. Chemo is not as bad as I anticipated that it would be. I highly recommend the anti nausea medication, I get the 3 day IV type on the day of chemo. I also have a prescription pill that I start taking the evening of the 2nd day after chemo. I take it until I am sure that I'm not going to have any nausea. I also take a mild pain reliever prescribed by the doctor for a few days following chemo to help with the aches and pains. Do you know yet what chemo drugs you will be taking?
Anyhow, you are strong and you can do this treatment. You have much to live for, I can tell by the worry in your sons words. Be Strong and fight!
God bless you, you are in prayers.

Deanna

deanna14

deanna14 said:

Welcome Belinda!
Hi, I am Deanna. I am a 39 yr old with UPSC Stage IIIC. We are all going to fight this and we are all going to win! I too, am curious about the chemo only regime that your doc is recommending. I have only heard of this being treated with chemo and radiation. I have just finished chemo #2 and finished my radiation on December. Chemo is not as bad as I anticipated that it would be. I highly recommend the anti nausea medication, I get the 3 day IV type on the day of chemo. I also have a prescription pill that I start taking the evening of the 2nd day after chemo. I take it until I am sure that I'm not going to have any nausea. I also take a mild pain reliever prescribed by the doctor for a few days following chemo to help with the aches and pains. Do you know yet what chemo drugs you will be taking?
Anyhow, you are strong and you can do this treatment. You have much to live for, I can tell by the worry in your sons words. Be Strong and fight!
God bless you, you are in prayers.

Deanna

To all of my UPSC sisters!
Happy Valentines Day.....

california_artist

deanna14 said:

To all of my UPSC sisters!
Happy Valentines Day.....

What Hospitals and parts of the country are we all from?
After I say A Wonderful Valentines Day to you all, I was wondering after doing the reading again of all the different approaches our doctors have, where we were from and where we were getting our treatments and whether we are being treated by gyno's or gyno/onc's. How's that for an abbreviation?
I'm from the Upper Penninsula of Michigan. I was referred by my gynocologist to a gyno/onc in Green Bay, Wisconsin so that he could do proper staging, which he did not do as it turns out. How about you girliques?Eh???

lindaprocopio

california_artist said:

What Hospitals and parts of the country are we all from?
After I say A Wonderful Valentines Day to you all, I was wondering after doing the reading again of all the different approaches our doctors have, where we were from and where we were getting our treatments and whether we are being treated by gyno's or gyno/onc's. How's that for an abbreviation?
I'm from the Upper Penninsula of Michigan. I was referred by my gynocologist to a gyno/onc in Green Bay, Wisconsin so that he could do proper staging, which he did not do as it turns out. How about you girliques?Eh???

I'm from central Pennsylvania.
I had my surgery at Hershey Medical Center (a teaching hospital affiliated with Penn State University) by a gyn-onc; and am getting my chemo currently & will be getting my radiation in the spring at Geisinger Medical Center in Danville, PA.

deanna14

california_artist said:

What Hospitals and parts of the country are we all from?
After I say A Wonderful Valentines Day to you all, I was wondering after doing the reading again of all the different approaches our doctors have, where we were from and where we were getting our treatments and whether we are being treated by gyno's or gyno/onc's. How's that for an abbreviation?
I'm from the Upper Penninsula of Michigan. I was referred by my gynocologist to a gyno/onc in Green Bay, Wisconsin so that he could do proper staging, which he did not do as it turns out. How about you girliques?Eh???

I'm from Southwest Missouri
I live in the small town of Fair Grove which lies just north of Springfield Missouri. I am being treated in the Lester E. Cox Health Systems at the Hulston Cancer center. Radiation was done by a radiation oncologist and surgery and chemo were/are being done by a gyn/onc. The cancer was initially found by my gyn who referred me to the gyn/onc.
BTW, I was born in Appleton Wisconsin.