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

daisy366

claudiamd1 said:

Thanks
Thanks Linda. Yes, I have already found this discussion board very helpful in the fact that my doctor never revealed my C125 score. Not sure why he didn't but I thought it was interesting that so many here in this discussion board had talked about it. I did ask my Radiation Oncologist and she said I really didn't need to know since I'm only getting Radiation. Thanks for the hugs!!!!! Like many on this board I also was shocked when I found out and so was my community and my family, relatives both here in the USA and Germany. They were all devasted by my news. I never felt that way at all, I finally knew what was going on with my body, what a relief it was to find out and being able to battle the enemy. So again, thanks for the warm welcome and glad to have found all of you!
C

CA125
Hi Claudia,

Welcome. I'm Mary Ann, 61 and stage 3a UPSC patient - had hysterectomy last Sept and completed 6 rounds of taxol/carboplatin. My doctor believes I am NED and I am on surveillance now.

Before my surgery my CA125 was over 200 - it is now 8. Under 35 or so is considered normal. CA 125 is oftentimes - not always - an indicator of treatment response. It is an ovarian cancer marker but UPSC often acts like ovarian cancer. My doctor said that this is a good indicator for me.

Re: you doctor's comments about "you really don't need to know...". This is a troubling and condescending attitude I think. You are the patient and you have a right to know everything and be given accurate information by your healthcare team. I wonder why a doctor would say that?

Keep asking questions!!!!! There are no stupid questions. Information is power.

Best wishes to you. Mary Ann

Ro10

daisy366 said:

CA125
Hi Claudia,

Welcome. I'm Mary Ann, 61 and stage 3a UPSC patient - had hysterectomy last Sept and completed 6 rounds of taxol/carboplatin. My doctor believes I am NED and I am on surveillance now.

Before my surgery my CA125 was over 200 - it is now 8. Under 35 or so is considered normal. CA 125 is oftentimes - not always - an indicator of treatment response. It is an ovarian cancer marker but UPSC often acts like ovarian cancer. My doctor said that this is a good indicator for me.

Re: you doctor's comments about "you really don't need to know...". This is a troubling and condescending attitude I think. You are the patient and you have a right to know everything and be given accurate information by your healthcare team. I wonder why a doctor would say that?

Keep asking questions!!!!! There are no stupid questions. Information is power.

Best wishes to you. Mary Ann

Mary Ann glad you have NED
Mary Ann that is wonderful news to have NED. Snf yout CA 125 count is great. I am so happy for you to get the great news. Enjoy your time to be free of treatments. Hope your next check-up goes as well. Take care. HUGS to you.

woofgang

A New UPSC Sister
I was diagnosed with endometrial cancer with both papillary serous and clear cell features 12/22/2008. Surgery was New Year's Eve, and the pathology came back as a stage IIIC. There was a tumor deep in the endometrium extending into the cervix and microscopic cells in 3 of the pelvic lymph glands. They took out the uterus, cervix, ovaries, fallopian tubes, omentum, and the 3 pelvic lymph glands with cancer. I had a second opinion at MD Anderson, but both doctors had the same recommendation - 6 courses of chemo w/taxol/carboplatin and 28 radiation treatments. The only difference was that one doctor said radiation should be first and the other said chemo should be first. I'm doing chemo first and finished the 4th treatment 4/9. I've tolerated it well so far, but must admit I'm nervous about radiation and need to learn more. My CA 125 was 13.4 on Jan. 27 and has dropped to 4.2. Doctor says normal is 35, so that's all positive. I feel there really isn't any cancer there now, and we're just doing all this as a precaution. I look forward to catching up on all of your messages and gleaning some wisdom from your experiences.

lindaprocopio

woofgang said:

A New UPSC Sister
I was diagnosed with endometrial cancer with both papillary serous and clear cell features 12/22/2008. Surgery was New Year's Eve, and the pathology came back as a stage IIIC. There was a tumor deep in the endometrium extending into the cervix and microscopic cells in 3 of the pelvic lymph glands. They took out the uterus, cervix, ovaries, fallopian tubes, omentum, and the 3 pelvic lymph glands with cancer. I had a second opinion at MD Anderson, but both doctors had the same recommendation - 6 courses of chemo w/taxol/carboplatin and 28 radiation treatments. The only difference was that one doctor said radiation should be first and the other said chemo should be first. I'm doing chemo first and finished the 4th treatment 4/9. I've tolerated it well so far, but must admit I'm nervous about radiation and need to learn more. My CA 125 was 13.4 on Jan. 27 and has dropped to 4.2. Doctor says normal is 35, so that's all positive. I feel there really isn't any cancer there now, and we're just doing all this as a precaution. I look forward to catching up on all of your messages and gleaning some wisdom from your experiences.

Hi, Woofgang! (from another UPSC Sister Stage III-c)
Welcome! There's a few of us with Stage IIIc UPSC that post here, currently in treatment. You are so right that oncologists don't agree what order to have the radiation and chemo, and I think it may have to do with where they see the cancer seemed to be trying to travel to,...distant or near. My oncologist wanted me to have all my chemo first because he most feared distant metestasis for me, perhaps because there were microscopic cancer cells found in the 'wash', and my cancer was discovered in a PAP test, showing that clearly the cells were exfoliating and floating free to make mischief. I had my last round of chemo March 26th (6 rounds of carbo/taxol 3 weeks apart when my blood work allowed them that close together), and had my radiation simulation yesterday, with my 28 rounds of external pelvic radiation to start April 30th. (I will also have 3 rounds of internal vaginal radiation after that.) Others posting here with our same III-c diagnosis had all of their radiation first; others are having it 'sandwiched' between the 3rd and 4th chemo round. Everyone's cancer is as individual as a snowflake, and this cancer is rare enough that they just haven't been able to conclusively test what will work best under what circumstances.

That's a GREAT CA-125! You are right; you may already be cancer-free! Try to hang onto that idea. I encourage you to be aggressive and try and get all of your treatments in, or as many as your body will tolerate. Please work through as many of the old posts here as you can, as you will get a 'real-time' idea what you are going through and what to expect. And don't read anything about UPSC on the internet older than 1 or 2 years old, as things have chenged so radidly for us, for the better!

deanna14

woofgang said:

A New UPSC Sister
I was diagnosed with endometrial cancer with both papillary serous and clear cell features 12/22/2008. Surgery was New Year's Eve, and the pathology came back as a stage IIIC. There was a tumor deep in the endometrium extending into the cervix and microscopic cells in 3 of the pelvic lymph glands. They took out the uterus, cervix, ovaries, fallopian tubes, omentum, and the 3 pelvic lymph glands with cancer. I had a second opinion at MD Anderson, but both doctors had the same recommendation - 6 courses of chemo w/taxol/carboplatin and 28 radiation treatments. The only difference was that one doctor said radiation should be first and the other said chemo should be first. I'm doing chemo first and finished the 4th treatment 4/9. I've tolerated it well so far, but must admit I'm nervous about radiation and need to learn more. My CA 125 was 13.4 on Jan. 27 and has dropped to 4.2. Doctor says normal is 35, so that's all positive. I feel there really isn't any cancer there now, and we're just doing all this as a precaution. I look forward to catching up on all of your messages and gleaning some wisdom from your experiences.

Welcome woofgang
Welcome, I am happy that you found this group to talk to. These wonderful ladies have provided me with so much support through this ordeal. It is so nice to share with people who really understand where you are coming from. I am sorry though that you have this diagnosis.
You have a great CA 125 and it sounds like your attitude is just as positive. I too choose to believe that the cancer was gone after surgery and that treatment is all about ensuring that it does not come back.
I had 25 external and 3 internal radiation treatments from October to December. I had my 4th carboplatin/taxol chemo treatment last Monday and will have 2, maybe 3 more. My 3rd treatment was postponed by 2 weeks due to low blood counts. The have decreased the carbo dose, so I hope to stay on schedule for the rest of the treatments. The decrease in dose may have bought me and extra treatment, but the doctor hasn't decided yet. Whatever it takes to keep me healthy!
Well, again welcome. Take good care of yourself. God Bless!
Deanna

Ro10

woofgang said:

A New UPSC Sister
I was diagnosed with endometrial cancer with both papillary serous and clear cell features 12/22/2008. Surgery was New Year's Eve, and the pathology came back as a stage IIIC. There was a tumor deep in the endometrium extending into the cervix and microscopic cells in 3 of the pelvic lymph glands. They took out the uterus, cervix, ovaries, fallopian tubes, omentum, and the 3 pelvic lymph glands with cancer. I had a second opinion at MD Anderson, but both doctors had the same recommendation - 6 courses of chemo w/taxol/carboplatin and 28 radiation treatments. The only difference was that one doctor said radiation should be first and the other said chemo should be first. I'm doing chemo first and finished the 4th treatment 4/9. I've tolerated it well so far, but must admit I'm nervous about radiation and need to learn more. My CA 125 was 13.4 on Jan. 27 and has dropped to 4.2. Doctor says normal is 35, so that's all positive. I feel there really isn't any cancer there now, and we're just doing all this as a precaution. I look forward to catching up on all of your messages and gleaning some wisdom from your experiences.

Welcome Woofgang, I too have stage 3 C
Woofgang I am sorry you are joining our journey that we are taking together. I had my surgery done on 1/5/09. I started treatment 1/29/09. I am one of those who had 3 chemo treatments, and started external radiation treatments last week. After the external radiation I will have to go into the hospital for a few days for the internal radiation. Then I will have 3 more chemo treatments. Keep the positive attitude and and I hope you continue to do well with your treatments. So far my radiation has not been a problem at all. You have to go everyday, but I live within 10 minutes of the cancer center, so it is not a problem for me. There is a lot to be learned from all the posts on this site. Feel free to ask any questions you might have. Someone will probably have an answer for you. Where do you live? We have people from many different states. Take care and HUGS to you.

daisy366

Ro10 said:

Welcome Woofgang, I too have stage 3 C
Woofgang I am sorry you are joining our journey that we are taking together. I had my surgery done on 1/5/09. I started treatment 1/29/09. I am one of those who had 3 chemo treatments, and started external radiation treatments last week. After the external radiation I will have to go into the hospital for a few days for the internal radiation. Then I will have 3 more chemo treatments. Keep the positive attitude and and I hope you continue to do well with your treatments. So far my radiation has not been a problem at all. You have to go everyday, but I live within 10 minutes of the cancer center, so it is not a problem for me. There is a lot to be learned from all the posts on this site. Feel free to ask any questions you might have. Someone will probably have an answer for you. Where do you live? We have people from many different states. Take care and HUGS to you.

Welcome, thank you, and more
Welcome Woofgang from another UPSC sister. I'm Mary Ann and have stage 3a - which I thought had changed but my doc says no, it is still 3a.

I finished 6 rounds of carbo/taxol at end of Feb and my doc is NOT recommending any radiation now. I questioned him and mentioned that "everyone else is!" (like a kid who is left out of the fun - haha). But he said he thinks I'm NED and does not see any evidence radiation is needed. So, Linda, you are right about the "different as a snowflake thing". I'm trying to enjoy the NED and not worry that I am "under-treated" - I hear you all about the aggressive treatment from the onset to avoid a recurrence. Doc said "there's 60% chance you won't have a recurrence". I'm trying to think positive. The PET scan is still in appeal. If that gets done, it may shed more light on the prior "lit up" areas from PET done 1 month after surgery. Doc thinks this is more likely healing or inflammation than cancer because my pelvic nodes were all negative. It makes sense to me after he explained it all.

Thank you Ro, Deanna, Marge, Linda, Sharon, and all others who are so encouraging and thoughtful. It really is great to be connected to you all. What a club!! It beats the alone feeling before my husband found you ladies. It would be great to have a reunion someday.

Deanna, I think you should pursue your complaint. I am dragging my feet on a complaint against the ER dept. when I was admitted with SEVERE PAIN last 9/11 when my cancer decided to make itself known to me. There was no chair at the admitting desk - I ended up doubled over in pain in the waiting room unable to move - they kept calling my name but I couldn't move. My pain went uncontrolled for hours while they dilly dallied around. I complained verbally but noone ever called me back and there is still no chair next to the admitting desk. So I need to let the CEO know what is going on in the ER. We - including ME- need to make our voices heard instead of being silent.

I feel good and everyone says I look good. My hair is growing back enough to "get messy" - I look pretty good with my velvety skull - I'll have to get a pix taken and post here. I'm working nearly fulltime (I'm a clinical social worker) and singing at church and community chorus. Life is good.

I pray for all of us and send you all love, smiles, and hugs,

Mary Ann

desperate daughter

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.

hormone therapy
Hello ladies,
I just joined yesterday after stumbling across the website while trying to do some research for my mother who was diagnosed with papillary serous almost 2yr ago. She was prescribed Megace shortly after starting chemotherapy to help improve appetite and her oncologists also mentioned that it has shown to help with certain ovarian ca's, and due to the ugliness of papillary serous she was hopeful it would have some effect. Unfortunately my mother was very noncompliant with it, because at the time she was still eating pretty well, and she decided that she already had enough other medications to take, so it really was never given a chance to be effective in her case. Due to her progression of disease her Dr. just recently decided to dc it, feeling that it was not having any effect. We admitted that she had not been taking it, but it was still not reordered. I don't know how familar you are with Megace but it is very commonly prescribed to the elderly to improve appetite and for anyone going through radiation and chemo it could be helpful and if it truly is a progestional agent I would say it gets 2 stars or at least worth a try.

debbiediamond

daisy366 said:

Welcome, thank you, and more
Welcome Woofgang from another UPSC sister. I'm Mary Ann and have stage 3a - which I thought had changed but my doc says no, it is still 3a.

I finished 6 rounds of carbo/taxol at end of Feb and my doc is NOT recommending any radiation now. I questioned him and mentioned that "everyone else is!" (like a kid who is left out of the fun - haha). But he said he thinks I'm NED and does not see any evidence radiation is needed. So, Linda, you are right about the "different as a snowflake thing". I'm trying to enjoy the NED and not worry that I am "under-treated" - I hear you all about the aggressive treatment from the onset to avoid a recurrence. Doc said "there's 60% chance you won't have a recurrence". I'm trying to think positive. The PET scan is still in appeal. If that gets done, it may shed more light on the prior "lit up" areas from PET done 1 month after surgery. Doc thinks this is more likely healing or inflammation than cancer because my pelvic nodes were all negative. It makes sense to me after he explained it all.

Thank you Ro, Deanna, Marge, Linda, Sharon, and all others who are so encouraging and thoughtful. It really is great to be connected to you all. What a club!! It beats the alone feeling before my husband found you ladies. It would be great to have a reunion someday.

Deanna, I think you should pursue your complaint. I am dragging my feet on a complaint against the ER dept. when I was admitted with SEVERE PAIN last 9/11 when my cancer decided to make itself known to me. There was no chair at the admitting desk - I ended up doubled over in pain in the waiting room unable to move - they kept calling my name but I couldn't move. My pain went uncontrolled for hours while they dilly dallied around. I complained verbally but noone ever called me back and there is still no chair next to the admitting desk. So I need to let the CEO know what is going on in the ER. We - including ME- need to make our voices heard instead of being silent.

I feel good and everyone says I look good. My hair is growing back enough to "get messy" - I look pretty good with my velvety skull - I'll have to get a pix taken and post here. I'm working nearly fulltime (I'm a clinical social worker) and singing at church and community chorus. Life is good.

I pray for all of us and send you all love, smiles, and hugs,

Mary Ann

one year anniversary upsc full hysterectomy may-08
Hi everyone.....glad to find this group.....it's going on a year next week that i had my surgery....went in for an overnite stay to have a full hysterectomy with upsc diagnosis and ended up in hospital for 12 days with an ICU stay of nearly a week cuz when they took the tubes out after surgery, my body did not respond by breathing on it's own and then my lungs collapsed and they had to put the tubes back in real quick cuz i had stopped breathing....a terrible experience to say the least. Anyway, they said they couldn't get the lymph nodes but removed everything else and the wash was ok, (and the cancer was 50% into the muscle)...My oncologist was very negative and we did not get along at all....she was bleak and didn't seem to care much about me and did not seem to want to listen to me, so after having one session of chemo and getting sick from it; I did not continue with the other five sessions of chemo, nor the radiation, so i do not see her anymore or talk to her. I don't want to seem negative cuz i am not that personality; but i have been so anxious cuz i did not follow the rules and have pretty much kept myself bedridden with anxiety, depresssion, and fear that i did not do what they told me to do.....I guess i have said enough, cuz i just blame myself over and over for all the flashbacks i have to the surgery etc....thanks for listenting.....oh, i was diagnosed with stage III melanoma four years ago, and have not been able to walk for two years from severe knee arthritis....sorry for sounding so down, but I am these days for sure......deb

lindaprocopio

debbiediamond said:

one year anniversary upsc full hysterectomy may-08
Hi everyone.....glad to find this group.....it's going on a year next week that i had my surgery....went in for an overnite stay to have a full hysterectomy with upsc diagnosis and ended up in hospital for 12 days with an ICU stay of nearly a week cuz when they took the tubes out after surgery, my body did not respond by breathing on it's own and then my lungs collapsed and they had to put the tubes back in real quick cuz i had stopped breathing....a terrible experience to say the least. Anyway, they said they couldn't get the lymph nodes but removed everything else and the wash was ok, (and the cancer was 50% into the muscle)...My oncologist was very negative and we did not get along at all....she was bleak and didn't seem to care much about me and did not seem to want to listen to me, so after having one session of chemo and getting sick from it; I did not continue with the other five sessions of chemo, nor the radiation, so i do not see her anymore or talk to her. I don't want to seem negative cuz i am not that personality; but i have been so anxious cuz i did not follow the rules and have pretty much kept myself bedridden with anxiety, depresssion, and fear that i did not do what they told me to do.....I guess i have said enough, cuz i just blame myself over and over for all the flashbacks i have to the surgery etc....thanks for listenting.....oh, i was diagnosed with stage III melanoma four years ago, and have not been able to walk for two years from severe knee arthritis....sorry for sounding so down, but I am these days for sure......deb

(((((Deb))))) Big Hugs!
It sounds like you have been through a VERY rough time, you poor thing! No one can blame you for wanting to get away from an oncologist you didn't like or trust. It sounds like you are beating yourself up about your decision to stop chemo every day. Maybe you would feel better if you went to a DIFFERENT Gynecologic-oncologist for an opinion. You could get a new CT-scan and start over with cancer treatments and get something prescribed for the depression and anxiety. Big big hugs, Deb! I always have said that the surgery is the hardest part opf the treatment, harder than chemo and harder than radiation. So the hardest part is behind you now. Please think about it. Regardless, please stay with us and share the support of this group of wonderful ladies. But please think about finding a new Gyn-onc; there are some wonderfully supportive doctors out there and you deserve someone who will work with you and undrestand your justifiable fears and concerns.

daisy366

debbiediamond said:

one year anniversary upsc full hysterectomy may-08
Hi everyone.....glad to find this group.....it's going on a year next week that i had my surgery....went in for an overnite stay to have a full hysterectomy with upsc diagnosis and ended up in hospital for 12 days with an ICU stay of nearly a week cuz when they took the tubes out after surgery, my body did not respond by breathing on it's own and then my lungs collapsed and they had to put the tubes back in real quick cuz i had stopped breathing....a terrible experience to say the least. Anyway, they said they couldn't get the lymph nodes but removed everything else and the wash was ok, (and the cancer was 50% into the muscle)...My oncologist was very negative and we did not get along at all....she was bleak and didn't seem to care much about me and did not seem to want to listen to me, so after having one session of chemo and getting sick from it; I did not continue with the other five sessions of chemo, nor the radiation, so i do not see her anymore or talk to her. I don't want to seem negative cuz i am not that personality; but i have been so anxious cuz i did not follow the rules and have pretty much kept myself bedridden with anxiety, depresssion, and fear that i did not do what they told me to do.....I guess i have said enough, cuz i just blame myself over and over for all the flashbacks i have to the surgery etc....thanks for listenting.....oh, i was diagnosed with stage III melanoma four years ago, and have not been able to walk for two years from severe knee arthritis....sorry for sounding so down, but I am these days for sure......deb

Hi Deb.
I agree with Linda. We are here for you - to listen, encourage and support. Everyone needs HOPE!!! This diagnosis is devastating to say the least. It helped me when people told me to be strong and FIGHT!!

It's got to be horrible for you to have a doctor who was not supportive- it obviously was not a "good fit". We are the "customers" and we can FIRE ANYONE WHO IS NOT HELPING US or treating us with care and dignity. With our rare cancer we need a gynecologic oncologist. You can find one near you by searching online - maybe the cancer society or your primary care doctor can recommend one to you.

I would encourage you to stop beating yourself up - Author Louise Hay says that we need for "forgive others - and ourselves - for not living up to our expectations". That little phrase has helped me alot to let go of the burden of resentment and guilt that can paralyze us. I also got strength from O. Carl Simonton's book "Getting Well Again" in which he teaches meditation and guided imagery to help the body heal. The mind is very powerful.

So, Deb, hang in there and take heart. You CAN DO THIS!! And we are here for you.

Mary Ann

roxiesmom

hi, I'm new.
my name is Susie, and I am registered here with a photo, but not
sure where exactly I am on the site. I put in that my cancer was Uterine,
but UPSC isn't a category. I want to wind everything back to just early
June, when I had never heard of any of this stuff.

I just wish I was as far along as you are.
my email is susieakins@cox.net.

thanks Linda,
Susie

Ro10

roxiesmom said:

hi, I'm new.
my name is Susie, and I am registered here with a photo, but not
sure where exactly I am on the site. I put in that my cancer was Uterine,
but UPSC isn't a category. I want to wind everything back to just early
June, when I had never heard of any of this stuff.

I just wish I was as far along as you are.
my email is susieakins@cox.net.

thanks Linda,
Susie

Welcome to the site Susie
You are in the right place if you have UPSC. Unfortunately that is the diagnosis most of us have. We welcome you on your journey with us. Feel free to ask any questions you might have, or express any fears or anxieties you may have. We will try to help you on this journey.

I was diagnosed in January 09 with Stage 3-C UPSC. I had robotic surgery in January. I just finished my 6 chemo treatments and the external and internal radiation treatments. It has been a long journey, but this site has helped me so much with all the encouragement, support and answered questions by these wonderful ladies. Good luck to you. I love your picture with your dogs.

deanna14

roxiesmom said:

hi, I'm new.
my name is Susie, and I am registered here with a photo, but not
sure where exactly I am on the site. I put in that my cancer was Uterine,
but UPSC isn't a category. I want to wind everything back to just early
June, when I had never heard of any of this stuff.

I just wish I was as far along as you are.
my email is susieakins@cox.net.

thanks Linda,
Susie

You have come to the right place!
Hi Susie,
I am glad that you found all of us here, but sorry that you are going through all of this. A lot of us on here have UPSC and some have the more common form of endometrial/uterine cancer.
I would be nice to have a remote on your life to rewind, fast forward, pause and replay. LOL... too bad it doesn't work that way.
I am 40 years old and was diagnosed with UPSC last September, when I had a total hysterectomy. I had mets to one pelvic lymph node. I had 25 external radiation and 3 internal radiation treatments from October to December of last year. I started chemo with taxol and carboplatin in January and finished on June 10.
When were you diagnosed and where are you in treatment? Just curious where you are from if you don't mind sharing. The hospital that I take treatment at is Cox hospital in Springfield, MO. Just wondering as your email is cox.net?

Hugs and prayers,
Deanna

roxiesmom

deanna14 said:

You have come to the right place!
Hi Susie,
I am glad that you found all of us here, but sorry that you are going through all of this. A lot of us on here have UPSC and some have the more common form of endometrial/uterine cancer.
I would be nice to have a remote on your life to rewind, fast forward, pause and replay. LOL... too bad it doesn't work that way.
I am 40 years old and was diagnosed with UPSC last September, when I had a total hysterectomy. I had mets to one pelvic lymph node. I had 25 external radiation and 3 internal radiation treatments from October to December of last year. I started chemo with taxol and carboplatin in January and finished on June 10.
When were you diagnosed and where are you in treatment? Just curious where you are from if you don't mind sharing. The hospital that I take treatment at is Cox hospital in Springfield, MO. Just wondering as your email is cox.net?

Hugs and prayers,
Deanna

hi Deanna and Ro,
I live in Aliso Viejo, CA. Just south of Newport Beach. I know I'm 54, but I really think I'm 40 - like Deanna. I'm going to name drop here, only because I think it is just surreal. The actress - Annette Benning's sister is a gynocologist in Newport Beach. I could never afford to go to her because she doesn't take insurance.
-She is a neighbor with one of my best friends.
Who only happened to mention to her that her friend (me) had some bleeding - was that serious? Jane (Benning) told her to tell me to assume it's cancer and work backwards. I probably wouldn't have actually gone in that quickly had it not been for that. I will thank her for that one day. I went to the onc/gyn doc that she recommended after I found out how right she had been.
My hospital is Saddleback - just because it is super close - my doctor works out of there, UC Irvine, and Long Beach Memorial. Had all the organs removed two weeks ago. Starting chemo the 19th, and scared to death. I don't know what grade I am. I know it's a tough cancer to get, but my doc is not recommending radiation, similar to a few others here.

Deanna - did you have it anywhere other than the uterus and one node?
Why are our therapies so different, I wonder?
Mine was the uterus and one tube. No nodes. But I still get the barbaric chemotherapy that all of you brave soldiers have battled. I've heard such hideous things, like cancer sores in the mouth,
puking, sore bones, I just can't wait.

Other than what they are going to give me for all of that - any suggestions to prepare? Don't eat much before you go in?

They tell me it's a 6 hour ordeal.
What do you do for 6 hours? Sleep? Be sick?

Every book I read about cancer tells me to NOT have chemo, to just get super alcaline (which I am now) and fight it with my own immune system, which there won't be much left of, after chemo.
I'm just depressed - and so scared. It's just me and the two knuckleheads in the photo. No one else.

I am so glad I found you!
Susie

roxiesmom

debbiediamond said:

one year anniversary upsc full hysterectomy may-08
Hi everyone.....glad to find this group.....it's going on a year next week that i had my surgery....went in for an overnite stay to have a full hysterectomy with upsc diagnosis and ended up in hospital for 12 days with an ICU stay of nearly a week cuz when they took the tubes out after surgery, my body did not respond by breathing on it's own and then my lungs collapsed and they had to put the tubes back in real quick cuz i had stopped breathing....a terrible experience to say the least. Anyway, they said they couldn't get the lymph nodes but removed everything else and the wash was ok, (and the cancer was 50% into the muscle)...My oncologist was very negative and we did not get along at all....she was bleak and didn't seem to care much about me and did not seem to want to listen to me, so after having one session of chemo and getting sick from it; I did not continue with the other five sessions of chemo, nor the radiation, so i do not see her anymore or talk to her. I don't want to seem negative cuz i am not that personality; but i have been so anxious cuz i did not follow the rules and have pretty much kept myself bedridden with anxiety, depresssion, and fear that i did not do what they told me to do.....I guess i have said enough, cuz i just blame myself over and over for all the flashbacks i have to the surgery etc....thanks for listenting.....oh, i was diagnosed with stage III melanoma four years ago, and have not been able to walk for two years from severe knee arthritis....sorry for sounding so down, but I am these days for sure......deb

Debbie are you doing anything for your knee?
hi Debbie,
I just joined here and am no expert, but you have to get a handle on your health.
Get yourself over to a rheumatologist, or even a primary care doctor and get yourself back up. Start stretching your body in bed. Stretch everything.
- there are all of these incredible new arthritis cures that actually reverse the arthritis. If you can afford PT - great, but you can do it on your own just fine. One foot after the other with a walker. Put a brace on that knee if you need to.
You have to walk through the pain, first with a walker and then a cane. My mom broke her hip at 87, and she got up, so you can too. She was never steady Eddy to begin with, but we got her up. The pain about killed her, but she did it.

Don't beat yourself up over the decisions that you made. Screw them, it's your body. You get to choose what ever you want to do with it.
I'm doing chemo only because they are making me. My preference would be to do it on my own, so if nothing else, search alternative cancer cures - eat to kill cancer, do all of the things that you can at least do now on your own and as soon as you can, go find another oncologist that isn't such a sourpuss.
It's the elephant in the room, Debbie - you can't ignore it forever.

This website may seem a little wacky, but they have a ton of great and free information that will be a good start for you.
Just remember that everyone has their point of view, and you don't need to understand all of it to be able to gleen good information that you can understand. And try. Just try. I'm crying everynight like a freaking baby, Debbie, this is not normal for anybody. We are all in the same mess, so please just try and start somewhere, ok?
http://www.new-cancer-treatments.org/Articles/CancerDiet.html

Warmest thoughts,
Susie

lindaprocopio

roxiesmom said:

hi Deanna and Ro,
I live in Aliso Viejo, CA. Just south of Newport Beach. I know I'm 54, but I really think I'm 40 - like Deanna. I'm going to name drop here, only because I think it is just surreal. The actress - Annette Benning's sister is a gynocologist in Newport Beach. I could never afford to go to her because she doesn't take insurance.
-She is a neighbor with one of my best friends.
Who only happened to mention to her that her friend (me) had some bleeding - was that serious? Jane (Benning) told her to tell me to assume it's cancer and work backwards. I probably wouldn't have actually gone in that quickly had it not been for that. I will thank her for that one day. I went to the onc/gyn doc that she recommended after I found out how right she had been.
My hospital is Saddleback - just because it is super close - my doctor works out of there, UC Irvine, and Long Beach Memorial. Had all the organs removed two weeks ago. Starting chemo the 19th, and scared to death. I don't know what grade I am. I know it's a tough cancer to get, but my doc is not recommending radiation, similar to a few others here.

Deanna - did you have it anywhere other than the uterus and one node?
Why are our therapies so different, I wonder?
Mine was the uterus and one tube. No nodes. But I still get the barbaric chemotherapy that all of you brave soldiers have battled. I've heard such hideous things, like cancer sores in the mouth,
puking, sore bones, I just can't wait.

Other than what they are going to give me for all of that - any suggestions to prepare? Don't eat much before you go in?

They tell me it's a 6 hour ordeal.
What do you do for 6 hours? Sleep? Be sick?

Every book I read about cancer tells me to NOT have chemo, to just get super alcaline (which I am now) and fight it with my own immune system, which there won't be much left of, after chemo.
I'm just depressed - and so scared. It's just me and the two knuckleheads in the photo. No one else.

I am so glad I found you!
Susie

Welcome, Susie. Glad you're here.
Warmest welcome. Cancer is so scary and everyone needs a place to communicate with others going through the same thing. I strongly encourage you to get a paper copy of the pathology report from your surgery. You need to know the GRADE and STAGE of your cancer, so that you can make informed decisions on your treatment options. For instance, if you have a Grade 3 (fast-moving, sneaky, and sometimes resistant to treatment) cancer, you will want to fight for the most aggressive treatments because you'll want to do everything you can to stop the spread of these fast-growing cancers. But if you have a Grade 1, Stage 1 cancer, you will have the option of weighing any long-term side affects against the curative benefit of any offered therapies. You'll feel and be much more empowered once you know EXACTLY waht you are up against. And we'll be able to help you more with research and personal experiences once you have all the facts on your particular cancer. ((((Susie))))). Big hugs, kiddo.

Unknown

This comment has been removed by the Moderator

lindaprocopio

unknown said:

This comment has been removed by the Moderator

Patricia: some additional exerpts from the new Gyn-Onc study:
This is a very technical article, but I hope it will help you decide whether chemo and radiation is something you need to do. I am pulling out JUST the information on Stage 1 UPSC:

Cited Article: Boruta DM, et al, Management of women with uterine papillary serous cancer: A Society of Gynecologic Oncology (SGO) review, Gynecol Oncol (2009):

The prognostic significance of thorough surgical staging was
emphasized by their finding of 94% overall survival in women with
tumor limited to their uteri (22 women with 2–73 months of followup).
Turner et al. noted a significant 5-year survival difference in a
group of 38 women with “stage I” UPSC depending on whether
complete surgical staging had been performed or not (100% vs. 61%,
respectively). In a study of 206 women with surgical stage I–II
UPSC, Fader et al. demonstrated that recurrence and progression-free
survival were not associated with increasing percentage of UPSC in
the histologic specimen, lymphovascular-space invasion (LVSI), or
tumor size. Patients with UPSC in their uterine specimens were at
a significant risk for recurrence (21% overall) and poor survival
outcomes regardless of the percentage of total tumor comprised of
UPSC.

Stage I UPSC has a poor prognosis with a high rate of recurrence,
primarily extra-pelvic in nature. The development of effective
adjuvant therapies should be considered a priority in this subgroup
of women. Historically, radiotherapy has been the mainstay of
adjuvant treatment for endometrial carcinoma. Because of the
tendency for UPSC to recur within the peritoneal cavity, most
investigation of radiotherapy for early-stage adjuvant treatment has
focused on whole abdominal radiotherapy incorporating a pelvic
boost (WAPI). Kwon et al. reported on 23 women with stage I
UPSC (only one surgically staged) treated with WAPI, none of whom
received chemotherapy. Five-year survival was 78.3%, but all
recurrenceswere within the radiated field. An additional retrospective
report by Lim et al. described 43 women with clinical stage I UPSC
treated with an adjuvant WAPI protocol. Of 10 patients that
recurred, 7 did so within the field of radiation.

A retrospective study by Huh et al. reporting a group of 60 women
with stage I UPSC is unique in that all were comprehensively surgically
staged. Post-operativemanagement consisted of observation alone
in 40 women (66%), adjuvant radiotherapy in 12 women (20%),
adjuvant chemotherapy in 7 women (12%), and a combination of
radiation and chemotherapy in 1 woman (2%). The radiation delivered
was WAPI in 3, whole pelvic and brachytherapy in 5, and vaginal
brachytherapy alone in 4 women. The risk of recurrence and overall
survivalwere equivalent between those that received either no adjuvant
therapy or radiation therapy alone (17 vs. 16%, and 66 and 59%,
respectively) prompting the authors to question the benefit of radiotherapy
in women with surgically staged UPSC confined to the uterus.

The GOG completed the only prospective study of adjuvant
radiotherapy in women with early-stage UPSC. Twenty-one
women were treated with WAPI consisting of 3000 cGy at 150 cGy/
day to the abdomen and a pelvic boost of 1980 cGy at 180 cGy/day.
Eight of 19 evaluable patients died of recurrent UPSC, 5 of whom
had recurrent disease within the radiation field. The authors
concluded that other adjuvant approaches, namely chemotherapy,
perhaps in combination with radiotherapy, should be evaluated in
this population.

Based on the propensity for peritoneal recurrence in women with
UPSC, Fakiris et al. performed a unique study to evaluate the potential role of adjuvant treatment with intraperitoneal radioactive phosphorus
(32P). Seventeen of the 21 patients were stage I–IIB, and
all had undergone comprehensive surgical staging including maximal
cytoreduction with no residual disease N3 mm. Recurrences included
two intraperitoneal and two vaginal. The vaginal recurrences
prompted addition of vaginal brachytherapy to the regimen, after
which no additional vaginal recurrences were noted.

The high frequency of distant recurrence in stage I UPSC, along with
treatment failures within the radiation fields, has led to increasing use
of adjuvant chemotherapy and reports of its success. For example, in
the above noted study by Huh et al., none of 8 women whose adjuvant
treatment included chemotherapy experienced recurrence.
Dietrich et al. reported their use of platinum-based adjuvant
chemotherapy in 29 women with stage I UPSC. Treatment
consisted of carboplatin (AUC 6) and paclitaxel (135–175 mg/m2) in
21 women. All were alive without evidence of disease 10–138 months
after treatment. One vaginal recurrence after 3 cycles of adjuvant
chemotherapy was successfully treated with chemo-radiation.
In the largest retrospective series in the literature on women with
surgical stage I UPSC (n=141), Fader et al. demonstrated that while
early-stage patients have a significant risk for extra-pelvic recurrence,
recurrence and survival outcomes were significantly improved in
patients whoreceived platinum/taxane chemotherapy±radiotherapy
compared to women who received no adjuvant therapy or radiotherapy
alone [87]. Women treated with platinum/taxane-based
chemotherapy had a significantly lower recurrence rate (11.2%)
when compared to patients who did not receive chemotherapy
(26.9%; p=.021). This effect was most pronounced in women with
stage IB/IC UPSC. On multiple logistic regression, only chemotherapy
and substage impacted recurrence. Progression-free and causespecific
survival for women treated with chemotherapy was more
favorable than for women who did not receive chemotherapy
(p=0.024 and 0.081, respectively). Again, this difference was most
pronounced in stage IB/IC UPSC (p=0.003). The overall recurrence
rate in this study (17%), along with the finding that most recurrences
were not salvageable (91.7%), suggests the need for improved systemic
therapy in the treatment of early-stage UPSC as well as improved
second-line agents.

A retrospective, multi-institution study including 83 womenwith stage I
UPSC concluded that observation could be considered in patients with
stage IA disease. Although UPSC recurred in 3 of 32 women (9%)
with stage IA disease, only 1 of 22 stage IA women (5%) who
underwent observation alone experienced recurrence. Recurrence in
stage IB/IC disease occurred in 15 of 51 (29%) of women. Similarly,
Thomas et al. proposed that women with comprehensively surgically
staged IA UPSC should undergo observation, while adjuvant chemotherapy
and vaginal brachytherapy be considered for those with
stage IB and IC disease [97]. No recurrences were detected among the
15 women with stage IA UPSC, regardless of post-operative management
but distant recurrence was noted in 3 of 13 women (23%) with
stage IB and IC UPSC who did not receive any adjuvant chemotherapy.
Alternatively, in the series by Fader et al. which included 55 women
with surgical stage IA UPSC, three of 21 women (14.3%) who did not
receive adjuvant therapy (radiotherapy alone or chemotherapy±
radiotherapy) recurred within 2 years [87]. Two of these women died
of disease following extra-pelvic recurrence.

RECOMMENDATIONS:

• Comprehensive surgical staging should be performed when
feasible in all women diagnosed with UPSC. In addition to simple
hysterectomy, bilateral salpingo-oophorectomy, pelvic and paraaortic
lymphadenectomy, and washings for cytology, performance
of omentectomy and peritoneal biopsies should be considered
given the propensity for UPSC to metastasize within the peritoneal
cavity.
• Adjuvant therapy, including platinum-based chemotherapy and
vaginal brachytherapy, should be considered in women with stage I
UPSC.
• The relatively favorable prognosis of women with stage IA UPSC
with no residual uterine disease after comprehensive surgical
staging may justify close observation alone. However, adjuvant
chemotherapy and vaginal brachytherapy should be considered in
other stage IA patients.
• Women with advanced-stage UPSC are best treated with optimal
cytoreduction of metastatic disease followed by adjuvant platinum-
based chemotherapy (carboplatin and paclitaxel or cisplatin
and adriamycin).
• Careful long-term surveillance following treatment is indicated
given the higher rate of recurrence in UPSC patients compared to
those with EEC.

roxiesmom

lindaprocopio said:

Welcome, Susie. Glad you're here.
Warmest welcome. Cancer is so scary and everyone needs a place to communicate with others going through the same thing. I strongly encourage you to get a paper copy of the pathology report from your surgery. You need to know the GRADE and STAGE of your cancer, so that you can make informed decisions on your treatment options. For instance, if you have a Grade 3 (fast-moving, sneaky, and sometimes resistant to treatment) cancer, you will want to fight for the most aggressive treatments because you'll want to do everything you can to stop the spread of these fast-growing cancers. But if you have a Grade 1, Stage 1 cancer, you will have the option of weighing any long-term side affects against the curative benefit of any offered therapies. You'll feel and be much more empowered once you know EXACTLY waht you are up against. And we'll be able to help you more with research and personal experiences once you have all the facts on your particular cancer. ((((Susie))))). Big hugs, kiddo.

chemo weight gain?
hi Linda and all of you,
I read in one of your postings about this - I thought I was supposed
to LOSE weight with this ordeal - not gain it. I am pretty average,
but always trying to drop that last 5 lbs.
What about all those Law and Order episodes where the guy's wife answers the door with a scarf on her head, emaciated down to 70 lbs... She says "I have ovarian cancer and doing my last round of chemotherapy."

I thought AT LEAST I could lose that last 5 lbs.
Seriously. It is actually normal to gain weight with chemo?

Should I stop eating so much now? I thought I'd be losing.

God- the things we don't know.
thank you so much,
Susie