Metastatic endometrial cancer

snyderpm · December 2010

I am horrified by what I am faced with. My stats: I am 66, not overweight, I exercise a lot, and do a lot of physical activities, like riding my horse, and jogging. In Jan 2010 I had a daVinci Hysterectomy to remove my Uterus, Ovaries, Tubes, and Cervix, although my biospy only indicated endometrial cancer. My Gyno/Oncol believes in the agressive approach. After removing everything and doing biopsies of everything including lymph nodes, and pelvic wash, everything was negative, except my Uterus, and the cancer was only at the celluar level, not a tumor. I was Stage 1A, Grade 1, and that is the lowest. Six months later my CA-125 was 57 and in Oct it was 325. How can that be, I said? After a Cat Scan that showed a mass on my Omentum and around a lymph node in my pelvic area, I was informed that I needed a explotory Laparotmy. I Gyno/Oncol felt that the lymph node was probably just some scar tissue with fluid from the biospy, but the Omentum probably had canter. Well they did their thing, and I have metastatic adenocarcinoma in 7 areas in my adominal cavity, but only seeding, except for my Omentum that had a tumor, and they removed my Omentum. I will probably start chemo next week, and it will be the Carbo/Taxol combo every 3 weeks for 4 treatments. I am flabergasted, or whatever, because my Gyno/Oncol was so confident that my original cancer was meaningless, and now they give me 1-3 years. I cry everyday, and so does my husband. I have always said I want to know when I am going to die, but now I can't face it. Please comment.

nempark · December 2010

snyderpm
I was dx with stage 1a grade 3 endometrial in Oct, 2009. DaVinci in Nov. My first Gyn told me nonchalantly, "oh you have some cells, cancer cells in the endometrium, then she said just have a hyst, she rubbed her hands together and said 1,2,3 done over with no further treatment. My second opinion with sur/gyn/onc did further tests, said "total hyst, including the omentum and just to be on the safe side, 6 sessions of Carbo/Taxol. I am now one year in remission. I still have anxieties and I still cry because of all the things I have read on the internet. But it is comforting to know that there are people out there who have been told that they have 6 months to live and are continuing to live and enjoy their lives years later. I have a friend and this is first hand, who was told that she had 9 months to live she had leukemia, she refused to do chemo and did herbal that was 16 years ago. I have heard so many things about Chemo... the truth is I had my sessions and was not sick even one day, did not even lose my appetite. So each one of us will handle our situation differently. Who are they to predict how much time you have? They do not know. It's okay to feel sad and it's okay to cry. Cry, but you have to start thinking positive and gear yourself for recovery. Be careful with your husband, my husband got sick immediately after my dx,he is okay now. Please take care of yourself and I pray that you keep positive and enjoy each day of life. Hugs and comfort to you and your husband. J.

snyderpm · December 2010

Lisa 00 said:
Sorry to meet under such circumstances
I'm sorry for all you've been through emotionally and physically. I just wanted to say that you may want to consider a second opinion. Sometimes just getting someone else to talk to helps and gives you a different take on things and hopefully some new information about your case. I ended up having reservations about my first gyn/onc and found that the second opinion, i.e. my new gyn/onc had a much better handle on things for me.

My (new) gyn/onc said that uterine cancers of the UPSC, sarcoma and clear cell types are the hardest to get rid of. They are the most aggressive. I have been reading boards and such for a couple of years now regarding uterine cancers, and it looks to me like endometrioid adenocarcinoma can respond very well to treatment. But everyone's body and everyone's cancer is different so nobody can tell you how you will respond. You just don't know until you go through the chemo and radiation, how well you will do.

Have you talked to anybody about IP chemo? That is chemo that is given directly into the abdominal cavity rather than into the vein. You didn't mention radiation. Have they told you that you will get radiation following the chemo?

I wouldn't let this destroy myself emotionally just yet. And if it is endometrioid adenocarcinoma, I'm surprised that somebody told you 1-3 years before you have had any treatment. Just my layperson opinion.

And why are you getting chemo only 4 times? The usual protocol is 6 times. Are you in poor health?

Thank you for your comments.
Thank you for your comments. My health is real good except for the cancer. What is UPSC? I have been thinking about a second opinion, but the gyn/oncol I see is suppose to be the best at this, but I am still considering it, but don't know to see.

I also should have added that they did another Cat Scan Wed just of my chest, to get another look at my lungs and whatever. I was pushing for it, because I used to smoke heavy, but quit 26 years ago.

The seeding that I have is in my peritoneal, in the right upper quadrant of my abdomen, on the outside of my bowel, small intestine, and a couple of other places close by. I think the chemo doctor said with the seeding it is actually more difficult because they are little seeds spread out, and I don't think radiation would work for this. The 4 treatments is just their starting point, and they also talked about hormone blocking drugs they intend to try on me. On my first cat scan, all my organs were clean. But I was told that tumors have to be a certain size to show up on the cat scan, and I guess that is why the seeding didn't show.

snyderpm · December 2010

nempark said:
snyderpm
I was dx with stage 1a grade 3 endometrial in Oct, 2009. DaVinci in Nov. My first Gyn told me nonchalantly, "oh you have some cells, cancer cells in the endometrium, then she said just have a hyst, she rubbed her hands together and said 1,2,3 done over with no further treatment. My second opinion with sur/gyn/onc did further tests, said "total hyst, including the omentum and just to be on the safe side, 6 sessions of Carbo/Taxol. I am now one year in remission. I still have anxieties and I still cry because of all the things I have read on the internet. But it is comforting to know that there are people out there who have been told that they have 6 months to live and are continuing to live and enjoy their lives years later. I have a friend and this is first hand, who was told that she had 9 months to live she had leukemia, she refused to do chemo and did herbal that was 16 years ago. I have heard so many things about Chemo... the truth is I had my sessions and was not sick even one day, did not even lose my appetite. So each one of us will handle our situation differently. Who are they to predict how much time you have? They do not know. It's okay to feel sad and it's okay to cry. Cry, but you have to start thinking positive and gear yourself for recovery. Be careful with your husband, my husband got sick immediately after my dx,he is okay now. Please take care of yourself and I pray that you keep positive and enjoy each day of life. Hugs and comfort to you and your husband. J.

nempark
What is dx? My gyn/onc was sure I was good to go, after he took out everything, because I was such a low grade and stage, and I showed no other cancer in my pelvic area, everything tested negative. I guess he didn't think I needed the chemo. He also said that he didn't think the Carbo/Taxol would bother me much, and I could do whatever I wanted. You know once the cancer gets outside your pelvic area it is incurable. I just can't come to grips it. I will see the chemo doctor tues 28th for the cat scan and blood tests findings. Thank you for your kind words.

Lisa 00 · December 2010

snyderpm said:
Thank you for your comments.
Thank you for your comments. My health is real good except for the cancer. What is UPSC? I have been thinking about a second opinion, but the gyn/oncol I see is suppose to be the best at this, but I am still considering it, but don't know to see.

I also should have added that they did another Cat Scan Wed just of my chest, to get another look at my lungs and whatever. I was pushing for it, because I used to smoke heavy, but quit 26 years ago.

The seeding that I have is in my peritoneal, in the right upper quadrant of my abdomen, on the outside of my bowel, small intestine, and a couple of other places close by. I think the chemo doctor said with the seeding it is actually more difficult because they are little seeds spread out, and I don't think radiation would work for this. The 4 treatments is just their starting point, and they also talked about hormone blocking drugs they intend to try on me. On my first cat scan, all my organs were clean. But I was told that tumors have to be a certain size to show up on the cat scan, and I guess that is why the seeding didn't show.

You can call your health
You can call your health insurance company and ask them who are the other gyn/oncs in your area. You really should get a second opinion. It sounds like your gyn/onc is a little cavalier in his opinions regarding how to treat. A cautious doc would have given you the chemo the first time around. Also, everyone on this board and everywhere I look is prescribed 6 rounds of carbo/taxol to start.

snyderpm · December 2010

Lisa 00 said:
You can call your health
You can call your health insurance company and ask them who are the other gyn/oncs in your area. You really should get a second opinion. It sounds like your gyn/onc is a little cavalier in his opinions regarding how to treat. A cautious doc would have given you the chemo the first time around. Also, everyone on this board and everywhere I look is prescribed 6 rounds of carbo/taxol to start.

Lisa00
Yes, I am going to look into that. My gyno/onc said I would get 4-6 months of chemo, and the chemo doctor said he wants to see what happens with my CA125 and Cat Scan as we go along with the chemo. I really can't remember all the details, because they tell you so much, and I was so spaced out over everything, I am not really sure.

nempark · December 2010

snyderpm said:
nempark
What is dx? My gyn/onc was sure I was good to go, after he took out everything, because I was such a low grade and stage, and I showed no other cancer in my pelvic area, everything tested negative. I guess he didn't think I needed the chemo. He also said that he didn't think the Carbo/Taxol would bother me much, and I could do whatever I wanted. You know once the cancer gets outside your pelvic area it is incurable. I just can't come to grips it. I will see the chemo doctor tues 28th for the cat scan and blood tests findings. Thank you for your kind words.

Hi Snyder
Dx is the language we use now for diagnosed. Remember cancer cells are really minute and the scans don't always pick them up. Yes, my first gyn said that I did not need chemo, but the second Gyn was more aggressive and did prescribe it. Ask for copies of all your activities so that you will have them when you see another doctor. I know the waiting period is like a death sentence in itself, but what else can we do. We all on this board know exactly what you are going through, but as serious as it it and devasted as you are, you will see as you face your journey, you will begin to face and accept this dreaded situation and it gets better. Just a little warning before hand with Carbo/tax you will lose your hair, so prepare your self, that's another shock, the good thing is as soon as you've finished your treatments it start to grow back. My sister, illnesses is one of the cycles of life, if it dosn't happen now, it will happen later in life, at least you are still young and have a very supportive husband. Take a pen and a pad with you to the doc and write down everything because you will not remember. you will be in a fog. We on this board all understand. I just wish I can give you a big hug and squeese all that fear and illness out of you. Be positive, start your journey and tell yourself that you will conquer this. My sincere comfort comes your way. Please keep us informed about the progress. Love and comfort j.

Double Whammy · December 2010

snyderpm said:
nempark
What is dx? My gyn/onc was sure I was good to go, after he took out everything, because I was such a low grade and stage, and I showed no other cancer in my pelvic area, everything tested negative. I guess he didn't think I needed the chemo. He also said that he didn't think the Carbo/Taxol would bother me much, and I could do whatever I wanted. You know once the cancer gets outside your pelvic area it is incurable. I just can't come to grips it. I will see the chemo doctor tues 28th for the cat scan and blood tests findings. Thank you for your kind words.

Stage 1a, Grade 1
From everything I've read and been told, typically no adjuvant treatment is given for this low grade and stage, except follow-up pelvics, Paps, and sometimes CA125. There is a very small chance of recurrence, but obviously there is a chance. I'm so sorry to hear that you were in the small percentage of women who have a recurrence. There is a reason we have follow-ups and they're scarey no matter what our stage and grade.

I was Stage 1, Grade 1 and am only having regular 4-month follow ups. I worry (because that's what I do) if that's enough. A good friend got her dx a couple of months before me. She was Stage 1, also, but Grade 3 and the tumor had grown over 1/2 way through the wall of her uterus. She had chemo and internal rads. While we were both Stage 1, the grade of the cells and the amount of growth were factors in whether adjuvant treatments would be needed or not.

It's wonderful to be under the care of one of the best, but remember s/he is only ONE of the best - there's more than one. If you seek a second opinion, do your research, get advice from others (this is a great group), and try to see another one of the best.

BTW, it is possible that your doctor has consulted with a colleague (other than the tumor board) about you. We often forget that these people do talk to each other if their egos aren't too big!

Sending my prayers and best wishes your way. Please keep us posted about your decisions. We're all here to offer our support along your journey.

Suzanne

daisy366 · December 2010

Double Whammy said:
Stage 1a, Grade 1
From everything I've read and been told, typically no adjuvant treatment is given for this low grade and stage, except follow-up pelvics, Paps, and sometimes CA125. There is a very small chance of recurrence, but obviously there is a chance. I'm so sorry to hear that you were in the small percentage of women who have a recurrence. There is a reason we have follow-ups and they're scarey no matter what our stage and grade.

I was Stage 1, Grade 1 and am only having regular 4-month follow ups. I worry (because that's what I do) if that's enough. A good friend got her dx a couple of months before me. She was Stage 1, also, but Grade 3 and the tumor had grown over 1/2 way through the wall of her uterus. She had chemo and internal rads. While we were both Stage 1, the grade of the cells and the amount of growth were factors in whether adjuvant treatments would be needed or not.

It's wonderful to be under the care of one of the best, but remember s/he is only ONE of the best - there's more than one. If you seek a second opinion, do your research, get advice from others (this is a great group), and try to see another one of the best.

BTW, it is possible that your doctor has consulted with a colleague (other than the tumor board) about you. We often forget that these people do talk to each other if their egos aren't too big!

Sending my prayers and best wishes your way. Please keep us posted about your decisions. We're all here to offer our support along your journey.

Suzanne

snyderpm
I'm so sorry about this crisis and trauma you are going through!! Cancer is indeed scary and we have every right to every emotion that evokes.

I was diagnosed with upsc, uterine papillary serous carcinoma (a grade 3 rare and aggressive cancer) over 2 years ago. Like you, I was very healthy and had no risk factors!! I had the standard chemo treatment and then was in remission for about a year before getting treated for recurrence in my lymph system (I've had surgery, chemo and radiation).

I want to reassure you that you and I have many treatment options before someone can say we have "1-3 years" - and noone really knows these things anyway. It is unfortunate that you received that message. I remember my 2nd opinion doc telling me, "if chemo does not work, you'll be dead in a year!". I had lots of tears after hearing that one.

I've read many times here that "no one is a statistic". So let's both take that advice and do what nempark says - stay positive. It really helps for us to have hope and not doom and gloom thinking.

There is alot of anxiety as we WAIT for treatment and test results. I encourage you to LIVE each day and have fun and don't be just a cancer patient!!! I am waiting for my PET/CT results this week that will tell me if my treatment worked or not. So I ask for your prayers and I will pray for you too as we both continue on this path we are on.

God bless you. Enjoy a blessed holiday. Mary Ann

PS. In my opinion, the hair thing is the least of our problems. A couple of good things about it - it's easy care and people treat you very nice!!

Lisa 00 · December 2010

Snyderpm
Snyderpm,
MaryAnn is better than I at expressing her thoughts. She gave you some great advice. Stay positive, and I would disregard the 1-3 year statement. You will lose your hair with the chemo treatments, but I found that that was the most disturbing part of the chemo. There are 'cold caps' to help deter the hair loss on the head if you're interested in trying that. I waited until my hair started to come out, about 7 days after the first infusion, and I used hair clippers to clip it down to stubs. Then, over the next months, the stubs will even fall out.

Personally, having had endometrioid adenocarcinoma that was, most very likely in my lymph nodes, but undetectable on the CT scans, I think you have a good chance at beating it. I say that it was in my lymph nodes, not because I was surgically staged, because I wasn't, but because I had developed a bit of lymphedema in one leg a few years ago that has no other explanation.

So, stay positive, take care of yourself during the chemo and please don't let it get to you too much as you haven't even been through treatment yet! Chemo really isn't that debilitating. You will be able to still do a lot!

The infusion alone will take 5 hours, so you will be at the doc's for probably 6 hours. They didn't tell me that when I went for my first one and I didn't bring any food with me. Also, socks or slippers are nice to wear during the chemo. You will be getting up a lot during the infusion and going to the bathroom because of the volume of fluid that goes in. And the nurses will take good care of you. I have found that, while I am guarded when it comes to doctors, nurses are the best.

Let us know how you do!
Lisa

lociee · December 2010

Lisa 00 said:
Snyderpm
Snyderpm,
MaryAnn is better than I at expressing her thoughts. She gave you some great advice. Stay positive, and I would disregard the 1-3 year statement. You will lose your hair with the chemo treatments, but I found that that was the most disturbing part of the chemo. There are 'cold caps' to help deter the hair loss on the head if you're interested in trying that. I waited until my hair started to come out, about 7 days after the first infusion, and I used hair clippers to clip it down to stubs. Then, over the next months, the stubs will even fall out.

Personally, having had endometrioid adenocarcinoma that was, most very likely in my lymph nodes, but undetectable on the CT scans, I think you have a good chance at beating it. I say that it was in my lymph nodes, not because I was surgically staged, because I wasn't, but because I had developed a bit of lymphedema in one leg a few years ago that has no other explanation.

So, stay positive, take care of yourself during the chemo and please don't let it get to you too much as you haven't even been through treatment yet! Chemo really isn't that debilitating. You will be able to still do a lot!

The infusion alone will take 5 hours, so you will be at the doc's for probably 6 hours. They didn't tell me that when I went for my first one and I didn't bring any food with me. Also, socks or slippers are nice to wear during the chemo. You will be getting up a lot during the infusion and going to the bathroom because of the volume of fluid that goes in. And the nurses will take good care of you. I have found that, while I am guarded when it comes to doctors, nurses are the best.

Let us know how you do!
Lisa

from 1 to 4
Hi snyerpm, your diagnosis almost mirrors mine. Now 63, active (I also ride - or rode) overall very physical and health conscious. Then wham! I ended up with a total hysterectomy - they decided it was stage 1 and no further treatment was necessary. Then two years later I jumped to stage 4 metastatic - with a tumor along my colon and one on my lung- both metastatic uterine cancer. Everything rushed along after that. I refused surgery because they thought they might have to take my rectum along with the tumor. I had the 6 rounds of carbo/taxol - then a few rounds of doxil - numbers stopped responding and they said I'd be dead in 9 - 10 months unless I had radiation. With radiation they said I'd live a little longer. Well, that was a year and a half ago and I'm still here and nowhere near dying. I now find out that they don't really have a clue. It's basically all a mystery to them. Turns out there are a lot of mysteries out there - most of the women on this chat line have had several reoccurances and are still going strong. I work full-time, and although slower and tired, get around fairly well. My advice is to just take things slowly. One step at a time - sort of look before you leap and really understand each step. I think I was in a fog most of the time and was taken up with their rush. Do a little research - get some other opinions. The most significant thing I had was the first chemo - i felt better after chemo - achy - but in less tumor pain - which was lovely. As Lisa said, chemo nurses ar the BEST! Anyway, I remember how scary the whole thing was and feel for you.
xo, Mia

nancygt · December 2010

More hope
Like many of the women on here, I have stage 3, grade 3 papillary Serous, have had full surgery,chemo twice (not nearly as bad as I anticipated)and three different rounds of radiation-external wide area pelvis, brachytherapy and most recently IMRT (amazing and relatively new technology worth reading up on).I had 1st recurrence 6 months after end of radiation/chemo sandwich and then second recurrence 4 months after clean PET scan following IMRT radiation therapy.
First, doctors rely on statistics that are out of date based on new treatments. We must be very cautious with USPC as it was only sepasrately diagnosed 30 years ago, statistical base is small and early treatment did not recognize its agreesive nature and ability to recur. Even the Amer. Cancer society book tells us that USPC accounts for less than 55 of cases bot is responsible for most ofn the deaths.
I had second opinion at M.D. Anderson when i saw those statistics and was freaked out because I had my first recurrence. All the doctors were frank that once it recurs, it will not be cured but is treatable. They have had patients where stats say life expectancy should be 2 years but many patients now alive after 8.10,12 years- not without recurrences and treatment but still with quality of life.I also read the Ovarian websites as my oncologist tells me that UPSC patients are so much more similar to that cancer than most uterine cancer-and you will find many ladies there with multiple recurrences who fully understand "chronic but treatable". I wish I could find the article from Cure magazine last year where they write about coping with chronic cancer - I sent it to my friends and family and apparently did not keep a copy for myself.They say that many cancers that were labelled terminal are now labelled "chronic" and an entire new attitude and support system is being created so patients don't overreact (and maybe doctors need to understand this better) and can accept that we will live longer than backward looking statistical estimates, that we can still have joy in our lives and will have good stretches and bad stretches where cancer will impact our remaining life but doesn't have to rule it.
just recently in September my dear friend who has stage 4 lung cancer and my other good "healthy" friends had dinner to celebrate my birthday. My cancer buddy and I know we are unlikely to get normal life expectancy for U.S. female (80 years old). So every six months-her birthday is in March- we will celebrate what we have named as SPLEAB- Shortened Projected Life Expectancy Additional Birthday (I am 61 and she is 56).So with doubling up annually with 2 birthdays,if I get the 8 years my oncologist feels is entirely possible, I will celebrate my 80th SPLEAB birthday in 9 years and promised to take every one at that dinner to Las Vegas to celebrate.(And if I have to pay for that trip, I will be the happiest person on the face of the earth). I know that may seem like a small -and perhaps somewhat silly- ritual but it is one of the ways you find to live a full life in spite of this ugly disease.And even if I am fairly certain it is the cancer that will eventually get me (not likely it will be getting hit by a bus like many well intentioned people point out), I don't know when (just read about all the people still making it despite dire predictions and statistics)and I intend to cram as much living in to what ever time I do have.I start 8 rounds of two drug chemo the beginning of January for the latest recurrence and while, I do not look forward to it, I am glad there are still drugs to try and glad for all the good practical advice I get on this website (fur lined crocs,etc) and for all the inspiration from the battle scar5red but still hopeful survivors.

snyderpm · December 2010

nancygt said:
More hope
Like many of the women on here, I have stage 3, grade 3 papillary Serous, have had full surgery,chemo twice (not nearly as bad as I anticipated)and three different rounds of radiation-external wide area pelvis, brachytherapy and most recently IMRT (amazing and relatively new technology worth reading up on).I had 1st recurrence 6 months after end of radiation/chemo sandwich and then second recurrence 4 months after clean PET scan following IMRT radiation therapy.
First, doctors rely on statistics that are out of date based on new treatments. We must be very cautious with USPC as it was only sepasrately diagnosed 30 years ago, statistical base is small and early treatment did not recognize its agreesive nature and ability to recur. Even the Amer. Cancer society book tells us that USPC accounts for less than 55 of cases bot is responsible for most ofn the deaths.
I had second opinion at M.D. Anderson when i saw those statistics and was freaked out because I had my first recurrence. All the doctors were frank that once it recurs, it will not be cured but is treatable. They have had patients where stats say life expectancy should be 2 years but many patients now alive after 8.10,12 years- not without recurrences and treatment but still with quality of life.I also read the Ovarian websites as my oncologist tells me that UPSC patients are so much more similar to that cancer than most uterine cancer-and you will find many ladies there with multiple recurrences who fully understand "chronic but treatable". I wish I could find the article from Cure magazine last year where they write about coping with chronic cancer - I sent it to my friends and family and apparently did not keep a copy for myself.They say that many cancers that were labelled terminal are now labelled "chronic" and an entire new attitude and support system is being created so patients don't overreact (and maybe doctors need to understand this better) and can accept that we will live longer than backward looking statistical estimates, that we can still have joy in our lives and will have good stretches and bad stretches where cancer will impact our remaining life but doesn't have to rule it.
just recently in September my dear friend who has stage 4 lung cancer and my other good "healthy" friends had dinner to celebrate my birthday. My cancer buddy and I know we are unlikely to get normal life expectancy for U.S. female (80 years old). So every six months-her birthday is in March- we will celebrate what we have named as SPLEAB- Shortened Projected Life Expectancy Additional Birthday (I am 61 and she is 56).So with doubling up annually with 2 birthdays,if I get the 8 years my oncologist feels is entirely possible, I will celebrate my 80th SPLEAB birthday in 9 years and promised to take every one at that dinner to Las Vegas to celebrate.(And if I have to pay for that trip, I will be the happiest person on the face of the earth). I know that may seem like a small -and perhaps somewhat silly- ritual but it is one of the ways you find to live a full life in spite of this ugly disease.And even if I am fairly certain it is the cancer that will eventually get me (not likely it will be getting hit by a bus like many well intentioned people point out), I don't know when (just read about all the people still making it despite dire predictions and statistics)and I intend to cram as much living in to what ever time I do have.I start 8 rounds of two drug chemo the beginning of January for the latest recurrence and while, I do not look forward to it, I am glad there are still drugs to try and glad for all the good practical advice I get on this website (fur lined crocs,etc) and for all the inspiration from the battle scar5red but still hopeful survivors.

more hope
I thank you and everyone else who has written to me, and the last few days have been the best days I have had since early November, because of all of you. I barely shed a tear the last few days. Please tell me what exactly does UPSC stand for. The chemo doctor really rocked me back when he said if I had this cancer in my lungs he would give me, at most, 1 year. The only tumor I have had since the matastatis was in my Omentum that was taken out. The rest of the cancer is seeding, and I believe they scraped all that they saw off the various locations. The chemo doctor said it is actually more difficult to deal with than a tumor. I don't really get it, but I was in a fog by the time we got to that part. I got another Cat Scan last week of just my chest area, and I go back to the chemo doctor Tues 28th for another consult, and then start chemo. Most of the people on the discussion board started off with much more cancer than I did, so it is so shocking that I ended up with so much more cancer in really about 6 months.

kansasgal · December 2010

snyderpm said:
more hope
I thank you and everyone else who has written to me, and the last few days have been the best days I have had since early November, because of all of you. I barely shed a tear the last few days. Please tell me what exactly does UPSC stand for. The chemo doctor really rocked me back when he said if I had this cancer in my lungs he would give me, at most, 1 year. The only tumor I have had since the matastatis was in my Omentum that was taken out. The rest of the cancer is seeding, and I believe they scraped all that they saw off the various locations. The chemo doctor said it is actually more difficult to deal with than a tumor. I don't really get it, but I was in a fog by the time we got to that part. I got another Cat Scan last week of just my chest area, and I go back to the chemo doctor Tues 28th for another consult, and then start chemo. Most of the people on the discussion board started off with much more cancer than I did, so it is so shocking that I ended up with so much more cancer in really about 6 months.

UPSC
UPSC is a grade 3 cancer with the full name of Uterine Papillary Serous Carcinoma.
It is a very aggressive and highly recurrent type of endometrial cancer.

Have the slides from your hysterectomy been reviewed again to see if perhaps there is an additional cancer to the original grade 1 cancer identified, or is your cancer still being identified as just the grade 1 cancer? You might ask your chemo doctor for his/her opinion of the grade at your next visit.

Hang in there and find out all you can. Make a list of questions before you go, and take someone with you to make notes of all that is said. Give that person the list of questions and be sure all your questions are addressed. My husband and I attended meetings with various doctors together, but we also took our daughter to act as our "scribe". She was able to be more objective while our minds and emotions were reeling.

Super big hugs from Sally

daisy366 · December 2010

kansasgal said:
UPSC
UPSC is a grade 3 cancer with the full name of Uterine Papillary Serous Carcinoma.
It is a very aggressive and highly recurrent type of endometrial cancer.

Have the slides from your hysterectomy been reviewed again to see if perhaps there is an additional cancer to the original grade 1 cancer identified, or is your cancer still being identified as just the grade 1 cancer? You might ask your chemo doctor for his/her opinion of the grade at your next visit.

Hang in there and find out all you can. Make a list of questions before you go, and take someone with you to make notes of all that is said. Give that person the list of questions and be sure all your questions are addressed. My husband and I attended meetings with various doctors together, but we also took our daughter to act as our "scribe". She was able to be more objective while our minds and emotions were reeling.

Super big hugs from Sally

Nancy
I like your thinking and rituals. It sounds like you and your friend are making the best of this whole situation - with joy and gratitude.

Mary Ann

Double Whammy · December 2010

daisy366 said:
Nancy
I like your thinking and rituals. It sounds like you and your friend are making the best of this whole situation - with joy and gratitude.

Mary Ann

Jogging?
Snyderpm - I forgot to mention that I'm so impressed that you jog at 66. I used to jog even in my early 50's (back in the day . . .). At age 63, I can't even imagine starting again. Now I walk. Maybe your healthy lifestyle and low risk factors did not prevent you from developing cancer, but you are physically fit for whatever they throw at you. I think being as physically fit as we're able to achieve can only help us endure treatments and effect our recovery (this is my opinion, not based on any medical knowledge).

Suzanne

jazzy1 · December 2010

Double Whammy said:
Jogging?
Snyderpm - I forgot to mention that I'm so impressed that you jog at 66. I used to jog even in my early 50's (back in the day . . .). At age 63, I can't even imagine starting again. Now I walk. Maybe your healthy lifestyle and low risk factors did not prevent you from developing cancer, but you are physically fit for whatever they throw at you. I think being as physically fit as we're able to achieve can only help us endure treatments and effect our recovery (this is my opinion, not based on any medical knowledge).

Suzanne

Snyderpm
Sorry TO hear about your cancer, but know you've come to a great place for support. These gals on here have been my life line for months.

I'd like to comment about statistics...don't follow them. Many of them aren't updated,and docs try to follow but not very accurate. When my doc wanted to tell me the statistics on my stage 3 cancer, I plugged up my ears as didn't want to hear.

Know that many people are told they've got a short period of time to live, and many years later still a walking miracle. I can list on both hands people who were in this situation and some with a stage 4 cancer.

As my oncolgolist has posted on his office wall ---

YOU ARE A STATISTIC OF ONE......

Best to you and keep smiling as life does get better.....
Jan

nancygt · December 2010

snyderpm said:
more hope
I thank you and everyone else who has written to me, and the last few days have been the best days I have had since early November, because of all of you. I barely shed a tear the last few days. Please tell me what exactly does UPSC stand for. The chemo doctor really rocked me back when he said if I had this cancer in my lungs he would give me, at most, 1 year. The only tumor I have had since the matastatis was in my Omentum that was taken out. The rest of the cancer is seeding, and I believe they scraped all that they saw off the various locations. The chemo doctor said it is actually more difficult to deal with than a tumor. I don't really get it, but I was in a fog by the time we got to that part. I got another Cat Scan last week of just my chest area, and I go back to the chemo doctor Tues 28th for another consult, and then start chemo. Most of the people on the discussion board started off with much more cancer than I did, so it is so shocking that I ended up with so much more cancer in really about 6 months.

USPC cells
I would like to second the message from kansasgal about double checking the pathology. With USPC (Typically grade 3) it was only separately diagnosed around 1980 and a lot of early mistakes were made in both diagnosis and treatment and it is still an evolving picture.. Since i am an admitted "info junkie", I read gynological oncology journals,etc. Now they are saying if you have only 10-20% USPC cells. the cancer will behave like grade 3 USPC and should be treated as such. My doc at M.D. Anderson confirmed this to me. If 80% are grade 1 and a small % are grade 3, the pathology report can be unclear and the doctor should discuss with you why a grade 1 cancer is behaving so aggressively.
Also if you have recent tissue or cells, you sgould consier tissue assay as it can shed light on which chemo therapies may be most effective.
And I would certainly ask why he said that about your lungs-my friend I mentioned was diagnosed with Stage 4 Squamous Cell Lung Cancer 5 years and they have told her she would not make it another year at least 4 times.They could never remove her biggest tumor (it had eaten away part of her breastbone) and she has had surgery, radiation several times, plenty of chemo and she is still hanging in there.We went on a Carribean cruise with 2 other friends in the spring between treatments and while we strolled a little slower for her sake, we had a blast. Do not hesitate to get second opinions - I went to MD Anderson ande while they confirmed diagnosis and original treatment plan, I ended up changing gynoncologist locally over how he handled their recommendations for future treatments (and feel much better about the new dcotor). It is your life and you should feel free to ask questions, fully participate in decisions and ocasionally be "humored" (my new doc did not think I was HER2/Neu positive but he performed the test anyway so I would know if Herceptin was a possibility and I could start dealing with what that might cost if we ever got there - I was not positive but it was good information for me to have.)

lindaprocopio · December 2010

nancygt said:
USPC cells
I would like to second the message from kansasgal about double checking the pathology. With USPC (Typically grade 3) it was only separately diagnosed around 1980 and a lot of early mistakes were made in both diagnosis and treatment and it is still an evolving picture.. Since i am an admitted "info junkie", I read gynological oncology journals,etc. Now they are saying if you have only 10-20% USPC cells. the cancer will behave like grade 3 USPC and should be treated as such. My doc at M.D. Anderson confirmed this to me. If 80% are grade 1 and a small % are grade 3, the pathology report can be unclear and the doctor should discuss with you why a grade 1 cancer is behaving so aggressively.
Also if you have recent tissue or cells, you sgould consier tissue assay as it can shed light on which chemo therapies may be most effective.
And I would certainly ask why he said that about your lungs-my friend I mentioned was diagnosed with Stage 4 Squamous Cell Lung Cancer 5 years and they have told her she would not make it another year at least 4 times.They could never remove her biggest tumor (it had eaten away part of her breastbone) and she has had surgery, radiation several times, plenty of chemo and she is still hanging in there.We went on a Carribean cruise with 2 other friends in the spring between treatments and while we strolled a little slower for her sake, we had a blast. Do not hesitate to get second opinions - I went to MD Anderson ande while they confirmed diagnosis and original treatment plan, I ended up changing gynoncologist locally over how he handled their recommendations for future treatments (and feel much better about the new dcotor). It is your life and you should feel free to ask questions, fully participate in decisions and ocasionally be "humored" (my new doc did not think I was HER2/Neu positive but he performed the test anyway so I would know if Herceptin was a possibility and I could start dealing with what that might cost if we ever got there - I was not positive but it was good information for me to have.)

((((hugs)))) & a few comments on your surgery & diagnosis
I'm sorry that you have had a recurrence so quickly after your surgery. I was surprised that your surgeon did not remove your omentum (sp?) at the time of your hysterectomy, as that is usually removed during "optimal debulking" surgery when cancer is suspected because it is such a common place for cancer to travel to.

Do you know how many lymoh nodes were removed during your hysterectome? If only a handful of lymph nodes are removed and biopsied, it is easy to get an incorrect Stage 1 or Stage 2 diagnosis (as a another lymph node with cancer cells in it could have been left behind.) .

After I healed from my surgery in late 2008, I did 6 rounds of adjuvant chemo ("adjuvant" refers to treatments done as INSURANCE to try and kill any microscopic cancer cells that are too small to be picked up on scans); and 28 rounds of adjuvant pelvis radiation; and 3 rounds of internal radiation. My oncologist wanted me to do everything in my power to make sure i would not recur, because once your cancer recurs they consider it incurable.

Even with all that adjuvant treatment, my cancer recurred in November 2009. I read all the horrible statistics online, stuff like "Once endometrial cancer recurs, average life expectancy is 12 months regradless of treatment." Well, my 'expiration date' has come and gone and I'm still here! And I am symptom-free, even though I take a mild dose of chemo regularly to keep my cancer in check. I have no pain; I never throw up; I still advise in my own business and have sleep-overs with my grandkids. Today I went out to lunch and some 'after Christmas' shopping with a girlfriend. Wednesday I get chemo again. Then I have a trip to the Dominican Republic planned with my son in February; (and I've been to Europe and the Caribbean, & the beach twice....all while in treatment!) I guess what I'm trying to tell you is; THIS IS DO-ABLE! Life is still good, still beautiful, even after a recurrence and even when it gets interrupted by chemo. Don't believe the statistics. & if your oncologist continues negative statements, find a new gynecologic oncologist. ((((hugs)))))

snyderpm · December 2010

nancygt said:
USPC cells
I would like to second the message from kansasgal about double checking the pathology. With USPC (Typically grade 3) it was only separately diagnosed around 1980 and a lot of early mistakes were made in both diagnosis and treatment and it is still an evolving picture.. Since i am an admitted "info junkie", I read gynological oncology journals,etc. Now they are saying if you have only 10-20% USPC cells. the cancer will behave like grade 3 USPC and should be treated as such. My doc at M.D. Anderson confirmed this to me. If 80% are grade 1 and a small % are grade 3, the pathology report can be unclear and the doctor should discuss with you why a grade 1 cancer is behaving so aggressively.
Also if you have recent tissue or cells, you sgould consier tissue assay as it can shed light on which chemo therapies may be most effective.
And I would certainly ask why he said that about your lungs-my friend I mentioned was diagnosed with Stage 4 Squamous Cell Lung Cancer 5 years and they have told her she would not make it another year at least 4 times.They could never remove her biggest tumor (it had eaten away part of her breastbone) and she has had surgery, radiation several times, plenty of chemo and she is still hanging in there.We went on a Carribean cruise with 2 other friends in the spring between treatments and while we strolled a little slower for her sake, we had a blast. Do not hesitate to get second opinions - I went to MD Anderson ande while they confirmed diagnosis and original treatment plan, I ended up changing gynoncologist locally over how he handled their recommendations for future treatments (and feel much better about the new dcotor). It is your life and you should feel free to ask questions, fully participate in decisions and ocasionally be "humored" (my new doc did not think I was HER2/Neu positive but he performed the test anyway so I would know if Herceptin was a possibility and I could start dealing with what that might cost if we ever got there - I was not positive but it was good information for me to have.)

USPC cells
I am glad you mentioned that, because I was wondering the same, but no one has covered that effectively. Originally, and even now, the Pathologist list my cancer as Adenocarcinoma. In my January 2010 report stated" Tumor Type as Endomertiod Adenocarcinoma of Endometrium. Tumor size: No gross tumor identified, but microscopic tumor involves much of the endometrial surface. Grade 1, and 1mm of invasion. Get a ruler and look a 1mm, not a whole lot. The stage was 1a, the lowest with cancer involved.

If you look at the Pathology report as of 11/22/10, one day after my exploratory Laporodamy, I have Metastatic Adenocarcinoma present in seven places in my abdominal cavity, with a tumor in my Omentum, that they removed. So they are no upgrading the type of cancer I have, but my prognosis is poor. I feel like, am I a fool, does anyone know what they are talking about?

snyderpm · December 2010

lindaprocopio said:
((((hugs)))) & a few comments on your surgery & diagnosis
I'm sorry that you have had a recurrence so quickly after your surgery. I was surprised that your surgeon did not remove your omentum (sp?) at the time of your hysterectomy, as that is usually removed during "optimal debulking" surgery when cancer is suspected because it is such a common place for cancer to travel to.

Do you know how many lymoh nodes were removed during your hysterectome? If only a handful of lymph nodes are removed and biopsied, it is easy to get an incorrect Stage 1 or Stage 2 diagnosis (as a another lymph node with cancer cells in it could have been left behind.) .

After I healed from my surgery in late 2008, I did 6 rounds of adjuvant chemo ("adjuvant" refers to treatments done as INSURANCE to try and kill any microscopic cancer cells that are too small to be picked up on scans); and 28 rounds of adjuvant pelvis radiation; and 3 rounds of internal radiation. My oncologist wanted me to do everything in my power to make sure i would not recur, because once your cancer recurs they consider it incurable.

Even with all that adjuvant treatment, my cancer recurred in November 2009. I read all the horrible statistics online, stuff like "Once endometrial cancer recurs, average life expectancy is 12 months regradless of treatment." Well, my 'expiration date' has come and gone and I'm still here! And I am symptom-free, even though I take a mild dose of chemo regularly to keep my cancer in check. I have no pain; I never throw up; I still advise in my own business and have sleep-overs with my grandkids. Today I went out to lunch and some 'after Christmas' shopping with a girlfriend. Wednesday I get chemo again. Then I have a trip to the Dominican Republic planned with my son in February; (and I've been to Europe and the Caribbean, & the beach twice....all while in treatment!) I guess what I'm trying to tell you is; THIS IS DO-ABLE! Life is still good, still beautiful, even after a recurrence and even when it gets interrupted by chemo. Don't believe the statistics. & if your oncologist continues negative statements, find a new gynecologic oncologist. ((((hugs)))))

Lindaprocopio
They removed everything, including several biopsies of lymph nodes and pelvic wash. Everything, except my uterus was negative. I was such a low grade and stage, that chemo was not advised. The follow-up for my type of endometrial cancer is no chemo and testing every 3 months with pap smear and blood test. This is the standard. I almost wonder did they mix up the biopsies? I go to the chemo doctor tomorrow for another consult, since my second Cat Scan, and before they start chemo. I am going to ask him to explain my situation more clearly, as the last consult, I was in a far away place, of denial.

Metastatic endometrial cancer

Comments

Discussion Boards