This Posting Board
I was very disappointed and quite shocked when I read the post on Sunday that was titled "Chemotherapy does not Work". Especially since the very next day I was going in again for my last treatment and gearing up for a full week of feeling lousy. It sounds to me that she is very angry that her mom passed away, as I would be too, and maybe their wasn't a complete understanding of Stage 4.
I even went as far as to talk to both the Social worker that visits me during chemo and my doctor that visits about this post and they were able to add their perspective to it. Also, my CA 125 level yesterday was 7.
I have some questions and if any of you are able to answer that would be great.
1. If you have a recurrence and the cancer comes back somewhere else do they consider that Stage 4?
2. Is there anyone out there that is at least 2-3 years from their diagnosis that has not shown any new signs of cancer?
3. Is anyone out there doing anything extra for treatment and if so what is it?
Thank you in advance. I am finding this board to be a great resource.
Comments
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WELCOME! I can help with a couple of your questions.
Welcome! I just want to reassure you first that many of the scarier posts here relate to those of us with UPSC (Uterine Papillary Serous Carcinoma), which is a Grade 3 cancer that is more aggressive and recurrant than most uterine / endometrial cancers. So, unless your cancer is a GRADE 3 type (and that is important to know), your Stage 3-c diagnosis may have a better statistical prognosis that my Stage 3 cancer with a Grade 3. So please don't let anything we post for UPSC cause you unnecessary worry. We all have ENOUGH to worry about, right?!
You ask about recurrance and if you are 'upgraded' to a Stage 4. I don't know. It seems like you would be, but I am really not sure. I know that if your cancer travels to your lungs or liver, or anywhere else, they will always call it endometrial cancer wherever it is and the cancer type stays the same.
The happy news I can share is that we have had several long-time survivors post (3 years, 5 years, 7 years) who NEVER had a recurrance, following their initial treatment protocol! Even with Stage 3, Grade 3 cancers!! People DO get cured! I think the statistic is 60%, even with Stage 3, Grade 3 at diagnosis. So you have every reason to be hopeful.
We have some people posting here that are doing alternative/augmentive treatments, but I am not one of them. I do what my oncologists tell me to do.0 -
A little more info
As for my cancer it is Endometrial Adenocarcinoma. I was diagnosed with Stage IIIC with one node testing positive. I do think I will start going to Acupuncture this week. I have done acupuncture in the past for other reasons and I find it very relaxing.
Later this week I meet with my OBGYN Oncologist and I need to start writing down some questions for him just so I don't forget during my visit.
Sometimes when I read these posts I feel like my situation is a little different, most of you are about 15-20 years older than me with older children. I have a 4 and a 5 year old that keep me very busy through the day, which is both good and bad. To them, I am not sick. They are very use to my head scarfs and occasionally ask when I will have hair again. But with kids this age I get very little time to myself. The time I do get is when I get ready to go to bed and that is when my mind starts racing with questions, fears, etc.
Again, I do find this site to be very helpful and encouraging.
Thank you to all that have offered kind words. It is very much needed.0 -
I'm not *quite as young asnpl8261 said:A little more info
As for my cancer it is Endometrial Adenocarcinoma. I was diagnosed with Stage IIIC with one node testing positive. I do think I will start going to Acupuncture this week. I have done acupuncture in the past for other reasons and I find it very relaxing.
Later this week I meet with my OBGYN Oncologist and I need to start writing down some questions for him just so I don't forget during my visit.
Sometimes when I read these posts I feel like my situation is a little different, most of you are about 15-20 years older than me with older children. I have a 4 and a 5 year old that keep me very busy through the day, which is both good and bad. To them, I am not sick. They are very use to my head scarfs and occasionally ask when I will have hair again. But with kids this age I get very little time to myself. The time I do get is when I get ready to go to bed and that is when my mind starts racing with questions, fears, etc.
Again, I do find this site to be very helpful and encouraging.
Thank you to all that have offered kind words. It is very much needed.
I'm not *quite as young as you are - I was diagnosed at 46. My youngest was 7 at the time (I also have a teenager, which brings a different set of distractions lol).
I found that my little guy really did keep me distracted during the day. W/out his knowing he really helped me find my "normal" every day. Even if I was tired, our routine really helped me to push through it - and I really liked that - to feel normal, doing normal things. The cancer diagnosis was not really going to change me in every way and there were parts of my life that were exactly like before.
Like you, I was a little rattled by the poster who had lost her mother. I want to think that my treatments have worked for me. I want to live in that place and for the time being, I have no reason to believe otherwise. I want to live that way until my doctors tell me otherwise.
She must be in a lot of pain over the loss of her mother. I can understand that. Her post may not have been the best for some of us who are in the midst of the battle (or any point for that matter) but I understand she's in a very vulnerable place right now.
I have found so many helpful, knowledgeable, inspirational people here. I believe that in more cases than not chemo helps. It helps to cure, it helps to add longevity, it does help.
-Kat0 -
Congrats on finishing chemonpl8261 said:A little more info
As for my cancer it is Endometrial Adenocarcinoma. I was diagnosed with Stage IIIC with one node testing positive. I do think I will start going to Acupuncture this week. I have done acupuncture in the past for other reasons and I find it very relaxing.
Later this week I meet with my OBGYN Oncologist and I need to start writing down some questions for him just so I don't forget during my visit.
Sometimes when I read these posts I feel like my situation is a little different, most of you are about 15-20 years older than me with older children. I have a 4 and a 5 year old that keep me very busy through the day, which is both good and bad. To them, I am not sick. They are very use to my head scarfs and occasionally ask when I will have hair again. But with kids this age I get very little time to myself. The time I do get is when I get ready to go to bed and that is when my mind starts racing with questions, fears, etc.
Again, I do find this site to be very helpful and encouraging.
Thank you to all that have offered kind words. It is very much needed.
You are more than half way there. Most likely radiation will be easier. My cancer is also endometrial adenocarcinoma Stage 111C. All nodes were negative, but posterior vagina tested positive. Hence the Stage 111C.
It sounds like acupuncture has worked well in the past and I am sure it will again. You may find a oncologist therapist helpful. Here in Colorado they are part of the Cancer Center team. Also part of the team are dieticians. Just had an appt. today. I have finished chemo and I'm into my 2nd week of radiation. Because of possible GI side effects I wanted to know all about low fiber diet.
What I found helpful with my Drs' appts was to bring a digital tape recorder. They cost $25 and up. Got mine at Staples for $30. After my Dr's visit I come home and review the tape and write everything down. You would not believe all that I missed from the conversation. I tell them that I am going to record the conversation and find they may even go into more detail when it is recorded.
I wonder if you are going to have a CT scan or Pet Scan between chemo and radiation like some of us had. On a good note, I just received my Pet Scan/CT scan results and they were wonderful. Nothing is lighting up (showing any abnormal metabolic activity) and the enlarged periaortic lymph node is not seen. The lung nodule is unchanged and still is not lighting up.
Keep up the good work and think positive.
Debbie from Colorado0 -
DeblittletonDeblittleton said:Congrats on finishing chemo
You are more than half way there. Most likely radiation will be easier. My cancer is also endometrial adenocarcinoma Stage 111C. All nodes were negative, but posterior vagina tested positive. Hence the Stage 111C.
It sounds like acupuncture has worked well in the past and I am sure it will again. You may find a oncologist therapist helpful. Here in Colorado they are part of the Cancer Center team. Also part of the team are dieticians. Just had an appt. today. I have finished chemo and I'm into my 2nd week of radiation. Because of possible GI side effects I wanted to know all about low fiber diet.
What I found helpful with my Drs' appts was to bring a digital tape recorder. They cost $25 and up. Got mine at Staples for $30. After my Dr's visit I come home and review the tape and write everything down. You would not believe all that I missed from the conversation. I tell them that I am going to record the conversation and find they may even go into more detail when it is recorded.
I wonder if you are going to have a CT scan or Pet Scan between chemo and radiation like some of us had. On a good note, I just received my Pet Scan/CT scan results and they were wonderful. Nothing is lighting up (showing any abnormal metabolic activity) and the enlarged periaortic lymph node is not seen. The lung nodule is unchanged and still is not lighting up.
Keep up the good work and think positive.
Debbie from Colorado
Congratulations on the great scan results!0 -
Thanksdeanna14 said:Deblittleton
Congratulations on the great scan results!
Deanna, you are in my thoughts and prayers as you wait for your results. Glad you are keeping busy and have such a positive attitude. Enjoy Florida.0 -
In 2002 at the age of 53 I was diagnosed with endometrial cancer, very early stage and did no further treatment after my hysterectomy and then staging surgery. The cancer was discovered with the hysterectomy so I had to have an exploratory laparotomy 7 wks later which showed no CA in the blood or lymph nodes. No further treatment was recommended just the normal followup every three months for a year and then every 6 months for the next 4 yrs. Two months short of the 5 yr. mark I had a reoccurrance. Pretty scary to go almost 5 yrs. and then have it show up again. It was a tumor wrapped around my transverse colon. I was fortunate to only lose 6 inches of colon with the surgery and not have a colostomy. My onc. told me it was not staged at this point and the official diagnosis is Recurrant endometrial cancer. Sounds strange to me but he is the head of Gyn. oncology at Siteman Cancer Center in St. Louis, MO. so I would think he knows what he is talking about. This time I did the 6 rounds of Carbo/Taxol chemo, no radiation. It will be 2 yrs. since my 2nd diagnosis on Aug. 30 and so far I have been NED. My CA 125 has been 11 for the last 2 yrs. I return for my next 3 month checkup on Aug. 26. I'm always scared. On April 30 I had my Port removed so feel that my Dr. felt fairly confident it was OK to remove it at this point. He originally told me he wanted me to keep it for 2 yrs. but would reconsider after one yr. depending on how I was doing. I was soooo glad to get rid of that thing. It gagged me to look at it or heaven forbid touch it! Needless to say I'm very needle squeamish but of course have bad tiny squiggly veins! I'm sure not having it for chemo would have been torture since every time I get an IV it takes them at least 3 tries. I have never done any other alternative treatments. I too was really appalled by the Chemotherapy doesn't work posting. I hope I have given you some insight concerning your questions and not scared you too much with my 5 yr. reoccurrance. I've heard from Drs. that speak at the support group I attend that a lot of cancers have become considered a chronic disease instead of a cure. We all hope we're in the "cure" group. Some of the ladies in the group have been cancer free for more than 10 yrs. 14 for one. Hearing that is very hopeful. Hang in there and I wish you the best and yrs. of NED!
Terry0 -
Thanks Terrytbsjewels said:In 2002 at the age of 53 I was diagnosed with endometrial cancer, very early stage and did no further treatment after my hysterectomy and then staging surgery. The cancer was discovered with the hysterectomy so I had to have an exploratory laparotomy 7 wks later which showed no CA in the blood or lymph nodes. No further treatment was recommended just the normal followup every three months for a year and then every 6 months for the next 4 yrs. Two months short of the 5 yr. mark I had a reoccurrance. Pretty scary to go almost 5 yrs. and then have it show up again. It was a tumor wrapped around my transverse colon. I was fortunate to only lose 6 inches of colon with the surgery and not have a colostomy. My onc. told me it was not staged at this point and the official diagnosis is Recurrant endometrial cancer. Sounds strange to me but he is the head of Gyn. oncology at Siteman Cancer Center in St. Louis, MO. so I would think he knows what he is talking about. This time I did the 6 rounds of Carbo/Taxol chemo, no radiation. It will be 2 yrs. since my 2nd diagnosis on Aug. 30 and so far I have been NED. My CA 125 has been 11 for the last 2 yrs. I return for my next 3 month checkup on Aug. 26. I'm always scared. On April 30 I had my Port removed so feel that my Dr. felt fairly confident it was OK to remove it at this point. He originally told me he wanted me to keep it for 2 yrs. but would reconsider after one yr. depending on how I was doing. I was soooo glad to get rid of that thing. It gagged me to look at it or heaven forbid touch it! Needless to say I'm very needle squeamish but of course have bad tiny squiggly veins! I'm sure not having it for chemo would have been torture since every time I get an IV it takes them at least 3 tries. I have never done any other alternative treatments. I too was really appalled by the Chemotherapy doesn't work posting. I hope I have given you some insight concerning your questions and not scared you too much with my 5 yr. reoccurrance. I've heard from Drs. that speak at the support group I attend that a lot of cancers have become considered a chronic disease instead of a cure. We all hope we're in the "cure" group. Some of the ladies in the group have been cancer free for more than 10 yrs. 14 for one. Hearing that is very hopeful. Hang in there and I wish you the best and yrs. of NED!
Terry
Thank you for giving us some HOPE that recurrence isn't a death sentence.
Did you have papillary serous carcinoma? That is what I have and at first I was told that it would be in the "chronic disease" category. I want it to be otherwise and I have been NED for several months. So I am keeping my fingers crossed and continue to practice yoga, meditation, exercise and a pretty decent diet (I must admit I eat too much chocolate!!!).
I am planning on keeping my port for awhile. Don't want to be pessimistic. The port that you just had out - was that from 2007?
I didn't get too freaked out about the post you mentioned. There is all kinds of info out there. I think we need to stick with the doctors we trust and evidence-based research.
God Bless, Mary Ann0 -
Ports suckdaisy366 said:Thanks Terry
Thank you for giving us some HOPE that recurrence isn't a death sentence.
Did you have papillary serous carcinoma? That is what I have and at first I was told that it would be in the "chronic disease" category. I want it to be otherwise and I have been NED for several months. So I am keeping my fingers crossed and continue to practice yoga, meditation, exercise and a pretty decent diet (I must admit I eat too much chocolate!!!).
I am planning on keeping my port for awhile. Don't want to be pessimistic. The port that you just had out - was that from 2007?
I didn't get too freaked out about the post you mentioned. There is all kinds of info out there. I think we need to stick with the doctors we trust and evidence-based research.
God Bless, Mary Ann
Hi, Mary Ann. No, my cancer was not UPSC. I never really got an official diagnosis the first time. I was just so glad that it was gone and considered it over and done with. I don't like to hear statistics and diagnosis stuff. I was REALLY surprised when I had the reoccurrance as was my Dr.
Yes, the port was from 2007. I thought long and hard about having it removed even when my Dr. said it could go. I always thought I'd rather have it and not need it than have to have it put back in. I have (had) a friend who worked for an oncologist about 6-7 years ago and she couldn't see any reason why he wanted me to keep it since it's so easy to put in. Maybe in her opinion. Obviously she has never had cancer or the need for one.
When I was diagnosed in 2007, or when I had a CT scan which showed the tumor my oncologist mentioned that it might be papillary. At the time I didn't really know what he was talking about and tried to find info on the internet without much success. Before I could get too far I had a needle biopsy which did clarify that it was malignant and the type of cancer, endometrial.
I too try to eat a good diet and have just about managed to give up red meat. It's been hard since my husband gets real tired of chicken and fish that's not fried. I need to exercise more and eat a lot less chocolate. I've also been trying to learn how to meditate since I really need some way to lessen my stress and anxiety. I've talked to a counselor who recommended I see and talk with friends more often so I've been working on that and I do think it is helping. I'm babbling on giving you a lot more info than your simple question but it's so nice to have someone to talk to about everything. Thanks for responding to my posting.
Take care and keep up the fight! Terry0 -
lymph nodestbsjewels said:In 2002 at the age of 53 I was diagnosed with endometrial cancer, very early stage and did no further treatment after my hysterectomy and then staging surgery. The cancer was discovered with the hysterectomy so I had to have an exploratory laparotomy 7 wks later which showed no CA in the blood or lymph nodes. No further treatment was recommended just the normal followup every three months for a year and then every 6 months for the next 4 yrs. Two months short of the 5 yr. mark I had a reoccurrance. Pretty scary to go almost 5 yrs. and then have it show up again. It was a tumor wrapped around my transverse colon. I was fortunate to only lose 6 inches of colon with the surgery and not have a colostomy. My onc. told me it was not staged at this point and the official diagnosis is Recurrant endometrial cancer. Sounds strange to me but he is the head of Gyn. oncology at Siteman Cancer Center in St. Louis, MO. so I would think he knows what he is talking about. This time I did the 6 rounds of Carbo/Taxol chemo, no radiation. It will be 2 yrs. since my 2nd diagnosis on Aug. 30 and so far I have been NED. My CA 125 has been 11 for the last 2 yrs. I return for my next 3 month checkup on Aug. 26. I'm always scared. On April 30 I had my Port removed so feel that my Dr. felt fairly confident it was OK to remove it at this point. He originally told me he wanted me to keep it for 2 yrs. but would reconsider after one yr. depending on how I was doing. I was soooo glad to get rid of that thing. It gagged me to look at it or heaven forbid touch it! Needless to say I'm very needle squeamish but of course have bad tiny squiggly veins! I'm sure not having it for chemo would have been torture since every time I get an IV it takes them at least 3 tries. I have never done any other alternative treatments. I too was really appalled by the Chemotherapy doesn't work posting. I hope I have given you some insight concerning your questions and not scared you too much with my 5 yr. reoccurrance. I've heard from Drs. that speak at the support group I attend that a lot of cancers have become considered a chronic disease instead of a cure. We all hope we're in the "cure" group. Some of the ladies in the group have been cancer free for more than 10 yrs. 14 for one. Hearing that is very hopeful. Hang in there and I wish you the best and yrs. of NED!
Terry
my pelvic nodes not tested during hysterectomy 6/24/09
now they want to proceed with just radiation....
do u have lymph nodes?0 -
Hi Again, Terrytbsjewels said:Ports suck
Hi, Mary Ann. No, my cancer was not UPSC. I never really got an official diagnosis the first time. I was just so glad that it was gone and considered it over and done with. I don't like to hear statistics and diagnosis stuff. I was REALLY surprised when I had the reoccurrance as was my Dr.
Yes, the port was from 2007. I thought long and hard about having it removed even when my Dr. said it could go. I always thought I'd rather have it and not need it than have to have it put back in. I have (had) a friend who worked for an oncologist about 6-7 years ago and she couldn't see any reason why he wanted me to keep it since it's so easy to put in. Maybe in her opinion. Obviously she has never had cancer or the need for one.
When I was diagnosed in 2007, or when I had a CT scan which showed the tumor my oncologist mentioned that it might be papillary. At the time I didn't really know what he was talking about and tried to find info on the internet without much success. Before I could get too far I had a needle biopsy which did clarify that it was malignant and the type of cancer, endometrial.
I too try to eat a good diet and have just about managed to give up red meat. It's been hard since my husband gets real tired of chicken and fish that's not fried. I need to exercise more and eat a lot less chocolate. I've also been trying to learn how to meditate since I really need some way to lessen my stress and anxiety. I've talked to a counselor who recommended I see and talk with friends more often so I've been working on that and I do think it is helping. I'm babbling on giving you a lot more info than your simple question but it's so nice to have someone to talk to about everything. Thanks for responding to my posting.
Take care and keep up the fight! Terry
Re: the port. I really appreciate my port. Every time I have it flushed or had chemo - and even today when I got a mammogram - the medical folks comment on how great my port is!!! the placement, the functioning, etc. It hasn't bothered me a bit - just some minor things once in awhile and it can be creepy to look at. Maybe I'm real fortunate - a friend of mine said she knew someone that kept hers for over 6 years!!!!
Babble all you want. This network can be part of your reaching out to friends. Re: meditating. There are Cds you can buy - maybe the library has some you can borrow - I ordered ones done by integrative medicine MDs Andrew Weil and Martin Rossman. Once you learn the technique you just do on your own - wherever and whenever you want. I love the book, Getting Well Again by Simonton - it has helped me learn to change and be so conscious about my attitude.
God Bless, Mary Ann0 -
Marylynmaryln3 said:lymph nodes
my pelvic nodes not tested during hysterectomy 6/24/09
now they want to proceed with just radiation....
do u have lymph nodes?
My lymph nodes were tested and were clear. I am stage 3a UPSC and was advised to have 6 rounds chemo (taxol/carbo) after my surgery. I am now NED and on surveillance.
I'm not sure if I answered your question.
Mary Ann0 -
Books-Mary Ann, pleasedaisy366 said:Hi Again, Terry
Re: the port. I really appreciate my port. Every time I have it flushed or had chemo - and even today when I got a mammogram - the medical folks comment on how great my port is!!! the placement, the functioning, etc. It hasn't bothered me a bit - just some minor things once in awhile and it can be creepy to look at. Maybe I'm real fortunate - a friend of mine said she knew someone that kept hers for over 6 years!!!!
Babble all you want. This network can be part of your reaching out to friends. Re: meditating. There are Cds you can buy - maybe the library has some you can borrow - I ordered ones done by integrative medicine MDs Andrew Weil and Martin Rossman. Once you learn the technique you just do on your own - wherever and whenever you want. I love the book, Getting Well Again by Simonton - it has helped me learn to change and be so conscious about my attitude.
God Bless, Mary Ann
Hi Mary Ann
You have mentioned other books in the past...could you refresh me? I know the Louise Hay is excellent, but am in need of others. The Getting Well Again sounds perfect for me and I plan on getting that one.
Thanks for your help.
Best,
Kathy0 -
Bookskathybd said:Books-Mary Ann, please
Hi Mary Ann
You have mentioned other books in the past...could you refresh me? I know the Louise Hay is excellent, but am in need of others. The Getting Well Again sounds perfect for me and I plan on getting that one.
Thanks for your help.
Best,
Kathy
Kathy,
I know others have made recommendations. I'm pretty stuck on my buddy Carl Simonton. I also read Irving Oyle's The Healing Mind. Interesting info about the power of the mind.
Mary Ann0 -
Another Bookkathybd said:Books-Mary Ann, please
Hi Mary Ann
You have mentioned other books in the past...could you refresh me? I know the Louise Hay is excellent, but am in need of others. The Getting Well Again sounds perfect for me and I plan on getting that one.
Thanks for your help.
Best,
Kathy
I liked Anticancer-A New Way of Life by David Servan-Schrieber, MD, PhD. References lots of ligitimate research. He is a physician who had cancer and was appalled that his physicians had such a lack of nutrition info....some good info.
I also liked Crazy Sexy cancer....lots of very practical info.
Karen0 -
KAREN AND MARY ANNkkstef said:Another Book
I liked Anticancer-A New Way of Life by David Servan-Schrieber, MD, PhD. References lots of ligitimate research. He is a physician who had cancer and was appalled that his physicians had such a lack of nutrition info....some good info.
I also liked Crazy Sexy cancer....lots of very practical info.
Karen
Thanks for the info ladies. Will surely enjoy these during chemo.
Best,
Kathy0
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