In shock UPSC IIIC diagnosis (Incomplete Staging) Update
Hello all, I previously posted on this forum about two weeks ago about my mom.
I am in shock right now.
Bad bad news… So my mom had her hysterectomy plus 19 pelvic lymph nodes removed on Tuesday. Although the initial surgery was supposedly successful according to the gyn-onc, the pathology reports came out today and it was discovered that the cancer has spread to one of her lymph nodes, which has upgraded her staging from 1A to IIIC. Even worse, this type of cancer is not endometrial cancer but uterine papillary serous carcinoma, which is a rare highly aggressive cancer that has a lower chance of successful cure and higher chance of metastasis and survival. I am feeling shocked right now and I don’t think I can handle anything at the moment. The gyn-onc is on vacation at the moment but we have an appt with him on Tuesday 9/13 to discuss treatment... Prayers are needed. How do I even deal with this?
I'm assuming she has to go in for a second procedure for omectectomy, vaginal brachytherapy, any other lymph nodes, do a PET scan, and then receive both RT/Chemo treatment afterwards.
Are there any UPSC IIIC+ survivors here? Is this curable? How successful are treatments? What is the metastasis rate? Which treatments (both RT and types of chemo) have worked?
Thanks, please help!
Comments
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RC, Remember to breathe.
RC, Remember to breathe. There are MANY IIIC and IV stage survivors on this board. Please don't look at the stats on line. They are really outdated. I'm sorry you and your Mom are having to go through this. There have been a lot of discoveries and treatments for our cancer. And, I'm not so sure UPSC is as rare as we are led to believe. It sure seems like there is a lot of us out here! Take this journey one day, one step at a time. You will be amazed at how strong your Mom will be. And, she is very lucky to have you there to support her!
Please come back and let us know what her next steps are and how she is doing. Also, feel free to ask any and all questions. Someone here will most likely have the answer.
Love and Hugs,
Cindi
0 -
Welcome to this place that no
Welcome to this place that no one really wants to be a part of. you have found a great place to be. The ladies here are super. You will find support, compassion and information here. Don't be afaid to ask any questions, chances are someone will have an answer. I was diagnosed 4 years ago with Serous Papillary endometrial andocarinoma stage IV high grade. My story may not be the most encouraging, but it has been four years and I am still hear. I had pretty good results from Taxol/Carboplatin. It gave 7 months of NED. I was on it until I started having reactions to the Carbo. We tried several other with not the best results. The last chemo,that I was on was Avastin and it was working quite well until it cause a mild heart attack. I am now on an immunotherapy drug. I feel better than I have for a very long time. I have many more good days than bad. And I am here to,say never give up hope. There are new treatments around the corner. There are ladies here with stages III and IV that are NED and have been for a numbe of years.
You will.find that your ,other is stronger than you ever imagined and so are you. She s lucky to,have you in her corner.
Hugs and prayers, Lou Ann
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Dear Lou Ann,Lou Ann M said:Welcome to this place that no
Welcome to this place that no one really wants to be a part of. you have found a great place to be. The ladies here are super. You will find support, compassion and information here. Don't be afaid to ask any questions, chances are someone will have an answer. I was diagnosed 4 years ago with Serous Papillary endometrial andocarinoma stage IV high grade. My story may not be the most encouraging, but it has been four years and I am still hear. I had pretty good results from Taxol/Carboplatin. It gave 7 months of NED. I was on it until I started having reactions to the Carbo. We tried several other with not the best results. The last chemo,that I was on was Avastin and it was working quite well until it cause a mild heart attack. I am now on an immunotherapy drug. I feel better than I have for a very long time. I have many more good days than bad. And I am here to,say never give up hope. There are new treatments around the corner. There are ladies here with stages III and IV that are NED and have been for a numbe of years.
You will.find that your ,other is stronger than you ever imagined and so are you. She s lucky to,have you in her corner.
Hugs and prayers, Lou Ann
Dear Lou Ann,
Thank you for your kind words. This is so hard, but I will try to take it one day at a time. I only have my mom left because I lost my dad from advanced stage liver cancer 3 years ago. He was only 62. I really don't want to lose my mom in this painful way either.
I will also be praying for you and for anyone who is suffering from this awful cancer.
Rebecca0 -
I think half the ladies here
I think half the ladies here have UPSC. I do!! When I first read those online stats I figured I'd be gone in a few weeks, but it's almost a year from my surgery and I'm still kicking. Survival rates are much higher now and new treatments are coming out all the time. Don't panic, it will be OK. We're here for you!
Love,
Eldri
0 -
It has been almost a year to
It has been almost a year to this date that I was diagnosed with endometrial clear cell cancer 3c also. I never asked the doctor how long I had to live and I quit looking at the statistics and went through all the treatments which were hysterectomy, radiation both internal and externa, 6 rounds of carbo/taxol. I Finnish treatment in June and had a clear ct scan. Yes, it has a good chance to come back, but I'm determined to live each day in the best way I can. Be there to support and care for your mom. I know it will mean the world to her as my girls have been there for me, often in spirit as they live far away. I am now 63 and I have the will to live. Prayers for you and your mom! I know you can do it:)
0 -
There are many women on this
There are many women on this board who have UPSC or other grade 3 cancers, relatively rare and aggressive. I was originally diagnosed with carcinosarcoma though a second pathologist called it serous carcinoma, still grade 3. Cancer was also found in some of my lymph nodes after my hysterectomy, so stage IIIc here as well. I was shocked, too, when I received the final pathology as my doctors were so encouraging right after surgery that "it looks like we got it early."
I freaked out when I first went online and saw the stats as well. I've since learned that while the internet can be a great source of info, a lot of info about UPSC is dated as are some of those grim stats. It is NOT an automatic death sentence and women here are enjoying their lives, even if they are continuing to deal with their cancer. And, as both Cindi and Lou Ann have said, there are new advances being made all the time in treatment.
You will find that the women here have gone through various protocols. Some have done the "sandwich" therapy, chemo, followed by radiation, followed by chemo. Some have done chemo, and then radiation, external and/or internal. And there have been other combinations as well.
I posted this in another thread, but I'll do it here for you as well. When you meet with your mom's gyn-onc, here are a few questions she might want to ask:
What treatments are you recommending and why?
What is the goal of treatment?
How will my response to treatment be monitored and how will we know if treatment is working?
How should I prepare for treatment?
What risks are there and what side effects should I expect? What can I do to help minimize the side effects?
What are the chances of recurrence with this treatment plan?
Also ask to get copies of all the pathology reports/scans/etc. for her records. These will come in handy should she decide to seek a second opinion.
This is the scariest and hardest part in some ways, having the diagnosis but not knowing what comes next. Once your mom and her doctors have come up with a plan, you will have a path to follow, and that will help a lot.
Take a deep breath... and don't give up hope.
Hugs to both of you.
Chris
0 -
RC, U am so sorry to hear about your Mom
As the other women here, I also understand your shock, fear, and uncertainty. My heart and blessings go out to you and your dear Mom. RC. I have read many professional research papers about Uterine Papillary Serous adenocarcinoma, a rare and always aggressive form of endometrial adenocarcinoma. I was diagnosed almost 3 years ago with UPSC, stage 3a and I am- surprisingl- still alive and cancer free. In fact, I had my chemo port removed on 8/24/16. Your mother may do very well with treatment and can beat this. My chance of a recurrence was about 50/50 at the time of surgery and now it is more like a 25% chance of recurrence. As days go by, it will continue to drop. I will tell you that nothing in my 60 years of living at the time of my diagnosis ever prepared me for the shock and total meltdown that I experienced. I wanted to take control and decide when my life would end.
Unless you have been diagnosed with a rare and aggressive cancer, advanced stage which is stage 3 or 4, it is impossible to understand the sheer terror that accompanies such a diagnosis.
In the USA, about 3000 or more women a year are diagnosed with this rare form of endometrial cancer. Unfortunately, rare cancers are not researched much cause there's no profit in it. Also, most uterine cancer patients have a stage 1, grade 1 Endometriod endometrial cancer which is curable with a hysterectomy.
Hoping for the best for your Mom, RC.
M
ve form of uterine
0 -
Thank you for yourEZLiving66 said:I think half the ladies here
I think half the ladies here have UPSC. I do!! When I first read those online stats I figured I'd be gone in a few weeks, but it's almost a year from my surgery and I'm still kicking. Survival rates are much higher now and new treatments are coming out all the time. Don't panic, it will be OK. We're here for you!
Love,
Eldri
Thank you for your encouraging words, Eldri. I can only pray for the best outcome.
0 -
I am encouraged by yourSoup52 said:It has been almost a year to
It has been almost a year to this date that I was diagnosed with endometrial clear cell cancer 3c also. I never asked the doctor how long I had to live and I quit looking at the statistics and went through all the treatments which were hysterectomy, radiation both internal and externa, 6 rounds of carbo/taxol. I Finnish treatment in June and had a clear ct scan. Yes, it has a good chance to come back, but I'm determined to live each day in the best way I can. Be there to support and care for your mom. I know it will mean the world to her as my girls have been there for me, often in spirit as they live far away. I am now 63 and I have the will to live. Prayers for you and your mom! I know you can do it:)
I am encouraged by your optimism and your strength of will, Soup52. For me, it's the feeling of helplessness and not being able to control the situation, watching as your parent is suffering, that's the thing that makes me miserable. I will try to be strong for her, and I'm asking for everyone's prayers (and will pray for you all in return) for the best outcome and a cure.
0 -
Thank you, Chris! This isEditgrl said:There are many women on this
There are many women on this board who have UPSC or other grade 3 cancers, relatively rare and aggressive. I was originally diagnosed with carcinosarcoma though a second pathologist called it serous carcinoma, still grade 3. Cancer was also found in some of my lymph nodes after my hysterectomy, so stage IIIc here as well. I was shocked, too, when I received the final pathology as my doctors were so encouraging right after surgery that "it looks like we got it early."
I freaked out when I first went online and saw the stats as well. I've since learned that while the internet can be a great source of info, a lot of info about UPSC is dated as are some of those grim stats. It is NOT an automatic death sentence and women here are enjoying their lives, even if they are continuing to deal with their cancer. And, as both Cindi and Lou Ann have said, there are new advances being made all the time in treatment.
You will find that the women here have gone through various protocols. Some have done the "sandwich" therapy, chemo, followed by radiation, followed by chemo. Some have done chemo, and then radiation, external and/or internal. And there have been other combinations as well.
I posted this in another thread, but I'll do it here for you as well. When you meet with your mom's gyn-onc, here are a few questions she might want to ask:
What treatments are you recommending and why?
What is the goal of treatment?
How will my response to treatment be monitored and how will we know if treatment is working?
How should I prepare for treatment?
What risks are there and what side effects should I expect? What can I do to help minimize the side effects?
What are the chances of recurrence with this treatment plan?
Also ask to get copies of all the pathology reports/scans/etc. for her records. These will come in handy should she decide to seek a second opinion.
This is the scariest and hardest part in some ways, having the diagnosis but not knowing what comes next. Once your mom and her doctors have come up with a plan, you will have a path to follow, and that will help a lot.
Take a deep breath... and don't give up hope.
Hugs to both of you.
Chris
Thank you, Chris! This is most informative and very helpful. I will definitely need it as a guideline when we see her gyn/onc. I am encouraged by that we are not going through this alone. Your knowledge and experience is greatly appreciated. May I ask if you are still on treatment currently? How long has it been? Is there any progress after your treatments and are you NED?
My concern right now is how everything is moving so slowly. Because the doctor is on vacation this week, we won't get to see him until 9/13. Even then, if he decides to perform a second surgery (omentectomy, etc., dissection of para-aortic lymph nodes), that will take a week to get approved (by our insurance), and then she won't be able to do chemo/radiation until weeks after that. How likely is it that the doctor will even perform a second surgery and how long does it usually take to start chemo/radiation after surgery?
Thank you for everything,
Rebecca0 -
I am so happy for you,Abbycat2 said:RC, U am so sorry to hear about your Mom
As the other women here, I also understand your shock, fear, and uncertainty. My heart and blessings go out to you and your dear Mom. RC. I have read many professional research papers about Uterine Papillary Serous adenocarcinoma, a rare and always aggressive form of endometrial adenocarcinoma. I was diagnosed almost 3 years ago with UPSC, stage 3a and I am- surprisingl- still alive and cancer free. In fact, I had my chemo port removed on 8/24/16. Your mother may do very well with treatment and can beat this. My chance of a recurrence was about 50/50 at the time of surgery and now it is more like a 25% chance of recurrence. As days go by, it will continue to drop. I will tell you that nothing in my 60 years of living at the time of my diagnosis ever prepared me for the shock and total meltdown that I experienced. I wanted to take control and decide when my life would end.
Unless you have been diagnosed with a rare and aggressive cancer, advanced stage which is stage 3 or 4, it is impossible to understand the sheer terror that accompanies such a diagnosis.
In the USA, about 3000 or more women a year are diagnosed with this rare form of endometrial cancer. Unfortunately, rare cancers are not researched much cause there's no profit in it. Also, most uterine cancer patients have a stage 1, grade 1 Endometriod endometrial cancer which is curable with a hysterectomy.
Hoping for the best for your Mom, RC.
M
ve form of uterine
I am so happy for you, Abbycat2. I am more encouraged by what you had to go through and how you were/are able to fight pass it. Let us all keep on fighting. I am quite disappointed that there isn't that much research on this particular type of uterine cancer and that most people don't know about it. It really needs more exposure in order for there to be development in advanced methods of treatment.
Will continue to pray for you to have a long and happy cancer-free life,
Rebecca0 -
Currently NEDrcdeman said:Thank you, Chris! This is
Thank you, Chris! This is most informative and very helpful. I will definitely need it as a guideline when we see her gyn/onc. I am encouraged by that we are not going through this alone. Your knowledge and experience is greatly appreciated. May I ask if you are still on treatment currently? How long has it been? Is there any progress after your treatments and are you NED?
My concern right now is how everything is moving so slowly. Because the doctor is on vacation this week, we won't get to see him until 9/13. Even then, if he decides to perform a second surgery (omentectomy, etc., dissection of para-aortic lymph nodes), that will take a week to get approved (by our insurance), and then she won't be able to do chemo/radiation until weeks after that. How likely is it that the doctor will even perform a second surgery and how long does it usually take to start chemo/radiation after surgery?
Thank you for everything,
RebeccaI was diagnosed in June of last year. I finished chemo in December 2015 and finished with brachytherapy in February of this year. My post-treatment PET scan was in May and was clear. I am monitored every 3 months by my docs. Follow up PET scans will be done every 6-12 months.
I really can't speak to the likelihood of a second surgery before chemo; I don't think it's that common since she has already had a total hysterectomy and if they found cancer in the lymph nodes, they must have already performed a lymph node dissection. Someone else here might have a better answer to that question.
Generally, doctors want to start chemo sooner rather than later after surgery. But they do want your body somewhat recovered from the trauma of surgery before it's subjected to the rigors of chemo. My post-op appointment was 3 weeks after surgery and my gyn/onc wanted to start chemo as soon as possible after that. Due to some other, non-cancer related issues, my chemo began 5 weeks after surgery. Others have started chemo both sooner and later than that.
I know that things seem to be moving slowly, but rest assured it is not taking that long. Your first post was only 2 weeks ago, and since then, your mom has already had her surgery and gotten the pathology back. It's normal to want to start doing SOMETHING as soon as possible, but please don't stress too much at this point about the time frame. Right now the best thing for your mom is to concentrate on resting and healing from surgery.
Hang in there!
Chris
0 -
Prepare for the long haul
One thing I hear over and over again in threads is how hard the long road going through treatments and then followup monitoring is on both us and family or other persons supporting us on this journey. I can tell that my husband is so ready for life to get back to normal and so am I, but we have another surgery and probably 5 and a half weeks of radiation to go after 5 months of all of this already. It's really hard to do!
My advice is to understand that this is not something you can plow through and get over with quickly. Pace yourself. Take care of yourself. Most of all, forgive yourself and your mother when you have those days when you don't meet your own expectations. Cindi's advice is so spot on...remember to breathe! There's really a special place in heaven for those who help us through cancer treatment!
0 -
There is hope
rcdeman, I wish your mom didn't have to go through any of this. She sounds like a strong, smart, independent woman and she obviously raised a wonderful child who loves her dearly. You will both make it through this chapter of life. It won't be easy and it won't be quick, but there is hope. Where there is life, there is hope.
Wishing you both strength and peace, Kim
Surgery: TAH & BSO, 14 lymph nodes excised, 10.5 cm tumor - Sept 2015; 47 years old
Dx: Uterine carcinosarcoma (MMMT) Stage 1b, Grade 3
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - completed May 2016; Radiation - external, 28 treatments, completed Mar 2016
NED: June 2016
0 -
2 1/2 years NED
I was diagnosed in June, 2013 with UPSC. Had total hysterctomy and was staged at a Stage IIIC2. One lymph node tested positive. I did 18 chemos of Carboplatin and paclitaxol one 5 brachytherapy. Nothing easy about it but doable. I was sixty seven and dianosis and finished treatment Feb. 2014. I just had my six month checkup in July and all clear for another six months. My gyny/onc does not do CT or Pets for followup and the CA125 is not a good marker for me. I feel good - I have pretty severe neourapthy in my feet and a few holes in the memory but overall am doing great. I always had the attitude that I would beat this and never considered another outcome. However; after saying that, each six month exam is just one more step forward in this journey. You have been given lots of good advice about what to ask and one step at a time but I just wanted to give you one more name and story that is successful as of today. My husband was diagosed with bi-lateral kidney cancer one month before me and my daughter 1 1/2 years later was diagnosed with breast cancer. We are all doing great; a testament that we are definetly stronger that we think going into this.
0 -
I'm closer to the beginning
I'm closer to the beginning of treatment than the end, but still feeling very hopeful. (Feeling quite good overall, since it's been a month since my last chemo treatment and radiation hasn't started yet--sometimes I almost forget I have cancer.) A friend who had stage 3 ovarian cancer with a 25% 5-year survival prognosis said that if anyone had told her she had a 25% chance of getting into Harvard, she'd have thought that was pretty good, so she tried to look at her cancer treatments the same way; she's now 5+ years NED. But I honestly don't know how I'd be feeling if I hadn't found this board.
Joanne, you're a real inspiration to me!
Kim, it always gives me a lift to see your posts!
Thanks, everybody!
0 -
Thank you Cindi.TeddyandBears_Mom said:RC, Remember to breathe.
RC, Remember to breathe. There are MANY IIIC and IV stage survivors on this board. Please don't look at the stats on line. They are really outdated. I'm sorry you and your Mom are having to go through this. There have been a lot of discoveries and treatments for our cancer. And, I'm not so sure UPSC is as rare as we are led to believe. It sure seems like there is a lot of us out here! Take this journey one day, one step at a time. You will be amazed at how strong your Mom will be. And, she is very lucky to have you there to support her!
Please come back and let us know what her next steps are and how she is doing. Also, feel free to ask any and all questions. Someone here will most likely have the answer.
Love and Hugs,
Cindi
Thank you Cindi.
I've looked at all the stats and information online and they were so disheartening with the abysmal survival rates. My mom is only 65 and I really wanted her to have a long happy life. I don't know what I would do without her. I'm so worried and anxious ever since I received the pathology reports and have been crying as this sinks in. I will try to be positive, but it's difficult at the moment. I am taking heart in the fact that there are others here who have survived and are doing well.
For those who have gone through this, what treatment(s) did you have? I'm afraid my mom will have to go through a second surgical procedure. The doctor was hopeful it was just stage 1A normal endometrial cancer so he did not do ometectomy or remove any of the para-aortic lymph nodes. They did do a peritoneal wash that came out positive. It wasn't until we received the path reports only to discover this was UPSC 3C.
I will need a lot of support during the coming months, and hope those who have gone through this experience can guide me through this.
Trying to be positive,
Rebecca0 -
I'm glad you are NED, Chris.Editgrl said:Currently NED
I was diagnosed in June of last year. I finished chemo in December 2015 and finished with brachytherapy in February of this year. My post-treatment PET scan was in May and was clear. I am monitored every 3 months by my docs. Follow up PET scans will be done every 6-12 months.
I really can't speak to the likelihood of a second surgery before chemo; I don't think it's that common since she has already had a total hysterectomy and if they found cancer in the lymph nodes, they must have already performed a lymph node dissection. Someone else here might have a better answer to that question.
Generally, doctors want to start chemo sooner rather than later after surgery. But they do want your body somewhat recovered from the trauma of surgery before it's subjected to the rigors of chemo. My post-op appointment was 3 weeks after surgery and my gyn/onc wanted to start chemo as soon as possible after that. Due to some other, non-cancer related issues, my chemo began 5 weeks after surgery. Others have started chemo both sooner and later than that.
I know that things seem to be moving slowly, but rest assured it is not taking that long. Your first post was only 2 weeks ago, and since then, your mom has already had her surgery and gotten the pathology back. It's normal to want to start doing SOMETHING as soon as possible, but please don't stress too much at this point about the time frame. Right now the best thing for your mom is to concentrate on resting and healing from surgery.
Hang in there!
Chris
I'm glad you are NED, Chris. It gives me hope. I pray for your continued health!
The reason I ask is because the doctor did not perform omentectomy or remove any of the para-aortic lymph nodes which is usually the standard procedure for people who are diagnosed with UPSC stage 3. I've looked online and there does seem to be some people who have undergone a second surgery, but I am not sure if this normal.
Being that UPSC is an aggressive cancer and being that my mom is already IIIC, I feel concerned that metastasis can happen during the period of waiting. I'm scared, but you are correct, I will try not to stress. My mom seems to be recooperating well after her first surgery. She still has some bloatedness but she is not feeling much pain and doesn't even have to take any pain medication anymore, which is good news. However, she has been experiencing coughing for about 2 months now, and I'm scared that this may be a sign of the cancer having already metastasized to her lungs. I am hoping this is not the case. I will ask the doctor if he can order a PET scan to check for metastasis and spread when we see him and ask him what should be done at this point.
Please continue your prayers and your support. You have all been so helpful and I am glad there is a forum like this.
Prayers to all,
Rebecca0 -
Thanks for your wise advice,MAbound said:Prepare for the long haul
One thing I hear over and over again in threads is how hard the long road going through treatments and then followup monitoring is on both us and family or other persons supporting us on this journey. I can tell that my husband is so ready for life to get back to normal and so am I, but we have another surgery and probably 5 and a half weeks of radiation to go after 5 months of all of this already. It's really hard to do!
My advice is to understand that this is not something you can plow through and get over with quickly. Pace yourself. Take care of yourself. Most of all, forgive yourself and your mother when you have those days when you don't meet your own expectations. Cindi's advice is so spot on...remember to breathe! There's really a special place in heaven for those who help us through cancer treatment!
Thanks for your wise advice, MAbound. I think I am not quite prepared for the longhaul, but it's sinking in that this will be an ongoing gradual process. I am still working full-time so I will have to figure out how to juggle taking care of my mom, taking her to her sessions, etc., and working. I'll probably have to take more time off work or maybe even go on leave depending on what happens. I am hoping my mom will get better and that the chemo/radiation will be effective and not hard on her.
May all your prayers abound,
Rebecca0 -
I appreciate and am muchKvdyson said:There is hope
rcdeman, I wish your mom didn't have to go through any of this. She sounds like a strong, smart, independent woman and she obviously raised a wonderful child who loves her dearly. You will both make it through this chapter of life. It won't be easy and it won't be quick, but there is hope. Where there is life, there is hope.
Wishing you both strength and peace, Kim
Surgery: TAH & BSO, 14 lymph nodes excised, 10.5 cm tumor - Sept 2015; 47 years old
Dx: Uterine carcinosarcoma (MMMT) Stage 1b, Grade 3
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - completed May 2016; Radiation - external, 28 treatments, completed Mar 2016
NED: June 2016
I appreciate and am much encouraged by your words, Kim. I am so happy you are NED. Hoping it continues as each extra day you are NED is a wonderful sign that you are cancer-free.
Will pray for your continued health!
Rebecca0
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