New article by the New England Journal of Medicine Endometrial cancer

BluebirdOne

https://www.nejm.org/doi/full/10.1056/NEJMra1514010#.X7cGIUBYvR4.twitter

Forherself

Great article

Thanks for sharing.  

MAbound

Could you sum it up for us?

Armywife

Fascinating

And so timely!  I meet with my gyn/onc in January to discuss whether I should be doing anything beyond metformin to prevent recurrence.  I will be so glad to have this article for reference.  Thank you!

EZLiving66

Very interesting article.

Very interesting article. Thank you for sharing!

Love,

Eldri

EZLiving66

MAbound said:

Could you sum it up for us?

You can sign up for two free

You can sign up for two free articles a month without a subscription. That is what I did.

Love,

Eldri

Molly110

Article Contains Prognosis Information

Just a heads up that this article includes prognosis data. Anyone who wants to avoid that information might want to skip this. I wish that I had.

 

Molly

Red Corvette

Thank You

Thank you BluebirdOne for posting this article. A good state of the art on the overall current status for treatment of endometrial cancers. The take away seems to be that molecular testing of tumors is essential to determine best treatment options for both initial and reoccurrence diagnosis. Also you better have a doctor that knows about molecular tumor testing before making treatment decisions.

BluebirdOne

Molly110 said:

Article Contains Prognosis Information

Just a heads up that this article includes prognosis data. Anyone who wants to avoid that information might want to skip this. I wish that I had.

 

Molly

Sorry, Molly110

I am sorry that you were upset. I read these Journal type articles all the time, and read about the ongoing trials which contain by definition, OS, PFS, etc. to their informatiion. I can see how it could be upsetting if you are not prepared. For myself, I want to know this information, even if it is not optimistic for me.

xxoo

Denise

BluebirdOne

Molly110 said:

Article Contains Prognosis Information

Just a heads up that this article includes prognosis data. Anyone who wants to avoid that information might want to skip this. I wish that I had.

 

Molly

Sorry, Molly110

I am sorry that you were upset. I read these Journal type articles all the time, and read about the ongoing trials which contain by definition, OS, PFS, etc. to their informatiion. I can see how it could be upsetting if you are not prepared. For myself, I want to know this information, even if it is not optimistic for me. To be honest, our website details the extreme struggles of so many women who have not survived, their treatments, etc, that to me can be very upsetting, but I learn from their deaths, however unpalatable the information might be. I hope to expand our knowledge and hope that it might help someone now or in the future.

Denise

Molly110

BluebirdOne said:

Sorry, Molly110

I am sorry that you were upset. I read these Journal type articles all the time, and read about the ongoing trials which contain by definition, OS, PFS, etc. to their informatiion. I can see how it could be upsetting if you are not prepared. For myself, I want to know this information, even if it is not optimistic for me. To be honest, our website details the extreme struggles of so many women who have not survived, their treatments, etc, that to me can be very upsetting, but I learn from their deaths, however unpalatable the information might be. I hope to expand our knowledge and hope that it might help someone now or in the future.

Denise

survival rates

Hi Denise,

You certianly have no need to apologize to me, or to anyone, for posting the link to the article. I appreciate your posts and always find them interesting and helpful. 

I know that UPSC has terrible survival odds, so bad that I almost didn't do chemo out of a sense that it was futile to try to prolong my life when what I was inevitably facing was a horrible death. I let people I love convince me to do the chemo, combined with my faith in the brilliant, warm, and compassionate gyn/onc who did my surgery and would do my chemo. Although I made it through chemo and radiation relatively easily, I live every day with the prospect of an early death. I don't kid myself, and not a day goes by that I don't both plan for the future and plan for getting my affairs in order so that they don't land on my sister after my death. I finished chemo January 10 of this year, so maybe I will have more confidence in the future if I make it through the next couple of years. But right now, the way I cope is to avoid one piece of information -- the survival odds for stage 1 UPSC. I told my doctor and care team when I decided to go through chemo that I did not want to know that, and I avoid reading articles that I think are likely to include that information.

It's on me, not you, that I read the article you linked to. From the title, I thought it wouldn't discuss survival odds, and I posted an alert as a heads up to any other woman on the board who, like me, tries to avoid that specific information. I know there are many more women who read than post, and i figured some of them may be like me.

Warm best wishes,

Molly

EZLiving66

Molly110 said:

survival rates

Hi Denise,

You certianly have no need to apologize to me, or to anyone, for posting the link to the article. I appreciate your posts and always find them interesting and helpful. 

I know that UPSC has terrible survival odds, so bad that I almost didn't do chemo out of a sense that it was futile to try to prolong my life when what I was inevitably facing was a horrible death. I let people I love convince me to do the chemo, combined with my faith in the brilliant, warm, and compassionate gyn/onc who did my surgery and would do my chemo. Although I made it through chemo and radiation relatively easily, I live every day with the prospect of an early death. I don't kid myself, and not a day goes by that I don't both plan for the future and plan for getting my affairs in order so that they don't land on my sister after my death. I finished chemo January 10 of this year, so maybe I will have more confidence in the future if I make it through the next couple of years. But right now, the way I cope is to avoid one piece of information -- the survival odds for stage 1 UPSC. I told my doctor and care team when I decided to go through chemo that I did not want to know that, and I avoid reading articles that I think are likely to include that information.

It's on me, not you, that I read the article you linked to. From the title, I thought it wouldn't discuss survival odds, and I posted an alert as a heads up to any other woman on the board who, like me, tries to avoid that specific information. I know there are many more women who read than post, and i figured some of them may be like me.

Warm best wishes,

Molly

Molly, I too have UPSC -

Molly, I too have UPSC - Stage II or III (incomplete staging) and only made it through three chemos before the side effects got the best of me. i looked at those statistics and just assumed I was going to die within the next year or so. I had put my "life" on hold to prepare for my death. But about a year after my chemo ended my oncologist/gynecologist's PA who was only 41 years old died six weeks after being diagnosed with brain cancer. I had seen her in December and she was fine but by the beginning of February she was gone. After reading her obituary, I totally changed my attitude and decided that whatever time I had left, I would "live" it and quit preparing to die.

Here I am five years later and no recurrence. I still struggle with the chemo damage but I'm alive and have a wonderful life. We sold our business of 30 years, retired, and moved to Florida. I enjoy every day! 

I know UPSC is a sneaky devil but for whatever reason, I just don't worry about it anymore. I hope you can find that same kind of peace.

Love,

Eldri

Molly110

EZLiving66 said:

Molly, I too have UPSC -

Molly, I too have UPSC - Stage II or III (incomplete staging) and only made it through three chemos before the side effects got the best of me. i looked at those statistics and just assumed I was going to die within the next year or so. I had put my "life" on hold to prepare for my death. But about a year after my chemo ended my oncologist/gynecologist's PA who was only 41 years old died six weeks after being diagnosed with brain cancer. I had seen her in December and she was fine but by the beginning of February she was gone. After reading her obituary, I totally changed my attitude and decided that whatever time I had left, I would "live" it and quit preparing to die.

Here I am five years later and no recurrence. I still struggle with the chemo damage but I'm alive and have a wonderful life. We sold our business of 30 years, retired, and moved to Florida. I enjoy every day! 

I know UPSC is a sneaky devil but for whatever reason, I just don't worry about it anymore. I hope you can find that same kind of peace.

Love,

Eldri

Hi Eldri,

Hi Eldri,

Thank you for the kind and supportive words. There are so many ways in which all of us are alike because we are on this journey with uterine cancer, but there are many more ways in which we are all different. I live alone and work full time and have a lot of other responsibilites. UPSC caught me completely off guard and knocked me for a loop emotionally and financially. The first time that happened was on fate, but being unprepared again would be on me. 

I hope you have a happy Thanksgiving,

Molly

SF73

Thank you for posting this

Thank you for posting this paper, Bluebird One.  I think the paper does a good job summarizing what we know about this disease. I hope we will learn a lot more in the next few years. 

BluebirdOne

Molly110 said:

survival rates

Hi Denise,

You certianly have no need to apologize to me, or to anyone, for posting the link to the article. I appreciate your posts and always find them interesting and helpful. 

I know that UPSC has terrible survival odds, so bad that I almost didn't do chemo out of a sense that it was futile to try to prolong my life when what I was inevitably facing was a horrible death. I let people I love convince me to do the chemo, combined with my faith in the brilliant, warm, and compassionate gyn/onc who did my surgery and would do my chemo. Although I made it through chemo and radiation relatively easily, I live every day with the prospect of an early death. I don't kid myself, and not a day goes by that I don't both plan for the future and plan for getting my affairs in order so that they don't land on my sister after my death. I finished chemo January 10 of this year, so maybe I will have more confidence in the future if I make it through the next couple of years. But right now, the way I cope is to avoid one piece of information -- the survival odds for stage 1 UPSC. I told my doctor and care team when I decided to go through chemo that I did not want to know that, and I avoid reading articles that I think are likely to include that information.

It's on me, not you, that I read the article you linked to. From the title, I thought it wouldn't discuss survival odds, and I posted an alert as a heads up to any other woman on the board who, like me, tries to avoid that specific information. I know there are many more women who read than post, and i figured some of them may be like me.

Warm best wishes,

Molly

Yes, I hear you, Molly

I am in the same boat as you, 1a UPSC, one year ahead of you being diagnosed 7/18. I am two years and a month after my last chemo, still NED. I feel exactly the same as you, many of us are in the same boat with worse initial staging. I think we all just confront our mortality as we know the odds are not great, but that is the point of the study. They used to lump all of us together instead of the current ability to determine by testing our molecular footprint. I know that I have a p53 mutation, no one can ever know when or how long I have had it, or was I born with it? I was a bit older than the typical serous post menopausal woman, dx at 67, but I observed my 70th birthday in September. Currently NED. I am fascinated (almost like a car accident) by the new studies that show the molecular classifications of UPSC, as it explains quite a bit of what puzzled me, why some with 1a did not do well, and others with 3a or even stage 4 survived. I feel exactly the way you do in that in the two years since I was dx, I have faced the fact that recurrence was pretty likely and extrapolate from there. Affairs in order, but still planting my gardens, buying furnishings for our new home. Some of us want to know, others don't and that is perfectly ok, but in the end many beat those odds and live a long time. I am optimistic I will see the oak tree we just planted grow to shade our house, but I have no idea how big it will grow before I am gone. 

xxoo

Denise 

Molly110

BluebirdOne said:

Yes, I hear you, Molly

I am in the same boat as you, 1a UPSC, one year ahead of you being diagnosed 7/18. I am two years and a month after my last chemo, still NED. I feel exactly the same as you, many of us are in the same boat with worse initial staging. I think we all just confront our mortality as we know the odds are not great, but that is the point of the study. They used to lump all of us together instead of the current ability to determine by testing our molecular footprint. I know that I have a p53 mutation, no one can ever know when or how long I have had it, or was I born with it? I was a bit older than the typical serous post menopausal woman, dx at 67, but I observed my 70th birthday in September. Currently NED. I am fascinated (almost like a car accident) by the new studies that show the molecular classifications of UPSC, as it explains quite a bit of what puzzled me, why some with 1a did not do well, and others with 3a or even stage 4 survived. I feel exactly the way you do in that in the two years since I was dx, I have faced the fact that recurrence was pretty likely and extrapolate from there. Affairs in order, but still planting my gardens, buying furnishings for our new home. Some of us want to know, others don't and that is perfectly ok, but in the end many beat those odds and live a long time. I am optimistic I will see the oak tree we just planted grow to shade our house, but I have no idea how big it will grow before I am gone. 

xxoo

Denise 

As usual, I agree with you

As usual, I agree with you completely, Denise. It isn't that I don't want to know most things about this cancer. There is only one quite specific piece of information that I avoid -- the survival percentage. I have a dear friend with a more aggressive than usual form of prostate cancer, and he alerted his doctor, as I did mine, that he did not want to know his survival odds as  percentage. (Unless, the odds are 98 percent in favor of survival, I have a hard time understanding that anyone would want to know. )

I smiled at your accident analogy, which I think is perfect. 

BTW, I am 1b, not 1a, so I just think of and write about myself as stage 1. My doctor said I had just barely past 50 percent invasion, but was 1b because the tumor was in the lower part of my uterus and that increases risk of recurrence.  He seems pretty hopeful, but I think he hopes for the best for all of his patients while making sure that we have all the information we want or need to make decisions about our care. 

Thanks again,

Molly

Dak82

This is the article

My sister referenced this article a few months ago when we went back and looked at pathology following surgery. In updates based on further testing following an MSI finding and negative activity from the MLH1 and PSM2 proteins, MLH1 was positive for methylation. In the first table in this article this leads directly to "candidate for checkpoint inhibitor therapy. We embarked on the standard taxal and carboX6, which ultimately was ineffective in preventing nodules in my lungs from multiplying and growing. 

Awaiting results of lung biopsy on 5 May but 99% sure it is EC. So I will be starting the pembrolazimub (Keytruda) this week. Only unknown is whether we will throw the kitchen sink at it and include lenvatinib. Fingers crossed that I am part of 57% and even better would be the 16% cited in the article.

 

Deb