UPSC new study results

BluebirdOne

https://ascopubs.org/doi/abs/10.1200/JCO.20.00549

 

Molecular Classification of the PORTEC-3 Trial for High-Risk Endometrial Cancer: Impact on Prognosis and Benefit From Adjuvant Therapy

I have the p53 mutation, 70% of serous have the p53 mutation which has a poorer prognosis. Does this explain why some UPSC survive and so many dont?       

I will be discussing this with my oncologist at my October visit.                           

EZLiving66

I'd be very interested in

I'd be very interested in what your doctor has to say since I have UPSC and was diagnosed in September 2015.

Love,

Eldri

LisaPizza

I wonder if/when we'll

I wonder if/when we'll routinely get a prognostic assay like they have for breast cancer (Oncotype) to help determine who needs chemo and who can avoid it.

Forherself

Thanks for sharing.

Yes I am p53 positive too.  I have known this all along.  But it would be nice to have all the other tests done too.  It would help make treatment decisions.  I did know this when making my decision for no treatment.  I am two years NED.

NoTimeForCancer

All good comments!!  My

All good comments!!  My surgery was in 2012 and in 2019 (I think?) I was asked if I wanted them to test my sample for Lynch syndrome.  It was not a standard test back then but it is today.  Lynch symdrome is not new, and I don't know when they added it to the 'standard' screening.  There is so much that still needs to be done!!!!!

BluebirdOne

NoTimeForCancer said:

All good comments!!  My

All good comments!!  My surgery was in 2012 and in 2019 (I think?) I was asked if I wanted them to test my sample for Lynch syndrome.  It was not a standard test back then but it is today.  Lynch symdrome is not new, and I don't know when they added it to the 'standard' screening.  There is so much that still needs to be done!!!!!

I thought it was enlightening.

I received the p53 dx from my original hysteroscopy, confirmed by my GO. I also had Lynch testing done at hysterectomy due to a familial history of colon and lung cancer, neither were early onset, I am negative for Lynch but they could not rule it out because 5% do not have typical presentations.  They tested my tumor for HR2 status and I am negative. I think the biggest takeway from the article was that while p53 is prevalent in UPSC it is certainly not new information, those who had the Pole mutation had a much, much better prognosis, which could explain why some with UPSC do well while many do not. It is not a monolithic cancer. I was 1a, UPSC and have not recurred, so I have not needed to have the other genomic/genetic tests yet. The treatment for UPSC 1a is all over the map, some docs will only do observation, some go for the full treatment. With this information it seems it might be possible to determine who would benefit from a more aggressive treatment regimen and for whom it was unnecessary. 

Denise  

Maxster

One thing I noted

In this study, the women received a different chemo regimen than is recommended by the two centers where I received second opinions: MSK and UW-Madison.  I received 6 rounds of carboplatin and taxol and because of some pecularities 25 EBRT.  The recommended protocol is vaginal brachytherapy 3-4 times in the weeks between infusions.  MSK felt it was important to get the chemo without interruption because of the way this cancer spreads.  This might affect their results.

BluebirdOne

It is so interesting to learn about

all the different protocols. I had only 4 rounds of chemo, as scheduled, not 6, but had brachy just before my last chemo, with no interupption to my chemo schedule. The sandwich, with no interuption. I know that they needed to get the chemo going within a few weeks after surgery, mine was 4 weeks. With pelvic radiation covering 25-30 days, I assume they would have to stop chemo to do a sandwich treatment, or just do it after chemo was completed. I had three treatments in a week before my last chemo, so there was no interuption. 

Frances081920

clinical trial

I too would be interested in what your oncologist says, I have the P53 mutation too.

Diane The Fighter

Forherself said:

Thanks for sharing.

Yes I am p53 positive too.  I have known this all along.  But it would be nice to have all the other tests done too.  It would help make treatment decisions.  I did know this when making my decision for no treatment.  I am two years NED.

Hi referencing your UPSC P53

Hi So happy for you on NED

I too have this UPSC just diagnosed on the 30th of Sept and my surgery is Oct 22, I have grade 3 and the P53 and P16 strongly positive..... May I ask what grade you had? I have not yet been staged but I am afraid it is very advanced due to the symptoms I have with a HUGE belly and intense constant pain.... My Uterine thickness is 40mm so that is horrible my OBGYN said when he did my Biopsy I am terrified... what treatment did you do? I am so scared any advice?

Thank you!! God Bless

Forherself

Diane The Fighter said:

Hi referencing your UPSC P53

Hi So happy for you on NED

I too have this UPSC just diagnosed on the 30th of Sept and my surgery is Oct 22, I have grade 3 and the P53 and P16 strongly positive..... May I ask what grade you had? I have not yet been staged but I am afraid it is very advanced due to the symptoms I have with a HUGE belly and intense constant pain.... My Uterine thickness is 40mm so that is horrible my OBGYN said when he did my Biopsy I am terrified... what treatment did you do? I am so scared any advice?

Thank you!! God Bless

I have a blog

If you click on my name, you can see a list of options .  I put my story on the blog as I feel it is a little more private.  You are in such a hard time right now with the unknown and the waiting.  I am confused about the Grade system.  I was first diagnosed with a preursor to Endometrioid endometrail cancer, and then they changed it to a precursor to serous carcinoma, so Iam high grade.  I hd no malignancy in the hysterectomy specimen.  It is the only stage that no treatment is an option for.  When they told me I could recur even if I had treatment, I chose no treatment.  They don't really know if women with my stage need treatment.  It has been two years with no recurrence.  I remember the time waiting though, and it was very frightening.  We all understand how you feel.  Try and keep busy.  And I always advise women to try and do something new, or go someplace new.  So many places are associated with your emotions.  I found even sleeping in a different room gave me relief from my worry.  There is lots of information here about the hysterectomy and recovery.  I would focus on that.  You can use the search function.   It seems like they are making you wait a long time for your surgery.  Is there any way you can have it sooner?  I would make that my project too.  We are here for. you!  Hugs.

Sue

thatblondegirl

Dear DianeTF,

I'm glad to see you post again as I was worried about you! I hope your surgery goes well on the 22nd. And as I remember a GYN/ONC is going to do it. That's the best.

Youve probably figured it out already...but the best way to see what we've gone through is to read our Amout Me pages or blogs found by clicking on our names on our posts. And read through the threads! There is a lot of information and most importantly, great reason for hope!! I'm very early in this most unwanted journey, but I've found so much love, support, help, and hope here.

Please keep us posted!

Alicia

Ag123

I read something about type 2

I read something about type 2 uterine cancer having a link to p53 mutations and poorer prognosis... which I don't know whether it's because of the more aggresive nature of the disease or maybe because not all patients end up recieving appripriate treatment in time. 

It seems very interesting. Would love to know what your oncologist says!

Forherself

Great article on P53

I just read 3 paragraphs of this article, but it really explains the function of the P53 gene, and what its loss means.  When we have the mutation, it means the P53 is broken or missing.   https://medicalxpress.com/news/2019-07-p53-mutations-cancer-patients-gene.html

RitaBjerksett

Diagnosed with stage 4 upsc in January 2020

I was diagnosed with rectal cancer in Feb 2010 and had a transanal excision and that same year diagnosed with lung cancer in September. Two separate cancers. I Thank God, my family and friends that I was 10 years cancer free until i was just diagnosed with stage4 uterine papillary serous cancer in January 2020. Went through complete hysterectomy, then started chemo, but was interrupted when i unfortunately tested positive for covid. Thank God made it through that and resumed chemo. Had one session left but was diagnosed with stage3 chemo induced neuropathy in my feet and hands. I was then scheduled to have brachry radiation but during a biopsy dr. Discovered I had separation of the vaginal cuff and had surgery to repair. During surgery it was discovered i had to much damage to the vaginal area and due to previous years radiation i would not be able to have radiation. I am to have a cat scan at the end of month to see if i have had any changes from my current masses which i pray have not grown or spread. I Thank God for each and every day and pray that I find another treatment. Currently waiting to hear from md Anderson if there are any trials for this type of cancer. I am new to this site and thoroughly enjoyed reading all the posts. I feel i am not alone in my fears,frustrations and where to turn. God bless and prayers to all..

 

 

 

 

RitaBjerksett

Diagnosed with stage 4 upsc in January 2020

I was diagnosed with rectal cancer in Feb 2010 and had a transanal excision and that same year diagnosed with lung cancer in September. Two separate cancers. I Thank God, my family and friends that I was 10 years cancer free until i was just diagnosed with stage4 uterine papillary serous cancer in January 2020. Went through complete hysterectomy, then started chemo, but was interrupted when i unfortunately tested positive for covid. Thank God made it through that and resumed chemo. Had one session left but was diagnosed with stage3 chemo induced neuropathy in my feet and hands. I was then scheduled to have brachry radiation but during a biopsy dr. Discovered I had separation of the vaginal cuff and had surgery to repair. During surgery it was discovered i had to much damage to the vaginal area and due to previous years radiation i would not be able to have radiation. I am to have a cat scan at the end of month to see if i have had any changes from my current masses which i pray have not grown or spread. I Thank God for each and every day and pray that I find another treatment. Currently waiting to hear from md Anderson if there are any trials for this type of cancer. I am new to this site and thoroughly enjoyed reading all the posts. I feel i am not alone in my fears,frustrations and where to turn. God bless and prayers to all..

 

 

 

 

Forherself

Diane The Fighter said:

Hi referencing your UPSC P53

Hi So happy for you on NED

I too have this UPSC just diagnosed on the 30th of Sept and my surgery is Oct 22, I have grade 3 and the P53 and P16 strongly positive..... May I ask what grade you had? I have not yet been staged but I am afraid it is very advanced due to the symptoms I have with a HUGE belly and intense constant pain.... My Uterine thickness is 40mm so that is horrible my OBGYN said when he did my Biopsy I am terrified... what treatment did you do? I am so scared any advice?

Thank you!! God Bless

Thinking of you

I hope all went well.  Surgery recovery is one thing,  waiting is hard too. I hope your news is good.

 

Forherself

RitaBjerksett said:

Diagnosed with stage 4 upsc in January 2020

I was diagnosed with rectal cancer in Feb 2010 and had a transanal excision and that same year diagnosed with lung cancer in September. Two separate cancers. I Thank God, my family and friends that I was 10 years cancer free until i was just diagnosed with stage4 uterine papillary serous cancer in January 2020. Went through complete hysterectomy, then started chemo, but was interrupted when i unfortunately tested positive for covid. Thank God made it through that and resumed chemo. Had one session left but was diagnosed with stage3 chemo induced neuropathy in my feet and hands. I was then scheduled to have brachry radiation but during a biopsy dr. Discovered I had separation of the vaginal cuff and had surgery to repair. During surgery it was discovered i had to much damage to the vaginal area and due to previous years radiation i would not be able to have radiation. I am to have a cat scan at the end of month to see if i have had any changes from my current masses which i pray have not grown or spread. I Thank God for each and every day and pray that I find another treatment. Currently waiting to hear from md Anderson if there are any trials for this type of cancer. I am new to this site and thoroughly enjoyed reading all the posts. I feel i am not alone in my fears,frustrations and where to turn. God bless and prayers to all..

 

 

 

 

Welcome

So sorry you  are having such a time with your treatment, and everything else!  So many questions and you don't have to answer all of them.  You can answer them in your own head.  Have you been tested for Lynch syndrome?  It sounds like you have been through so much, and are still so focused and positive.  I am guessing your previous radiation was for the anal cancer 10 years ago?   And did you have chemo and radiation 10 years ago?  I am wondering too if you tried icing during chemo.  I am so sorry to hear about your neuropathy too.  Hopefully your CT scan will be good and you will find a treatment.  It sounds to me like your anal and lung cancers were NED for 10 years.  Hopefully you can do the same to your serous endometrial too.  We do have women who have survived a long time with this.  

Forherself

RitaBjerksett said:

Diagnosed with stage 4 upsc in January 2020

I was diagnosed with rectal cancer in Feb 2010 and had a transanal excision and that same year diagnosed with lung cancer in September. Two separate cancers. I Thank God, my family and friends that I was 10 years cancer free until i was just diagnosed with stage4 uterine papillary serous cancer in January 2020. Went through complete hysterectomy, then started chemo, but was interrupted when i unfortunately tested positive for covid. Thank God made it through that and resumed chemo. Had one session left but was diagnosed with stage3 chemo induced neuropathy in my feet and hands. I was then scheduled to have brachry radiation but during a biopsy dr. Discovered I had separation of the vaginal cuff and had surgery to repair. During surgery it was discovered i had to much damage to the vaginal area and due to previous years radiation i would not be able to have radiation. I am to have a cat scan at the end of month to see if i have had any changes from my current masses which i pray have not grown or spread. I Thank God for each and every day and pray that I find another treatment. Currently waiting to hear from md Anderson if there are any trials for this type of cancer. I am new to this site and thoroughly enjoyed reading all the posts. I feel i am not alone in my fears,frustrations and where to turn. God bless and prayers to all..

 

 

 

 

If you want more replies

Go to our main page and under the words uterine cancer, it says start a new topic.  If you do that everyone will see your post.  Not many people will see your story here

 

pato58

RitaBjerksett said:

Diagnosed with stage 4 upsc in January 2020

I was diagnosed with rectal cancer in Feb 2010 and had a transanal excision and that same year diagnosed with lung cancer in September. Two separate cancers. I Thank God, my family and friends that I was 10 years cancer free until i was just diagnosed with stage4 uterine papillary serous cancer in January 2020. Went through complete hysterectomy, then started chemo, but was interrupted when i unfortunately tested positive for covid. Thank God made it through that and resumed chemo. Had one session left but was diagnosed with stage3 chemo induced neuropathy in my feet and hands. I was then scheduled to have brachry radiation but during a biopsy dr. Discovered I had separation of the vaginal cuff and had surgery to repair. During surgery it was discovered i had to much damage to the vaginal area and due to previous years radiation i would not be able to have radiation. I am to have a cat scan at the end of month to see if i have had any changes from my current masses which i pray have not grown or spread. I Thank God for each and every day and pray that I find another treatment. Currently waiting to hear from md Anderson if there are any trials for this type of cancer. I am new to this site and thoroughly enjoyed reading all the posts. I feel i am not alone in my fears,frustrations and where to turn. God bless and prayers to all..

 

 

 

 

Hi Rita,

So many upsets in your life, especially during this infamous 2020!
It is good that you found us