Serous endometrial cancer (UPSC) - please give me hope

Dearest members!

I'm from Stockholm Sweden. My 71- year old mother was diagnosed with UPSC stage II B for about 3 months ago. She underwent surgery and will have her fourth cycle of chemotherapy next week. During the chemotherapy a CT scan was performed and further investigation showed that had positive cytology in one of her paraaortic lymph nodes. As far as I know her staging is still IIB. 

I have read a lot of articles online reagarding UPSC and they all point to the fact that this type of cancer has a very poor prognosis. But I'm determined to help my mother in all possible ways and it would lovely if you members with the same type of cancer could share your stories with me. That would give me hope and strength to help my mother! 

I've read that alternative treatments like Metformin, Doxycycline and vitamin-D has a anti-cancer effects regarding studies, but are off-label. Do you have any experiences regarding this? Please share with me. 

Best regards

Anna 

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Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,353 Member
    edited August 2020 #2
    Anna, there have been lots of

    Anna, there have been lots of members with varying stages of UPSC here, some who remain NED (No Evidence of Disease) You sweet mother is a statistic of one, and she certainly raised a wonderful daughter who is out searching for things to help her.  Hopefully one of the other lovely ladies here will be along to provide some support as well.  

  • Molinari
    Molinari Member Posts: 12
    edited August 2020 #3

    Anna, there have been lots of

    Anna, there have been lots of members with varying stages of UPSC here, some who remain NED (No Evidence of Disease) You sweet mother is a statistic of one, and she certainly raised a wonderful daughter who is out searching for things to help her.  Hopefully one of the other lovely ladies here will be along to provide some support as well.  

    Thank you

    Dear NoTimeForCancer, thank you so much! I feel glad to read that there are some members with NED. It would be lovely if they could share their experiences with me. So thankful I found this community. 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited August 2020 #4
    Welcome Anna. And, thank you

    Welcome Anna. And, thank you for being such a great daughter! Your Mom is lucky to have you. Many of us on this forum have had UPSC. Much of what you read on the internet will give you old information. We have come a long way in surviving this cancer.  I think we still have some active members that were staged at level 3 or higher. Hopefully, some of them will be along to help give you the support you need. From a personal perspective, I just had my 4.5 year check up. Still all clear and I'm feeling great. 

    You mentioned using Metformin. I don't have any experience for this. However, one of our members has documented a lot of her journey and success on her page. Please check out 'Takingcontrol's journey. I think you will find it helpful.

    Please come back with any and all questions. Someone will come along to answer you.

    Love and Hugs,

    Cindi

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    edited August 2020 #5
    I was diagnosed with UPSC

    I was diagnosed with UPSC almost five years ago Stage II or III (incomplete staging) and will be five years NED next month. I had a complete hysterectomy and only made it through three chemo. I've never had a recurrence - knock on wood - and I have a decent life! This cancer is not a death sentence!! My advice is to read everything you can especially on this board. I take Metformin and don't know if it's the reason I am still here but I'm sure not going to stop. Good luck to your mother!

     

    Love, 

    Eldri 

  • Maxster
    Maxster Member Posts: 102 Member
    edited August 2020 #6
    Hello Anna

    I read your posting and because of some uncanny similarities I want to share my story.  I was diagnosed with StageIII UPSC in September of 2019.  I was 71 at the time.  I went through 6 rounds of chemo and 25 rounds of pelvic radiation.  The current preferred treatment according to doctors I saw at Memorial Sloan Kettering (a very prestigious cancer center) and UW-Madison in Wisconsins consisted of the chemo and brachytherapy of three to four rounds.  The radiation oncologist thought she saw another enlarged lymph node and suggested the full pelvic radiation.  So I went with that.  My daughter who lives in Stockholm Sweden made several trips to be with me during my treatment.  So she knows a lot about this disease. I was in such shock my kids did most of the research and I just complied until I could put my head around this.   I can try to put you in contact with her if you like.  I don't know if it would help you or not.  I am doing fine now but I kept as active as possible during treatment. It boosts the immune system and I ate lots of fiber.  I'm told now to avoid sugar as one of the cancer mutations likes it.  All based on research.  My follow-up is every three months for two years, then 6 months for three years, then annually.  My best to you and your mom.  There is lots of hope.  Don't read the Internet unless it is a site like this and always look at the dates of the information.

  • Forherself
    Forherself Member Posts: 962 Member
    Internet

    It took me awhile to realize this.  Uterine cancer.  They used to do the hysterectomy, look at it, and say this is early stage, nothing more required. So women with lower stage cancers were not fully staged, and they weren't REALLY lower stage.  If they had looked like they do now, at lymph nodes and abdominal wash, and CT scans of body they would have staged some women at a higher stage.  They do complete staging now.  But old studies include women who were not staged correctly, so it makes the lower stages look like the survival is lower than it is.  The older studies scared me too.   I try to not look at anything that is over 10 years old, and even that is old.  It would be nice to use only 5 year old information but there isn't much.  There are lots of survivors on here with your mother's stage, but they tend to drift away.  

     

  • Molinari
    Molinari Member Posts: 12
    edited August 2020 #8

    Welcome Anna. And, thank you

    Welcome Anna. And, thank you for being such a great daughter! Your Mom is lucky to have you. Many of us on this forum have had UPSC. Much of what you read on the internet will give you old information. We have come a long way in surviving this cancer.  I think we still have some active members that were staged at level 3 or higher. Hopefully, some of them will be along to help give you the support you need. From a personal perspective, I just had my 4.5 year check up. Still all clear and I'm feeling great. 

    You mentioned using Metformin. I don't have any experience for this. However, one of our members has documented a lot of her journey and success on her page. Please check out 'Takingcontrol's journey. I think you will find it helpful.

    Please come back with any and all questions. Someone will come along to answer you.

    Love and Hugs,

    Cindi

    Thank you dear Cindi

    Congratulations to your remission and for sharing your story! It is very helpful to me. What stage of disease did you have? 

    Love,

    Anna 

  • Molinari
    Molinari Member Posts: 12
    edited August 2020 #9

    I was diagnosed with UPSC

    I was diagnosed with UPSC almost five years ago Stage II or III (incomplete staging) and will be five years NED next month. I had a complete hysterectomy and only made it through three chemo. I've never had a recurrence - knock on wood - and I have a decent life! This cancer is not a death sentence!! My advice is to read everything you can especially on this board. I take Metformin and don't know if it's the reason I am still here but I'm sure not going to stop. Good luck to your mother!

     

    Love, 

    Eldri 

    Thank you dear Eldri

    Your information gives me hope! Thank you. What dose of Metformin do you take?

    Love,

    Anna 

  • Molinari
    Molinari Member Posts: 12
    edited August 2020 #10
    Maxster said:

    Hello Anna

    I read your posting and because of some uncanny similarities I want to share my story.  I was diagnosed with StageIII UPSC in September of 2019.  I was 71 at the time.  I went through 6 rounds of chemo and 25 rounds of pelvic radiation.  The current preferred treatment according to doctors I saw at Memorial Sloan Kettering (a very prestigious cancer center) and UW-Madison in Wisconsins consisted of the chemo and brachytherapy of three to four rounds.  The radiation oncologist thought she saw another enlarged lymph node and suggested the full pelvic radiation.  So I went with that.  My daughter who lives in Stockholm Sweden made several trips to be with me during my treatment.  So she knows a lot about this disease. I was in such shock my kids did most of the research and I just complied until I could put my head around this.   I can try to put you in contact with her if you like.  I don't know if it would help you or not.  I am doing fine now but I kept as active as possible during treatment. It boosts the immune system and I ate lots of fiber.  I'm told now to avoid sugar as one of the cancer mutations likes it.  All based on research.  My follow-up is every three months for two years, then 6 months for three years, then annually.  My best to you and your mom.  There is lots of hope.  Don't read the Internet unless it is a site like this and always look at the dates of the information.

    Dear Maxster, thank you

    I'm so glad to hear about your story and about the similaritiues regarding the stage of the disease and treatment. What type of chemotherapy did you have? My mother are planned to have 4 rounds of chemo - Carboplatin and Paklitaxel. Yes I would love to keep in contact with your daughter. Thank you again!

  • Molinari
    Molinari Member Posts: 12
    edited August 2020 #11

    Internet

    It took me awhile to realize this.  Uterine cancer.  They used to do the hysterectomy, look at it, and say this is early stage, nothing more required. So women with lower stage cancers were not fully staged, and they weren't REALLY lower stage.  If they had looked like they do now, at lymph nodes and abdominal wash, and CT scans of body they would have staged some women at a higher stage.  They do complete staging now.  But old studies include women who were not staged correctly, so it makes the lower stages look like the survival is lower than it is.  The older studies scared me too.   I try to not look at anything that is over 10 years old, and even that is old.  It would be nice to use only 5 year old information but there isn't much.  There are lots of survivors on here with your mother's stage, but they tend to drift away.  

     

    Dear Forherself

    Thank you for sharing this information! What type of uterine cancer and stage did you have? 

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited August 2020 #12
    Molinari said:

    Thank you dear Cindi

    Congratulations to your remission and for sharing your story! It is very helpful to me. What stage of disease did you have? 

    Love,

    Anna 

    I had UPSC stage 1A. 
     

    I had UPSC stage 1A. 

     

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    edited August 2020 #13
    Molinari said:

    Thank you dear Eldri

    Your information gives me hope! Thank you. What dose of Metformin do you take?

    Love,

    Anna 

    2000 mg per day divided into

    2000 mg per day divided into two doses. So far, so good!

     

    Love,

    Eldri 

  • Armywife
    Armywife Member Posts: 451 Member
    Dear Anna

    Just wanted to welcome you here and tell you that there is great hope! I did not have UPSC, but did have endometrioid endometrial adenocarcinoma, Stage IVB, Grade 2.  I am almost three years No Evidence of Disease.  I had surgery and then six rounds of chemotherapy.  I do take metformin, 500mg in the morning and 500mg at night. It was not prescribed by my cancer doctor, but I read the research and asked my primary care doctor for it. Blessings to you and your dear mother.  Let us know how she is.

  • Maxster
    Maxster Member Posts: 102 Member
    edited August 2020 #15
    Molinari said:

    Dear Maxster, thank you

    I'm so glad to hear about your story and about the similaritiues regarding the stage of the disease and treatment. What type of chemotherapy did you have? My mother are planned to have 4 rounds of chemo - Carboplatin and Paklitaxel. Yes I would love to keep in contact with your daughter. Thank you again!

    Hi Anna, I had the same

    Hi Anna, I had the same chemotherapy drugs as your mom had but I did have six rounds.  You might want to ask why only four rounds as that does not appear to be standard in the US.  This cancer is very sneaky and likes to leave the pelvis hence the need for chemo so the whole system gets a dose in case some cells escaped the uterus.  Did they recommend radiation?  The reason is the vaginal cuff is often the site of recurrence and radiation can stop that from happening. Can you private message me your email?  Then I can connect you with my daughter.  She is very open to hearing from you.

  • Forherself
    Forherself Member Posts: 962 Member
    Molinari said:

    Dear Forherself

    Thank you for sharing this information! What type of uterine cancer and stage did you have? 

    My story

    My story is on my blog.  2 years NED, no evidence of disease.

  • cheerful
    cheerful Member Posts: 261 Member

    Dear Anna:

      I want to give your Mom a lot of hope - she has an excellent chance of surviving this cancer.  I was diagnosed with (UPSC) Stage 1 in February of 2011 (9 1/2 years ago) and I am still here.   I did go through 6 rounds of chemotherapy and 3 rounds of radiation (brachytherapy).  The chemo is doable and the radiation is easier to go through.  I was 59 1/2 when I was diagnosed and now I am 69.  This disease does strike woman around the average age of 68 so I was on the younger side to get this disease.  The reason I survived as I had a 90% chance or survival plus my histology was good and my age was on the younger side.  I had a hysterectomy but did not have my lymph nodes removed or my omentum because my gynocologist did my surgery and afterwards he recommended I see an oncologist who he knew from the hospital where I had my surgery. My oncologist mentioned to me to treat this cancer aggressively and I took his advice and went through chemo.  I did read on the Internet that if one with Stage 1 did not go through chemo, you had a 43% chance of it reoccurring and I did not want to leave this to chance. Plus UPSC is a very sneaky cancer and it can return on the pelvic area.  After  your Mom is done with her treatments, her oncologist will probably want to see your Mom probably every 3 to 6 months and she will have to go for reoccurring cat and pelvic scans.  I have several of the cat scans of the abdomen and pelvis done through the years and I also had a couple of Pet scans done as well.  Since that time in the last couple of years, my oncologist has since semi-retired and now I see another oncologist that took over for him. He is a wondeful doctor as well as my former oncologist is as well, and they are both very knowledgeable and they each have over 30 years of experience between them.    Your Mother will most likely have to go through an oncologist visit for the rest of her life - at least once a year down the road.  I wish your Mom all the best as she goes through this cancer journey and the women on the Board here are very knowledgeable and so very helpful and great women as well if you have any questions.  I am on the Board occasionally as I am not going through treatment anymore but do check in from time to time to see how the women are doing.

    Cheerful

    a/k/a Jane

  • Molinari
    Molinari Member Posts: 12
    Maxster said:

    Hi Anna, I had the same

    Hi Anna, I had the same chemotherapy drugs as your mom had but I did have six rounds.  You might want to ask why only four rounds as that does not appear to be standard in the US.  This cancer is very sneaky and likes to leave the pelvis hence the need for chemo so the whole system gets a dose in case some cells escaped the uterus.  Did they recommend radiation?  The reason is the vaginal cuff is often the site of recurrence and radiation can stop that from happening. Can you private message me your email?  Then I can connect you with my daughter.  She is very open to hearing from you.

    Dear Maxster,

    Thank you for the information. My mother will talk to her oncologist next week and will ask about the decision of only 4 rounds of chemo. She had positive cytology in one of her paraaortic lymph nodes, so it's an important question. Yes, she will have radiation after chemo. How do you private message? It would be lovely to hear from your daughter. Thank you! 

  • Molinari
    Molinari Member Posts: 12

    My story

    My story is on my blog.  2 years NED, no evidence of disease.

    Thank you!

    I'll find your blog.

  • Molinari
    Molinari Member Posts: 12
    edited August 2020 #20

    2000 mg per day divided into

    2000 mg per day divided into two doses. So far, so good!

     

    Love,

    Eldri 

    Thank you Eldri,

    do you have problems with episodes and symtoms of low blood sugar? 

  • Molinari
    Molinari Member Posts: 12
    Armywife said:

    Dear Anna

    Just wanted to welcome you here and tell you that there is great hope! I did not have UPSC, but did have endometrioid endometrial adenocarcinoma, Stage IVB, Grade 2.  I am almost three years No Evidence of Disease.  I had surgery and then six rounds of chemotherapy.  I do take metformin, 500mg in the morning and 500mg at night. It was not prescribed by my cancer doctor, but I read the research and asked my primary care doctor for it. Blessings to you and your dear mother.  Let us know how she is.

    Dear Armywife,

    Thank you! And congratulations for being with NED. That's wonderful! I'll read more research about Metformin. I just talked to my mother about this medication and she got worried of getting episodes of low blood sugar and the symtoms following it. Do you expereince this?