Serous endometrial cancer (UPSC) - please give me hope

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 

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 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 two doses. So far, so good!

Love,

Eldri 

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 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 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