Are there any survivors from stage IIIB endometrioid endometrial adenocarcinoma grade 3 out there?

Hi,

I am glad I have finally found this Forum, after months of exhausting and useless researches. I am from Italy and, as far as I know, there is nothing similar in Italian. But it’s very important to get advice and support from other women with your own experience: all of you, ladies, are really great! I apologize for errors in my post.  

My seventy year old mum started bleeding in September 2015; she had a D&C but they could not do a biopsy. She finally had a radical hysterectomy on the 20th of November 2015, but they did not remove lymph nodes (so we don’t effectively know if they were positive). Doctors told us they wanted to prevent her from lymphedema in her legs, since she is overweight. She has been on Metformin for several years, as she is diabetic  (but this illness doesn’t really cause problems to her, since her glycaemia is not very high and it’s under control)  and on Ramipril for hypertension.

The final result was she had poorly differentiated Endometriod Endometrial Carcinoma grade 3 with some nodules (metastases) in Douglas peritoneum, just behind the uterus, but they said they managed to take it all out. That’s why they staged her IIIB. Unfortunately, there was also an 80 % myometrial invasion and images of LVSI (lymphovascular involvement).

It was a real shock!

My mother is a wonderful person: she is strong and always in an optimistic mood. She went through six rounds of chemo carbo/taxol and had 28 pelvic external radiations as well. She has already had four follow up appointments:

-         a CT scan one month after her surgery (on the 29th of December 2015), jus before the beginning of chemo and it was NED! May God be blessed!

-         another CT scan after five months (on the first of June 2016), after chemo and before radiation, and this was NED once again!

-         The she had a check-up in October 2016 and they did not notice anything abnormal in the vagina and in the pelvic area.

-         At last she had a third CT scan on the 21st of December 2016 and it was again NED!

Next appointment is fixed for May 2017, unless she has troubling symptoms. 

In spite of things going well, I can’t stop wondering whether she is going to have a long-time survival or she will have a recurrence. I know no one knows, not even doctors, what is going to happen in the future. Nevertheless, I can’t help having such thoughts.

Doctors here don’t like to be asked questions such as “How long will I live? What is the survival rate?”. They just tell you what treatments you have to go through.  

You do not get any psychological and emotional support: you are left alone with your anxiety and your grief.

The only time, just a few days after the first round of chemo, I dared ask the doctor what my mum’s prognosis was likely to be, he answered: “It’s just like gambling: you have to be lucky! Cancer is a very serious disease: very few people survive (maybe 5-10%) and make it”. These words were an icy shower for me!  

For a long period, I began navigating on websites and searching for news about endometrial cancer and trials, because, in case of a recurrence, I don’t want to be taken unawares, but it has become a real addiction. My mother, luckily for her, doesn’t like Internet at all and this has saved her so far. She trusts doctors and does everything they recommend.

In the end, I would like to know if there is anyone out there with a similar situation, to share information about treatments and to receive and give support. Are there any long-time survivors from Stage IIIB Grade 3 endometrioid endometrial carcinoma out there? With this situation, is it possible, according to your opinion and experience, to hope for a long-time remission and survival?

My mum has been doing great so far: she is an example for both my brother and me.

Hugs to all of you! Thank you for bearing me.

Valentine