1. < Gynecologic Cancers
Mentor

Endometrial Cancer: Noticing my blessings every day

Posted by Helen, Volunteer Mentor @naturegirl5, Aug 20, 2019

I was diagnosed with Endometrial Cancer, FIGO Grade 1 in late July. I live in the Upper Peninsula of Michigan and asked for a referral to Mayo. A few days after the referral, I met with my GYN-Oncology team, and a few days after that I had a radical hysterectomy at Methodist Hospital. The surgery was two weeks ago today. I am grateful that I had the means to go to Mayo Clinic, for my surgeon and her incredible team, and that I am now back home on this gorgeous day surrounded by support and love from my family and friends. (The cancer was staged Ia - caught very early and no other treatment is recommended). My life is a gift for which I am very grateful.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

stparker54 | @stparker54 | Jul 29, 2020
In reply to @starko "My incredible Mayo gyn/oncology/surgeon claims this test is a better indicator then CA125. When I was..." + (show)
@starko

My incredible Mayo gyn/oncology/surgeon claims this test is a better indicator then CA125. When I was first diagnosed myHE4,S was high (722) and with each chemo session, I watched it come down finally to 54 so we knew chemo was working. My local oncology does not use this test, but now he does! It is the same blood draw (hope you have a port) so please ask for it. I get both these tests every two weeks.

Jump to this post

I mentioned the He4S test to my doctor's nurse today. She was unfamiliar with it. I don't have a port. They said I didn't need one. They said I would have had to enter the hospital to have the port done. I've been to the hospital enough this year so I was glad. Some good news today: My CA-125 tumor marker has fallen to 24.8 from 38.7.

REPLY
1 reply
starko | @starko | Jul 29, 2020
In reply to @stparker54 "I mentioned the He4S test to my doctor's nurse today. She was unfamiliar with it. I..." + (show)
@stparker54

I mentioned the He4S test to my doctor's nurse today. She was unfamiliar with it. I don't have a port. They said I didn't need one. They said I would have had to enter the hospital to have the port done. I've been to the hospital enough this year so I was glad. Some good news today: My CA-125 tumor marker has fallen to 24.8 from 38.7.

Jump to this post

Great news on the CA125. CHEMO IS WORKING! My port was put in ( in the hospital) to enable the chemo treatments, as well as the blood draws! Maybe you donot mind the arm stabs but I did. They had trouble locating my veins. Remember to keep getting blood draws (CA125) even after you have recovered. They told me to expect a recurrence of cancer after my chemo was done. 75-90% probability, but maybe that was for ovarian cancer in the late stages only.

REPLY
1 reply
stparker54 | @stparker54 | Jul 29, 2020
In reply to @starko "Great news on the CA125. CHEMO IS WORKING! My port was put in ( in the..." + (show)
@starko

Great news on the CA125. CHEMO IS WORKING! My port was put in ( in the hospital) to enable the chemo treatments, as well as the blood draws! Maybe you donot mind the arm stabs but I did. They had trouble locating my veins. Remember to keep getting blood draws (CA125) even after you have recovered. They told me to expect a recurrence of cancer after my chemo was done. 75-90% probability, but maybe that was for ovarian cancer in the late stages only.

Jump to this post

How often do you get the CA-125 test? That's a high probability of recurrence. I was told that if my cancer - clear cell endometrial cancer - were to recur, it would happen within the first 2 years.

REPLY
1 reply
starko | @starko | Jul 29, 2020
In reply to @stparker54 "How often do you get the CA-125 test? That's a high probability of recurrence. I was..." + (show)
@stparker54

How often do you get the CA-125 test? That's a high probability of recurrence. I was told that if my cancer - clear cell endometrial cancer - were to recur, it would happen within the first 2 years.

Jump to this post

I get a blood draw every two weeks, measuring CA125 and HE4,S, as well as the general stuff, blood count, etc.

REPLY
stparker54 | @stparker54 | Jul 29, 2020

When I'm done with chemo and radiation

REPLY
stparker54 | @stparker54 | Jul 29, 2020

When I'm done with chemo and radiation, I'm going to have to have the tests done regularly.

REPLY
starko | @starko | Oct 18, 2020
In reply to @stparker54 "This is an unrelated question. I heard you mention HE4,S before. Should I ask my doc..." + (show)
@stparker54

This is an unrelated question. I heard you mention HE4,S before. Should I ask my doc to do this test? If so, why? What would it tell me? I'm already getting the CA-125 test.

Jump to this post

My oncologist at Mayo thinks the HE4,S is more indicative of cancer than CA125. Both are good. The more intel we have, the better to make the right decisions.

REPLY
mindyg | @mindyg | Oct 28, 2020
In reply to @stparker54 "I have clear cell cancer of the uterus (endometrium). I had a hysterectomy and I just..." + (show)
@stparker54

I have clear cell cancer of the uterus (endometrium). I had a hysterectomy and I just got the pathology report. My cancer spread from my lower uterine segment to my cervical stroma, which makes it FIGO Stage II. There was some myometrial invasion (40%); pelvis lymph nodes were negative. I have to have six sessions of chemotherapy now (one session every three weeks), which will be followed by external and internal radiation. After I go through all of this, the cancer may return. I feel like I've just received a death sentence. Susan54

Jump to this post

I had the exact same diagnosis and it only penetrated my myometrial 14% I am trying to decide if I want to do the chemo and radiation since the chance of it coming back with nothing is only 20%. How bad is that chemo I hear its bad

REPLY
stparker54 | @stparker54 | Oct 28, 2020

The chemo is not bad. I have not had any nausea, only weakness for a few days after the chemo treatment. If I were you, I would do the chemo and radiation. I think it gives you the best chance to beat this cancer stparker54

REPLY
mindyg | @mindyg | Oct 28, 2020

I had no spread everything was clear 14%invasion into my myometrial wall nothing even in the wash out. 20% chance of reoccurance with no treatment 10% with treatment. Its a tough decision

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.