Endometrial cancer

FIGO Stage II in uterine cancer means the tumor has spread from the uterus to the cervical stroma, but not to other parts of the body. See https://www.cancer.net/cancer-types/uterine-cancer/stages-and-grades for more information.

However, keep in mind that while the initial pathology from an endometrial biopsy or D&C./hysteroscopy can identify the type of cancer (in your case endometrioid Adenocarcinoma), the final staging will actually take place after you've had the hysterectomy. The surgeon (which should be a gynecological-oncologist) will send tissue from the uterus, cervix, ovaries, etc. so that they can be tested to see how far the cancer may have spread. You do have the most common form of uterine cancer, although your doctor will probably recommend either radiation and/or chemo after surgery if it is confirmed that your cancer had spread outside the uterus.

I'm sorry you had to find this site, but glad that you did early in the process. I encourage you to post any further questions or concerns on the Uterine board, since that is where most women with uterine cancer post and respond to messages. There are many women there who will be happy to answer questions or share their experiences.

I just went through all radiation treatment for Endo Adeno recurrence (after 2 years clear).

I had minimal side effects in comparison to many who go through a great deal more than I experienced. But, realizing I am raw and just starting to heal, I felt a swollen area, solid, not moving, on my far left abdomen area, about 5 inches left of my belly button. There is no pain, just a slight pulling awareness of it now that I know it's there, almost feels like a muscle, but I had never really noticed it before the treatment, and certainly nothing after my total hysterectomy since two years ago. The area I am talking about is not too far from my far left robotic surgery incision.

During radiation, I also had severe diverticulitis, quite a bit further down from this swollen area.

If anyone has experienced this, or has a thought on it, please let me know.

I will be getting it checked out, but in the meantime over the weekend, would appreciate hearing if anyone has experienced this. Also, who would I go to for this to be evaluated? GP, Oncologist, or a simple clinic somewhere?

I am not permitted to have more tests with radiation since I just went through testings and then radiation treatment in the last 2 months. As you know additional radiation to the body again so soon puts someone at risk for recurrence or possibly a second cancer. I'm guessing an ultrasound would show what this is and would be safest.

Thanks

CF

Ciatab said:

Endometrial Cancer and Hysterectomy

I was diagnosed with endomtrial cancer and had a hysterectomy in December.  Not I am on a taxo/carbo chemo treatment once every three weeks.  I had my 2nd infusion and my next is scheduled for next week thursday.  So far, I belive that my side effects have been minmized by my heavy juicing and smoothie diet that I had adopted.  I started taking vitamins also to build myself since I started takig chemo exactly 1 month after surgery.  But, Im learning that maybe if I continue I could also be lessening the effect of the chemo so I am going to stop until I talk to my oncologist next week. But while them, I only lost 10 pounds so far.  All my hair is gone, and my fatigue is less. My bones have been on fire after the injection but I found that Claratin helped reduce the pain and let me sleep.  This week, my hands have started itching not constant but intermittingly.  So far I think that I am tolerating the chemo and I hope that with infusion #3, my side effects will still be minimum. 

Ciatab, while it's good to hear that your side effects from chemo have been manageable so far, I'm concerned that the "itching" you're experiencing may be the start of neuropathy that many women, including myself, developed as a result of our chemo treatment. Some women on the Uterine board have described how they "iced" their hands and feet to prevent neuropathy. While there has been several discussions about icing on the Uterine board, here's one that received a number of comments:

"Cryotherapy May Help Prevent Neuropathy Caused by Taxol Chemotherapy" at https://csn.cancer.org/node/320206

I invite you to post any questions or comments on the Uterine board as there are many women who can share their experiences with endometrial cancer with you.

Cancer.org Username said:

Vaginal Brachytherapy

Was diagnosed with Stage 1B endometrial cancerwith 71% invasion and had a total hysterectomy 8 weeks ago.  Am supposed to start Brachytherapyinafew days and am very hesitant.  Iam 70 years old, have Graves disease so immune system is compromised and Full Blown Osteoporsis.  Have diarrhea issues currently so do not need to have more.  Just wondering if the side effects are worth it.  Do not really want to use a vaginal dilator for the rest of my life.  Any one know what the difference in survival rates are with and without having the radiation.   Thank you.

I know exactly what you are facing. I was diagnosed with Stage 1 Figo 1 Endometrial cancer two years ago. After that, I only had three to six month Pap's and examinations, no tests. But, I just had a recurrence discovered in September, 2019, have had 25 external radiation treatments, followed by 3 brachytherapy treatments a week following the external.

What I will share, is from my own experience. I hope it helps you find some peace and encouragement.

Something I wish my oncologist had done is do a PETscan at about three months after my total hysterectomy surgery, because I think a lot of external radiation could have been avoided. Radiation that made me quite unwell after my third week in treatment. 

I had Robotic surgery, and due to the fact that all of my female parts had to be brought down through the vag area, I have a sneaking suspision that a small splash occured, from the uterus, causing cancer to grow again in my vag. The good thing is that the kind of cancer I had, is quite slow growing, the very disappointing thing is that I have had the recurrence, and had to go through what maybe could have been avoided IF I had received Brachytherapy to insure every cancer cell  was destroyed, giving me the chance to remain in the clear. I have researched and I am a strong believer now in following surgery with Brachytherapy. I know Brachy treatment sounds awful, and I advise women that they should not believe what they read on the internet, as it is not always true regarding treatment.

I am a senior also, and I believe if I had been treated with Brachy after surgery, I would not be writing this post about recurrence.

Here's how it worked for the brachytherapy.

I was so scared..........so a word to anyone who is facing the pros and cons of whether or not to do the Barachytherapy.........no need to be scared. It is NOT painful, and is very tolerable.

The worse part for me was the embarassment of the fitting of the cylinder. You see, I did not have to go into the hospital and have the radiation seeds planted in near the cancer area in my vag (another form of Brachy). I had a cylinder that was inserted into my vag, the same for many women who have had a hysterectomy because of cancer, or cervical cancer, etc. 

OK......so I was brought into the room where the fitting took place. All done by my Radiology Oncologist, and two assistants, one being a woman. There was a choice for size of the cylinder, and I could see it went from a thinner looking tampax size to a thicker, larger tampax size. Apparently it is best if the cylinder is larger, fitting tighter, but, they do not want you to feel uncomfortable, so sometimes a smaller cylinder is inserted. Mine was larger, and I certainly tolerated it well. 

After I changed into a gown, leaving on my clothes from the waist up, and removing all but my socks from the waist down, I was told to lay on the table that sticks out of the CT Simulator. I was covered over with a sheet, as I waited for the Dr to come in and fit the cylinder. The simulator is just identical to a CT scanner, a CT donut that is totally open on both ends, head to feet. I'm chlostraphobic, so it was very fine for me. After the cylinder is put in, with some librication, one has to lay still, and a pillow is placed to support the back middle area of the legs. Then, everyone exits the room, and go into their picture taking room. They scan the patient, and make sure the cylinder is in place correctly. Then two men, with the other two rediology assistants, scoot the patient over from the CT table, to a rolling bed. I was not allowed to move in the cylinder area. Then one is rolled from the simpulation room, to a holding room for about 45 minutes to 1 hour, while they form a plan for the radiation. Obviously, the person cannot go to the bathroom, so I usually made sure I was urine free before getting on that CT simpulator table. Also, if I had the runs that morning, or felt I might, I took one imodium to make sure I could stay on the rolling bed for the duration of the wait. That worked perfectly.

Then, the next step is easy. I was rolled to the radiation treatment room after the wait, a few little wires were attached to the outside of the cylinder, and I was radiated for about 10 minutes, while the TV above me played.

After they were finished, I was rolled back to the simulation room, and got up and changed my clothes and went about my day.

The side effects have been mild, but then I also had heavy radiation 25 times when I had the external and side effects. Right now I have some swelling in the bottom of my legs, four week post brachy. It has to do with my lymphatic system being sluggish, but I am doing fine, out and about each day, and have a reflexologist that does lymphatic drainage through accupresure.

I had some diarrhea, but I took care of it by taking probiotics each day (50 billion strong) PRIOR to any treatment, and Aloe Vera juice 2x's per day, straight. My health advisor at the health food store also told me to take Vitamin D for my bones, at least 1000 m, and C is supposed to be good also. It's all pre treatment and well worth it.

The dialator is not difficult. just twice a week. It's nothing to be bothered about doing. It's not a hassle at all.

You asked about the survival rate difference in having brachy and not. I guess I don't look at that, as much as I look at doing all I can do to head any recurrence or spread off at the pass. I would say anyone who decides to not have the brachy, should definitely at least have a PETscan done, when they would have normally been starting their treatment,  to make sure there is no spread. Survival is based on so many factors, and regardless, endometrial cancer patients often do not pass away because of the cancer, but rather heart issues or secondary cancers. I want to know I am in the clear, and that will set me up for more of a chance for longer survival. Exercise, watching weight, stress free life, and having a positive attitude catapults every cancer patient forward towards healing. I've begun to be proactive in these areas, but have a lot still to change to make it happen......but I am determined to send this vile disease back to where it came from!!!!!!

Let me know if I can share anything more to encourage you.

I wish you God's peace and clarity to make the right decision for you. I've come to realize, my journey has been so different than all the reports and advice I have read. I pray all who face treatment and decisions, will know the presence of God all around them. He has been so good to me.

Take care. You will be in my prayers for sure.

I'm new, and have a cancer recurrence a year and a half after a complete hysterectomy and internal radiation.  I have refused chemotherapy after going to University opf MI and MD Anderson--there's full agreement that it is fatal, and that chemo is not likely to provie me more good quality life. 

My medical professionals and family are all respectful of my choice, though some dear friends are pushing me to reconsider.

I'm getting good palliative care, and following a low-carbohydrate diets and planning my nutrients to improve quality of life...trying to balance meds with clarity of mind and activity level.

I'd like to commumnicate with others who have decided not to get chemo....  Or those with experience with recurrent and uncurable female cancers....  Or anyone who wants to talk

LeonoraJ,

I'm sorry you're in this position, but it sounds like you're getting the palliative care you need right now. While there have been women on the Uterine Board (where I normally post) who have decided against chemo and/or radiation, either during their initial treatment or after a recurrence, often these women stop posting as they make the decision to stop treatment. So I don't know of anyone who is currently posting that is in the same position as you are, except for one women whose son posts on her behalf.

But there may be others who still read the posts, but don't chose to participate in the discussions anymore. So please fee free to post your message on the Uterine Board at https://csn.cancer.org/forum/189 to see if you can reach any of the women there who are in the same situation as you. If we can help, we will.

Dear LeonoraJ and Rage, I totally respect your decisions and hope your loved ones support you.  None of this is easy and what you need is love. My mother chose not to pursue any treatment in her cancer journey and that was her right.  Peace dear ladies!  

Hello Leonora J,

I was diagnosed in July 2015 with Mesonephric Endometrial Adenocarcinoma and Sarcoma of the Uterus. So rare, my dr had never heard of it. It was a very aggressive tumor that had been misdiagnosed for 6 months by my previous gyne. By the time it was found, it was already the size of a plum! It didnt show on any of the PAP tests, or Internal Ultrasounds (had 3) I went for a 2nd opinion because I started bleeding. They did a biopsy right away and sent it to Cleveland Clinic for a correct diagnosis. I had robotic surgery, complete hysterectomy and very high doses of Brachytherapy with a large cylinder. I looked at the size of the cylinder and was petrified. Mine did hurt, because the cylinder pressed against my rectum area. I refused the chemo also. The dr was very upset with me, but my daughter in law works for MD Anderson in Houston and I talked to her about it. They do not give me regular scans, infact my surgeon retired. The next gyneoncologist left! So I went out on my own and see a gyne yearly. I requested 2 scans on my own because every strange lump or pain I freak out! I also trust God, that has been my strength. August 27, I will be 9 years clear. Counting my Blessings.