Newly Diagnosis Endometrial Adenocarcinoma

packngo

I am 61 y/o and a mother of 3 wonderful grown children. I had been having some postmenopausal bleeding, and my ultrasound showed an endometrial stripe of 19 mm. My primary doctor referred me to a GYN doctor who completed an endometrial biopsy. Yesterday, I received a call from the GYN doctor stating the biopsy was positive for Endometrial Adenocarcinoma. I felt like I knew it would be positive because of how thick the endometrial stripe was, but hearing the words CANCER took me completely by surprise. She is referring me to a GYN Oncologist for hysterectomy/BSO/omentectomy. Now, I'm waiting for Oncology to schedule an appointment. Informed the family of the results yesterday, and they are very supportive. I am trying to stay strong for them, but I'm very nervous about what else may be found once the Oncologist starts treatment, and not knowing what to expect. I have started reading on Endometrial cancer and pre-/post-hysterectomy in hopes of empowering myself with knowledge and lessening my fears.

Trying to keep my head up,

Cora

NoTimeForCancer

hey packngo, it is all overwhelming for sure! I am glad to hear you were referred to a Gynecologic Oncologist - that is who you want and I suspect the next big step will be a hysterectomy. That will tell them a lot more on what all they are dealing with and what the treatment, in any, will be.

Be careful of old Dr Google - anything over 5 years is OLD info, but please feel free to ask anything. You are not alone.

packngo

Thank You

JaeD

I am a few weeks ahead of you. I was diagnosed March 24, had a total hysterectomy on 4/18 (robotic) and thank GOD it was found very early although it is an aggressive form so I start chemo next week and radiation June 12. It is SOOOO overwhelming! Even though there was no cancer anywhere other than the endometrial lining, they said there could be microscopic cells still present so thus the chemo and radiation. I know how you feel. It is just too much all at once.

packngo

Thank you. I wish you a speedy recovery!

NoTimeForCancer

https://csn.cancer.org/discussion/comment/1722794#Comment_1722794

Hey JaeD, if I may make a suggestion, take a breath and know this is a journey you take one step at a time. Hugs dear

packngo

My anxiety is getting higher as I finally get closer to seeing the GYN Oncologist on Jun 17th. I guess the reality of having cancer is finally catching up. The wait of finding out the stage of my cancer is the worst. Not knowing the stage and not really knowing my treatment options can sometimes feel overwhelming. All I really know is I am being seen by GYN Oncologist for hysterectomy.

I have been leaning on my faith to try to take it a day at a time and trying to stay positive for the family. I don't want them worrying about me.

This site has help me stay focus and not stress too much with all the support that is shown. I would like to thank you all for having an outlet to express our fears, concerns and questions!

NoTimeForCancer

Cora, are you taking anyone with you to the gyn onc visit? I had my BFF with me and that was comforting for me. We sat quietly, she took notes for me in a notebook, and served as my second set of ears.

You are not alone.

packngo

My daughters will be going with me. So I don't have to try and absorb all this by myself. I have start a journal to try to keep track of it all . Get the idea from one of your postings. :)

packngo

I am scheduled for my hysterectomy (ovaries, fallopillan tubes and uterus) on Jul 18th. GYN Oncologist states cancer was caught early and my only treatment should be the surgery unless something presents on the pathology report.

Looking forward to having the cancer removed but I can't help but feel nervous on what the pathology report will show.

Anxiously awaiting!

NoTimeForCancer

packngo, good to hear from you.

I remember when first meeting and talking to my gyn onc when he talked about surgery I asked, "what are you doing tomorrow?" Obviously it was a few weeks later but, like you, I was ready to get it OUT!

Please keep us posted

packngo

Finally, had the hysterectomy on Aug 8th. Followed up with GYN Oncologist yesterday. Was told the pathology report showed nothing outside of the uterus, but had 30 % invasion of the myometrium. cervix, fallopian tubes, ovaries, and lymph nodes free of neoplasia. GYN Oncologist referring me to Radiation Oncologist because of the 15 M thick myometrium invasion and cancer being a grade 3.

I'm not sure what questions to ask during my consultation with the Radiation Oncologist and where to find information on the side effects of this treatment. The only question I can think of at this time, and I have tried to find information on, is how many treatments may be required? Possible dosage of radiation? Short and long-term side effects? How does the treatment affect daily activities? work?

Since my biopsy, I've been told that the only treatment I will need is surgery, but now I am facing a new challenge and feeling like the tunnel opening is moving farther away instead of getting closer and brighter. My family has been very supportive. My adult children were there during surgery, and at least one has accompanied me to all my appointments. which has kept my spirits up, but some days (hmm)

I do realize this could be worse, and hopefully, this is as bad as it gets. Just wanted to share with someone besides family.

NoTimeForCancer

https://csn.cancer.org/discussion/comment/1724276#Comment_1724276

It is understandable to get your hopes thinking surgery was all that was needed and now to hear about getting radiation.

Did the gyn onc share what type of cancer you had? Even with it being contained within the uterus the type could determine if treatment is recommended. For example, I had aggressive UPSC and even though it was contained in the uterus, due to the nature of the cancer, I had both chemo and external/brachy radiation. Now, I don't think they do that method anymore after more clinical trials, but they should be able to point to the NCCN standard of care for your type.

I would ask about why kind of radiation they are talking about. External, which seems to be about 25 treatments (they don't last long but are everyday M-F) or brachy, internal, which seems to be about 3-5 (they don't take long either and are about once a week)

I don't tell you any of that to scare you. You are overwhelmed. I hated the thought of radiation entirely and probably was not a nice patient. It IS hard to go through and wrap your mind around. I am glad you came to share everything. I could drone on, but I have said more than enough.

Hugs dear. Take a breath. You can do this and we are here.

packngo

Pathology report states Endomertrioid Carcinoma, grade 3. The GYN Oncologist stated they will insert , what looks like a big tampon to deliver the radiation. From what I have been able to gather it sounds like brachytherapy.

As always thank you for the information. I will add it to my list of questions when I go to the consultation appointment.

MoeKay

https://csn.cancer.org/discussion/comment/1724276#Comment_1724276

Hi Cora,

I'm surprised and disappointed that since your biopsy, you were told that the only treatment you would need was surgery. I hope that didn't come from your gyn oncologist, and I wish it hadn't come from any of your providers! Twenty-six years ago, after my endometrioid adenocarcinoma diagnosis, but before my surgery, my gyn oncologist said that after surgery and pathology review, some women need no radiation, some women need internal radiation (brachytherapy), some women need external radiation, and some women need both. Because it turned out that I had a number of risk factors for recurrence, I ended up needing both types of radiation. Knowing what I might be facing upfront made the reality of hearing that I needed both internal and external radiation less of a shock. I'm sorry that whoever gave you the "surgery and done" information wasn't better informed.

Wishing you all the best.

MoeKay

zsazsa1

https://csn.cancer.org/discussion/comment/1724280#Comment_1724280

Where in the uterus was the cancer and the invasion of the wall? If it was low down, in the neck of the uterus, then brachytherapy (via the vagina) sounds right. But if it was in the top of the uterus (the fundus), have a discussion with the radiation oncologist about what is the best way to get the areas where the tumor might be likely to try to extend. Warning: my info is about 6 years out of date, because that's when I was making these decisions.

Anyways, assuming you are having radiation of any sort in the pelvic area, you absolutely MUST start on a probiotic, at least a week before you start the radiation. I had horrible, horrible diarrhea from radiation, and it was only on this board that I found out about probiotics. I added it in, and it made a huge difference. Still had diarrhea, but it wasn't every 3 minutes. And someone on here who had started it before treatment said that they had NO diarrhea at all. Afterwards, I found papers that supported the use of probiotics during pelvic radiation. I think I used the Culturelle in the pink box.

packngo

Thank you all for your support!