living with cancer

[WTLS]

In July, I started bleeding. I immediately called my gynecologist. They did an ultrasound and scheduled a follow up. At the follow up, she did as biopsy; the following day she called to let me know it was cancer and referred me to an oncologist. The oncologist did a complete hysterectomy and removed 2 lymph nodes. Turns out it was carcinosarcoma Stage II almost 40+ percent into the endometrium between the uterus and cervix. I am having Chemo now.

[Bootz2023]

Welcome to the group. I was diagnosed almost 3 years ago. I had a complete hysterectomy with several lymph nodes removed. I was stage 2 grade 3 (LVSI and myometrial invasion over 50 percent). I had 5 weeks of external radiation with a day of cisplatin each of those 5 weeks. Followed up with 3 bracetherapy .

I hope you will join the support group. It’s a place to learn and spend time with others who understand what you are going through.

Please reach out if I can help in anyway as you travel through this journey which is so overwhelming in the early stages but gets easier with support and knowledge.

[WTLS in reply to Bootz2023]

Thank you for sharing your story. I appreciate the words of encouragement. I have signed up for the support group. Have a blessed day.

[FierceFriend in reply to Bootz2023]

To WTLS: Bootz2023 is right about the overwhelming aspect of this journey. My 2022 story is similar - bleeding, hysteroscopy, diagnosis, hysterectomy + lymph node removal, chemo, pelvic radiation, and brachytherapy. During chemo for my aggressive type of cancer I had metastasis. Honestly, I was living one moment at a time that first year. After treatment ended I had some bumps in the road including a pelvic insufficiency fracture (healed) and GI issues (mostly under control.) The emotional toll is huge and I still battle fear of recurrence, which I have learned to keep to myself because it upsets anyone I might say it to. The experience has changed my priorities; I now focus on family & true blue friends while saying no to activities & people that don’t bring me joy or who tell me how they think I should be living my life. The worries are not as all encompassing as they used to be, but they are never gone. We all do our best.

Wishing you both well!

[Bootz2023 in reply to FierceFriend]

I so agree - the fear of recurrence always has a small part of my mind. A little less now but always on the surface. I think as I have learned more and understand all the new treatment options I feel a little better. I believe treatments have really changed.

If you ever want to worry or talk about recurrence fears I’m hear. Everyone wants you to stay positive but only one with cancer can really relate to the fear.💗

[FierceFriend in reply to Bootz2023]

Your full understanding is so appreciated. Your last sentence says it all. Many thanks!! 😊

[LoveHighlands]

absolutely, the fear doesn’t really seemed to be understood as well as by those of us along the journey do.

It has been on my mind alit lately because I just heard that insurance usually no longer allows for a follow-up CT scan to monitor for recurring cancer since I’m out 5 years. Arrggghh. I feel like I’m Charlie Brown and Lucy. Has ranked the football away again!

[WTLS in reply to LoveHighlands]

Thank you for the words of encouragement. Crazy that insurance gets to make health decisions and grossly unfair. I’m trying to take this journey one day at a time. Some days are easier than others. It is overwhelming and a lonely journey. I do appreciate talking with and learning from others who’ve experienced cancer. Prayers and positive thoughts for all of you.

[Bootz2023 in reply to LoveHighlands]

Congrats on being 5 years out. Insurance dictating our health is so maddening!

[Kathy_SHARE Moderator Ambassador]

Hi, I was diagnosed in 2015 with endometrial cancer, Stage A serous type. I was postmenopausal and had an unusual vaginal discharge but no bleeding. I saw my GYN who ran some tests and God bless her, left no stone unturned in trying to find out what this was. She found endometrial polyps and referred me to an oncologist. After the surgery to remove them, the pathology report came back positive for cancer. Had hysterectomy+removal of 16 lymph nodes, tubes and ovaries. This was followed by chemo and brachytherapy, plus CT scans for a few years.

I have been well for a long time but always waiting for the other shoe to drop. Fear of recurrence is always in the back of my mind, but I try to live my life without dwelling on it. Since I was diagnosed treatment for uterine cancer has come a long way.

We all understand how scary this time is, and I would welcome you to register for one of our support groups. You will find a group of great women who understand and can share their experiences. No one should ever have to deal with this alone.

Wish you all the best!

[Fulana]

Hello WTLS;

You going to be okay.

I’m like anyone here, fear on a recurrence any pain I feel , I think is back.

Same as you had endometriosis stage 2 I had 25 external radiation and 3 bracha (internal) radiation and a total hysterectomy, this happened on the worse time in 2020.. was tough been away from everyone and going through by my self.

I been experiencing lower pains like period cramps here and there , I had CTscan and nothing to worry but I’m always in fear especially went I feel the pain., they said could be scars from the radiation..

But by December this 2025 I will be 5 years..

We just has to live to the fullest and worry less, hard to do.

But any time I here for you.

[WTLS in reply to Fulana]

Thank you for the words of encouragement. Means more than you know. Did you have any serious long term side effects from the radiation. My oncologist is balking at radiation because of potential side effects. All information is appreciated as I feel so alone and scared.

[Fulana in reply to WTLS]

In my case, so far I can eat anything I want, but sometimes I get upset stomach so I started on medication for acid reflux.

Like I said some days I feel this paint that feels like cramp period and they said to me is from the radiation scars (but also had two c-sections .. so for me is a lot of scars on my pelvic area..

So far that’s my only problem after the radiation but I had 25 treatments only, i heard from here people have more problems went is more treatment 🤷🏻‍♀️

I had my bone density just last month and they told me I have osteopenia (that’s really common after menopause )

I thought I was going to have osteoporosis but not yet..went u get radiation this is one effect. But so far I had radiation five years ago .

Do you know how may treatments you going to need.

Also they told me is a window frame after the operation to get radiation treatment because if you wait to long it won’t help..

I thought I was not going to need it because one doctor said no necessary but I had two doctors actually I went for a third opinion for me to get the radiation.

And they agreed because it was touching the walls of the uterus.

Tell me doctors said? Get a few opinions.

blessings