Clear Cell Endometrial Carcinoma: Rare, aggressive, hard to treat

Hello @kate123. I am sorry for your health travails. It is not an easy road you are on. My wife did not have the same cancer as yours, but she had brain cancer. After her surgery to remove as much of her tumor as was possible (on an emergency basis) she too was caught between the feelings you describe. By the way, I was her primary caregiver for her during her 14 year cancer journey so these words and views are from me.

During many of our talks over the years she would frequently tell me, although many well-meaning folks would tell her to 'ignore your cancer and just live your life', she was not able to do that. She always knew it was there, but chose to have as her mantra 'today I will try to do what it is I want to do today, in spite of my condition'. She said this gave her strength and 'permission' to feel however she felt about her cancer that day. Naturally, as you know, it was a roller coaster, but she said this mantra and view helped her each and every day.

As a caregiver I understand I am on the outside of this, but I can say I realized one thing in that time, A person's cancer journey is a very individual one. No two people are effected the same, respond the same, make the same decisions, nor handle it the same and that is A-OK! Your feelings are valid. Your feelings are yours. Listen to them, react to them, and know what ever it is you are feeling that day is OK.

Peace,
Scott

Hello @kate123 I also want to welcome you to Mayo Connect. I also have a rare form of cancer, neuroendocrine tumor (also called carcinoid). While it presents different from yours (it is slow growing), it also is not diagnosed easily because there are no symptoms and it is not revealed through normal x-rays, CT scans, MRIs, etc. This year I had my third occurrence and I was disheartened to say the least. However, I went through the surgery and I'm getting back to normal. I can certainly relate to your feelings and I wish you well as you seek support. If there is a chapter of the American Cancer Society in your area, please call them to see what type of support groups they may have. They do wonderful things to support folks with cancer. Take care and keep in touch!

Hi @kate123,
I would like to add my welcome too. I'm glad you've connected with Scott and Hopeful. Please also meet @judithvt @dorkmom2 and @georgiajb who have uterine cancer.

Kate, fear of recurrence is very real. Tests to detect recurrence can be re-assuring on the one hand, but they can also be nerve wracking. In the absence of tests for your type of cancer, you're left with trusting that you know your body without panicking at every twinge. Easy said than done, right?

I won't pretend to walk in your shoes, but I would encourage you to not lose sight of today and enjoy life now. What gives you joy?

I have endometrial cancer

I had a total hysterectomy 3 days ago. I'm feeling afraid of more cancer showing up in other organs of my body.

Hello @patricia5 and welcome to Connect. I moved your post about endometrial cancer to an existing discussion on the same topic.

Here, you will find a few members talking about the same diagnosis. I would like to invite @judithvt, @dorkmom2, @georgiajb, @kate123, @mdotsie, @skunklady13, and @pedie as they all have experience with uterine or endometrial cancer and may be able to help alleviate some of your concerns.

@patricia5, could you tell us a bit more about yourself? What treatments do you have planned or have you undergone?

You sound like a great caregiver. I've had endometrial cancer for almost nine years and have heard lots of comments about how cancer is no big deal because anyone could get hit by a truck tomorrow, to very sympathetic and helpful comments. The helpful comments recognize that I have a good attitude but a hard battle to fight. My cancer has changed my life completely. The newest problem is the result of surgery for a metastatic brain tumor that has left me with constant vertigo, nausea, vomiting and ringing in my ears. I have to lie down all the time to avoid dizziness and nausea. My husband does everything he can to make life better but I feel for him because there's so little he can do besides provide comfort and support. He certainly doesn't have the wife he married, but he never complains.

I was just diagnosed and am having a complete hysterectomy next Friday. Where did this beast come from?

@hhereford, welcome to Connect. It is such a shock to be diagnosed with endometrial cancer out of the blue. Not even the experts know why it happens or what cause endometrial cancer. There are risk factors that may help explain it https://www.mayoclinic.org/diseases-conditions/endometrial-cancer/symptoms-causes/syc-20352461

Do you know what stage the cancer is? May I ask are you pre or post menopausal? What questions do you have?

Dear @kate123, I hope you are recovering well from the surgery.
Did you have a Wertheim procedure?
Did they remove a lot of lymph nodes?
Did the doctor propose any adjuvant therapy?
I had my uterine clear cell carcinoma diagnosis also beginning of January and had surgery a few weeks later.
It was a Wertheim plus removal of 55 plus lymph nodes.
The recovery takes longer than I thought but I listen to my body and rest whenever I need to.
Ever since I have, alas to no avail, been trying to find other women who have uterine clear cell carcinoma but we are indeed a very rare breed 🙂
And also because it is such a rare one, it is not the kind of cancer that attracts big pharma to invest in research into this specific one.
I so understand your fear about not knowing where it might resurface.
The surgeon told me as well that they caught it early on so I do think that is a major positive factor for both you and me.
Can I ask you how old you are and if you were already premenopausal or menopausal before the surgery?
All the best, Kate!