Member has chosen to not make this information public.

Groups (1)


Member not yet following any Pages.

Posts (6)

Thu, Mar 21 5:37pm · Uterine clear cell carcinoma in Gynecologic Cancers

Hi @bluemeade7, thank you for your message. Personally I chose not to have the brachy for now. For clear cell carcinoma, statistics show that a vaginal cuff recurrence is under 10%. Brachytherapy would halve that. If it weren’t for the autoimmune diseases I have, I would have chosen the brachy.
The radiologist said that by not doing brachy I wasn’t taking unnecessary risks. I also went for a second opinion about the adjuvant therapy. The doctor there sad that in case there was a recurrence at the vaginal cuff, surgery could also be an option.
Both doctors as well as the radiologist pointed out that having or not having brachy would not impact my overall survival time.
I appreciated their straightforwardness.
Recovery from the surgery has been harder then I had anticipated. Did they remove only two lymph nodes during your surgery?
All the best!

Thu, Mar 21 5:18pm · Uterine clear cell carcinoma in Gynecologic Cancers

Hello @hhereford, I wish you all the best for your surgery tomorrow. Will you keep us updated? Will be thinking of you tomorrow.

Tue, Mar 19 4:57am · Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry in Gynecologic Cancers

Oh, I am so sorry, I just noticed that your post dates from 2016. 😐

Tue, Mar 19 4:42am · Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry in Gynecologic Cancers

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!

Fri, Feb 15 1:00pm · Uterine clear cell carcinoma in Gynecologic Cancers

Hello Colleen,
Three weeks ago I had a robotic laparoscopic Wertheim hysterectomy plus lymphadenectomy.
I had the surgery on my birthday so I called it my reboot day 🙂
also have antiphospholipid syndrome which luckily wasn’t an issue during the surgery.
The surgery went very well. Afterwards in the recovery however my body went into shock. It turned out I am allergic to any kind of painkiller apart from paracetamol.
Also severely allergic to anti-nausea meds.
The results from the removed lymph nodes showed no metastasis. The tumor itself was also confined to the inner lining of the uterus.
The oncology radiologist has now proposed 24 gy brachytherapy spread over three sessions, each two day apart.
I am very hesitant. Especially for the possible long term effects. I was wondering if you know other women who have had the 24 gy over three sessions?

Fri, Feb 15 10:07am · Uterine clear cell carcinoma in Gynecologic Cancers

Hello, I am new here.
Beginning of the year I received my uterine clear cell carcinoma diagnosis. It is a very rare cancer and I was wondering if there were other women here who have the same diagnosis.