Uterine clear cell carcinoma

Posted by bruges @bruges, Fri, Feb 15 10:07am

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.

Welcome to Connect, @bruges. Uterine clear-cell carcinoma is very rare. @kate123 has also posted on Connect about this rare type of cancer. And there are several members are discussing ovarian clear-cell carcinoma here:

– Rare cancer: ovarian clear cell carcinoma https://connect.mayoclinic.org/discussion/rare-cancer/
– Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry https://connect.mayoclinic.org/discussion/rare-aggressive-hard-to-treat-but-donthe-worry/

Bruges, while we wait for others to join the discussion, let's get to know more about you. When were you diagnosed? What treatments are you or have you had? How are you doing?

@colleenyoung

Welcome to Connect, @bruges. Uterine clear-cell carcinoma is very rare. @kate123 has also posted on Connect about this rare type of cancer. And there are several members are discussing ovarian clear-cell carcinoma here:

– Rare cancer: ovarian clear cell carcinoma https://connect.mayoclinic.org/discussion/rare-cancer/
– Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry https://connect.mayoclinic.org/discussion/rare-aggressive-hard-to-treat-but-donthe-worry/

Bruges, while we wait for others to join the discussion, let's get to know more about you. When were you diagnosed? What treatments are you or have you had? How are you doing?

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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?
Thanks!

I’ve just been diagnosed with same; I have a hysterectomy scheduled for this Friday. Keep your chin up; I’ll be thinking about you It’s a scary illness to face. Have you thought about investigating the possibility of participating in any trials for cancer research?

@bruges Hi. I have the almost as rare uterine serous carcinoma. Surgery 7/2018, dx Stage 1a UPSC with LVSI. I had robotic radical hysterectomy, no cancer anywhere except the uterus and LVSI. Two sentinel nodes were sampled, no cancer. Easy recovery. I had 2 chemo with 3 brachy followed by 2 more chemo. Brachy was recommended due to my stage. The treatment is not terrible, pretty undignified, but everyone was so kind and respectful. I was VERY hesitant to have any radiation due to the side effects short and lon term, but after consultation with my radiologist I agreed. I have had very little short term side effects, diarrhea, which lasted only a few days. For me very tolerable. What sealed the deal for me is that local recurrence in the vaginal cuff is common even for stage 1a. Plus my gyne who did my hysteroscopy removed most of my tumor thinking it was a fibroid during the biopsy which puts me at additional risk. So get all of your questions answered so you can make an informed decision. With a very aggressive serous carcinoma I did not want to take a chance. Hope this helps. The chemo and brachy are the standards for 1a serous by the Nccn.

@hhereford

I’ve just been diagnosed with same; I have a hysterectomy scheduled for this Friday. Keep your chin up; I’ll be thinking about you It’s a scary illness to face. Have you thought about investigating the possibility of participating in any trials for cancer research?

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@hhereford please see my post to @bruges. Good luck on your surgery and staging. If you have any questions after your surgery when you are feeling well, please don't hesitate to ask.

@hhereford

I’ve just been diagnosed with same; I have a hysterectomy scheduled for this Friday. Keep your chin up; I’ll be thinking about you It’s a scary illness to face. Have you thought about investigating the possibility of participating in any trials for cancer research?

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

@bluemeade7

@bruges Hi. I have the almost as rare uterine serous carcinoma. Surgery 7/2018, dx Stage 1a UPSC with LVSI. I had robotic radical hysterectomy, no cancer anywhere except the uterus and LVSI. Two sentinel nodes were sampled, no cancer. Easy recovery. I had 2 chemo with 3 brachy followed by 2 more chemo. Brachy was recommended due to my stage. The treatment is not terrible, pretty undignified, but everyone was so kind and respectful. I was VERY hesitant to have any radiation due to the side effects short and lon term, but after consultation with my radiologist I agreed. I have had very little short term side effects, diarrhea, which lasted only a few days. For me very tolerable. What sealed the deal for me is that local recurrence in the vaginal cuff is common even for stage 1a. Plus my gyne who did my hysteroscopy removed most of my tumor thinking it was a fibroid during the biopsy which puts me at additional risk. So get all of your questions answered so you can make an informed decision. With a very aggressive serous carcinoma I did not want to take a chance. Hope this helps. The chemo and brachy are the standards for 1a serous by the Nccn.

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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!

So glad you got your decision about brachy sorted out. Tough decision but good input from your team. Sorry you had issues with meds. I have an intolerance to most opoiods which make me throw up so my pain relief is dicey at best. But IV pain meds worked. Plus I have renal insufficiency due to long term NSAID use so I can only take them sparingly. All this nonsesnse! I did have just two nodes removed which is called sentinel node biopsy. Have you started chemo yet? Are they suggesting chemo for you? It sounds like you are stage 1a? I am not familiar with the protocols for clear cell. I had some clear cell but predominantly my tumor was serous, so I am classified as serous. I remember the old joke about older people obsessed with their aches and pains, and boy, am I ever the poster girl for that. 😁 I had my surgery, chemo and treatment at Mayo, Rochester. Let me know how you are doing.

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