1. < Gynecologic Cancers

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

Posted by kate123 @kate123, Aug 13, 2016

Hello, I'm new to this group but would like to find others with my type of cancer to chat with.
I was duagnosed in January with clear cell carcinoma endometrium. (I had uterine cancer previously but was lost to folliw up) I had surgery in February and had everything removed including lymph nodes. I was told they caught it early but to remember it is a metastatic cancer and can return anywhere in my body with no signs or symptoms. I was also told there is no test to detect recurrence.
I'm caught between feeling relieved and grateful and terrified it will hit me again out of the blue) Is there anyone out there who can relate?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

bruges | @bruges | Mar 19, 2019
In reply to @bruges "Dear @kate123, I hope you are recovering well from the surgery. Did you have a Wertheim..." + (show)
@bruges

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!

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

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hhereford | @hhereford | Mar 20, 2019
In reply to @colleenyoung "@hhereford, welcome to Connect. It is such a shock to be diagnosed with endometrial cancer out..." + (show)
@colleenyoung

@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?

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I do not know the stage. Staging will be immediately after surgery. I worry that I should not have been on the combi patch

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hhereford | @hhereford | Mar 20, 2019

Forgot to say that I am 77 and (indeed) post menapausal

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Charlotte | @7429 | May 20, 2019

I am looking for a discussion group that relates to my serous carcinoma. My initial cancer was endometrial in 2016. I had total hysterectomy and 8 negative lymph nodes. removed. Stage 1A. I had Pacil/Carbo for 6 treatments. I felt so relieved it was all over.... 2019 Same cancer showed back up on right acetabulum (hip). I had 15 days radiation started the same chemo drugs. On the 2nd treatment, I had a severe anaphylactic reaction to Carbo which I'm hearing is unusual. My new drug combo: Avastin, Taxotere,, and Herceptin. I'll be very honest. My first go round, I just wanted it out-tell me what to do. This time I'm trying to be more proactive but It's been hard. Radiation was a breeze to get thru, but afterwards was horrible. I've been sick and very fatigued the whole time. I've changed my diet to Mediterranean with some cheat days. Can anyone Relate?

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3 replies
Charlotte | @7429 | May 20, 2019
In reply to @7429 "I am looking for a discussion group that relates to my serous carcinoma. My initial cancer..." + (show)
@7429

I am looking for a discussion group that relates to my serous carcinoma. My initial cancer was endometrial in 2016. I had total hysterectomy and 8 negative lymph nodes. removed. Stage 1A. I had Pacil/Carbo for 6 treatments. I felt so relieved it was all over.... 2019 Same cancer showed back up on right acetabulum (hip). I had 15 days radiation started the same chemo drugs. On the 2nd treatment, I had a severe anaphylactic reaction to Carbo which I'm hearing is unusual. My new drug combo: Avastin, Taxotere,, and Herceptin. I'll be very honest. My first go round, I just wanted it out-tell me what to do. This time I'm trying to be more proactive but It's been hard. Radiation was a breeze to get thru, but afterwards was horrible. I've been sick and very fatigued the whole time. I've changed my diet to Mediterranean with some cheat days. Can anyone Relate?

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Correction: .....Carbo which I'm hearing is NOT unusual....

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glenda007 | @glenda007 | May 20, 2019
In reply to @7429 "I am looking for a discussion group that relates to my serous carcinoma. My initial cancer..." + (show)
@7429

I am looking for a discussion group that relates to my serous carcinoma. My initial cancer was endometrial in 2016. I had total hysterectomy and 8 negative lymph nodes. removed. Stage 1A. I had Pacil/Carbo for 6 treatments. I felt so relieved it was all over.... 2019 Same cancer showed back up on right acetabulum (hip). I had 15 days radiation started the same chemo drugs. On the 2nd treatment, I had a severe anaphylactic reaction to Carbo which I'm hearing is unusual. My new drug combo: Avastin, Taxotere,, and Herceptin. I'll be very honest. My first go round, I just wanted it out-tell me what to do. This time I'm trying to be more proactive but It's been hard. Radiation was a breeze to get thru, but afterwards was horrible. I've been sick and very fatigued the whole time. I've changed my diet to Mediterranean with some cheat days. Can anyone Relate?

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Hi Charlotte,
I am earlier in the process than you, having had surgery in November 2018, with serous endometrial cancer confirmed, and am about to complete treatments of Pacil/Carbo. It looks like I have had good results so far and won't need radiotherapy. (I am verygrateful given your experience. I have been applying a ketogenic diet for the past 3-4 months, being influenced by reading Kalamian and Grundy.
I have been very interested to hear about the drug combo you are now taking. I live in New Zealand and my public access to these drugs may be limited.
I have joined a Facebook page for Endometrial cancer, which you might find helpful.

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1 reply
Charlotte | @7429 | May 21, 2019
In reply to @glenda007 "Hi Charlotte, I am earlier in the process than you, having had surgery in November 2018,..." + (show)
@glenda007

Hi Charlotte,
I am earlier in the process than you, having had surgery in November 2018, with serous endometrial cancer confirmed, and am about to complete treatments of Pacil/Carbo. It looks like I have had good results so far and won't need radiotherapy. (I am verygrateful given your experience. I have been applying a ketogenic diet for the past 3-4 months, being influenced by reading Kalamian and Grundy.
I have been very interested to hear about the drug combo you are now taking. I live in New Zealand and my public access to these drugs may be limited.
I have joined a Facebook page for Endometrial cancer, which you might find helpful.

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Hi Glenda,
Glad you don't get radiation. I didn't the first time. I love the keto diet, but I'm not real good on any diet! What is the name of the Facebook group. I would love to join.

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glenda007 | @glenda007 | May 21, 2019

Hi Charlotte,
The Facebook group is Endometrial Cancer Support. You have reminded me that I can't take anything for granted.
Do you remember if you had a CAT or PET scan once your first Chemo was over? I would like to be doubly sure that there isn't
anything that radiation would deal to before I get discharged from oncology, and I want regular monitoring with tumour markers forever after.

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Charlotte | @7429 | May 21, 2019

Glenda,
Since they did a total hysterectomy, there is no need. After I completed the chemo, I went to a doctor every three months ( onocologist and gynecologist). The gynecologist always did a Pap smear. My onocologist would send me to testing if I had anything. 2 yrs later, I was having physical therapy for hip pain that didn't go away. The oncologist sent me for MRI with contrast and that's when they found the serous cancer again on my right hip bone.

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2 replies
glenda007 | @glenda007 | May 31, 2019
In reply to @7429 "Glenda, Since they did a total hysterectomy, there is no need. After I completed the chemo,..." + (show)
@7429

Glenda,
Since they did a total hysterectomy, there is no need. After I completed the chemo, I went to a doctor every three months ( onocologist and gynecologist). The gynecologist always did a Pap smear. My onocologist would send me to testing if I had anything. 2 yrs later, I was having physical therapy for hip pain that didn't go away. The oncologist sent me for MRI with contrast and that's when they found the serous cancer again on my right hip bone.

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Hi Charlotte,
It seems I was a bit hasty about assuming I wouldn't need radiation at this time - they just decided not to sandwich it between the chemo. It may follow when the chemo would er and effects assessed. I hope you found the Endometrial Cancer Support Group helpful. There seems to be a lot of women on it that are in Stage 4 and taking a variety of drugs to resist recurrence or delay progress, but I guess success depends on a number of factors, including the type of EC. I would be interested in hearing what your oncologist has planned for you now.

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