Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry

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?

@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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@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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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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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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@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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Does anyone have 1st hand knowledge of using metformin? I am post surgery and post chemo,, with an original diagnosis of stage 3C ovarian cancer but am in remission now.

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@starko

Does anyone have 1st hand knowledge of using metformin? I am post surgery and post chemo,, with an original diagnosis of stage 3C ovarian cancer but am in remission now.

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@starko, Here is a 2018 review of the use of metformin in endometrial cancers.
– Metformin as a Therapeutic Target in Endometrial Cancers https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6121131/

I also posted the link to this discussion about Olaparib (trade name Lynparza), metformin and ovarian cancer https://connect.mayoclinic.org/discussion/olaparib-trade-name-lynparza/?pg=1#comment-304988

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Thank you very much for that reference.

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@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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I have uterine papaillary serous carcinoma..stage 3c .technically from surgery and chemo i don't have it any longer finished chemo 8 months ago ..have only had one follow up next one is in 2 weeks. Have you recovered from radiation yet? Isn’t herceptin a drug used if you are hormone positive?

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@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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I think that I would defer to experts about that. An if a dr tells that you don’t need it RUN to a couple others for another opinion

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Hi, I have the exact same cancer stage1 3B and was diagnosed this May 2019. I am having radiation treatment and chemo. Did you do these treatments as well?

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@colzewood13

Hi, I have the exact same cancer stage1 3B and was diagnosed this May 2019. I am having radiation treatment and chemo. Did you do these treatments as well?

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Yes. I had radiation and chemo(5 treatments)

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@colzewood13

Hi, I have the exact same cancer stage1 3B and was diagnosed this May 2019. I am having radiation treatment and chemo. Did you do these treatments as well?

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Did you also have a hysterectomy?

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Yes, dear lady, I know exactly what you are speaking of. I had serous endometrial cancer, stage 3c. Eight years ago!!! Still okay. Take it one day at a time. I'm 82 now. Had chemo, no radiation. Try to use my days reaching out to others in various ways, even though getting out and about is no longer easy for me. My energy level is low. May be a bad sign. God knows. I just take one day at a time. I try to make the best of it, grateful for another day to love someone.

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Yes, dear lady. Even after 8 years "cancer symptom free," I can relate. I always feel fatigued, possibly from other causes than cancer (who knows?) It's like a dark cloud that tries to hang over you day and night. But I have had 8 years of freedom from the cancer, so I am grateful. God knows. What exasperates me more than anything is that there is little to no studies being done on my cancer (serous endometrial CA, stage 3c.) And still no medication that targets it directly. So, I credit my survival to the mercies of God for reasons I don't understand. And I let people know that even though there is no real "followup treatment" (other than Aromasin for BREAST cancer, which I have been on for these past 8 years), there is hope in God.

If you want to talk more about this, I will be happy to share with you.
MiracleGirl

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