Anyone living with metastatic endometrial Cancer? What treatments?

Posted by miriam57 @miriam57, Dec 14, 2021

Wondering if anyone out there is living with endometrial cancer and what treatments you have been through?

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

I am living with metastatic endometrial cancer and, after metastasis was discovered I had carboplatin/paclitaxol/herceptin. Then just herceptin. Then doxil. Now deciding what to start on. All the options sound so scarey. How about anyone else?

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Hi @miriam57, allow me to bring in @goldengirl2 @stparker54 to the discussion to share the treatments they've had for metastatic endometrial cancer. Miriam, what treatments have been suggested as options for you?

@rainna, I like how you say in your profile bio that you are "suffering from both information deficiency and overload." Such a true statement, particularly when living with metastatic cancer. You look things up and there's lots of information on the web, but never really anything specific to you. Am I right?
You mentioned that after being treated with the chemo combination carboplatin/paclitaxol/herceptin, you were then given Herceptin alone, then Doxil alone. Are you and your team now considering a new treatment option?

REPLY
@colleenyoung

Hi @miriam57, allow me to bring in @goldengirl2 @stparker54 to the discussion to share the treatments they've had for metastatic endometrial cancer. Miriam, what treatments have been suggested as options for you?

@rainna, I like how you say in your profile bio that you are "suffering from both information deficiency and overload." Such a true statement, particularly when living with metastatic cancer. You look things up and there's lots of information on the web, but never really anything specific to you. Am I right?
You mentioned that after being treated with the chemo combination carboplatin/paclitaxol/herceptin, you were then given Herceptin alone, then Doxil alone. Are you and your team now considering a new treatment option?

Jump to this post

I had 6 rounds carbo/taxol-three shrink
6 rounds Keytruda-one grew 3 times bigger and kept growing
Had a big operation-took tumor, part of my colon.
6 weeks later, Dec.15, 2021,
New tumor in pelvis 1.7 inches.

REPLY
@colleenyoung

Hi @miriam57, allow me to bring in @goldengirl2 @stparker54 to the discussion to share the treatments they've had for metastatic endometrial cancer. Miriam, what treatments have been suggested as options for you?

@rainna, I like how you say in your profile bio that you are "suffering from both information deficiency and overload." Such a true statement, particularly when living with metastatic cancer. You look things up and there's lots of information on the web, but never really anything specific to you. Am I right?
You mentioned that after being treated with the chemo combination carboplatin/paclitaxol/herceptin, you were then given Herceptin alone, then Doxil alone. Are you and your team now considering a new treatment option?

Jump to this post

Considering Avastin, Torisel, or Keytruda/lenvima. I seem to find that the side effects for keytruda/lenvima are vwerery scary and the results are very positive so its a difficult decision. Do you have an opinion on the relative merits and problems with these choices?

REPLY
@colleenyoung

Hi @miriam57, allow me to bring in @goldengirl2 @stparker54 to the discussion to share the treatments they've had for metastatic endometrial cancer. Miriam, what treatments have been suggested as options for you?

@rainna, I like how you say in your profile bio that you are "suffering from both information deficiency and overload." Such a true statement, particularly when living with metastatic cancer. You look things up and there's lots of information on the web, but never really anything specific to you. Am I right?
You mentioned that after being treated with the chemo combination carboplatin/paclitaxol/herceptin, you were then given Herceptin alone, then Doxil alone. Are you and your team now considering a new treatment option?

Jump to this post

Hi Colleen,
You do a great job connecting people.
I have a radiology consult, if they say no, then some different kinds of chemo treatment. Still waiting to find out.

REPLY
@rainna

Considering Avastin, Torisel, or Keytruda/lenvima. I seem to find that the side effects for keytruda/lenvima are vwerery scary and the results are very positive so its a difficult decision. Do you have an opinion on the relative merits and problems with these choices?

Jump to this post

Rainna, I don't have an opinion on the merits or potential issues with these treatments choices. Here's a quick overview of the various targeted therapies for endometrial cancer.
– Targeted Therapy for Endometrial Cancer https://www.cancer.org/cancer/endometrial-cancer/treating/targeted-therapy.html

It comes down to which side effects you think you may be able to tolerate or that effect your quality of life the least. You may wish to also ask your doctor more questions to help your decision, for example:
– Given my health status and medical history, am I more prone to some side effects than others?
– Which drug is likely to cause *me* fewer issues given my health history?

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@miriam57

Hi Colleen,
You do a great job connecting people.
I have a radiology consult, if they say no, then some different kinds of chemo treatment. Still waiting to find out.

Jump to this post

Hello @miriam57. Is your oncologist coordinating your care? Depending on the kind of cancer and stage there are so many different treatments. As @colleenyoung said when I've looked up my cancer (endometroid adenocarcinoma) on the internet so much of the information is not specific to me although does give me some good background information.

In my situation when recurrent cancer was found I had a referral to radiation oncology. I came prepared with questions to ask the doctor. He reviewed what had been found and what he recommended. Then it was up to me to decide if that's what I wanted to do. So I'm doing radiation treatment right now at Mayo Clinic in Rochester.

Had chemotherapy or another targeted therapy been recommended I would have asked all kinds of questions about what to expect. How long will I have to do this? What are the side effects and then ask myself how this would effect my quality of life? What about my other health issues? How does that figure in to radiation or chemotherapy?

When do you meet with radiation oncology? Will you then go back to your oncologist to discuss what you want to do? I felt and still feel overwhelmed with what I'm doing and being away from home for so long. How are you feeling about all of this?

REPLY
@naturegirl5

Hello @miriam57. Is your oncologist coordinating your care? Depending on the kind of cancer and stage there are so many different treatments. As @colleenyoung said when I've looked up my cancer (endometroid adenocarcinoma) on the internet so much of the information is not specific to me although does give me some good background information.

In my situation when recurrent cancer was found I had a referral to radiation oncology. I came prepared with questions to ask the doctor. He reviewed what had been found and what he recommended. Then it was up to me to decide if that's what I wanted to do. So I'm doing radiation treatment right now at Mayo Clinic in Rochester.

Had chemotherapy or another targeted therapy been recommended I would have asked all kinds of questions about what to expect. How long will I have to do this? What are the side effects and then ask myself how this would effect my quality of life? What about my other health issues? How does that figure in to radiation or chemotherapy?

When do you meet with radiation oncology? Will you then go back to your oncologist to discuss what you want to do? I felt and still feel overwhelmed with what I'm doing and being away from home for so long. How are you feeling about all of this?

Jump to this post

OMG- so glad to hear from someone dealing with reoccurrence as well.
I meet next week with radiology next week.
I started in Jan 2021 with 6 rounds of Carboplatin/Taxol.
3 tumors and lymph node shrunk.
Then it was suggested to do Keytruda, it was suggested this would shut it down.
From May to Oct . One tumor grew three times bigger than when I started and was attached to other organs.
Oct.21 did a “curative “ surgery to take the tumor and cut areas where it was attached to get clear margins. It also gave me a colostomy bag since they had to cut the area of colon the tumor wrapped around.
Then on Dec.15 a new 1.7 inch mass showed up on lower pelvis.
So now meet with radiology to see if that is an option or start another type of chemo that may or may not shrink the tumor.
I have had at least some weeks to get stronger than I have been in a year.
I am at Mayo in Jacksonville. They have one GYN oncologist handling a lot of cases.
You have given me something to think about from questions.
I wonder how they can target one tumor with tentacles and not cook the rest of my pelvis.
Not even sure if they will say it is a good case.
How many rounds of radiation for you and have you had other treatments?

REPLY
@miriam57

OMG- so glad to hear from someone dealing with reoccurrence as well.
I meet next week with radiology next week.
I started in Jan 2021 with 6 rounds of Carboplatin/Taxol.
3 tumors and lymph node shrunk.
Then it was suggested to do Keytruda, it was suggested this would shut it down.
From May to Oct . One tumor grew three times bigger than when I started and was attached to other organs.
Oct.21 did a “curative “ surgery to take the tumor and cut areas where it was attached to get clear margins. It also gave me a colostomy bag since they had to cut the area of colon the tumor wrapped around.
Then on Dec.15 a new 1.7 inch mass showed up on lower pelvis.
So now meet with radiology to see if that is an option or start another type of chemo that may or may not shrink the tumor.
I have had at least some weeks to get stronger than I have been in a year.
I am at Mayo in Jacksonville. They have one GYN oncologist handling a lot of cases.
You have given me something to think about from questions.
I wonder how they can target one tumor with tentacles and not cook the rest of my pelvis.
Not even sure if they will say it is a good case.
How many rounds of radiation for you and have you had other treatments?

Jump to this post

@miriam57 I know what you mean. We cancer survivors are in this group together. If one more person says to me "I'm sorry" as the beginning to whatever else they're going to say to me I might scream.

You have been though so much this year. You are the example of living with cancer. I'm glad to know you've had a bit of a rest from treatment and can go into whatever is next feeling stronger.

Tumor with tentacles. That's a good description and yes, how can they radiate without affecting a larger area of your pelvis? It's a good question to ask the radiation oncologist.

My partner (retired physician) says you never want to be that "interesting case". But that's me to a certain extent. After my hysterectomy in 2019 the cancer was staged 1a with a 5% chance of recurrence. And now I'm that 1 in 20 who did have a recurrence within two years of first diagnosis.

I have 25 sessions of external beam radiation scheduled. I'm halfway though that. Then I'll have two sessions of brachytherapy at the site where the cancerous tissue was found at my check-up visit in October. I did have an encouraging conversation with one of the radiation oncologists on the team today who told me that my recurrence was caught very early so that the prognosis is more favorable. Still, it's not like we can take a pill for 10 days and be cured as if this is a sinus infection. We survive, and we live with cancer. That's us.

Do you have a support network or group? A therapist for counseling you can talk to?

When is your appointment with radiation oncology? Will you come back here and let me know what happens?

REPLY
@naturegirl5

@miriam57 I know what you mean. We cancer survivors are in this group together. If one more person says to me "I'm sorry" as the beginning to whatever else they're going to say to me I might scream.

You have been though so much this year. You are the example of living with cancer. I'm glad to know you've had a bit of a rest from treatment and can go into whatever is next feeling stronger.

Tumor with tentacles. That's a good description and yes, how can they radiate without affecting a larger area of your pelvis? It's a good question to ask the radiation oncologist.

My partner (retired physician) says you never want to be that "interesting case". But that's me to a certain extent. After my hysterectomy in 2019 the cancer was staged 1a with a 5% chance of recurrence. And now I'm that 1 in 20 who did have a recurrence within two years of first diagnosis.

I have 25 sessions of external beam radiation scheduled. I'm halfway though that. Then I'll have two sessions of brachytherapy at the site where the cancerous tissue was found at my check-up visit in October. I did have an encouraging conversation with one of the radiation oncologists on the team today who told me that my recurrence was caught very early so that the prognosis is more favorable. Still, it's not like we can take a pill for 10 days and be cured as if this is a sinus infection. We survive, and we live with cancer. That's us.

Do you have a support network or group? A therapist for counseling you can talk to?

When is your appointment with radiation oncology? Will you come back here and let me know what happens?

Jump to this post

We have things in common.
I had my hysterectomy in May of 2020. It was Stage 1A with a grade 2 tumor. They did three rounds of brachytherapy to reduce my chances from 20% to 5%.
In December of 2020, they did my first scan and there it was.
25 rounds?
How often and is it just the tumor or an area?
Does it hurt?
Thankyou for connecting.

REPLY
@miriam57

We have things in common.
I had my hysterectomy in May of 2020. It was Stage 1A with a grade 2 tumor. They did three rounds of brachytherapy to reduce my chances from 20% to 5%.
In December of 2020, they did my first scan and there it was.
25 rounds?
How often and is it just the tumor or an area?
Does it hurt?
Thankyou for connecting.

Jump to this post

Hello, @miriam57 Yes, we do have things in common. My cancer was endometrial adenocarcinoma. It was diagnosed Stage 1a FIGO Grade 1 after the hysterectomy in 2019. Do you know what kind of endometrial cancer you were diagnosed with?

I was scared in 2019 before the hysterectomy and the relieved after since the GYN/ONC surgeon told me the results and that no further treatment was recommended at that time. But the fear lodged itself and every new twinge scared me. And now here I am with the recurrence.

How are you feeling?

The radiation is every day for 5 days a week with the exception of Christmas Eve and New Year's Eve. The PET/MR showed nothing. No tumors anywhere. So the cancer is considered microscopic with the only tell being the granular tissue that was found during my 6 month exam. So radiation is targeting the pelvic area including the lymph nodes and then 2 treatments of brachytherapy.

I don't have pain from the recurrent cancer or the radiation. I have pain from other causes like arthritis. And the exercise I do.

How was your brachytherapy? I'm told it's uncomfortable but not painful. Any advice on what to expect from brachytherapy?

REPLY
@naturegirl5

Hello, @miriam57 Yes, we do have things in common. My cancer was endometrial adenocarcinoma. It was diagnosed Stage 1a FIGO Grade 1 after the hysterectomy in 2019. Do you know what kind of endometrial cancer you were diagnosed with?

I was scared in 2019 before the hysterectomy and the relieved after since the GYN/ONC surgeon told me the results and that no further treatment was recommended at that time. But the fear lodged itself and every new twinge scared me. And now here I am with the recurrence.

How are you feeling?

The radiation is every day for 5 days a week with the exception of Christmas Eve and New Year's Eve. The PET/MR showed nothing. No tumors anywhere. So the cancer is considered microscopic with the only tell being the granular tissue that was found during my 6 month exam. So radiation is targeting the pelvic area including the lymph nodes and then 2 treatments of brachytherapy.

I don't have pain from the recurrent cancer or the radiation. I have pain from other causes like arthritis. And the exercise I do.

How was your brachytherapy? I'm told it's uncomfortable but not painful. Any advice on what to expect from brachytherapy?

Jump to this post

Hi,
I had the same type of cancer. Stage 1, tumor grade 2.
The 3 rounds of brachytherapy were painless. It is fast. Takes them longer to set you up then the procedure. Although I was tires. However I am wondering if you are having fatigue from the 25 rounds. So it sounds like at your 6 month exam did they find a tumor?
Thinking of you, I also live my partner Mark, I can’t believe he stays with me. I have been dealing with this since we moved in together March of 2020. However he was my high school sweetheart. We stayed in touch and friends all these years.
I am wishing you a merry Christmas

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