Endometrial Stage III Cancer Diagnosis

Posted by tjperry @tjperry, Jan 21, 2023

On November 28th my world was turned upside down! I heard those dreaded words,
" I'm sorry but your biopsy shows you have cancer so I have referred you to a gynecologic oncologist."

Three days later I met him. They couldn't tell for sure if I had cervical or endometrial cancer. A Leep procedure determined that it was not cervical.

Eleven days later I had a total hysterectomy including bilateral ovaries and fallopian tubes. They were confident that I would have the surgery and I would be cured. The tumor was a grade 1, invasion less than 50% into the myometrium, no lymph node involvement, lower uterine segment involved but nothing in my cervix. Everything was looking great until the pathologist found cancer in my left fallopian tube! Ugh They said it is unusual because the tumor wasn't near the fallopian tube so somehow some cancer cells got away from the main tumor, travelled and implanted into my tube.

Went from surgery and cured to stage III and needing radiation and chemotherapy! I start the Portec 3 treatment plan on Feb. 6th. I am getting nervous!

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

Hello, tj; I'm so glad you posted here. Of course you're getting nervous after all you've been through! I hope you will continue to reach out here to find support. How frustrating and nerve-wracking to go from 'cured' to needing both radiation and chemotherapy. I had both of those for my excised endometrial cancer, though they were highly recommended as 'insurance,' rather than deemed necessary due to an increase in grading. Are you able to talk with a provider, family member or other supportive person about your nerves? Some people find more information helpful, and others, not so much: it only increases anxiety. Where do you fall on that spectrum? It might be helpful to have some idea of what to expect with your treatments, in order to think about what you would like to have for support. Please let us know how you're feeling, and if any of us can offer any help in these conversations. I wish you all the best, my friend.

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@tjperry After all you've been through which is a rollercoaster of emotions, of course you are very nervous about starting radiation and chemotherapy. When you think about it, your nervousness is normal for because your world has been turned upside down.

You are going into more treatment with not much idea of what to expect for you and your body. It sounds to me like you have a very thorough cancer care team and they are working closely with you. Before you start radiation your radiation oncologist will spend time with you getting you ready and explaining what will happen. Although I haven't had chemotherapy (I did have radiation therapy) your doctor will explain the chemotherapy to you in detail. I know that they try really hard to make sure you are as comfortable as you can be during treatment.

@valentinaz has some good suggestions. Who can you talk with about your feelings? A good friend? Your spouse or partner? Do you have medical questions for your doctors? I suggest writing your questions down as they come to you so that when you do meet with your doctors or nurses you'll have your questions ready.

I've been through the initial endometrial cancer diagnosis and a recurrence. I am here for you so will you let me know how you are feeling and if I can answer questions for you?

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Be strong and lift up your worries and illness to God.
I am undergoing chemotherapy on my 2nd for 6 session. At 57 I was diagnosed of stage IIIA endometrial CA in November 2022. Some pains due to chemotherapy side effects but after a few days, I am good.

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@valentinaz

Hello, tj; I'm so glad you posted here. Of course you're getting nervous after all you've been through! I hope you will continue to reach out here to find support. How frustrating and nerve-wracking to go from 'cured' to needing both radiation and chemotherapy. I had both of those for my excised endometrial cancer, though they were highly recommended as 'insurance,' rather than deemed necessary due to an increase in grading. Are you able to talk with a provider, family member or other supportive person about your nerves? Some people find more information helpful, and others, not so much: it only increases anxiety. Where do you fall on that spectrum? It might be helpful to have some idea of what to expect with your treatments, in order to think about what you would like to have for support. Please let us know how you're feeling, and if any of us can offer any help in these conversations. I wish you all the best, my friend.

Jump to this post

Thank you so much for reaching out to me! I have a wonderful family but am having a hard time saying too much to them as I don't want them to worry more than they already are.

I have been reading a lot from reputable sites. My cancer is endometrioid adenocarcinoma with mucinous differentiation that metastasized to my left fallopian tube. My doctor said that this type of cancer is not typically found in the uterus so that made me nervous to start out!

I wanted to really research everything I could to be knowledgeable about my situation. The pathology report
said that there was lower uterine segment involvement and that there was necrosis focally seen in the tumor. Both of those details show a poor prognosis and decreased survival rate. I think that's why I am so nervous to start treatment!

I know I need to offer everything up to God and have complete trust in Him. Working hard on doing that because I know that faith will help me through! I also know that talking to others will help me too so thank you again!!!

REPLY
@naturegirl5

@tjperry After all you've been through which is a rollercoaster of emotions, of course you are very nervous about starting radiation and chemotherapy. When you think about it, your nervousness is normal for because your world has been turned upside down.

You are going into more treatment with not much idea of what to expect for you and your body. It sounds to me like you have a very thorough cancer care team and they are working closely with you. Before you start radiation your radiation oncologist will spend time with you getting you ready and explaining what will happen. Although I haven't had chemotherapy (I did have radiation therapy) your doctor will explain the chemotherapy to you in detail. I know that they try really hard to make sure you are as comfortable as you can be during treatment.

@valentinaz has some good suggestions. Who can you talk with about your feelings? A good friend? Your spouse or partner? Do you have medical questions for your doctors? I suggest writing your questions down as they come to you so that when you do meet with your doctors or nurses you'll have your questions ready.

I've been through the initial endometrial cancer diagnosis and a recurrence. I am here for you so will you let me know how you are feeling and if I can answer questions for you?

Jump to this post

Thank you for your willingness to be there/here for me! I have my radiation simulation today and then I meet with the medical oncologist and a nurse tomorrow. I think both of these appointments will help because I will have a better idea of the plan moving forward. I know I will have 5-6 weeks of radiation M-F with the 1st and 22nd or 28th day they will give me an IV infusion of Cisplatin for 3-5 hours (what determines the length of the infusion?) Then I will have a month off before 4 rounds of carbo/taxel (4 hour IV infusions 21 days apart.)

I will lose my hair during the carbo/taxel treatment. Advice on a wig/scarves/hats would be helpful. Maybe that's part of my appointment with the chemo oncologist/nurse on Tuesday?! Thank you again!

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@erthart65

Be strong and lift up your worries and illness to God.
I am undergoing chemotherapy on my 2nd for 6 session. At 57 I was diagnosed of stage IIIA endometrial CA in November 2022. Some pains due to chemotherapy side effects but after a few days, I am good.

Jump to this post

Taking your advice about lifting up my worries to God! Thank you!!!! (I just turned 59).

You are only having chemo treatment? Or is your treatment the "sandwich" where you start with chemo then do radiation and then go back to chemo? At the case conference for me I was told that the doctors went back and forth on the "sandwich" vs "Portec3" and ultimately decided that the Portec 3 would be best for me.

God's blessings for you during the rest of your treatments and beyond!

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@tjperry

Taking your advice about lifting up my worries to God! Thank you!!!! (I just turned 59).

You are only having chemo treatment? Or is your treatment the "sandwich" where you start with chemo then do radiation and then go back to chemo? At the case conference for me I was told that the doctors went back and forth on the "sandwich" vs "Portec3" and ultimately decided that the Portec 3 would be best for me.

God's blessings for you during the rest of your treatments and beyond!

Jump to this post

My treatment is chemo then radiation, hoping that the treatment is responsive.

REPLY
@tjperry

Thank you so much for reaching out to me! I have a wonderful family but am having a hard time saying too much to them as I don't want them to worry more than they already are.

I have been reading a lot from reputable sites. My cancer is endometrioid adenocarcinoma with mucinous differentiation that metastasized to my left fallopian tube. My doctor said that this type of cancer is not typically found in the uterus so that made me nervous to start out!

I wanted to really research everything I could to be knowledgeable about my situation. The pathology report
said that there was lower uterine segment involvement and that there was necrosis focally seen in the tumor. Both of those details show a poor prognosis and decreased survival rate. I think that's why I am so nervous to start treatment!

I know I need to offer everything up to God and have complete trust in Him. Working hard on doing that because I know that faith will help me through! I also know that talking to others will help me too so thank you again!!!

Jump to this post

So glad you have a wonderful family: that cannot be underestimated. I understand your desire not to "worry" them, but remember: they love you! You will know best how and what to talk to them about. That's why it's so important to have others (friends, therapists, etc.) to help you sort out this new reality you find yourself in. Glad you've connected with others here, too; please keep us in the loop as much as you want as you go through your treatments.

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@erthart65

My treatment is chemo then radiation, hoping that the treatment is responsive.

Jump to this post

Hugs and hoping they work for you

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@tjperry

Thank you for your willingness to be there/here for me! I have my radiation simulation today and then I meet with the medical oncologist and a nurse tomorrow. I think both of these appointments will help because I will have a better idea of the plan moving forward. I know I will have 5-6 weeks of radiation M-F with the 1st and 22nd or 28th day they will give me an IV infusion of Cisplatin for 3-5 hours (what determines the length of the infusion?) Then I will have a month off before 4 rounds of carbo/taxel (4 hour IV infusions 21 days apart.)

I will lose my hair during the carbo/taxel treatment. Advice on a wig/scarves/hats would be helpful. Maybe that's part of my appointment with the chemo oncologist/nurse on Tuesday?! Thank you again!

Jump to this post

I had the carbo/taxel treatment and lost my hair and my recommendation is to either go to a wig shop and get professionally fitted for your wig or just use scarves and hats. I bought wigs online and it was a waste of money. they didn't fit and were itchy. I bought a real hair set of bangs which could be worn under scarves and hats and that was the best investment.

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