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.

Thank you so much for this information! I did order a halo hair piece to wear under hats/scarves. We will see how that goes!

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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!

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Re: hair. I just finished 6 rounds of carbo/taxol. Shortly after the first round, I told the hairdresser to cut my hair short, indicating about an inch, and to do whatever style she wanted. She seemed to have a very good time cutting it, and gave me a cute short haircut, but most of it ended up significantly longer than I had indicated. When it was falling out ~3-6 weeks later, it still made a mess all over my house (although most of it ended up in the new hair catcher that I had put over the shower drain). If I were doing it again, I would just shave it off beforehand to avoid the cleanup.

I agree with cancerback that having a wig fitting and trying before buying would be best, if that's an option. But I did buy two wigs over the internet, and I have been wearing one of them.
I felt like wearing scarves and hats in public would scream "chemo!" and would make me self-conscious. First I bought an $80 wig with short sandy blond hair ( my partner was lobbying for something other than the normal ~80% grey/ 20% mouse brown). I didn't really like the way it looked (I thought it looked like a wig and sort of stuck up of my head), and the color made me self-conscious. It fit fine and was comfortable enough. Then I bought a ~$300 wig in about the same style, but a very close approximation to my natural hair color, and which could be parted in the front (but not along the top). I felt this one looked like a wig in about the same way as the other one. This one feels quite snug, but it stays on fine. I wear the grey one most of the time when I go out of the house, and I don't feel self-conscious while wearing it. I don't think it's super-obvious that it's a wig to people who don't know me. I have worn it all day a few times, but I'm not working, so most days I only wear it for 1-3 hours. It's comfortable enough. I wear a "chemo cap" at home the rest of the time.

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@val64

Re: hair. I just finished 6 rounds of carbo/taxol. Shortly after the first round, I told the hairdresser to cut my hair short, indicating about an inch, and to do whatever style she wanted. She seemed to have a very good time cutting it, and gave me a cute short haircut, but most of it ended up significantly longer than I had indicated. When it was falling out ~3-6 weeks later, it still made a mess all over my house (although most of it ended up in the new hair catcher that I had put over the shower drain). If I were doing it again, I would just shave it off beforehand to avoid the cleanup.

I agree with cancerback that having a wig fitting and trying before buying would be best, if that's an option. But I did buy two wigs over the internet, and I have been wearing one of them.
I felt like wearing scarves and hats in public would scream "chemo!" and would make me self-conscious. First I bought an $80 wig with short sandy blond hair ( my partner was lobbying for something other than the normal ~80% grey/ 20% mouse brown). I didn't really like the way it looked (I thought it looked like a wig and sort of stuck up of my head), and the color made me self-conscious. It fit fine and was comfortable enough. Then I bought a ~$300 wig in about the same style, but a very close approximation to my natural hair color, and which could be parted in the front (but not along the top). I felt this one looked like a wig in about the same way as the other one. This one feels quite snug, but it stays on fine. I wear the grey one most of the time when I go out of the house, and I don't feel self-conscious while wearing it. I don't think it's super-obvious that it's a wig to people who don't know me. I have worn it all day a few times, but I'm not working, so most days I only wear it for 1-3 hours. It's comfortable enough. I wear a "chemo cap" at home the rest of the time.

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Great information! Thank you so much for sharing!

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Thank you for this great feedback! Did you lose your eyebrows/eyelashes?

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@tjperry

Thank you for this great feedback! Did you lose your eyebrows/eyelashes?

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My eyebrows look fine, maybe 20% loss if anything, but my eyelashes look bad, with big gaps. The nurse practitioner actually made a comment on how my eyebrows were still there, which made me think that I may be unusual in that regard.

I also remembered that while I was googling wigs a few months ago, I learned that some people's health insurance pays for wigs, as long as you have a prescription from your doctor for a "cranial prosthesis" or "hair prosthesis". Mine doesn't, but it might be worth looking into.

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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.

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I finished my first week of Cisplatin and radiation. Glad to have a couple days off.
Turns out it it hard to get your bladder 100% full for radiation. On Tuesday it was 40% so they had to get me off the table and have me chug some water. 20 minutes later I was at 100%. They think this may have been due to the Cisplatin. Wednesday I was at 75% and they went ahead and treated me. I felt sick to my stomach after drinking so much water!

On planning day I drank 30oz. and had a full bladder and now I'm drinking over double that without a full bladder?!?!

I met with a dietitian afterwards and she told me to drink "Liquid IV" first (Gatorade, Powerade, Propel is fine too). That would give my cells what they need and then drinking plain water afterwards and that would fill my bladder. When I tried that the next day my bladder was 97% and the Radiation Therapists said this could be a game changer for all of their patients. If my struggles help others, I am very happy to help!!

My problem yesterday was kidney pain all day and night! I feel like I'm consuming my recommended water intake for the day in a short time in the morning and it's hard on my kidneys. I feel a little better this morning while I lay here but it worries me about doing this for 5 straight weeks. Anyone have any advice, feedback, suggestions?

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I have been diagnosed and will have a hysterectomy on February 28. I also have Stage III. For some reason no one seems to be in a hurry to move my surgery date up. I started this journey in August.

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@sherrill2023

I have been diagnosed and will have a hysterectomy on February 28. I also have Stage III. For some reason no one seems to be in a hurry to move my surgery date up. I started this journey in August.

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Did you get your diagnosis in August? That seems like a long time to be waiting! And the waiting has been the hardest thing for me too! Are there other health concerns they are trying to correct first? Is yours stage III A, B, or C?

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@tjperry

Did you get your diagnosis in August? That seems like a long time to be waiting! And the waiting has been the hardest thing for me too! Are there other health concerns they are trying to correct first? Is yours stage III A, B, or C?

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I was dx. on December 20 after my Hysteroscopy. I have been fighting to have my uterus left tube and ovary out since then. I started with abnormal bleeding. I had an ultrasound in October. I have grade III cancer. I’m very anxious.

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@tjperry

I finished my first week of Cisplatin and radiation. Glad to have a couple days off.
Turns out it it hard to get your bladder 100% full for radiation. On Tuesday it was 40% so they had to get me off the table and have me chug some water. 20 minutes later I was at 100%. They think this may have been due to the Cisplatin. Wednesday I was at 75% and they went ahead and treated me. I felt sick to my stomach after drinking so much water!

On planning day I drank 30oz. and had a full bladder and now I'm drinking over double that without a full bladder?!?!

I met with a dietitian afterwards and she told me to drink "Liquid IV" first (Gatorade, Powerade, Propel is fine too). That would give my cells what they need and then drinking plain water afterwards and that would fill my bladder. When I tried that the next day my bladder was 97% and the Radiation Therapists said this could be a game changer for all of their patients. If my struggles help others, I am very happy to help!!

My problem yesterday was kidney pain all day and night! I feel like I'm consuming my recommended water intake for the day in a short time in the morning and it's hard on my kidneys. I feel a little better this morning while I lay here but it worries me about doing this for 5 straight weeks. Anyone have any advice, feedback, suggestions?

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Oh, do I know how you feel. Monday was my last day of 5 weeks of external. And, am so glad not to be forced into drinking so much water. I have always drank more water at night than during the day while working. It was a struggle the whole 5 weeks for me. If I drank enough than they would be off and was over full by time they called me in. Had to start wearing poise pads, than they started asking me how long I had the problem and what a small bladder I had. What a experience, told them the problem better go away once completed. Is better but not 100% yet since Monday. Been awake in middle of night few nights since. But, the diarrhea the last week or so was what bothered me the most. However, started drinking Kombucha last 3 days now and has seemed to remove diarrhea, at least I think so. Tomorrow first of 2 brachy for this coming week. Hoping goes well. Following Monday 1 st of the last 3 chemo 3 weeks apart. Chin up, it is a journey.

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