Looking for some advice: endometrial carcinosarcoma.

Posted by sam1108 @sam1108, Sep 12, 2023

Hello,
My grandmother (88) an otherwise healthy, active women was recently diagnosed with endometrial carcinosarcoma. Based on biopsy and MRI, the cancer is uterine and cervix. Her GYN Oncologist does not operate first in this case. He suggested chemo (Carbo/Taxol) followed by radiation, then possible total (open) hysterectomy (if cancer has not spread).

My grandmother has never been sick in her life, other than common colds. I fear that suggesting treatment will certainly make her ill from the side effects of chemo/radiation. I am an advocate for choosing quality of life over quantity. If this cancer does spread, does it cause a lot of bothersome symptoms? Does metastasis happen rapidly?

She is looking to me for guidance and I just don't want to steer her wrong. Any advice is appreciated.

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

I'm so sorry to hear about your grandmother. I don't think you should worry about steering her wrong. Whatever she wants to do is the right choice. I hate to say it, but there probably aren't any really good choices.

If your grandmother is interested in aggressive treatment, it might be a good idea to get a second opinion to see if they agree about the sequence of surgery and chemo/radiation.

It might be good to ask the doctor how long s/he would expect it to take to metastasize. I'm not a doctor, but I would guess less than a year, based on what I have read. If the cancer spreads, at some point she can enter palliative care/ hospice, where they will do their best to maximize quality of life.

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@val64

I'm so sorry to hear about your grandmother. I don't think you should worry about steering her wrong. Whatever she wants to do is the right choice. I hate to say it, but there probably aren't any really good choices.

If your grandmother is interested in aggressive treatment, it might be a good idea to get a second opinion to see if they agree about the sequence of surgery and chemo/radiation.

It might be good to ask the doctor how long s/he would expect it to take to metastasize. I'm not a doctor, but I would guess less than a year, based on what I have read. If the cancer spreads, at some point she can enter palliative care/ hospice, where they will do their best to maximize quality of life.

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My guess of "less than a year" was assuming it was NOT treated.

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@val64

My guess of "less than a year" was assuming it was NOT treated.

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Thank you for your advice @val64. I think she is leaning towards not partaking in aggressive care.

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Hi I am s70 years old and last Sept I was diagnosed with endometrial cardamoms cancer stage 1, grade 3 the fast spreading kind. I wasnt sick at all with this had got a UTI had some spotting like a period . Then one day went potty and toilet was full of blood that’s how I found out. I had total hysterectomy plus they removed the right and left lymph node to check to see if it spread to rather one of those but it hadn’t. I ended up having Radiation treatment, 5 of them had no problems with the treatments. I had all this done at Mayo Clinic in Rochester and they did a awesome job. I just went for my second checkup and everything is good. I know she’s scared to death like I was , but so far no cancer has returned. Hugs to all of you’s.

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@sam1108 How is your grandmother feeling today? I’ve been following your discussion and from your last post of 3 days ago you wrote that your grandmother is thinking no treatment. The questions you are asking about how your grandmother will feel if she doesn’t not receive treatment are good questions to ask. As @val64 mentioned these are questions to ask your grandmother’s doctor because the answers will help her to decide what she wants and does not want.

My mother-in-law had cancer - a different kind of cancer (ocular melanoma) that she received treatment for when it was diagnosed in 2016. She was always a very active and energetic woman and when the cancer returned and spread she decided no aggressive treatment. She continued to live as she always had and eventually became weaker. Once she entered hospice she received meds for pain and anxiety. She was 90 years old when she died two years ago.

I’m sharing this story only because this is one example of a very active woman much like your grandmother. It was the choice my mother-in-law made despite what her family suggested which was more treatment. Once she made her choice and communicated it to us we were very supportive.

Your post demonstrates that you are loving and caring granddaughter who wants what is best for your grandmother and will support whatever she chooses. When family “gets on the same page” and figures out how to accept their loved one’s choices then that harmony allows the loved one to experience the grace that they seek.

Are others in your family supporting your grandmother’s choices are you are dong?

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@cheriels

Hi I am s70 years old and last Sept I was diagnosed with endometrial cardamoms cancer stage 1, grade 3 the fast spreading kind. I wasnt sick at all with this had got a UTI had some spotting like a period . Then one day went potty and toilet was full of blood that’s how I found out. I had total hysterectomy plus they removed the right and left lymph node to check to see if it spread to rather one of those but it hadn’t. I ended up having Radiation treatment, 5 of them had no problems with the treatments. I had all this done at Mayo Clinic in Rochester and they did a awesome job. I just went for my second checkup and everything is good. I know she’s scared to death like I was , but so far no cancer has returned. Hugs to all of you’s.

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Thank you @cheriels for sharing your story with me. I am glad to hear you are in remission and doing well.

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@naturegirl5

@sam1108 How is your grandmother feeling today? I’ve been following your discussion and from your last post of 3 days ago you wrote that your grandmother is thinking no treatment. The questions you are asking about how your grandmother will feel if she doesn’t not receive treatment are good questions to ask. As @val64 mentioned these are questions to ask your grandmother’s doctor because the answers will help her to decide what she wants and does not want.

My mother-in-law had cancer - a different kind of cancer (ocular melanoma) that she received treatment for when it was diagnosed in 2016. She was always a very active and energetic woman and when the cancer returned and spread she decided no aggressive treatment. She continued to live as she always had and eventually became weaker. Once she entered hospice she received meds for pain and anxiety. She was 90 years old when she died two years ago.

I’m sharing this story only because this is one example of a very active woman much like your grandmother. It was the choice my mother-in-law made despite what her family suggested which was more treatment. Once she made her choice and communicated it to us we were very supportive.

Your post demonstrates that you are loving and caring granddaughter who wants what is best for your grandmother and will support whatever she chooses. When family “gets on the same page” and figures out how to accept their loved one’s choices then that harmony allows the loved one to experience the grace that they seek.

Are others in your family supporting your grandmother’s choices are you are dong?

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Hi Helen @naturegirl5,

Thank you for sharing your story with me. My grandmother's attitude is good. She has decided to try radiation therapy, and possibly surgery afterwords. She decided not to do chemo and I am glad and support her decision. Family seems supportive as well. Thank you for taking the time to reach out.

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@sam1108 That sounds like a good plan. I had radiation therapy for endometrial cancer and while everyone’s experience is different I found the dressing and undressing for the treatments to be more time consuming than the actual treatment. I’m glad to know that your family is supportive of your grandmother’s decision too.

Thank you for filling me in. Do you know when radiation therapy will start? Will you be taking her to her appointments?

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I was diagnosed with uterine carcinosarcoma in 2020 on my 70th birthday....and received a laparoscopic radical hysterectomy about 50 days after my bleeding had first started (during covid shutdown). Within a month after surgery I began to feel better than I had for several years and of course the bleeding stopped . The biopsy during surgery resulted in a stage 1 B. There had been more than 50% growth through the uterus wall but without observed spread to the 2 sentinel lymph nodes that were tested during the surgery. After surgery I was offered a chemo regimen and started a month or so later. Unfortunately the chemotherapy was too much for me, all the physical symptoms, weight loss, but also visual problems and illness. I gave up. I quit chemo after 4 of 6 treatments of the carbo-taxol and it was the best choice for me. Your grandmother of course will make her own choice. I do not think that I would have been able to physically survive a surgery after the chemotherapy. I felt relieved to learn that radiation is a option that she is considering. although I have no experience with that....its just that chemo was so debilitating. Like previous responders have said each patient is unique and by continuing to ask questions and seek information a way forward will be revealed. There was very little support available during covid. I am grateful that there are messages left by participants on this discussion site to help others embarking on similar journeys. It is good that you are there to help your grandmother wade through all the information and choices, and just for being there.

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@wuw8, thank you for your post. I so appreciate this in particular: “Like previous responders have said each patient is unique and by continuing to ask questions and seek information a way forward will be revealed. ” I am also struck by the fact that one important source of information you seem to have taken into consideration is how your body and spirits have responded to each of the courses of action you have tried. That feels so important to me. I am living this particular life and responding to each new diagnosis and circumstance that is part of this life. Information from doctors and other providers and all of the generous and kind posters on these forums and any support groups I attend are part of what I consider, along with my own experiences, capacity to cope and feelings. Knowing that I have agency..,I can take action or decide not to at any point along the way, gives me some comfort. Just wanted to express my gratitude for how you have framed it. Thank you!

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