Carcinosarcoma of the endometrium: What are next steps?

Posted by linda21532 @linda21532, Apr 28 3:14pm

Had a laparoscopic hysterectomy 4/1/2024 have not recovered well. No explanation of next steps need help navigating this diagnosis and treatment plan

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

val64 | @val64 | Apr 29 7:33am

Have you had an appointment with your gyn oncologist since your surgery? Have you sent them a note through the patient portal asking what's next? Sometimes you need to remind them to pay attention to you.

linda21532 | @linda21532 | Apr 29 10:43am

In reply to @val64 "Have you had an appointment with your gyn oncologist since your surgery? Have you sent them..." + (show)

Thanks so much for the reply! My 4 week post op is this Thursday 5/2 I have such a hard time recovering from this hysterectomy, extra incision and a hematoma really put me down! I guess I am asking what questions to ask their portal is terrible and they are an hour away from me.

Helen, Volunteer Mentor | @naturegirl5 | Apr 29 6:11pm

@linda21532 Recovery from surgery is hard enough and you had an additional incision and hematoma. No wonder it's taking you more time to heal.

Have you already seen and read the pathology report? If your doctor has not already gone through the pathology report with you then you could ask them to do that.

When I had the follow up appointment with my surgeon, she went through the pathology report with me which told her (and me) the type (in my case, endometroid adenocarcinoma) and stage (1a). My surgeon explained that with this diagnosis I would not need any other treatment like radiation therapy or chemotherapy. If my cancer had been a high stage or a more aggressive cancer then she would have made recommendations for more treatment, called adjuvant treatment. She gave me a Survivorship Plan that included all of my information, and how I would followed over 5 years. This included recommended follow-up visits every 6 months for the first 3 years.

Here is information from the National Cancer Society on uterine sarcoma. You might like to read through this and see if you have come up with questions:

National Cancer Society:

-- https://www.cancer.org/cancer/types/uterine-sarcoma.html

What other questions do you have?

Colleen Young, Connect Director | @colleenyoung | May 5 7:13pm

In reply to @linda21532 "Thanks so much for the reply! My 4 week post op is this Thursday 5/2 I..." + (show)

@linda21532, how did the post-op follow-up go? How are you doing? Next steps?

Helen, Volunteer Mentor | @naturegirl5 | May 5 8:10pm

In reply to @linda21532 "Thanks so much for the reply! My 4 week post op is this Thursday 5/2 I..." + (show)

@linda21532 I’m following up on your appointment that was scheduled for last Wednesday, May 2. How was the appointment and what information do you get from your doctor? I hope you are continuing to heal.

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