Dear GCS Project members,
I have received a surgical diagnosis of uterine carcinosarcoma Stage 1B. Surgery involved total hysterectomy and lymphodenectomy but with preservation of my ovaries. I am 42 years of age, BMI of 20 and generally very healthy and well. Lymph node dissection revealed that there has been no metastasis to the lymph.
At the time of clinical consultation, I decided to try to preserve the ovaries to minimize long-term risks associated with surgical menopause and due to family history. This decision was made prior to my post-surgical diagnosis with uterine carcinosarcoma (at the stage of clinical consultation, a high-grade endometrial cancer was the diagnosis, so my surgeon was alright with me preserving my ovaries and evidence supported their preservation as CT and MRI suggested stage 1B, while European standards did not necessarily advise oophorectomy). I did give the surgeon permission to remove the ovaries during surgery should he suspect any metastasis or tumour involvement. He didn't see any evidence of this, and so both ovaries remain intact.
Now, with the diagnosis of uterine carcinosarcoma, the MDT has advised bilateral oophorectomy (for exact staging they say) and adjuvant radiotherapy. I intend to have the radiotherapy but my question to the forum is whether any of you know of any evidence or studies that suggest that preserving the ovaries increases the likelihood of recurrence? Or does anyone know of any studies at all that evidence the benefits of bilateral oophorectomy for the treatment of uterine carcinosarcoma?
Many thanks for your response. I am so grateful to you for creating and engaging with this resource. My surgical team have yet to counsel me on the diagnosis making recommendations for treatment, without even telling me anything about prognosis or exact pathohistological results, and so I have had to research the disease on my own. I am therefore very relieved to find you, and to know that there are others out there working to integrate patient experience and build a community of patients that can support each other through this difficult disease.
Kind wishes,
Gillian Jein (PhD)
Senior Lecturer in French Studies
School of Modern Languages
Newcastle University
Newcastle-upon-Tyne
United Kingdom
Dear Gillian,
We are so sorry for your suffering and hope we can find you the support you are requesting.
Our GCS expert, Dr. Michael Birrer offered the following:
There is essentially no data to rely on since this is a rare situation with a rare tumor. But in my opinion I would recommend a full staging procedure which would involve repeat surgery and removal of the ovaries. At that point it is likely that chemo would be indicated.
He also offered that you could call Kim at his office: 501-296-1200 or email his office: uamshealth.com at the University of Alabama.
Please take care and let us know how you proceed.
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