So sorry this is so long! My story starts in June of 2018 when I suffered a seizure. I was rushed to the hospital where I am told I have a brain lesion and must have an immediate craniotomy to remove it. Originally dx with Plasmablastic Lymphoma (a disease with a horrible prognosis) but my docs didn't believe that was what I had so a search ensued. They knew it was secondary but did not believe it was lymphoma. So after bone marrow biopsy, CT scan, MRI, PET they find some questionable things in the uterus. Not necessarily cancer but suspicious. Sent to a gny/oncologist who did a biopsy and was then rediagnosed with uterine cancer. Thankfully because I had all of those other tests it showed it was nowhere else but uterus/ovary and brain. Had a TAH on August 24th and all lymph nodes and organs were negative for disease. Path came back that I had multiple fibroids and two distinct malignant tumors. One was grade 1 adenocarcinoma the other was high grade carcinoma exhibiting clear cell features and some undifferentiated components consistent with carcinosarcoma. I had CyberKnife radiation to the brain lesion site a week before my hysterectomy and started chemo (Taxol/Carbo) six rounds once every three weeks on Oct 9th. My radiation oncologist is recommending internal radiation. My gyn/oncologist wants to wait until my follow up brain MRI in Dec to plan next steps after chemo which should be done in Jan. I am so overwhelmed by all of it and am following what my doc is recommending though trying to do some research as it seems this cancer (or at least some of my cancer!) is quite rare. Any advice, help, etc. is much appreciated.
Kathy
Stage 4b Uterine Cancer
Dear Kathy,
Just read your story and don't apologize... it's not too long!! I'm sorry to hear that you're going through this!
I'm wondering if your brain lesion came back as carcinoma sarcoma?
I do not know but carbo/taxol may be a treatment for both cancers. I do know that it is protocol for GCS. If you read on to our stories, you may see that ifosomide has been more successful for some of us who did not respond to the carboplatin.
My suggestion to you is to make sure you have an oncologist who has experience with the GCS.
And I also recommend that you discuss having a scan after 3 months... not 6... to see if the carbo/taxol is working for you.
I do know that if the chemo works for you, it will work thought the body and hold back the cancer everywhere.
This cancer is indeed, rare, so there is not a huge amount of people on this site but I check in every week and will be glad to hear more from you.
How are you holding up on the present chemo?
sincerely,
Linda denne
Hi Kathy,
It's hard to imagine what you are going through after such a difficult time getting a diagnosis. It has to be overwhelming. Linda put things very well - be sure you are under the care of a physician with much experience in gyn carcinosarcoma. Her advice to follow up with scans early is also very good advice. Some forms of gyn cancer are "platinum-resistant," meaning that platinum-based drugs, such as carboplatinum, are not effective and a different category of chemotherapy has to be used (ifosfamide, for instance).
Because GCS is so rare, it may be hard for you to find someone with the right experience. We have provided the names of some experts in carcinosarcoma. If there is no one near you, we feel strongly that it is worth a trip to visit an expert, especially with your unique findings. Someone with significant experience in carcinosarcoma (and in clear cell ovarian cancer) can also help address the questions of radiation. It may be helpful to watch or read the transcript with Dr. Growdon, Interview #4 on "Diagnosis and Treatment" in which he discusses the role of radiation therapy in uterine carcinosarcoma. This is found under "Resources" tab - Interviews with Specialists.
We have many resources here and understand that navigating everything can challenging at first. But we also want to help and support, so ask questions here. Keep in touch and let us know how you are doing.
all the best,
Kathy Wilt
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