My mom has Serous endometrial carcinoma
My mom just got her biopsy results back for serous endometrial carcinoma. I'm looking for advice on where to take her for treatment and what I should look for in the treating facility. What should I ask during the consult? I'm on the East Coast. Does anyone have any good recommendations for gyno oncologists?
I'm only in my 30s and my mom is my best friend. Life feels pretty bleak right now.
Comments
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starryeyes22, try to take a breath. It is overwhelming, but let see what we can help you with.
First let me saw she certainly has an AWESOME daughter to go out and start the work now. While this board can be quiet, we are out here and they chime in all the time.
First, you want to make sure you are working with a GYNECOLOGIC ONCOLOGIST. I suspect they will say she needs a hysterectomy, and again, the GYN ONC is who you want doing that. (Hopefully they are referring her to someone)
Only after the hysterectomy when they can get a better sense of it all they would make a plan on treatment she might need and complete stage what she is dealing with.
There is lots of good posts on what to do to be ready for pre/post surgery here and there will be tests in advance of surgery that is normal.
Again, try to take a breath. We are here.
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Welcome starryeyes22. Sorry to hear about your mother. I had serous carcinoma diagnosis 6 1/2 years ago. There are a lot of survivors here. Good for you for looking for a good cancer center. I am on the West coast so cannot recommend to you. But there are many. Don't read any studies that are older than about 5 years. Treatment has improved greatly. Feel free to ask questions. Read about hysterectomies here. Waiting will be really hard. Keep your Mother busy. We are here for you.
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Wow that's amazing that you beat it for that long! How long did it take you to get the right diagnosis and what symptoms were you having that led to them checking you?
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In 2009 I was 65 yrs old, lived in the Midwest, and was post-menopausal with a slight vaginal discharge that looked a bit like cafe au lait. I requested my PCP to perform a very thorough PAP test. That showed evidence of cancer cells. I asked to be referred to a gyecologic oncologist for a D&C. That procedure found Type I endometrial cancer cells. I had a complete abdominal hysterectomy with removal of uterus, fallopian tubes, 9 lymph nodes, and my ovaries but not the omentum. When I was discharged from the hospital, the surgeon told me that the pelvic wash looked clean and that I would not need further treatment. At my post-surgery check-up a few weeks later, I was told that an additional cancer - UPSC, a Type II cancer - had been found in a polyp in the lower region of my uterus when the slides from my surgery were reviewed. I was told that I would need to begin chemotherapy very soon because UPSC was considered "very aggressive and highly recurrent".
I quickly did my own research on further Tx (treatment) and asked my PCP for her thoughts. I also contacted a gyn/oncologist I knew in Germany - a breast cancer specialist. He got a second opinion for me from a top gyn/onc at Mayo Clinic in Minnesota who specialized in endometrial cancers. I traveled to Oklahoma City for another second opinion from a UPSC specialist there who was conducting clinical trials. Both second opinion doctors recommended that I add brachytherapy to the chemotherapy. Please do not hesitate to contact doctors on your own, but try to enlist help from your mother's doctors and from friends and acquaintances.
I returned to the surgeon (bringing the two second opinion reports) and asked to add brachytherapy. He sent me to a radiologist who scheduled my brachytherapy. I had a port (a Groshong catheter) placed in my upper chest in anticipation of chemotherapy infusions. I was able to have 6 rounds of Carboplatin/Taxol chemo with 3 rounds of brachytherapy "sandwiched in" between the 3rd and 4th rounds of chemotherapy. My chemo infusions took place every 3 weeks without any breaks needed, but my counts steadily dropped. I would have needed a break or some "additional help" if any additional chemo rounds had been needed. I was followed for about 6 years once my treatment concluded. More frequently at first and then annually.
I have had no further need for endometrial cancer treatment.
Remember, this was a number of years ago, and new treatments and drugs have been developed. I wish you and your mother every success. I was very grateful to have my daughter with me at all my appointments and to discuss my questions and concerns all along my journey with endometrial cancer.
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