Endometrial Cancer: Noticing my blessings every day

Hi Colleen. I was diagnosed on March 8, 2019 with stage 1a Endometrium Carcinosarcoma (Malignant mixed Mullerian Tumor). Because it was stage 1a I thought I was in good shape as far as cancer goes because it was diagnosed so early. I then had a consultation with my chemotherapist and learned that my type of tumor is extremely aggressive and had never been caught at this early stage before, anywhere in the medical community, so there was no data on how it should be treated. We (my care team and I) decided to treat if as if it was late stage to achieve the best results and lessen the chance of reoccurrence. On April 4, 2019 I had a robotically assisted total laparoscopic hysterectomy with bilateral salpingo-oophorectomy and sentinel pelvic lymph node sampling. Peritoneal washings for cytology. All lymph nodes and washings were negative for metastatic disease and my tumor was confined to a small area in the uterus On May 23, 2019 I began chemo, 6 rounds of Carboplatin and Taxol, administered every 3 weeks. Half way through my white blood cell count dropped too low so my 4th round was delayed by 3 weeks at which point my count rose to the minimum required to resume treatment. My doctors had also stated that they would resume treatment by the 3rd week even if I was a little under the 1.0 min. because they did not want me to miss a complete cycle. At this point (4th cycle) Neulasta was added to my regime. I complete my chemo on October 2nd and on November 7th began my 25 rounds of pelvic radiation with 3 rounds of brachytherapy during the last 3 weeks (4 days pelvic then brachytherapy on Friday). I completed treatment on December 17, 2019. Overall, I have been very blessed. My tumor was caught early and even with the intense chemo I received, I did not experience the expected side effects. I had no nausea throughout treatment and due to the IV hydration and steroids I was receiving during chemo I actually felt great during the first three days after treatment. On the 4th day the steroids wore off and experienced moderate body aches and pain. On the 5th day I had mild body aches and by the 6th day I felt great again. Once the Neulasta was added to my regimen, the steroid effect didn't last quite as long. I felt great the first day and a half but would then experience body ache and joint pain for the next 4-5 days before feeling great again. I was told that was because the Neulasta affects the bone marrow to keep your blood cell count up. My only lasting side effect seems to be the ongoing fatigue. I noticed an enlarged lymph node in my neck and after a needle aspiration and bone marrow biopsy, was diagnosed with marginal zone lymphoma (B-Cell) on Feb. 20, 2020. Blessedly, it did not and still does not required treatment. I have been receiving quarterly scans and visits with my doctors and there has been no new cancer or reoccurrence. I was also told at one visit that my lymphoma had actually improved. My last quarterly was March 11, 2021.

Hi @naturegirl5
You'll notice that I included your discussion thread in the Gynecologic Cancers group https://connect.mayoclinic.org/group/gynecologic-cancer/ so that other members, like @patricia5 @hhereford @bruges @glenda007 @7429, who also have experience with endometrial cancer can see yours and @harriethodgson1's stories and connect.

NatureGirl, what is your follow-up now? Will you need chemo or radiation? Will you return to Mayo for follow-up or go to your local cancer center?

m1b1r9, I am so sorry to know that your cancer diagnosis was rare and aggressive. It's a blessing that you were able to go to MD Anderson for another opinion and are getting treatment at an excellent cancer center

I was diagnosed with endometrial adenocarcinoma, initially FIGO Grade 2 at my local hospital, and then Grade 1 by pathologists at Mayo (the slides were sent there following my referral). I also had positive peritoneal washing which caused me (and still causes me) stress and anxiety. My husband is a pathologist and between him and my surgeon, it was explained to me that the positive washings were likely due to the hysteroscopy I had at my local hospital a week prior to my surgery at Mayo. My surgeon said that she has seen this more frequently. Prior to 2009, my cancer would have been upgraded to Grade III, but the International Federation of Gynecological and Obstetrics (FIGO) standards have changed which opens a huge discussion about what these washings mean and so what the follow-up treatment should be. In my case, these cancer cells are not biologically viable in the pelvic cavity which is what I worried about.

Both you and I know a whole lot more about endometrial cancer then we ever wanted to know. I will keep you, your family, and your cancer care team in my prayers.

Sory to.hear about your worries.and diseases. I was also diagnosed with EC Grade II, going to have surgery next 2weeks. How was your recovery after the surgery ? What is the post surgery treatment ? Thank you

@vini I was wasn't certain if you were asking about my post from awhile back or about another poster. I'll answer your question about recovery and post surgery. I was treated at Mayo Clinic in Rochester, MN. After surgery I had fatigue for a few days. I was advised to avoid lifting anything heavier than a grocery bag for a period of time - I don't recall how long. Maybe 2-3 weeks? The nurse during my pre-surgical prep gave me excellent advice on when I would know if I was ready to driver my car again (advised not to drive after surgery). She said, sit in your car, put your seatbelt on, and press the brake quickly as if making a sudden stop. Turn to the right or left. If that feels comfortable, you are ready to drive. I began driving again 2 weeks post-surgery. My small external incisions on the abdomen healed within a month and 6 weeks post surgery I saw the GYN-oncologist (surgeon) again. She said I was healing well and the vaginal cuff was healing. Because I was staged 1a (endometrial cancer-adenocarcinoma) and there was no spread to lymph nodes, I did not have any more treatment (radiation or chemotherapy). I am now 1 1/2 years post surgery, just had a surveillance check at Mayo Clinic where I had my surgery, with no recurrence. I hope this helps.

My experience is the same--endometrial cancer and surgery. My cancer symptoms didn't quite match the ones on the Mayo website. Fortunately, my primary care physician listened to me, believed me, and took action. Cancer surgery last year, open heart surgery this year. I'm still standing, thanks to Mayo.

Hi all, I know many of you have crossed paths with fellow member and mentor, @naturegirl5. Today she is featured in our Member Spotlight. Learn what she treasures about connecting with you on Mayo Clinic Connect, what inspires her, and her answer to the question: Kittens or Puppies?

- Facing reality without argument: Meet @naturegirl5 https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/facing-reality-without-argument-meet-naturegirl5/