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Endometrial Cancer: Noticing my blessings every day
Gynecologic Cancers | Last Active: Feb 2, 2023 | Replies (100)Comment receiving replies
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.
Replies to "Hi Colleen. I was diagnosed on March 8, 2019 with stage 1a Endometrium Carcinosarcoma (Malignant mixed..."
Thank you for your reply, hearing other stories is so helpful. it sounds like you did really well and glad you are monitored closely. I just finished chemo and will start 25+ pelvic radiation soon. ( stage III clear cell uterine) I did really well with chemo but am now experiencing a lot of fatigue. Just trying to prepare myself for what will happen coming up. and how long it will take me to return to work. healthy and healing energy to all. xoxo
Colleen,
Your post was a great find for me, as we had almost identical diagnoses. Thank you for sharing your specifics. I hope you are still doing well with the lymphoma. It's helpful to know you did so well with the chemo, though I note your hiatus due to low WBC's.
What follows is a description of my own cancer journey to date, in hopes someone else can identify with or benefit from my experience:
My only symptom was a few drops of blood in the toilet which could have easily gone unnoticed. Ultrasound revealed a mass in my uterus, and I underwent a radical hysterectomy 2 months ago. Pathology revealed uterine carcinosarcoma. Sentinel nodes, pelvic washings were negative and my CA-125 was normal. The cancer was entirely confined to a polyp in my uterus with no myometrium invasion. My GYN-oncologist's recommendation was 3 rounds of chemo (carboplatin/taxol) @ 3 week intervals, then 5-6 weeks pelvic radiation, then 3 more rounds of chemo. Interestingly, he did not tell me my stage when he gave me the diagnosis, and kind of left me hanging as to whether a CT scan that he promptly ordered would be affect the diagnosis. I had the CT scan soon after our initial meeting, and was later told by one of the chemo nurses it showed "a couple of spots to monitor, but no tumor masses elsewhere"; my GYN-oncologist did not respond to a request for a phone call to clarify this. I was confused.
Thus, when a friend offered to use a "connection" to get me an appointment @ MD Anderson Cancer Center in Houston I jumped at the chance (would have happily taken an offer to go to Mayo!). Less than a week later I met with one of their GYN-oncologists for a 2nd opinion. MDA reviewed all the existing pathology, ultrasound & CT reports. They also obtained the original slides from my surgery and had their own pathologists review them, and took all that info to their tumor board. I learned I was Stage 1A, which was a huge surprise to me, and greatly improved my mental wellbeing. The tumor board recommended "cuff & chemo": 5 treatments vaginal cuff brachytherapy and then 6 rounds of carbo/taxol chemo. (Note the difference in radiation from my own GYN-oncologist.) For anyone reading this, if you have a rare diagnosis, please consider a 2nd opinion from a research institution like Mayo. That consultation changed my outlook from one of reluctant acceptance to empowered self-advocacy.
I subsequently met with my local radiation oncologist, who agreed with the MDA recommendation for brachytherapy (not pelvic radiation). I have already had 2 rounds of chemo, so the radiation will come after my 3rd chemo. My chemo response was fairly standard. The first two days jazzed up on steroids, nausea well-controlled, lethargic days 3-5, and felt pretty normal after the 6th day. I find that my heart rate increases during exercise, much more so than in my pre-chemo workouts, so I have to moderate workouts accordingly.
One final note about the CT scan mentioned above, my GYN-oncologist ordered follow-up tests to look at the two lesions: an MRI for my liver and a bone scan my sacrum. I had both tests last week, and I've seen the reports in my patient portal, and will review with my GYN-oncologist this week. The bone scan report was clean. The MRI report "cannot exclude metastasis" in my liver. MDA had already told me a metastasis is highly unlikely, and I hope subsequent tests bear this out. This is one more instance of the roller-coaster ride of a cancer diagnosis. Overall, I know I am very fortunate that my cancer was caught early, but these uncertainties can be a bit unnerving.
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Wow, @jerzgirl, that is quite the story. I'm so glad you shared the details as it will help me to connect you with others who may have similar experiences. I'm not familiar with malignant mixed mullerian tumor. That must've been concerning to be such a unicorn. It sounds like you worked very closely with your team and felt confident in the care you received despite its rarity.
I know several members in the group were asking about what radiation is like for a gynecological cancer. Perhaps you wouldn't mind sharing your radiation experiences in this discussion:
- What's radiation therapy like? What kind did you have? Got tips? https://connect.mayoclinic.org/discussion/whats-radiation-therapy-like-what-kind-did-you-have-got-tips/