Endometrial Cancer: Noticing my blessings every day

Posted by Helen, Volunteer Mentor @naturegirl5, Aug 20, 2019

I was diagnosed with Endometrial Cancer, FIGO Grade 1 in late July. I live in the Upper Peninsula of Michigan and asked for a referral to Mayo. A few days after the referral, I met with my GYN-Oncology team, and a few days after that I had a radical hysterectomy at Methodist Hospital. The surgery was two weeks ago today. I am grateful that I had the means to go to Mayo Clinic, for my surgeon and her incredible team, and that I am now back home on this gorgeous day surrounded by support and love from my family and friends. (The cancer was staged Ia - caught very early and no other treatment is recommended). My life is a gift for which I am very grateful.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@cichocki06

I am curious how did you know to fast before Chemo?

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My Mayo oncologist is very much into nutrition as a treatment. He also recommends fasting 5 days a week, eat breakfast & lunch, skip dinner. I fasted for 36 hours prior to chemo. Since the chemo was looking for cancer to attack, it is better to have an empty stomach rather then having food absorb the chemo.

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@miriam57

Thankyou for sharing. I wondered how it gets with each treatment. Just worried about blood counts dropping. Going to have 3 rd round on Feb. 23, 2021

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Just be especially aware of your white blood counts, to be sure they do not fall too low as that makes you more susceptible to infections.

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@starko

Just be especially aware of your white blood counts, to be sure they do not fall too low as that makes you more susceptible to infections.

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Thankyou
What is too low and what do they do for it.

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@miriam57

Thankyou
What is too low and what do they do for it.

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3.8 - 11.2 10(9)/L is normal & safe. There is a medication whose name I can not recall that will up your white blood count if it dips too low.

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@starko

3.8 - 11.2 10(9)/L is normal & safe. There is a medication whose name I can not recall that will up your white blood count if it dips too low.

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@starko, was the medication Neulasta (pegfilgrastim) or Neupogen (filgrastim)? Both made of a natural protein known as granulocyte-colony stimulating factor (or G-CSF) and help boost the production of white blood cells.

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@starko

My Mayo oncologist is very much into nutrition as a treatment. He also recommends fasting 5 days a week, eat breakfast & lunch, skip dinner. I fasted for 36 hours prior to chemo. Since the chemo was looking for cancer to attack, it is better to have an empty stomach rather then having food absorb the chemo.

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I'm sure your oncologist took into account the type of chemo you were to be given in recommending fasting. I was treated with Carboplatin and Taxol and was instructed to eat an early breakfast before each treatment to help coat my stomach or my body would not be able to tolerate the treatments.

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@jerzgirl000

I'm sure your oncologist took into account the type of chemo you were to be given in recommending fasting. I was treated with Carboplatin and Taxol and was instructed to eat an early breakfast before each treatment to help coat my stomach or my body would not be able to tolerate the treatments.

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Hi @jerzgirl000, so glad to welcome you to the Gyne gal group. You raise a really important point. Dietary needs are highly individualized depending on the patient AND on the chemo regimen.

What kind of cancer and treatments have you had? Where are you at in the cancer journey now? I look forward to learning more about you.

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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.

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Hi Colleen, Sorry for writing a novel in my last post but I failed to mention but wanted anyone undergoing a treatment regimen similar to mine to know that I did not and still have not experienced any side effects from the extensive radiation and brachytherapy I received. I truly hope this has been helpful for someone undergoing or facing this treatment.

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@jerzgirl000

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.

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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/

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