Uterine clear-cell carcinoma, chemo treatment unknowns

For a different issue my hometown doctors were not helpful either. This was menopause-related and I received very poor and outdated information from my home town doctors that affected my quality of life. However, I didn't know where to go or who to ask and it wasn't until I went to Mayo Clinic for endometrial cancer that I then got a referral to the Women's Sexual Health and Menopause Clinic that provided up-to-date and helpful information.

My advice is not to blame yourself for what you didn't know. You trusted your local doctor because that's what we do. You cannot change the past but you now know to advocate for yourself going forward. I'm now doing the same and I figure if a doctor or other medical provider gets arrogant or snippy with me (and that happened around the menopause issues) I'm not putting up with that and will find another doctor.

You've been through something very difficult that not many people go through. Please remind yourself to be compassionate with yourself and forgive yourself for what you didn't know in the past.

Does this help?

I was just diagnosed 8 weeks ago with stage 3a mixed clear cell and serous cancers. I am also HER2 positive. I had a radical hysterectomy and I've had my first cycle of chemotherapy. The cancer was contained to the uterus and one fallopian tube. I'm both realistic about this cancer and I'm hopeful that surgery, chemotherapy and life style changes will be curative. But I to would like to know what others are doing to be cancer free long term.

@denisestlouie. The diagnosis must have been a huge emotional shock for you. Since you were diagnosed 8 weeks ago and have already had surgery and started chemotherapy I'd like to say that your cancer team is moving ahead quickly with you. And that is wonderful. May I ask your treatment plan? What chemotherapy are you receiving and what is the schedule?

I am also a cancer survivor. I was diagnosed with endometrioid adenocarcinoma FIGO Grade 1 in 2019 at age 67 years old. Within a week after diagnosis I also had a radical hysterectomy including ovaries, fallopian tubes, and cervix. The cancer was staged 1a. I had a recurrence in 2021 and had 25 external radiation treatments and 2 brachytherapy treatments. Since the recurrence I have been working with an integrative medicine physician at Mayo Clinic whose expertise is in gynecological oncology. With her guidance I have modified my diet by working with her and a nutritionist. She is a researcher and clinician and told me that there is very little published on the effects of diet on uterine cancers. There is considerable research on breast cancer and so much of what she relays to me comes from that research. One of her suggestions was to consider subscribing to Consumer Lab because this group tests a number of products including supplements. That site is her "go-to" for their research citations and their own testing. You do have to pay for a membership but I have found the price well worth the money.

ConsumerLab.com:

--https://www.consumerlab.com/

I schedule my cancer surveillance appointments as recommended. In fact, that was how the cancer recurrence was found by a pelvic and vaginal exam as I had no symptoms. I now go every 6 months for these appointments and my next appointment is on November 19. I'll have a physical exam and CT.

I have thoughts of cancer most every day however the thoughts do not cloud the rest of my life. Usually. I have learned through mindfulness practices to let those thoughts go. If the thoughts become burdensome then I have a toolbox of mindfulness and coping skills I can go to.

In sum, I am more careful about what I eat, I exercise daily, and I rest when needed.

How are you feeling after your first cycle of chemotherapy?

Thank you for your reply. My chemotherapy regiment is The regiment will be:
Carboplatin AUC 5
Taxol 175mg/m2
Heceptin 8mg/kg
Every 21 days x 6 total cycles.

I'm asking for immunotherapy. Actually I'm demanding it.
I am currently 64. Two years ago I was so diagnosed with Crohn's disease and I was taking a biologic and I wonder if being immunosuppressed had a factor in developing cancer
Because of Crohn's I started working with a holistic/ functional Doctor and before that a Crohn's colitis dietitian. I have made many life style changes before the cancer diagnosis. I had a therapist through the IBD clinic I go to for Crohn's. Most days I've been on the side of I've going to beat this, but last night the reality that my cancer is rare aggressive, and doesn't respond to chemotherapy was overwhelming. My oncologist is great, I don't understand why I'm being treated with a therapy that we know is effective other than no one is studying clear cell uterine cancer because it's so rare or why they are using the the immunotherapy that is being used with cell cell kidney cancer
My first treatment was 8/19. I read that fasting before and after chemotherapy for gynecological cancers helps reduce the side effects from chemotherapy. I had one one day I felt tired and three day of systemic inflammation which is what I felt with a Crohn's flare. On day 8 I woke up feeling on top of the world. I hope each round goes this well. Im also walking my dog every morning 2 miles and I'm have a trainer for strength and balance. I'm doing everything in power to feel in control.
I'm still in shock.

Hi there,
I'm surprised that the doctors recommended therapy so soon after your mother's operation. In Canada, and likely elsewhere, there is a 6-week healing time recommended before chemo. I'm not sure if this is the case with radiation. I have a high-grade serous-cell endometrial cancer. It's extremely aggressive, but I still had to wait the 6 weeks after my total hysterectomy.
Perhaps you should get another opinion.

@ejohn how is your mom doing?