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My Uterine Cancer Journey Decided No Chemo/Radiation
Today I had my post op consultation with my doctor. I had a full robotic laparscopic hysterectomy on 10/19. During the surgery, my doctor also took out the closest lymph node and took a biopsy of the omentum (large flap near stomach). She said that if cancer has spread, good chance they are in these two areas. I had no pain, discomfort only. Felt 60% of myself right after the surgery. Each day I felt about 5% better. By the 3rd day I didn't need to take anymore advil/tylenol
My timeline:
I had lots of vaginal bleeding on 9/12, on 9/14 had a uterine biopsy, 9/16 a transvaginal ultrasound, 9/28 a D&C, CT scan on 10/12 and then the hysterectomy on 10/19. The biopsy showed serous cancer cells and the D&C confirmed it. CT scan of the chest, abdomen and pelvic showed it hadn't spread. Today I learned my cancer was stage 1A and grade 3. As I understand it stage 1A because it remained in the endometrial lining and it was in less than 50% of the lining. Grade 3 because serous cancer is aggressive. The treatment she suggested was 6 rounds of chemo and 5 brachytherapy radiation to be extra sure undetected cancer cells aren't anywhere else. I declined because I don't want to introduce anything to my body that will change it forever....if cancer returned I'd consider hormone therapy, immunotherapy maybe radiation. Also, even with chemo/radiation there is a chance cancer would return. I'm nearly 61 and have always been healthy with a good immune system. I have always been someone who wants to enjoy life even if it's for a short while as oppose to extending my life but being miserable. After I declined the chemo, she mentioned there were some other patients with the same diagnosis and same grade and stage who also declined chemo/radiation. And they are doing well. I suggested I come in every 6 months for a CT scan. She mentioned that I would notice something before a CT scan so to stay aware. If I have vaginal bleeding, cancer may have gone to the top of my vagina, if my appetite decreases it may have gone to my stomach and if I have trouble breathing, it may have gone to my lungs. I'm to see her immediately, if I have any of these symptoms and then she'd order a CT. Good thing my fibroids left my body during the hysterectomy so I don't even have to wonder if the bleeding is from fibroids! I return in 4 weeks for the 6 week after hysterectomy check. And then after that, I see her every 3 months. I've been praising and thanking Jesus all day! He gave me peace during this entire journey. I had no worries, slept very well, prayed all the time, focused on taking one day at time and remembering that God is in control. Everybody's journey is personal, and everyone needs to make the best decision for their life and circumstances. Be well informed and listen to your body.
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@sabwal I'm about to start on Lenvima and Keytruda for stage 4 serous carcinoma endometrial cancer. It will be my 5th type of chemo. First in pill form so anxiously awaiting how well I tolerate the side effects, that sound promising by the way. I had my hysterectomy in Aug 2025. I've never had radiation, only chemo. I never got sick from the chemo treatments. I had 21 total. Different kind. Carboplatin and paclitaxal first. After surgery was found to be HER2 positive to Herceptin was added to the carbo/taxol. Didn't work so started Enhertu which was a stand alone treatment. Didn't work. Started doxorubicin and had 3 treatments of that. The 4th was actually scheduled for today, Aug 27th, but after PET results it was determined it would be useless. Oncologist and my oncologist/surgeon, who's working with her, decided to try the Lenvima and keytruda. There's always hormone blockers since my tumors were hormone fed but I'm just praying this treatment will make a difference. My point is, there's no way I would have stopped after the first treatment did not work. Nor the 2nd, 3rd, or 4th. I will keep trying until we find something that works, if it only buys me a little more time, or until we've exhausted all options. I would at least try a treatment ONCE, maybe twice, before throwing in the towel. I was 67 when diagnosed so age could play a factor in deciding. Not everyone suffers with chemo treatments.
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2 Reactions@carol1024 thank you for the insight. So you did not have CCEC? It's aggressive & less understood. I'm more concerned by other chemo side effects - fluid around heart, for example. I also have a gene mutation that certainly complicates things.
@sabwal I am going through chemotherapy now, just had the second infusion in a series of three. The hope is to shrink the cancer enough to remove it as it is pressed up against my bladder. I also have a blood clot in my lung which has caused the postponement of the hysterectomy. Additional chemo and possible radiation are expected. There have been side effects but most have been manageable. I experienced no nausea so far because of all the anti-nausea drugs they gave me. Now that I am following their recommendation, my bowels are working right. My stamina isn't what it was but I'm at about 85% most of the time. Day 3 and 4, after the steroid wears off, I feel my arthritis. Slight neuropathy in my fingers and a little sensitivity to bright sunlight. Hair has mostly fallen out but there are quite a few choices for headgear these days and I had already cut it short in anticipation. I wouldn't have chosen to spend the next 6 months of my life this way, but I know several people who have gone through these treatments and made it out ok. They are cancer free.
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1 Reaction@danae25 please clarify - do you have clear cell carcinoma. It's a different situation from others.
@sabwal CCEC? I had echocardiogram every 3 months because of potential heart problems from the Herceptin, Enhertu and the Doxorubicin. The Doxorubicin was the worse. Very potent. Good thing I don't smoke or drink. My ejection fraction on echo was always 60% which was in the normal range. Seems my heart handled it well. I'll continue to get them for a bit. My only mutation is the p53 gene so far. They are doing a comprehensive biomarker panel with tissue they still have to get a better idea of what treatments still wait for me should this one not work.
@carol1024 yes, clear cell endometrial carcinoma - rare & aggressive.
Thanks for sharing which treatments seem most problematic.