Endometrial SEROUS carcinoma
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Mom needed some chemo first. Then, depending on her progress she will have a hysterectomy in January.. followed by more chemo and possibly radiation. It’s quite the journey.. she noticed symptoms early October and we have been navigating this journey ever since. ❤️
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Hi, dkbbjn and others. Yes, you are not alone. I’m not too far off from your situation. Copied from my profile:
Serous Uterine, Dx May 2023 at age 55, 6 to 10 months later than could have if Gyn was doing her job, IMO. Timely hysterectomy, biopsy Stage IIIc Grade 3 Serous, with one (of only one sampled unfortunately) pelvic lymph node involved. Timely chemo w/carbo-taxol and newly approved Dostarlimab added in third cycle — am dMMR :) . No serious side effects from chemo; fatigue of course. After first cycle had tingling and eye issues, then paid attention and learned about cold packs, exercise and L-Glutamine, religiously used those and all good. Being bald is convenient and I liked the long naps of chemo. Then 2 months of radiation, outside then inside focused of vaginal cuff. HATE-ed it — Painful, humiliating, and gastro issues. As of Dec. 1 however, PET scan, 3rd negative Signatera result and CA125 down to 7, now officially in remission 7 months after Dx. Psycho-social: I constantly hear I’ve done fantastic physically and mentally. Like, I’m female, ok? Dealing with family issues and regaining my physical self have been the greatest challenges, along with managing anger and loss upon learning my cancer is likely to return eventually, my life cut significantly shorter by a combo of bad luck and a lazy health care provider. I have “emotional support” cats who bring a lot of joy to my life and I look forward to finally visiting family soon. Hopefully blood cell profile will get better soon.
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PippiCat, thank you for sharing your story. I wouldn't wish this on my worst enemy but somehow, it is of some comfort to know we are not alone. Will you please keep us updated as your journey continues? I hope and pray the best possible outcome for us all. Hugs ♥️
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Just wanted to share some GOOD news! I had a PET scan done Fri after completing radiation for a recurrance in the retroperitoneal lymph nodes and then waiting 3 months. It came back showing no evidence of active malignancy and resolution of retroperitoneal lympadenopathy!!! I know I can't foresee the future but I want to give hope to others and I have to say I KNOW God has His hand in this and I'm so grateful. Continued prayers for us all!!
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That is fantastic!!
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great news!
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I just had my hysterectomy in December 2023. My diagnosis is papillary serous carcinoma, but there were no signs of cancer in the hysterectomy or lymph nodes. The mass was removed prior in an October hysteroscopy and it was contained within the one mass.
I went to the first chemotherapy, but the prep steroids made my blood pressure extremely high. Rather than continue and risk a stroke, I have decided to OBSERVE instead. They are being helpful to develop a plan for me, even though he said we could try the infusions without the steroids. The oncologist/hematologist is doing some new DNA screening blood tests monthly where a recurrence will show up sooner than in CT scans. Since I just turned 82, I'm feeling better to stay feeling well for now. So far my CA-125 is at 5, so I have high hopes I can keep exercising daily and caring for myself.
Since uterine serous is so rare, there are not many of us, but I truly understand the constant apprehensions we all feel. My very best wishes to all of you.
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I'm sorry to hear about your diagnosis and glad to know you have a care team you have confidence in. There are several people who post here who have the same cancer that you have, including me. Like yours, my cancer was contained in the tumor and there was no sign of it after the hysterectomy. I completed the chemo and the odds were that it would not recur since I was stage 1. Unfortunately it did. So, it is a really good thing that your team is monitoring you so often and so carefully. I think in your shoes I would make the same decision you are making to skip chemo and stay with very close and careful monitoring. Then, if it should come back, you can decide what's next. Chemo is certainly doable, but it can be hard on the body, so it makes sense to me to go with the odds.
Good luck!
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SSuzanne, yes, I hope they are testing for dMMR, POLE, p53, etc...clinical trials show genetics that have these genetics do positively respond to immuneotherapy. Push them. If you are working with a gynecologic oncologist they should be aware of some of the exciting results of these tests.
I know they say USPS and a few others are 'rare' but endometrial/uterine cancer is increasing. So good to hear you continue to look at diet and exercise to make you well.
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I would love to be seen at MD Anderson but my husband and I are both retired and not 65 yet so we have insurance through Healthcare.gov and there is no plan that includes MD Anderson. I hope you're doing well and thanks for taking time out of your day for your advice.
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This is my first post. I was diagnosed in August 2023 with high grade uterine serous carcinoma. Within 4 weeks and consultations with 2 gyn/onc surgeons at major cancer centers, I had a complete hysterectomy by laparoscopic robotic surgery. My cancer was staged at IIIC1. The tumor in my uterus completely penetrated and affected the cervix and several sentinel lymph nodes. The omentum was clean and removed along with the ovaries and fallopian tubes , the bladder tacked up and a vaginal cuff constructed. The cystoscopy showed no disease or damage.
During my recovery from surgery, I complained of feeling like a hot poker was being stabbed inside me, and I went back and forth with trouble emptying my bladder and then losing control, along with diarrhea and constipation. I was told that nerve irritation was common with removing all organs vaginally.
A urinalysis at my 2 week post- surgery appointment showed a staph infection! After a week of antibiotics, I felt relief for a few days. Then pain returned. Incontinence was still a problem, as was constipation. Finally a CT scan showed Diverticulitis, which I had never had before. I was prescribed two different antibiotics. Now I had to figure out how to repair my gut biome and adjust my diet. The oncology dietician was not very helpful, but eventually I got it worked out. One thing that eventually helped is using a daily portion of Benefiber, a prebiotic powder, in my morning beverage. I also refused to take Zyprexa “to stay ahead of nausea,” as it caused severe constipation and dizziness. The nausea control in my infusions has been sufficient.
Yesterday I had my fifth carbo taxol JEMPERLI infusion, finishing with application of a Neulasta “patch” that will auto inject tonight, 27 hours post infusion. It is to keep my ANC white blood count high enough for me to safely receive my 6th infusion in February. Based on the previous 2 applications, I will have bone pain and muscle weakness in my legs, as the drug draws from the bone marrow to increase white blood cells.
My biggest issue now is Neuropathy. I get burning and tingling sensations in my hands and feet, fingers and toes, and my walking is often a bit unsteady, which I am told is from muscle weakness. Claritin, Naproxen 500 mg and acetominaphen 650 plus lots of fluids, magnesium and mild activity help somewhat. Sadly, I’ve noticed the symptoms have increased after each round of chemo. No one can say if they will disappear after chemo is done. It’s been suggested I add supplements of B-6, Alpha Lipoic Acid and Benfotismine (B-1).
I’m wondering if anyone else has used this or another supplement cocktail for these symptoms?
Have the symptoms diminished or resolved over time?
I asked how they know if the chemo and upcoming 25 rounds of radiation have worked. Neither of the women’s centers use CA marker numbers in my case, since there are no tumors. I’m told there is no bio marker. They will rely on CT scans every 3 months for 2 - 3 years, then 6 months, and annually after 5 years. Knowing there is a fairly high rate of recurrence, I will have to use meditation and other tools as I live my life from scan to scan. I’m a fairly optimistic person, and also a realist. I don’t want to waste energy on worrying. By the same token, I hate having to plan my life around doctor appointments.
I’d appreciate comments, suggestions and insights on any aspect of this post that resonates with you. Thanks for reading to the end.
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This is my first post. I was diagnosed in August 2023 with high grade uterine serous carcinoma. Within 4 weeks and consultations with 2 gyn/onc surgeons at major cancer centers, I had a complete hysterectomy by laparoscopic robotic surgery. My cancer was staged at IIIC1. The tumor in my uterus completely penetrated and affected the cervix and several sentinel lymph nodes. The omentum was clean and removed along with the ovaries and fallopian tubes , the bladder tacked up and a vaginal cuff constructed. The cystoscopy showed no disease or damage.
They tested for 70 genes with no positive indicators.
During my recovery from surgery, I complained of feeling like a hot poker was being stabbed inside me, and I went back and forth with trouble emptying my bladder and then losing control, along with diarrhea and constipation. I was told that nerve irritation was common with removing all organs vaginally.
A urinalysis at my 2 week post- surgery appointment showed a staph infection! After a week of antibiotics, I felt relief for a few days. Then pain returned. Incontinence was still a problem, as was constipation. Finally a CT scan showed Diverticulitis, which I had never had before. I was prescribed two different antibiotics. Now I had to figure out how to repair my gut biome and adjust my diet. The oncology dietician was not very helpful, but eventually I got it worked out. One thing that eventually helped is using a daily portion of Benefiber, a prebiotic powder, in my morning beverage. I also refused to take Zyprexa “to stay ahead of nausea,” as it caused severe constipation and dizziness. The nausea control in my infusions has been sufficient.
Yesterday I had my fifth carbo taxol JEMPERLI infusion, finishing with application of a Neulasta “patch” that will auto inject tonight, 27 hours post infusion. It is to keep my ANC white blood count high enough for me to safely receive my 6th infusion in February. Based on the previous 2 applications, I will have bone pain and muscle weakness in my legs, as the drug draws from the bone marrow to increase white blood cells.
My biggest issue now is Neuropathy. I get burning and tingling sensations in my hands and feet, fingers and toes, and my walking is often a bit unsteady, which I am told is from muscle weakness. Claritin, Naproxen 500 mg and acetominaphen 650 plus lots of fluids, magnesium and mild activity help somewhat. Sadly, I’ve noticed the symptoms have increased after each round of chemo. No one can say if they will disappear after chemo is done. It’s been suggested I add supplements of B-6, Alpha Lipoic Acid and Benfotismine (B-1).
I’m wondering if anyone else has used this or another supplement cocktail for these symptoms?
Have the symptoms diminished or resolved over time?
I asked how they know if the chemo and upcoming 25 rounds of radiation have worked. Neither of the women’s centers use CA marker numbers in my case, since there are no tumors. I’m told there is no bio marker. They will rely on CT scans every 3 months for 2 - 3 years, then 6 months, and annually after 5 years. Knowing there is a fairly high rate of recurrence, I will have to use meditation and other tools as I live my life from scan to scan. I’m a fairly optimistic person, and also a realist. I don’t want to waste energy on worrying. By the same token, I hate having to plan my life around doctor appointments.
I’d appreciate comments, suggestions and insights on any aspect of this post that resonates with you. Thanks for reading to the end.
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