uterine serous carsinoma
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I cried for three months after dx
It was not normal for me. I had gone through menopause 15 years earlier, but the shock of the dx made me an emotional wreck for about an entire year. It did get better for me so hopefully it will for you.
Denise
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Another welcome
So sorry to hear that you are dealing with this. It is a shocking diagnosis, and we have all felt what you are feeling. Its good that you are 1A. I have read that younger women have a lower recurrence rate, and normal weight women, so you have that. Serous carcinoma of the endometrium 1A has several different possibilities. Did they tell you if you have Lymphovascular space invasion and how much of the uterine muscle was inflitrated. These affect the treatment recommendations. I think it is good that you get a second opinion. The emotional part of this is hard too. It is good to come here and share your feelings. Sometimes friends and family don't quite understand, but if they do great. But feel free to come here for support.
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UPSCSheila3 said:Hi, My wife was recently diagnosed with UPSC she's had a total hysterectomy and the stage came back from the pathology report as stage 1A grade 3. The size of the tumor was .4cm and the biopsies on the lymph nodes were negative. They still want her to go through the full course of chemo and she is very concerned about going through the chemo because of the side effects and that if she is cancer free after the surgery she would be putting her body through a lot unneccesarily. Has anyone here at this staging not followed the standard protocol and if so how are you doing? Also has anyone here taken a homeopathic,change of diet/ supplements etc. approach without doing the standard protocol and is still NED, and is there anyone here who has followed the standard protocol but also used homeopathic/diet/supplements along with it and did it help and you're still NED? I've heard conflicting reports on whether taking supplements/antioxidants etc. should be or should not be taken during chemo and or radiation therapy. Thank you.
UPSC is a small stealthy cancer that hides. It will also develop immunity to certain chemos. I have it and initially only had 3 chemo rounds, now I wish I had six because I had a recurrence less than a year later. My initial stage was 1A and the docs felt it was gone, but it wasn't. They ignored the lymphadema in my legs. Never underestimate this cancer. Beat it while you can because if it returns to other locations it's harder to kill.
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Tell us moreLasha12 said:UPSC
UPSC is a small stealthy cancer that hides. It will also develop immunity to certain chemos. I have it and initially only had 3 chemo rounds, now I wish I had six because I had a recurrence less than a year later. My initial stage was 1A and the docs felt it was gone, but it wasn't. They ignored the lymphadema in my legs. Never underestimate this cancer. Beat it while you can because if it returns to other locations it's harder to kill.
I'm so sorry to hear that you've had a recurrence so soon after your initial treatment. Have your doctors suggested next steps? Do come back and tell us what the plan is.
But I suggest you start a new topic so that other members can respond more easily. It can be tough to spot a new message within a longer, older thread like this one.
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UPSC recurrencecmb said:Tell us more
I'm so sorry to hear that you've had a recurrence so soon after your initial treatment. Have your doctors suggested next steps? Do come back and tell us what the plan is.
But I suggest you start a new topic so that other members can respond more easily. It can be tough to spot a new message within a longer, older thread like this one.
I went through 6 chemos of Taxol, Avastin and Carboplatin. My CA-125 went up to 600, zoomed back down and then slowly back up during all three chemos and subsequent Avastin maintenance. One week it went up 48 points. I started with CA-125 254 and now, after three rounds of Avastin maintenance it's Ca-125 419. Avastin is not strong enough as a sole maintenance drug for UPSC. plus I was getting horrible side-effects. I'm preparing for a 2nd opinion at Memorial Sloan Kettering in NY. The oncology department at Penn Medicine in Philly appears to be ignorant of this cancer. WHY they only gave me three chemos when first diagnosed is incredible. But, I'm reading on some good UPSC maintenance drugs like Keytruda/Cenvima. Can't wait to start treatment at Sloan Kettering. I feel OK though, on disability but do my own housework, walking the dog, own shopping and paperwork.
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UPSCSara711 said:Hi I'm New and have Stage 1A PSC
Hello everyone, I was curious what age everyone is on here? My DR told me this cancer is rare but also even more rare in someone my age. I'm 43.
I just had a totaly hysterectomy 3 weeks ago including my ovareis and some lymph nodes. I'm so sad and freaking out abt losing my ovaries and terrified about going into menopause. So that's one issue that I was hoping to hear from the younger women from. (maybe there is another thread on this?)
But the bigger issue is now they want me to do chemo and radiation. Which I DON'T want to do. I'm terrified and going thru this alone. I'm not married and I have to work and just don't know how I'll do these treatments and work thru it. I work in retail sales/cosmetic dermatology so it's the beauty business and very fast pased job. I'm other wise very healthy and very fit active person. So the thought of being so sick and no energy from chemo, losing weight and my hair is unbearable to imagine. I already have made up my mind not to do the Radiation becasue I'm so young and don't want to do any more damage to my vaginal tissues as I'll already be dealing with menopause.
The Chemo I'm considering. I also went to a funtional medicine cancer clinic that does all the natural treatments too so I'm exploring all my options.
UGH This is all just so shocking and I'm freaking out. Glad I found this site and can hopefully I'll get some good info from all of you who understand what I'm going thru.
I felt that way too. I had a good job but it was high maintenance and a point person for the office. I hated the thought of chemo and radiation, but it wasn't as bad as I thought and you do recover. Please take the maximum amount of chemo and radiation. Take a disability or unemployment. I was lucky and had job disability but eventually lost my job. I'd rather loose a job than my life. If UPSC comes back it will be MUCH harder to get rid of. This is the time to bombard it with all you got. And, when done, if you have any lymphadema in legs or pains in your cervical area, EVEN with a low Ca-125 demand a PET scan not a CAT scan. This was the clue my cancer had not gone away. It can be an indication of UPSC hiding. Same for pains in cervical area especially in the cervical cuff.
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Second opinions are greatLasha12 said:UPSC recurrence
I went through 6 chemos of Taxol, Avastin and Carboplatin. My CA-125 went up to 600, zoomed back down and then slowly back up during all three chemos and subsequent Avastin maintenance. One week it went up 48 points. I started with CA-125 254 and now, after three rounds of Avastin maintenance it's Ca-125 419. Avastin is not strong enough as a sole maintenance drug for UPSC. plus I was getting horrible side-effects. I'm preparing for a 2nd opinion at Memorial Sloan Kettering in NY. The oncology department at Penn Medicine in Philly appears to be ignorant of this cancer. WHY they only gave me three chemos when first diagnosed is incredible. But, I'm reading on some good UPSC maintenance drugs like Keytruda/Cenvima. Can't wait to start treatment at Sloan Kettering. I feel OK though, on disability but do my own housework, walking the dog, own shopping and paperwork.
Hi Lasha, I was. heartened to read your note that you will be going to MSK for a second opinion. I went there for that as well. The doctors there are very familiar with UPSC and know the latest research. They see so much more of it than smaller facilities because of their size and draw. It is a rare cancer as you well know so it's great to go to a place where they treat a lot of it. I wish you the best when you see them. I found the facility to be welcoming and reassuring.
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Hi again, went to FoxChase Cancer Center with Dr. Rubin and started Immunotherapy on Keytruda and lenvima. After a bumpy start, it's working. My Lenvima dosage is very low, 4mg. Start on 4mg and continue to 10mg ONLY if you can tolerate. I couldn't tolerate 10mg but the 4mg is working very well. Doctors will try a higher dose but sometimes less is best! I am now platinum chemo resistant and avastin was terrible, got off fast. I agree with another poster about incorporating diet, stress, exercise with fighting UPSC. Am now on an organic anti-cancer diet, no sugar or coffee and very careful what I eat. No meat. Constipation controlled by 5teaspoons of organic olive oil daily with Colace. Water all day long. Exercise and XyLiMelts for outdoor nausea (sticks to gums). Am very encouraged. Understand I'll probably never be cured but have accepted this maintenance treatment and can enjoy life.
Best - hope you are doing well!
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I am stage 1A with no myometrial involvement, neg peritoneal washings. I am going to a major cancer center. The Medical Oncologist saw "no indication for postoperative chemotherapy". I am doing 3 VBT. I am really nervous about it because it seems that most get chemotherapy. Med Onc showed us the 2022 NCCN guidelines that they follow for serous cell and it clearly says with negative peritoneal washings Observe or 3 VBT.
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What I really regret back then is that I didn't have the knowledge or the guts to scrap the full Laproscopic Hysterectomy, Chemo and radiation that did NOT stop my UPSC cancer from coming back 1/2 year later, and just start with the Immunotherapy. Immunotherapy is the only treatment that has helped. In any case, ask for your Caris Test and discuss your cancer biomarkers with your oncologist. Ask why Immunotherapy will NOT be considered the 1st mode of treatment? Familiarize yourself with cancer Biomarkers. Knowledge is power!
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Hi! The cancer reoccurred in my peritoneal area. Why did you refuse the Avestin?
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They are doing clinical trials right now with immunotherapy as first line treatment. In addition to the link, Dr. Slomovitz does a video to explain.
https://www.targetedonc.com/view/novel-strategies-being-investigated-in-endometrial-cancer
Brian M. Slomovitz, MD, MS, FACOG: The landscape for endometrial cancer is very exciting. We have 5 first-line global trials evaluating immunotherapy pushed into the first line. Four of these trials are looking at chemotherapy plus or minus immunotherapy, and the fifth is looking at lenvatinib-pembrolizumab vs chemotherapy carboplatin-paclitaxel in the first-line setting. There’s no doubt that if any trials are positive, the treatment paradigm will change and will move I/O [immuno-oncology] to the first-line setting.
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Takingcontrol58: Wow, mind if I ask what hospital provided such a caring and knowledgeable professional whose PhD had molecular biology?
His/her attitude is pretty rare, I felt as if my oncologists were just using "standard operating procedures" without much thought outside of it. And, whoever refused Avastin, I also couldn't tolerate it but hear many people can for years. Everyone is different that's for sure.
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Thank you! That is great news! I just look over the government trails list. Many are too far away. I hope all our doctors are keeping up with these new developments and trails they might get in on.
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Wow, the video: Looking Toward the Future of Endometrial Cancer Management - "immunohistochemical screening, which tests for MLH1, MSH2, MSH6, and PMS2 to determine if there’s a loss of expression", I am positive for all of those. I'm going to call Dr. Slomovitz for a 2nd opinion or if my treatment doesn't work, maybe a clinical trial. Thank you for sending the link!!!
if there’s a loss of expression.
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Taking Control 58 said above that she did 6 rounds of carbo taxol, so she would be in the "did both" category.
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I hope so. December 17 diagnosis, had hysterectomy & lots of really good news, but serous is so scary. I’ve never been such a wreck.
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I hear you. I don't think we're there yet though, as carbo taxol is still being recommended first for so many uterine cancers. Outside of studies, I only know of one person doing immunotherapy first (with chemo). I don't know of anyone doing just immunotherapy but I'd love to hear from more women.
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I hear you too! Trying to decide what course for mine reoccurring extensively in my peritoneal area. I’ve had a hard time clearing my fears & head to move on with my life as I make decisions. Just missed one research study…going to MDANDERSON to see what my oncologist there has to say. Sadly he won’t do a remote visit.There seems to be a start up if a number of hopeful treatments but the true go for me is to be here if & when they are approved which may be years.life style & diet & supplements have become serious words to me. What to trust is another question. I’ve slowly switched somethings when I realized over a decade ago how GMOs mainly roundup ready were reshaping out soil, air, water & plants…then reevaluated food again after reaching diabetic range….now this now serous cancer when 1st found in 2020… then 1a& NED till found again a month ago. Good luck & prayers for everyone….keep updating efforts & outcomes and anything else you need heard.
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