Endometrial SEROUS carcinoma
I was diagnosed with endometrial serous carcinoma 10/21. I had a total hysterectomy, chemotherapy, and brachytherapy ending 6/22. I had a CT and PET scan 7/23 which showed cancer recurring in the retroperitoneal lymph nodes. I have my last radiation treatment today (total of 28) and am wondering if there's anyone else on here on this journey. I don't feel like my future is too bright unless God intervenes. Anyone else on or have had a similar journey?
Comments
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Praying for protection, strength, and healing! What stage and grade are you?
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dkbbjn, hoping you can share a little more information with us but here are my thoughts. Not sure where you are being treated but ask if there did a genetic assay of your cancer. With endometrial cancer they are seeing that those with mis-match repair deficient (dMMR) and some of the other markers of the cancer, patients do respond to immuenotherapy. Additionally, ask about clinical trials. If you have any of these markers there are treatments that are starting to change how the standard of care is started, but those genetic tests are key.
Finally, you are a statistic of one. Sometimes that means being your own advocate so push for answers and see what is there.
Hugs dear one.
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Thank you for your response. I am receiving treatment at Texas Oncology or sometimes called Deke Slayton Cancer Center. I was originally told I was stage 1 after the hysterectomy. After it recurred, I asked the radiologist what stage it was before starting radiation and he said stage 3. I did have genetic testing done last year and it stated "Variant of uncertain significance identified: SMARCA4." As I said before, I just completed radiation today. I have an appointment to see my oncologist on Nov 1 and a PET scan scheduled for Dec 15. I have such a rare cancer and with such a poor prognosis I was just hoping to find anyone else going through this or a survivor. Thank you so much for taking the time to respond. ♥️
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I do not have the same kind of cancer as you do, but maybe ask for a referral to MD Anderson for their opinion. You can still be followed by by your oncologist at TX Oncology if you want. Just something to think about. No time makes a good point about everyone being unique and that genetic tests are key to treatment.
Jan
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I'm sorry that you recurred. I know just how that feels. I was stage 1 with UPSC and recurred just 18 months after chemo. I then did chemo a sexond time, along with herceptin, and had what my oncologist called a "complete response" (my CA 125 dropped back down to 7 after just two of the 6 rounds of chemo/herceptin). Nine months later I recurred again. The next step for me was avastin, which I have been on since January. I love this drug because I have had no side effects except a hoarse voice. My oncologist has identified the things we will try when avastin no longer works to slow the growth. After 4 years, he knows my priorities, and he supported my decision when I recurred not to take the "textbook" next thing for my cancer, and has three "next best" things that we will try when avastin no longer works.
I write all this to tell you that although the cancer we have does have as you say, a poor prognosis, that does not mean you are going to die or even feel sick in the near future. It's been two years this month since I recurred, and I feel great. For me, it was useful to decide what my priorities are and what my line in the sand is with side effects.
There are so many new cancer drugs that are targeted to the molecular profile of an individual's cancer. That's why it's essential that your cancer center is up on all the latest approaches. I hope you do as someone else suggested and connect with MD Anderson to make sure you have the best treatment plan.
Good luck.
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Thank you SO much for your response!! I try to stay positive but I was beginning to think there were no survivors out there! I do think I have a very good gynecological oncologist but I am going to call Monday to find out what kind of insurance M D Anderson takes for next year. My CA 125 # went from 16 to 7 after completing radiation in Sept so I'm happy about that. I would love to keep in touch with you and your journey. My next step is a PET scan Dec 15. Once again, thank you so much for taking the time to give me encouragement and I hope and pray the best outcome for you! ♥️
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You're very welcome. I have a kind of different approach to this cancer. I don't think of myself as a cancer warrior who is battling cancer. Maybe it is the nature of this particular cancer, but I didn't want to spend the rest of my life in a "fight" that I cannot win. So, for me, my job has been to live in harmony with my body while the drugs do the fighting. I don't try -- and have no interest in trying -- to delve into research or second guess my gyn/onc. He knows and supports my priorities, which means that he tells me the "textbook" answer to next steps, and then explains the next best options that fit my priorities of being able to work full time, not feel sick, and not lose my hair again. I have the luxury of trusting him because he is brilliant and compassionate, and he practices at a major cancer center and is on top of all the latest research. I know not everyone has that experience; some of the things others have posted about their cancer care are horrifying. It sounds like you are lucky, too, to have a gyn/onc you like and trust.
Because MD Anderson is ranked again this year as the best cancer hospital in the country, if I lived close I would want a second opinion on the treatment plan, just for the hell of it. : ) I have a family friend who is the medical director at one of the tumor testing companies, so I had my cancer retested by that company (my last one was 2 years ago, and cancer mutates), and my gyn/oncologist is eager to see the new results and any insights my friend has. I think most oncologists -- even the top ones -- are very willing to consult with others.(Medicare paid for the re-test because so much of cancer treatment now depends on the molecular profile.) A reason to be hopeful is that rather than just looking at endometrial/ovarian cancer drugs for UPSC, oncologists are now looking at drugs developed/used for all kinds of cancer tailored to the specific indivdual cancer profile. I'm not explaining that very well, but it means that there may be many more options for your treatment. (You may already know that, but I just learned it recently.)
Fingers crossed that you get good news from your PET scan.
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Thank you! Thank you! You don't know how happy I am to find someone with the same cancer. You sound like such a positive and awesome person. I asked my oncologist at my last visit if there was a support group for this particular subset of uterine cancer and she said no so I am so happy to find you. I would love to stay in touch as you continue your journey. I hope and pray we both can beat the odds!
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I believe that there are a number of people on the board who have UPSC, but it looks like most of them are 5 years or more out of their initial treatment, and that is, I think, considered cured.
I like to know my options, so even though I was stage 1 and not expected to recur after chemo and radiation, I talked at length with my wonderful gyn/onc, and he was excited at the time -- in general, not specific to me -- about PARP inhibitors, which were getting great clinical trial results in ovarian cancer. By the time I recurred for the second time last year, we knew that I wasn't a good candidate for any of the PARP inhibitors after all. That is the good thing about this moment -- there is so much research and trial and error going on with the new classes of drugs, that possibilites almost abound. Not too long ago, there were significantly fewer choices.
Hang in there, and you will have even more choices. : )
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Oh, you are an angel. This is the very first time I've heard of anyone 5 years out. This is exactly what I was in search of...hope! I, too, was diagnosed stage 1 after the hysterectomy and I was also told they thought they had got it all and chemo was basically just out of precaution in case any cells could have escaped and the brachytherapy was also out of precaution also so I was shocked when it recurred a year later. Thanks again for all your helpful insight and also again, I would love to follow your story and hope you will share with me your future results, good or bad and I would like to do the same with you. ♥️🙏🤞
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Yes, of course. I'd be happy to. The people I mentioned who are 5 years out are people who have never recurred and are, I believe, considered cured after 5 years. My understanding is that once it recurs, it is no longer curable. At the rate at which treatment is evolving, there may relatively soon be a day when UPSC is still curable after a recurrence for people who were stage 1. You are three years behind me in when you recurred, so the odds are better for you that new treatments will be there in time. I don't expect that for me, and I've had two years to accept that and am not frightened in the way I was when I first recurred. I have an excellent care team and have been blessed, so far, by being able to tolerate chemo and the monoclonal antibodies I've taken well enough that I haven't had to miss any work. I've also been fortunate in finding a great therapist to teach me how to use meditation to ease the stress of waiting for CA 125 counts and scan results.
I wish I'd looked into that much sooner. : )
Take care.
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Again, all great advice. I'm writing down to ask my oncologist next visit if once it recurs, if its no longer curable. You have a great attitude, another thing I can learn from you. My anxiety has been all over the place. I hope to one day be in a place where I can be of encouragement to someone else like you are. I'll leave you alone for now. Lol
God bless you
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I am about to go on your journey as well, same cancer, same place it spread to. Good luck to you!!
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Hey, my next steps are chemo and radiation, again. I know how scary it all is and hate to see someone else dealing with the exact same thing. I feel optimistic about it all but that’s just my nature. Please do stay in touch!!
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I'm so sorry for your diagnosis but I'm so glad you joined our conversation. Please feel free to let us know how you're doing physically or emotionally. I wish you all the best also and I'm glad to find others that can relate to my particular cancer finally after being diagnosed 2 years ago. Please reach out if you have any questions or just need to talk to someone who's going on the same journey.
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I'm so sorry for your diagnosis but glad you have joined our conversation. I was diagnosed 2 years ago and this is the first time I've found others with the same diagnosis. Please feel free to reach out if you have any questions or just need to talk to someone going through the same thing. Hugs
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