New Diagnosis of Stage 4 Metastatic Uterine Cancer

Hi HeatherAmethyst - I am Stage 4 endometrial/uterine cancer also. I was diagnosed last June after a radical hysterectomy. It was a huge blow to me and my family. My type of cancer is serous, which I understand is difficult to treat. My cancer did not respond to 5 rounds of carboplatium/taxol chemotherapy, so I'm on Keytruda/Lenvima immunotherapy now. (I also do complementary supplements and herbals recommended by my herbalist in union with my oncologist) I have not had my first scan, yet, after starting this latest therapy. So I understand your roller coaster, and having a great doctor that you trust and a supporting family really helps.

And we are here for you too.

Hi, ladies. I am so sorry to hear of your diagnoses. It's so scary, especially at first.

In my case, I was diagnosed with a recurrence to my hip and my lungs. Stage IV. But that was 6 and a half years ago. I had chemo and radiation and am on Megace for maintenance. My now once-yearly CT scan is coming up so I'm anxious about that. My oncologists are pleased with how I'm doing. I'm currently considered "stable disease." At least until the scan.

Best of luck to all of you with your treatments!

Dear Carlie, I am so sorry to read what you are going through. Cleveland Clinic is excellent. My husband goes there for his diabetes and heart problems.

As far as losing your hair, have you heard of cold-capping? it saves about 70 percent of your hair! A friend of mine did that and she had great success with it WE ARE here for you! Karen

Ladies, I would just like to voice my support for enduring the emotional roller coaster that you ladies describe.

HeatherAmethyst and CarlieG, you don't state the type of UC/EC you were diagnosed with. Theresap60, you have serous, which other long-lived posters have survived.

Me, I have survived endometrioid-type UC since 2005. I have recurred several times (2 surgeries; 4 radiations; 1 chemo; 1 hormone-based therapy) and came through all treatments, maybe a little worse for wear (neuropathy) but still healthy and active at 70. I can tell you I went on for years forecasting my imminent death (those bi-annual CT scans are notorious "scanxiety" producers). Partly this was because I was not given encouraging prognoses after my first recurrence, partly it was due to my own emotional issues of long-standing. It is not a good way to live, and I would encourage you to explore and give yourself over to whatever "live for the day" methodology works best for you.

I was able to adopt that philosophy, finally, in 2020 when I had a cancerous one lung nodule removed and two others zapped with high beam radiation (stereotactic "knife"). It "cured" me of foreboding because the little suckers had taken two years to grow larger enough to do something about. That showed me my UC likely was somewhat indolent and could be considered stable disease.

Life was great, I stopped thinking about cancer, and then this year I was diagnosed completely out of the blue with colon cancer. I had the right side of my large intestine removed, including my appendix. They found appendix cancer there as well. I have no risk factors or genetics to explain these developments. But the cure for appendix cancer is to have the organ removed, and my surgeon encouraged me to consider myself cured of colon cancer (chemo not indicated for my stage of disease). Then, my darling spouse was diagnosed with a life-limiting disease which has yet to fully declare itself, which freaked me out and sent me to a few sessions of counseling.

All this to say, you can't know every single thing about how/why your body works. Apparently, there is something about my personal biome that can, under the right conditions, provide a hospitable place for cells to mutate and avoid detection by the other cells that are supposed to kill them. Oh well, so be it. Life goes on. There is nothing I can do but treat my body well—eat right, exercise, invest in friends and family, focus each day on things that bring me joy. Worrying about myself or my spouse is unproductive and depressing. So, I have finally decided that the advice to take each day as it comes is not simplistic "feel good" BS; it's actually a good recipe for when the going gets tough. When you think about it, there are myriad approaches/philosophies/religions that share the key advice to shift your focus from the future that you can't predict or control to the today that you can have at least some agency over. They are on to something. It can be a challenge to reorient yourself away from obsessing over the unknown future, but there are modalities that you can explore that may help you.

A few sessions with a good therapist allowed me to understand that my "need" to know all, see all and understand all was driven by anxiety, and now I am allowing my rational self to finally accept that even if I had all that info, what would I do with it? If you could see into the future, and it was a result you could be fine with, Hooray. But if it wasn't so great, what does that get you? Nothing but fear, depression and resignation, I think. I'll take live for today and worry about tomorrow tomorrow. My spouse and I had a counselor twelve years ago, after my first recurrence when I was give about 18 months, who urged us to adopt the live for today viewpoint. He counseled that IF we had to face a crisis someday, we would be able to meet it and deal with it at that time, and that we would rise to the occasion (think about it, what else would you do?). In the meantime, it is merely a prospect that you can't know or control so why give it space in your brain? There are better things to do with your time…like living! It was good advice that I didn't listen to at the time. I spent the next 10 years expecting to die sooner rather than later (I might need a few things but would buy clothes only at the end of a season on "clearance" because I might be dead next year and not need them. How depressing is that?). But I faced and survived challenges since then, and have finally come around to seeing the wisdom in this life strategy. But just because it makes a lot of sense doesn't mean it's easy to get there.

Please feel free to post here about your disease and treatment, and ask questions because there are some really knowledgeable ladies here, and, certainly, understand your disease to the extent you get what your doctors are telling you, and enough to ask good questions and advocate for yourself. Second opinions are good. And, if at all possible, invest in your health by changing diet and exercise habits that may not be in your best interests now. Avoid fixating on a "parade of horribles."

I hope you find some emotional equilibrium in due course, and that your treatment experience is doable for you. I am sorry you needed to find this board but you are safe here, and there is much useful, actionable info here. Best wishes to you all, Oldbeauty