Serous Endometrial Carcinoma ("high-grade"), now metastasized to lungs

MDaleMaryland

Hello - Introducing myself here. The topic title summarizes it. I was diagnosed in December 2022 and January 2023, had to wait 6 weeks for a 'radical' hysterectomy while in pain and bleeding profusely (because of health insurance!), then spent 2023 in chemotherapy and radiation, and recovering from their side effects.

Last year was pretty good! Not perfect, but the four sisters arranged a reunion, a miraculous baby granddaughter was born, I was able to work a little bit, and my hair grew back into a sort of Ava Gardner-ish thing. (I've had Herceptin infusions every 3 weeks, and CT scans every 3 months.)

The CT-Scans started to show growing lung "nodules" that were so small, they were considered nothing; then something to watch; now full-fledged metastasis. The oncologist will NOT give me a time frame (frustrating), but from research I think this gives me a short life span — possible 8 - 12 months.

The recommendation is another 6 rounds of chemo — losing my hair and eyelashes all over again — but evidently there is no surgery or radiation to help me now. I've requested a 2nd opinion for this week, partly to ask whether more chemo is worth the time it will provide me vs. the condition I'll be in with vs. without it.

Meanwhile, I know life itself is "terminal," but I am struggling with the fact that this is most likely terminal within a year or so. I would like to connect with people, and/or a therapist, who understands the thoughts and feelings around this.

Thank you for letting me share this! 😊

NoTimeForCancer

hello MDaleMaryland. I am sorry to hear what you have had going on. I think you already know, it stinks. I have a question and a few thoughts, so bear with me.

First, did they do a genetic assay of your cancer? If it has markers like dMMR, POLE, P53, etc (and the gyn onc should know what these are) some of these respond to immunotherapy so please ask about that. I am glad to hear you asked for a second opinion. It is your life and you have every right to get answers and find if there are other options.

Next, I don't think anyone really 'knows' how much time we have after a diagnosis, and we have women on here who have had recurrences, some more than one, and still with us.

I like to hear you are looking to find someone to talk to. It is all very overwhelming and ultimately your choice. If you are willing, please feel free to come back and share what you decided and if you found anyone to talk to. You can help all of us, and I think you in advance for that gift.

MDaleMaryland

https://csn.cancer.org/discussion/comment/1720584#Comment_1720584

Hi NoTimeForCancer! Thanks for replying. Good question about the genetic testing. The tumors in my lungs were small a few weeks ago and they weren't sure they could get enough tissue from a biopsy to test. That's one reason I am in a 6-week holding pattern right now. (Three weeks left.) I thought I saw P53 in the initial analysis of the endometrial cancer but evidently they need to look at what's in my lungs now. Tomorrow is my second opinion appointment. Thanks again for writing. 😊

Mercorby

Sorry to hear about your recurrence. I know what that is like.

A second opinion is a good idea. Getting NGS (next generation sequencing) after each recurrence is a good idea. There are many new treatments. Lots of ADCs (antibody drug conjugates) in clinical trials. Please don't give up hope. It would be helpful to know if you are HER2 positive or negative.

https://www.sharecancersupport.org/video-library/the-latest-treatments-for-uterine-cancer-and-whats-in-the-pipeline/

Best wishes to you.

MDaleMaryland

Hi, Mercorby - Thanks for your message. I'll read the info at the link, but there's apparently a lot I don't know! (NGS and ADS to start with!) I do know my cancer is HER2 positive, so I've been getting Herceptin infusions every three weeks.

First six rounds of chemo ended July, 2023; then 25 rounds of radiation (5 days per week) ended in early October of 2023.

MDaleMaryland

I got the second opinion, which was about the same as the first although the discussion was more thorough. Six weeks later, I've had another CT-Scan, and it seems the lung tumors have grown but not very much. I'm not sure if it's enough to make a difference in whether or not they can do a lung biopsy. It could be that I can wait it out a while longer before starting that and more chemo! So maybe Herceptin is still working, after all.

The tumors also show increasing cavitation, but I'm not sure of the significance of that, if any.

The last piece is that I had another CA-125 blood test and once again, it's at a normal level. It always has been, so I don't quite understand this. I'm hoping to get more information, but it's hard to get something between non-answers and medical-degree answers! Anyone else here have experience with any of these factors?

MDaleMaryland

New question about metastasis: I've been reviewing my CT-Scans since my initial symptoms and diagnosis in January, 2023. It seems I had small lung nodules from the start, possibly in the same places they're describing now (no pictures!). When I went through chemo, the nodules were no longer seen. After chemo, they gradually came back, and grew in size and number.

Weird. If there was cancer in my lungs even before I was diagnosed with endometrial cancer, was I at Stage IV from the start? Or, is this a separate lung cancer that responded to the same carbo/taxol chemo I had for my endometrial cancer?

The medical protocol seems to be for me to have them biopsied, but also to go right back into chemo… I'm hesitant.

Forherself

https://csn.cancer.org/discussion/comment/1721720#Comment_1721720

There are so many questions with this disease. Many women here have had lung nodules but don't seem to be cancer. Other women have had metastases in their lungs. I think initially the nodules are too small to biopsy. It is possible that the nodules are a different kind of cancer, but less likely to be. I think they only diagnose metastases in lung after a biopsy, so they might have left them off your initial staging. All of the next steps will depend on their ability to biopsy the lung nodules. Maybe they will just assume they are metastases since they are growing. I guess questions you need to clarify with your doctor. So sorry you are having to deal with this.

Mercorby

Hi there,

When I started this journey in 2015, I had a lung nodule. It didn't light up, so everyone said not to worry about it. Had three recurrences: brachytherapy, ebrt, chemo, brachytherapy to the stomach muscle, aromatase inhibitor and ibrance, interstitial brachytherapy to the vaginal cuff (where they didn't reach before). Meanwhile, that lung nodule started doubling in size around 2019 thru 2023 when it finally lit up a little. At that time, biopsy came back negative. Then, three months later, it lit up a lot and came back positive, so I had sbrt and now it's gone. I had too many breaks from Ibrance, so the cancer had a chance to grow. My dr thinks it may have been there all of the time, but was just too microscopic to detect. It showed a few more mutations than the one in 2017, but no actionable targets. I wonder if ctDNA tests might have shown that the cancer was in my system. I was receiving systemic therapy, so it should have been 0, but who knows.

Anyway, I wondered the same thing as you, if it had always been then, would I have been labeled metastatic at the get go? Dunno, don't care. I feel fine now, no matter what the labels are. In remission again, hope to stay there for a long time.

sshhaarrii

I had UPSC back in 2016, surgery, chemo, radiation. Genetic testing showed an ATM gene mutation. Follow up scans revealed nodules in my lungs and my pancreas. By 2019 one of the nodules in my lungs grew and was biopsied. Turned out to be a new primary cancer, non small cell, surgery only. Now one of the nodules in my pancreas, stable for the last 7\8 years has grown to be a suspect high risk IPNM. Urgent MRI in the works. What I'm trying to say is, I have had 2 different types of primary cancers and #3 is still to be determined. The ATM Gene mutation is most likely the culprit. The follow up\routine scans and genetic testing have given me a fighting chance.

NoTimeForCancer

https://csn.cancer.org/discussion/comment/1721927#Comment_1721927

sshhaarrii, thank you for sharing that important information regarding a new primary vs a recurrence of UPSC. I'm sorry to hear all you have and are going through, and hope the newer drugs continue to provide you more time. Hugs dear one