From Stage 1A Grade 1 Endometrial Adenocarcinoma to 6 yrs NED to Metastatic Stage4B

wcrowell29

Greetings everyone! Along with sharing my journey here and checking in to support others in theirs, I am wondering if anyone has had experience with Stage 1A Grade 1 Endometrial Adenocarcinoma recurring after 6+ years being NED at each 3 month, six month, exam. The first time I was diagnosed (at 58) it was removed (via a Davinci robot assisted complete hysterectomy without complications. I was flying to a conference in Austin, Tx only 6 weeks later. I barely gave cancer another thought.

After 5 years of consistent checks, my oncology care team convinced me to go a year w/o coming in and BAM! It came back. Last July a CT Scan showed a small growth on my vaginal cuff, they call it. 5 weeks of external radiation and 3 brachytherapy internals later it was declared zapped away. “What a relief that it’s gone again,” I said. “My knife must’ve missed a cell!” exclaimed my onc. Never did it occur to me that it could/would recurr yet again, and soon.

Fast forward to follow up CT and MRI Scans in November, followed by a PET Scan Dec 17th, that confirmed it was indeed back a third time having metastasized from the lining of my uterus to my liver. Five lesions on the left hepatic lobe and one on the right- peripherally enhancing, whatever that means.

All of a sudden, the very fact that this typically very slow growing uterine cancer had traveled that far in less than two years was sobering and concerning. Comparing scans from 2019 and then 2021 to scan results from Fall of 2023 showed nothing in 2019 but did show one possible lesion at the 4 yrs post 2017 hysterectomy mark. It was determined at the time not to be suspicious for metastatic disease. I did not know how to advocate for myself as well as I do now. I can’t stress enough how important it is to be well informed and to ask questions.

Who knows… but when I compared the two reports to the most recent CT & MRI scan reports this past Nov/Dec, I was left wondering “What if I’d known to be more proactive with my understanding of my own health and requested they biopsy that unidentified mass in 2021?” Anyways… they found it and I am grateful because that means being able to treat it, right? I am trusting that this is the best course of action. I’ll be getting a PET Scan again in April to determine if these hormone blockers have been effective. Fingers crossed!

Curiously, my onc care team is still insisting on calling my metastatic recurrence Stage 1A Gr1 even though the staging I have found on cancer.org and other sites state clearly that if Endometrial Adenocarcinoma travels to a distant organ (my liver) then it becomes Stage4B. Why do they insist on telling me I am not Stage 4? Is it purely semantics?

When I was diagnosed again most recently, through the scanned images “concerning for metastatic disease,” then confirmed when the Pet Scan illuminated only the 6 suspect lesions on my liver, I asked if I would be starting chemotherapy to GET. IT. GONE. asap!! “Too aggressive of a treatment to begin with,” they said. So I began this initial treatment through pill form to stunt the lesions on my liver and keep them from traveling beyond to other organs.

So far my Endometrial Adenocarcinoma, caught in it’s infancy in 2017 and removed, as I mentioned above) that has metastasized, finding a new home far far away from where my uterus used to be, is being treated with Megestol, in pill form 40mg 2 tabs 2x daily and the evening tiny tab of Exemestane 25mg that I take with my nightly Xarelto because, my first ever experience of radiation, so following the 5 weeks of M-F radiation, I rang the bell and then was sent for an ultrasound. Et voilà! My first ever blood clot was fortunately discovered in my left leg that was quite swollen including my foot and ankle.

I have, for the most part, maintained a steady, uplifting, forward thinking attitude throughout these new developments that popped up last July, through all the scans, labs, and downright yucky tasting “Mocha” Barium. I’ve always felt I would live a long life. I still feel that way, but with a looming feeling, not knowing if I can make big plans now. I need to ask my onc to be more forthcoming with me about my prognosis because I never received one!

I have been looking forward to a clear ultrasound next month and finally being off the blood thinner but nooooooo… sigh… because one of the biggest side effects of one of these hormone blockers, I was told by my onc’s PA, is the possibility of blood clots forming. Oh joy…

If you are still with me here…I sincerely thank you. 🙏🏼 ♥️👱🏼‍♀️💯 I am in no physical pain from my two recent cancer recurrences. My leg hasn’t swelled up for months now. I mostly feel low energy off and on, crashing if I try to do too much at once w/o resting. It’s weird. I’ve felt so healthy and high energy my whole life then following the radiation therapy… BOOM! 💥 I can crash and recover quite quickly at least 20 x a day or more. I’m told it must be fatigue side effects from the build up in my body from the Oct-Nov ‘23 radiation therapy. It can last up to 6 months post radiation, I am told. I look forward to it getting gone and being blissfully NED once again. Not sure if that will happen from the little I do know but I’ve always been a cup half full girl so why stop now, right?

So mostly I am getting through this new metastatic cancer experience, from uterus lining to masses on my liver in the span of 6 yrs, as I have always known myself to be. I HAVE cancer, but I am not defined by my cancer. I am determined to not let scary thoughts or fear of the unknown creep in and rob me of my days and nights, with thoughts such as, “Does this having metastasized to my liver mean that I have 5 years left to enjoy due to the metastatic stage 4 survival rate I keep hearing about?”

I’ve always declared that “every day that I wake up is a great day!” I certainly do intend to continue to live my life as fully as possible and to inquire about all the treatment options available to me as well as clinical trials, etc. I admit I barely know where to begin and am humbled by this recurrence. I certainly welcome your words of wisdom and sage advice.

Thank you, Fierce Peach Warriors, for being here for each other, and for me, and thank you for when you let me be there for you. There is no way to measure the priceless comfort that comes from the unconditional kindness and camaraderie evidenced here, from understanding and listening to each other’s challenges, struggles, etc, to feeling equally understood and well supported. I am super glad that I stumbled upon and joined this group. It brings me such a feeling of peace. You/We all ROCK! I hope your week goes well. 🧡💪🏼💯

Wendy 👸🏼🍑✨

Forherself

So sorry to read about your recurrence. I have read it can happen rarely and I think there is another woman who experienced this. As far as your stage, it remains the same as your diagnosis. If you recur, you are stage 1A with metastases. Did they do genetic testing on your newest biopsy? Did they biopsy the lesions on your liver?Sometimes it is a new cancer which makes a difference.

wcrowell29

https://csn.cancer.org/discussion/comment/1713868#Comment_1713868

Thank you. 💜

You bring up a very good point. How do they know for sure, w/o the biopsied tissue as proof, that this is metastases and not a new cancer. Hmmmm… I will be asking this question during my next exam coming up shortly. How could they know for certain? And exactly how does it make a difference? I have only learned so far, through research, that having 1.6 cm metastatic cancerous lesions/masses is certainly preferable to have the cancer originate from the liver, being liver cancer, which is far less survivable, if I recall correctly. It would seem that they cannot remove the lesions/masses, only hope to reduce them in size and keep them from metastasizing to other parts of my body so far. Livers regenerate though, so maybe it’ll be a future possibility cutting them out. Do you know of treatments besides chemo and other than the hormone blockers I currently take, that I might suggest to Dr S that we could try? Is Keytruda an option or only in addition to Chemotherapy?

It honestly never occurred to me that I might face something worse than the teeny tiny cancer that they kept calling, “Nothing to worry about…

Caught in its infancy! You could not be more fortunate!” that was the original cancer found and removed. When the 6 lesions/masses showed up on the different scans looking consistent with metastatic disease, done mid December, a needle biopsy was ordered. Insurance approved it. Then the biopsy Doc conferred with my rock star oncology surgeon, informing Dr. S that the lesion he wanted tested was not accessible, that to attempt the biopsy would place my life in great peril. Thus, the Pet San order was placed. We waited for insurance again. Secured an appt and exactly one month later, on Jan 17th, the Pet confirmed the recurrence. It was the best and only option with the biopsy off the table.

And thank you for clearing up my issue with the staging. It actually makes sense that it remains the original Stage 1A Grade 1 Metastases. But then why did it say that when a cancer travels from place of origin to a distant organ, that it becomes Stage 4 at that point? I certainly won’t argue the point. Stage 1A feels less threatening mentally than Stage 4B.

So I am remaining optimistic yet vigilant, doing my best to eat clean, not processed, to exercise and move my body as often as I can, and to avoid/eliminate all refined sugar from my diet because I heard that cancer feeds on sugar. Starve the cancer by not feeding it sugar. A roaming pharmacist shared that with me recently at the drive up window. With no one in the lane behind me, Ms. Smith spoke uninterrupted for at least 20 minutes and I listened.

Anyways.. I really do appreciate you reaching out today. I will make a more concerted effort to show up and engage in discussion on this forum. It has already proven to be beneficial for gathering info, is full of really good vibes and brought me a measure of peace I didn’t realize I was missing. Enjoy your week!

Wendy 👱🏼‍♀️💖🧡✨🍑

Forherself

I'm sorry I am not up on the drug treatments. But treatments have improved in the last few years. It helps to know what mutations your cells have so genetic testing is helpful. I guess you did not have a liver biopsy because it was not feasible. You are not the only one here who has not had liver lesions biopsied. But that is the only way they can be sure that it is metastatic disease. Immunotherapy is not chemo. And that is another arm of treatment. If you are not confident in your cancer team you can request a second opinion. They don't mind. And ask if they have a tumor board. Your case can be presented to more doctors and their opinions sought. We are here for you. 🙂

Sue

Mercorby

Ugh! I am so sorry to hear this! I guess you are er+ her2-, or they wouldn't have put you on the regimen you are on. Definitely, you need to get ngs (next generation testing) on your tumor and a pan-cancer panel. It should give you and your doctors more information about your cancer. I am guessing that you have a pik3ca mutation because those break thru anything that blocks estrogen. You might ask about cdk 4/6 inhibitors, but I don't know if it would work on tumors in the liver. Highly recommend getting second and even third opinions. If you have a hormone receptor positive cancer, you can look at what they are doing in metastatic breast cancer. That is where the research is for this type of cancer.

I do understand a bit of what you are going thru, I am on my 4th recurrence for hormone receptor positive endometrial adenocarcinoma. It is hard to wrap your head around having metastatic endometrial cancer after being NED for so long. My doctor did tell me, after my 2nd recurrence, that I had a very aggressive cancer. It would keep popping up and they would get rid of it, but that will be cycle until they can't treat it anymore. It's a well-managed chronic disease. So far, that is what is happening. They play whack a mole with the recurrences. I've been getting PET/CT scans every six months. That is the only way they found all of my recurrences. BTW, I started this journey in 2015. I also had 6 years of NED.

If your tumor results show dmmr or msi instable, then you could be a candidate for immunotherapy.

Sounds like you have a good attitude and the exercise and nutrition will help to some degree. I am seeing an oncology nutrition doctor. I must say I learned quite a bit.

Best wishes to you.

Fridays Child

Hi, Wendy. What an experience you are going through. My story is similar, in that I was also Stage 1, grade 1, endometrial adenocarcinoma. Had robotic surgery and brachytherapy and was declared cancer free.

Six years later we found a pelvic mass which invaded my hip and metastasized to my lungs. Interventional radiology did a needle biopsy of my pelvic mass which confirmed the metastasis. Had chemo and radiation. At last CT scan my lungs are no longer a concern. The pelvic mass remains stable so far - might be scar tissue but they won't say NED. In my case, the medical oncologist refers to Stage 4, but I've seen the same thing you encountered - that some call it the original stage and add "with recurrence" or "with metastasis."

Because I'm microsatellite stable, if I were to use Keytruda I'd have to take Lenvima with it.

My original diagnosis was in 2012, so I'm now six years out from the recurrence. I'm taking Megestrol, 40 mg twice a day. I have a doctor's appointment coming up so the nerves are setting in.

Good luck to you!

jan9wils

Hi Wendy,

I'm very sorry about your recurrence but glad it is being treated with hormone blockers, hopefully avoiding chemotherapy. I was diagnosed 1Bgrade2 in 2014 and recurred in 2016 and its been" whack-a-mole" (what an apt description) pretty much ever since. I did have genetic testing done on my tumor (recommended by someone here) which does help with treatment options. I'm currently not taking any form of treatment but do avoid sugar and take a host of supplements. When I recurred I was told my original stage and grade remain with the added notation of metastatic disease.

Jan