Metastasized endometrial cancer in the soft tissue

Posted by jjevitts @jjevitts, Oct 19, 2023

Good morning,
I’m wondering if anyone has any knowledge or experience with metastasized endometrial cancer in the soft tissue. I know it is very rare, which isn’t good, but I’m really trying to stay off google because it’s all so hopeless and is adding to my anxiety greatly.
Thanks so much

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@paula21

@jjevitts, I have metastasized endometrial cancer. too. Mine is Clear Cell adenocarcinoma. I had a radical hysterectomy in March 2022. My cancer spread to the upper lung and right upper sacrum.
I'm back on Keytruda and 10 mg Lenvima and it's going well, other than knee joint pain which has developed.

What area did they do the biopsy on and are you on any treatment right now?

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Paula21, I have a few questions if you don't mind, how did they find out that your is now on the upper lung and the right upper sacrum? Did you had any symptoms that prompted them to do more extensive testing?
At What STAGE was your endometrial cancer on 3/2022 and what type of surgery did you had? Was it robotic or abdominal? Were any nodules positive during staging? Did they give you any chemo/radiation after surgery?
Thanks in advance, all of this is so exhausting for all of us currently in remission, Lord bless us all....

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@gynosaur42

Oh, I am so very sorry to hear that anyone is, has, or may be experiencing recurrence or metastasis. And, at the same time, I am beyond grateful for each of you sharing with us where you are, how you are and what treatments you are being offered. This is truly a gift for me. I am not in that situation at this point, but lost my mother and a sister to gyn cancers that recurred and metastasized, so I know that this possibility lurks for me, as well. My heart aches for your fear and pain, and goes out to each of you, @jjevitts, @paula21 and @naturegirl5, with hope and care.

I also want to echo @paula21’s thoughts and suggestions for you, @jjevitts. Each time there has been even a slight miscommunication (whether due to me communicating poorly, being misunderstood or even due to me hearing a response with ears that filter for hope and maybe miss a qualifying word (such as, “not” or “in the case of…”) with someone on my team, my sense of safety takes a significant hit.

I love it that you, @paula21, kept seeking and tried another oncologist until you found someone who can understand your questions and give you responses that leave you clear on what’s so. I SO hope that the benefits of the Keytruda and Lenvima keep building for you!!!

My hope for you, @jjevitts, is that you can get that kind of safety soon, too.

@jjevitts, do you have a schedule for your biopsy yet?

I am in Minnesota for one more day (airlines come to MSP from my home each way only on Thursdays and Mondays), so I’ve been visiting long-lost family members in Iowa and MSP. When I can, I am checking with all of you. It helps tremendously and I’m glad to think that staying in contact supports anyone else. My jitters didn’t get to me until the morning before my follow-up appointment. I was not expecting bad news at that appointment, but I guess the fear was lurking under the surface. Of course, I was very relieved to hear that no recurrence has been detected.

I am hoping that your time near your pond has been helpful to you, @jjevitts. As we drive between MSP and Rochester, there is so much open, rolling farmland. This makes a good receptacle for holding what I breathe out.

Again, I am so very grateful for each of you. Thank you!!!

Gynosaur

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Good morning Gynosaur! I’m so happy to hear your appt went well in addition to being able to see extended family! That sounds like a great trip! My daughter lived in Minnesota for a few years and loved it. I had never been until my grandson was born and thought it was beautiful!
My biopsy is scheduled for this Thursday which I’m relieved, but very anxious. Sadly, I have often taken the approach out of sight out of mind. Seriously, throughout all of this I have once again been reminded communication is key and you must advocate for yourself. I usually am so afraid of being a bug, not anymore! At 68 I’m no longer going to sit back. Well at least work on it. Haha
Hope you have a safe trip back and continue to have great checkups!
Thank you so much for checking in!
Julie

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@jjevitts

Good morning Gynosaur! I’m so happy to hear your appt went well in addition to being able to see extended family! That sounds like a great trip! My daughter lived in Minnesota for a few years and loved it. I had never been until my grandson was born and thought it was beautiful!
My biopsy is scheduled for this Thursday which I’m relieved, but very anxious. Sadly, I have often taken the approach out of sight out of mind. Seriously, throughout all of this I have once again been reminded communication is key and you must advocate for yourself. I usually am so afraid of being a bug, not anymore! At 68 I’m no longer going to sit back. Well at least work on it. Haha
Hope you have a safe trip back and continue to have great checkups!
Thank you so much for checking in!
Julie

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@jjevitts Your biopsy is scheduled for this Thursday. I imagine that you are both frightened and relieved. You wrote earlier that the property across from you is “swampland”. Can you imagine the birds and other critters who make their home in that environment? I lived in a similar environment many years ago and there were birds everywhere that I didn’t see in other places. Can you tell I love birds? Would it help for you to imagine your view from the safe place in your home when you are at the clinic waiting for your procedure? Can you bring to mind the sounds and the smells?

We’re both in Michigan and so in the same time zone (last I checked!). What time is your biopsy scheduled for so I can keep you my thoughts during the procedure?

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@naturegirl5

@jjevitts Your biopsy is scheduled for this Thursday. I imagine that you are both frightened and relieved. You wrote earlier that the property across from you is “swampland”. Can you imagine the birds and other critters who make their home in that environment? I lived in a similar environment many years ago and there were birds everywhere that I didn’t see in other places. Can you tell I love birds? Would it help for you to imagine your view from the safe place in your home when you are at the clinic waiting for your procedure? Can you bring to mind the sounds and the smells?

We’re both in Michigan and so in the same time zone (last I checked!). What time is your biopsy scheduled for so I can keep you my thoughts during the procedure?

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@naturegirl5 I truly can’t put into words how much connecting with you and a few others on here means to me. What a blessing! 💜
I can’t remember if I told you, but after my Dad died several years back, husband and I moved back to my childhood home. It is full of treasured memories including many hours spent ice skating and having great adventures across the road, so your suggestion is perfect!!
My biopsy is scheduled for 10 and knowing you are thinking about me, well, I have no words, except thank you!!

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@jjevitts,

Please know that I will add my thoughts, care and hopes to those of @naturegirl5 and all who care about you at 9AM (my time, 10AM yours) this Thursday. You've used your voice to advocate and this next step is in process. Nice work! I wonder if there are any other bits of information that you might need from your healthcare provider team or would want them to know beforehand. Do you know what to expect during this biopsy process? Do they know what your needs (or at least requests) might be? Just throwing that out there given your experience so far.

I returned home to find a note that I had thought I'd posted for you, @jjevitts, before we left. I'm sure those ideas will again be relevant at some later date, so will hold on to them for you.

And, yes, Minnesota was stunning and the trip went as well as I could have hoped. My nurse practitioner gave no indication that our time was limited, allowed me to ask all of my questions (I had lost what I'd put together before the trip...thanks, jitters...and had re-written it on the one piece of paper the hotel puts in the room in the frantic hours before the appointment) and answered each one. I feel nervous hearing that surveillance every 6 months must end after three years, but was told that I could call and make a mid-phases appointment if any symptoms arise and am turning that over in my mind. In the face of that tiny piece of uncertainty my own sense of vulnerability floods me, given that my mother's and sister's recurrences happened outside that statistically-calculated window. What I am telling myself is that there are things that I do have control over (nutrition, time in nature, quality sleep, moving my body, emotional/spiritual self-care and connection with each and all of you to name a few).

I smile when I think that each of us has access to water, nature and birds! I hope that you calling on those images, sounds, memories and your felt-sense of being there and even gliding over the ice will serve you well as Thursday approaches, you get through the procedure and then wait for information afterward. There is a pond (with cattail rushes at one end) near my home that has a large rock that I can sit on in order to take it all in. It's now colder than recently, but the view and the sounds are worth the bundling. I think I will go there this Thursday morning to add "my" pond to yours and Helen's. I will breathe in what's tense, bitter and hard here, and breathe it out to that combined space.

With an extra hand squeeze,

Gynosaur

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@ihndz

Paula21, I have a few questions if you don't mind, how did they find out that your is now on the upper lung and the right upper sacrum? Did you had any symptoms that prompted them to do more extensive testing?
At What STAGE was your endometrial cancer on 3/2022 and what type of surgery did you had? Was it robotic or abdominal? Were any nodules positive during staging? Did they give you any chemo/radiation after surgery?
Thanks in advance, all of this is so exhausting for all of us currently in remission, Lord bless us all....

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Hi, the upper lung and right upper sacrum were diagnosed from a Pet Scan. The treatment routine is 3 months of Immunotherapy, then the Pet Scan. I hadn't had any symptoms when these were diagnosed, although I began having low pelvic pain about a month ago, which is now gone. After my surgery in 3/2022, my diagnosis was endometrial clear cell carcinoma, Figo Stage: IIIC1. The surgery was robotic assisted. 3 or 5 nodules were positive. I had chemo after surgery. Hoping you receive good news after your biopsy! Be well.

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@jjevitts, I am keeping you in my thoughts this morning as you prepare for your biopsy. I hope the procedure goes smoothly, that you have clear communication from your doctor, the wait for results is not too long and tortuous, and that they bring you relief, or at least hope. I am wishing I could gently squeeze your hand as you move through this morning and beyond. I'm so glad you have that right there in your family. I hope you will be home soon, and can look across to the pond and take in its beauty, even if it is raining.

Shared files

Photo pond (Photo-pond.pdf)

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@gynosaur42

@jjevitts, I am keeping you in my thoughts this morning as you prepare for your biopsy. I hope the procedure goes smoothly, that you have clear communication from your doctor, the wait for results is not too long and tortuous, and that they bring you relief, or at least hope. I am wishing I could gently squeeze your hand as you move through this morning and beyond. I'm so glad you have that right there in your family. I hope you will be home soon, and can look across to the pond and take in its beauty, even if it is raining.

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@jjevitts I join @gynosaur42 in wishing that the biopsy procedure goes smoothly for you. Her comment about gently squeezing your hand reminded me of my surgeon when I had my hysterectomy. I was lying on the table in the OR when my surgeon must have come in the door behind me. She gently squeezed my hand and told me that she was there. I was always remember her warm and compassionate hand that touched me in that moment. Remember, @jjevitts that everyone in the room is there doing their work for you.

I hope the doctor talks with you after the procedure, answers your questions, and that you get the results quickly.

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Good morning! I just wanted to thank everyone for their support and words of wisdom and encouragement, it means the world to me!
I told you I would keep you updated, the biopsy Thursday went smoothly, I’m not one who likes to be medicated so they gave me very little sedation, which was fine. A bit sore after, but nothing bad at all.
I got the results late yesterday afternoon, not what I was hoping for, but somewhat expected. The biopsy shows the EC has metastasized .. a word none of us wants to hear. I will not have a meeting with my oncologist until Thursday, which is hard..
I’m trying to remain hopeful in spite of what I’ve read. I do think there are promising new treatments which I hope for all of us!
Again, thanks so much to those who have reached out and kept me in your thoughts and prayers. You are on mine as well! 💜

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@jjevitts

Good morning! I just wanted to thank everyone for their support and words of wisdom and encouragement, it means the world to me!
I told you I would keep you updated, the biopsy Thursday went smoothly, I’m not one who likes to be medicated so they gave me very little sedation, which was fine. A bit sore after, but nothing bad at all.
I got the results late yesterday afternoon, not what I was hoping for, but somewhat expected. The biopsy shows the EC has metastasized .. a word none of us wants to hear. I will not have a meeting with my oncologist until Thursday, which is hard..
I’m trying to remain hopeful in spite of what I’ve read. I do think there are promising new treatments which I hope for all of us!
Again, thanks so much to those who have reached out and kept me in your thoughts and prayers. You are on mine as well! 💜

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@jjevitts Oh, no! Not at all the results you hoped for. You are so right. No one wants to hear the word “cancer” and least of all “metastasize”.

The word that kept coming up in my radiation therapy following a recurrence of endometrial cancer was “hope”. I will tell you it’s very difficult to have hope when getting the news that you just received. But I get it. I’m still here and so are you. So there is Hope. As you wrote there are new treatments available. There is a huge amount of research in cancer including endometrial cancer.

I’d like to say, @jjevitts, that thank goodness you listened to your body and you pushed and pushed for follow-up on the pain you experienced. You didn’t bury how you were feeling because the doctors kept telling you it wasn’t cancer.

I understand your comment that it will be hard to wait until next Thursday for the appointment with your oncologist. I’d like to share this. Once I got through the shock of learning my biopsy two years ago was a recurrence of endometrial cancer, I felt supported and listened to by my cancer team. There was something that was oddly soothing about the additional testing and meeting with other doctors as we/they figured out the treatment regimen. I had decisions to make given the recommendations that were made and I followed through with those recommendations. It disrupted my life and I tried to carry on with my usual routines as best I could. I look back at that time with gratitude as my only job was to focus on myself and my own health. This was the priority and I allowed myself to put others’ needs aside.

You are getting your care at an excellent academic medical center at the University of Michigan. If you decide that you want to get another opinion at Mayo Clinic, here is the link:

http://mayocl.in/1mtmR63

You can also ask your gynecologist to send a referral to Mayo Clinic. The referral information allows Mayo Clinic the medical information needed to move a request forward to the appropriate medical team.

I would like to encourage you with this. You have the skills to manage the feelings of anxiety. I have learned over the years that as much as I want anxiety to go away forever it does not. I’ve learned to accept that anxiety will be there and that I can look around in my tool box for what will help in the moment.

Is the weather pleasant enough today to go for a walk? Our Fall colors are quickly disappearing. Are your Fall colors still present?

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