Metastasized endometrial cancer in the soft tissue

Good morning, @jjevitts

I'm sorry I missed checking in the past day or so while traveling for my follow-up appointment, which is later today. I WISH I could sit next to you or walk (pace?) by your side as you wait for your biopsy and hear what's so, and what options may exist for your particular situation. I have looked back through your earlier posts and am not sure what your original endometrial cancer diagnosis was...was it adenocarcinoma, or something else? I think I remember it was stage Ib then. If I have been understanding so far, you won't know what the mass is (whether it is a metastasis of the original cancer or a new cancer) until the biopsy results are available.

I have so little to offer other than caring, wishing you relief from the fear and pain, and hoping with you that there are options you can explore once the next piece of information comes through. There may be in-person support groups at U of Michigan, or there is the one through Mayo Connect (TEAL St. Augustine) that meets monthly, I believe. Seeing others' faces might help. I attended once and found it helpful, but haven't yet had a chance to attend again because of timing.

It just keeps occurring to me that you can't even search Google right now, in any useful way anyway, as you don't yet have biopsy results. When that is me, I am stuck in limbo, I just need someone to hold my hand (not trying to "cheer me up," and sometimes, yes, trying and making me laugh a little) to move and to breath. If I can walk somewhere beautiful, somewhere much bigger than me and my frightening and painful situation, it seems to help, as well. Prayer or meditation (there is a specific one that I learned many years ago that helped...called, "Tonglen" meditation, which I read about in a book by Pema Chodron. It was something about breathing in the "awfulness" of my current situation, then breathing it out into to something big enough to hold it...like a lake or a huge valley, or the ocean, or the universe. I did this while in the depths of grief earlier in my life and found it comforting.

Oh...just sending my care and hope to you, @jjevitts

Gynosaur

@jjevitts Waiting for biopsy results is so, so hard. What I need and perhaps you are the same in this situation is for an empathic person to sit with you and not talk or try to “fix” how I feel. This is what @gynosaur42 expressed so eloquently. When I have developed pain, a blip on the skin, or whatever is new my mind goes to cancer. My partner has learned to listen to my worries but it has taken some lessons from me and others as he’s a fix-it-kind-of-guy.

I live in the Upper Peninsula of Michigan and our autumn colors are just past peak. This time of year I drive into town on a longer route so I can savor the colors as they change. Oh, the colors are magnificent this year. How are the colors where you are in Michigan? Can you take a walk or a drive today to bring those colors and smells to you in our beautiful state? It won’t erase your worries but perhaps the creation of nature will be calming for you.

Good evening naturegirl15,
My husband and I love the UP. In fact, he was up there a few weeks ago at the peak of the season. We live in the middle of the mitten.. for the most part flat farmland, but some very beautiful ponds and color. We have property across from our house that is basically swampland, but today I’m going to pretend it’s a prestine pond and enjoy the days beauty, thanks to you and gunosaur42!
My Dad was and my husband is also a fixer like your partner. We are both working on the communication thing, boy this whole new ride is a learning experience, thank you for being there with me! 💜

Hello Gynosaur!! I’m not going to lie, I was so happy to see your response today, I’d been anxiously waiting! I’m not sure what your chosen career is or was, but you have beautiful way words and thoughts. You, they are just so calming.
I want to say I so hope and pray your appointment went well. Please keep me updated, if you want.
I must disagree with you not doing anything. You are so caring and understand where my head is at, which sometimes I don’t even know 😂
As I told nature girl, we have an at times scum covered pond across the road. Bad for swimming but the wildlife love it. I plan to go over and breath in the awfulness and fear and then breath it out as you suggested, which I love!
I’m sure you are exhausted tonight after your day, but I really just wanted to thank you. I hope you rest well tonight! 💜

Good morning Gynosaur, I need to apologize for that terribly written message. I haven’t been sleeping so well but wanted to send a message. As I always told my students, proofread! I should practice what I preach!
Again sending positive thoughts concerning your appointment! Have a great Saturday!

@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?

Good morning Paula21, thank you so much for checking in. I so hope you have great results!
Well, my communication with my Dr. has been somewhat lax in my opinion, but it is my understanding they will be doing the biopsy of the mass in my lower right quadrant. I the CT it said it looked like that mass was in contact with my secum. At this time I’m on no treatment. What treatment did you have after your initial diagnosis?

Amazing we both have a mass in the right sacrum. Initial diagnosis was in December, 2021. I had post-menopausal bleeding. I had a biopsy done. Then radical hysterectomy that included 5 lymph nodes (3 were infected). Then six months of carboplatin and paclitaxel. During this time, the cancer spread to the periaortic lymph node (positive by biopsy); I then started Immunotherapy - Keytruda and Lenvima. In February, 2023 I got my first good Pet Scan showing cancer was dissolving and shrinking. Unfortunately, after 5 months I started getting skin blisters and rashes. My oncologist stopped all treatment. After skin treatment with a dermatologist, I changed to a new oncologist who has put me back on Keytruda and Lenvima. In regards to your current situation, I'm not happy to hear you feel your communication with your dr. has been somewhat lax. That's why I got a second opinion and switched oncology care. My first oncologist is a great surgeon, but terrible at communication. My new oncologist spends at least 30 minutes with me and is a great communicator -- I fully understand where I'm at and why he felt my Immunotherapy shouldn't have been stopped. For you, try writing down each question you have and see if your dr will answer each fully. What you're going through is hard enough.

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

Oh my gosh Paula21 we are indeed kindred spirits! I’m so sorry you have gone through so much but sending prayers your treatment is working. So you are no longer have any adverse skin reactions this time? If not, that’s awesome!
I so agree with you and wish I would have trusted my gut sooner. In the last few days I have reached out to a former student that is an oncologists and she has suggested another Dr that she says is unbelievable. Like you, I am going to contact him tomorrow and set up an appointment. Just like you, my first Dr is a great surgeon, but not the same in the communication department.
Thank you so much your compassion, suggestions and listening. I will keep you posted.
Have a wonderful day! 💜