Metastasized endometrial cancer in the soft tissue

@naturegirl15 Thank You!! I know you get it and it is so helpful and reassuring having you in my corner. I totally agree, I’m going to have to dig deep in my toolbox, but I know I can do it!
Yes, I’m very seriously contemplating Mayo. I know UM is an excellent hospitable with so many patients, but I can’t help feeling they dropped the ball a bit.
I’m curious how that works with treatment, are you able to get treatment closer to home or to you have to go there?
Our colors too are fading fast here, but even on this gloomy day the wind is still with Fall in the air. Wising you a glorious Sunday! 💜

@jjevitts, I have replied to you directly, but want to add here that your capacity to stand up under tremendous weight is an inspiration to me!

With respect to options, I traveled to Mayo Rochester for my surgery and follow-up and have also met with GYN ONC teams locally to build relationships in my home area in case I might need treatment and cannot travel/remain in Rochester for it. The idea of a consultation between a Mayo team and your UofM team sounds interesting to me. I don't think I'd imagined that as a possibility when I was trying to make my choices about my initial surgeries, but if my path echoes yours and that of others who have had recurrences, I might have to explore that. I believe that Helen, Colleen and others can tell you how Mayo concierge services may help patients locate lodging if and when extended stays are needed in Rochester. There was a family where we stayed last winter who were able to be reimbursed for their travel and lodging expenses by their insurance. All is worth exploring as energy permits. Whatever you choose, I trust in your wisdom to find a path forward that gives you hope.

Sending gentle hugs,

Gynosaur

@jjevitts I wanted you to know that I'm thinking of you. Your consult with your oncologist is tomorrow, right? You said that you feel U of M dropped the ball. With all the delays you experienced and the placating that you got when you kept trying to answers for the pain I can understand your concern.

I going to suggest that even with all this anxiety and stress that you "trust your gut" with this. Figure out how much confidence you feel with your consult tomorrow and whether you'd like another opinion on diagnosis and treatment.
Do you have employer-based private insurance? Medicare? Whatever insurance you have you can do two things today if it feels comfortable to do. Call your insurance and ask if you can go "in-network" to Mayo Clinic with a referral from your doctor. Also consider calling Mayo Clinic in Rochester with your insurance information and make sure they will take your insurance.

Contact Us-Mayo Clinic (scroll down for the Minnesota phone number):

-- https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

If you decide to travel to Rochester, MN, both @gynosaur42 and I have sought our respective treatments there and can give you ideas about how to prepare and where to stay.

How are you doing today?

@jjevitts,
You are very much in my thoughts today as you meet with your oncology team to learn more about the results of last week’s biopsy and what’s possible now. I know it may take time to absorb what you are told and what it means for you. Just know that we are here when you have it in you to share what you understand and maybe even what you don’t yet. Exhaling to the universe…

Gynosaur

Thank you so much! I tried to send a private message to you and nature girl. I really am clueless how to do that, but just wanted to thank you both for all of your support and strength! Such a gift!
I will definitely keep you posted..💜

@naturegirl5 and gunosaur42,
Thank you so much for checking in and sending all the positive thoughts..well my meeting with my oncologist was a bit overwhelming and made everything more real. He didn’t mince words. It’s not good the cancer has metastasized so quickly, it’s in a very precarious location making surgery more difficult. His recommendation, surgery, next Wed. Followed by chemo/ immunotherapy. Sadly, I’m the kind of person that likes a little reassurance, I’m not asking for any guarantees, I know he can’t do that, but just a little positivity would be nice.
I know I’m rambling and I apologize.
I can’t remember if I told you, but I do have an appt tomorrow with another oncologist. I’m anxious to meet him and see what he says. I will keep you posted!
Again, I can’t thank you enough!

Oh, Julie, my heart goes out to you! How frightening! You are NOT rambling and zero apologies are necessary. You are clear and concise, even, for the weight of what you are conveying. I can remember a meeting with a gynecologist back when I was hoping to conceive, during which he brought up the idea of endometriosis. I wasn't expecting to hear that then and had not brought anyone with me. All I heard after he said that word was the same sounds they used on the Charlie Brown TV specials in which adults' voices sounded muffled, like, "mwah mwah mwah, mwah wah, mwah wah wah." Even if you had someone with you to listen alongside you, I could imagine them being similarly impacted.

I would definitely want to hear reassurance at this point; I would want to hear that the surgeon has confidence in their ability to safely remove or at least de-bulk my cancerous growth. And, I would definitely have strong feelings about how long it took to be heard and to have my concerns explored.

I hope you will hear some reassurance tomorrow with the other oncologist; something upon which you can pin some hope. I also hope you are able to explore alternative options; could there be other surgeons who have more experience working in that part of the body and might have a greater chance of success? Is there someone in your family who can spearhead such a search for you? Is Mayo even a remote possibility?

I also hope there are others in this group who can give you a sense of what you're facing and where hope might lie.

Sending tender hugs,

Gynosaur

@jjevitts I’ve been thinking about you since I read your post last night. It’s such devastating news. Like you, I want direct information however I want it delivered with empathy and hope. When I talked with my gynecologist about my initial diagnosis of endometrial cancer I was so upset that I could barely concentrate on what he was sharing with me. I had only seen him a few times prior to the diagnosis so I didn’t know him very well yet he was visibly shaken with sharing the news with me. He talked to me about treatment and also hope in clinical trials. I greatly appreciated all of that and although I haven’t been back to see this gynecologist I often think of him and his kindness.

I’m relieved to know that you are getting another opinion from a different oncologist today. I keep coming back to Hope. I saw and heard that word everywhere when I was getting radiation therapy at Mayo. I want you to know that I send you Hope. Imagine that we are surrounding you with our care and compassion during your appointment today.

Hi All, sorry I've been out of touch. Immunotherapy treatment is going well but I'm having severe knee pain that is really debilitating. I have to use a walker in the house. The skin rash turned out to be psoriasis; however, no one told me that psoriasis causes joint pain. I've started with a physical therapist who is wonderful and promising. He's the one that explained the sequence of events: chemo drugs cause skin problem which cause the joint problems.
jjevitts - did I miss what your biopsy results were?

@paula21 Thanks for you reply, My surgery (robotic) went well, it was in July 2022. Stage 1a endometrial and I'm doing well thank God. No treatment needed at that moment and the Nodules tested were all negative, praise the Lord. I get a pelvic ck up with my Dr every 6 months. She says all good.

Even with the good news I think occasionally about my future and the "Big C". My biggest FEAR is if any cells escaped during my surgery and are growing slowly inside of me (even though I feel great) or are dormant waiting for that day, The FEAR is so REAL!

I need to remind myself daily that I need to enjoy my Life as much as possible and put those worries in the back burner But that is easier said than done, lol!

I do meditation, I keep busy, I read a lot on the subject, I try to stay healthy, I pray and I have lots of fun...I'm Happy

But Occasionally the little devil gets in my head and tries to mess up with my happy time, then my mind starts over thinking about my health issue and the fear settles in for a bit.

In my journey I have learned that once we get a cancer diagnosis (even if it was a good one) we are changed forever, it becomes part of who we are 😊 Now!!!