Thanks, still have 6 month follow up appointment with oncologist, and mri. Currently hoping for the best. Have also been reading a little bit about the freezing of tumors. Waiting to see if anything good comes of that treatment option. Mine is on my back and was going towards spine, possible paralysis according to Dr. at time of diagnosis. What has been your experience?

Good luck and best wishes, let us know how things turn out.

My tumor was in my right breast near my chest wall. It was found with yrly. mamo. Both Mayo and Northwestern consulted and both said watch and wait was protocol. I went against protocol and had it removed surgically because I was afraid it would grow into my chest wall. My surgeon agreed with me and was able to obtain a clear margin at removal. In a few weeks it will be 1 yr since diagnosis. I am having my first recheck. Will update with any further treatment decisions. I just learned this last week of a woman 7 miles away with Desmoid dx. and surgery on tumor wrapped around her thyroid and spine! 50 yrs of nursing and I never heard of these tumors!

Congratulations!
If you stop you get sure to be on wait and see appointments every six months to see if the response still is ok and it doesn't grow.
I'd definitely avoid surgery if you can, as it can lead to recurrence.
It comes down to what you feel is right for you.
But try to avoid surgery and stay vigilant with it 🫂🩵

Wow, that’s an incredible response to Ogsiveo! A 50% tumor shrinkage after more than two years is definitely something to celebrate. It makes sense that you’re feeling unsure now, especially with multiple options on the table.

While we can’t give medical advice, many members in the community have been in a similar spot—seeing progress and then having to decide what comes next. You might want to talk with your doctor about questions like:
• What are the chances of the tumor growing again if I stop Ogsiveo?
• Would surgery now be curative, or just another way to manage the tumor?
• Are there long-term risks from staying on or stopping the medication?

What’s your gut telling you right now about which path feels right?