I know, Lisa, it’s so scary and at times—sometimes feels like it controls our thinking!
We have to work to just breathe and bask in the Sun of each day. I was thinking this morning that I would not have lived past July or August 2020 without the treatments available, so we’re very lucky to have some time and might end up being QUITE a bit of time… You just never know!
My friend Betsy here in New Mexico got diagnosed 3C HGSC 14 years ago! She had recurrences, back on the chemo, the whole thing—with a full year of Avastin, etc., and just NEVER recurred again! it’s so encouraging.
I am wondering if they did a PET scan for you? What happened with me last year is over the period of 7 months, my CA125 was increasing incrementally, steadily. By November, it had gone up to 34 from 6 (in June). My onc said “I think we need to do a pet scan because the steady incremental increase is making me think it’s occurring in lymph nodes rather being caused by an actual tumor”… And she was spot on… I had only recurred in lymph nodes. the CT scan would not have shown that because the actual lymph nodes were not that enlarged—but had super high SUV values on the PET scan—meaning they were super packed with bad guys! But have faith Lisa, I also learned that you can do radiation for lymph nodes and surgery… There are a lot of treatments and options out there for all forms of recurrence!

Lisa,
I'm so sorry you are going through this. (Writing as a another stage 4, no BRCA, no HRD). I was diagnosed 3 years ago. I've been through the gambit. I don't know what to tell you. The reason your oncologist can't give you any straight answers is because this disease makes no sense. I thought I'd be dead by now. I planned for it.

I relapsed 6 months after my initial (Pac/Carbo), I was considered platinum resistant then went on Doxil and Avastin. Finished chemo May of 2023 and continued Avastin until April of 2024 when my CA-125 hit 160 and we thought a relapse was imminent. We planned for chemo and I was terrified. I went in for my last blood test and my CA-125 fell 30 points back in May. I've been on NOTHING, no treatment and poof, my CA-125 is now in the 40's. It's been 18 months since I've been on chemo after my cancer returned the first time after 6 months. I just signed up for a 10k and I feel amazing. No pain, nothing. I don't know why, I don't know how long I have but I'm here for it.

Please know, that all of us, EVERY ONE OF US here know the exact PTSD you write about. The not knowing is so cruel. I want you to know that we are living longer. If your body is healthy and you can take the treatments, there is no reason to think you don't have time.

Sending tons of support and strength,
Julie

Hi Julie ,
Thank you so much for all your responses and advice. I really appreciate how thoughtful and caring you are it really helps. I didn’t have a Pet scan only ct with contrast and in six weeks when I go back to see my oncologist for follow up and bloodwork we will see where the ca 125 is at and go from there. I did read on the portal her notes and does say watching closely and send folr1 & her2 inc today on reoccurrence resection tissue in anticipation of possible need to further treatment so I know she is on top of things and do trust her she knows me for a long time . Meantime I’m on maintaince avastin and praying can have more time before starting again I think that’s what’s most stressful and feel if comes back quicker it’s worse. I always fight and don’t give in just was a rough year and hoping to keep it away as long as I can! Sending you well wishes always 😘

Hi Lisa, what I learned is that the CA125 number can fluctuate from test to test and can sometimes take a jump due to inflammation, etc.… But if you have three steady increases in a row, there is statistically a chance that incremental increase is a prediction of a recurrence. That certainly is what happened to me with four steady increases in that number in late 2023.
I wonder if this is just an anomaly? and I would wait to see what your next CA 125 reading is! Maybe they can take another CA125 measure sooner than scheduled? Xo

Thank you for sharing your story and the support it really helps. Wow a 10k that’s amazing I miss running but have started walking and biking when I can to build some strength back . I am so grateful for this site it helps to talk things out with others who understand !