sule

@Ana38425232 @ImNalia_ However, I was told that some people are eventually able to get them by filing a lawsuit. I just don’t know how long the legal process usually takes.

@Ana38425232 @ImNalia_ At the same time, as far as I know, immunotherapy drugs are brought to Turkey from abroad. They need to be approved by your health insurance, and I’ve heard that for very rare diseases like SCCOHT they are usually not approved at first+

hi, i’m şule, i’m 23. a month ago i went to the hospital because i had stomach pain and diarrhea that just wouldn’t go away, and somehow my life turned upside down. i got diagnosed with SCCOHT, a very rare and aggressive ovarian cancer+

i’ll keep sharing my process here. maybe it won’t matter to most people, but if one day another woman gets the same diagnosis and finds this, maybe it will help her feel a little less lost.#sccoht

because i am ready for anything if it means a real chance — every side effect, every hard treatment, everything.i really hope things go the way i want from here+

on monday we’re trying to meet an oncologist at hacettepe. for me, every day that passes means my cyst can grow and spread more. but instead of choosing a treatment that might only give me a few months of relief with a high chance of recurrence+

@Wandererbard19 teşekkür ederimm

@suleyiiim Acil şifalar diliyorum umarım kısa sürede iyileştiğin haberini alırız dualarım seninle 🙂🙏

three weeks after surgery, the abdominal pain started coming back. i told people i was scared another cyst was forming, but everyone kept saying it was too soon and everything had already been cleaned out. i tried to believe it too+

i’m stage 3B. i have a 9 cm cyst growing in weeks, pressing on my intestines, making basic things like going to the bathroom difficult. but what broke me most wasn’t just the pain it was feeling like there wasnt really a team willing or able to go beyond the standard protocol.

and this was the hardest part: realizing how limited the real options actually were. everywhere, the answer kept coming back to standard platinum-based chemotherapy, and beyond that there was very little concrete alternative being offered+

and in some cases HIPEC or additional surgeries. realizing how serious and uncertain all of this was completely shattered me.

from what i found, many recent approaches use aggressive treatment combinations beyond standard platinum-based chemotherapy — multi-drug chemotherapy regimens, high-dose chemotherapy with stem cell transplant, sometimes immunotherapy+

the final diagnosis became small cell carcinoma of the ovary, hypercalcemic type — SCCOHT.that was the moment i met this horrible cancer. the more i researched it, the more terrified i became. every paper i read talked about how aggressive and deadly it is+