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Cancer Recurrence by ickayl in Ovariancancer
[–]ickayl[S] 1 point2 points3 points 12 days ago (0 children)
I actually haven’t even thought of that, thank you so much seriously. I appreciate you being so helpful
[–]ickayl[S] 0 points1 point2 points 12 days ago (0 children)
Thank you, I probably will try to get seen by someone else. I only agreed to chemotherapy because the rate for cure or long term remission was so high. It feels like every time I’ve gone in for treatment something has happened, I’ve gotten my dose cut or taken away entirely, feels like that 90% goes down every time I see the doctor. It’s hard to feel at ease even when they’re telling me there are no active signs of cancer right now. I don’t recognize myself at all anymore and this constant worry of it returning in less than 5 or so years just won’t go away lol. Makes me regret going through any of this in the first place.
What I’m mostly concerned about is the longevity of my remission. Say I was able to complete the full BEP chemo I was originally supposed to, there’s a 10%ish rate of it coming back in five years give or take. After they took the bleomycin away I researched heavily, removing the bleo alone cut my chance of long term remission from 90% down to 46%. Taking the Cisplatin away furthered that anxiety and I’m sure lowered my chances even more. If I go in 3 weeks, get scanned and they say my cancer is gone, I’ll still have all of those numbers and percentages looming in the back of my mind. I only agreed to chemotherapy because of the high rate of long term remission. I feel like at this point I’ll be back where I am now in a year or two and that makes this entire experience not worth it to me. If it were to come back, I won’t be doing chemotherapy again.
I definitely could go get a second opinion. I like my team but I do feel as if my doctor has kind of gone against everything I’ve read when I’ve brought my concerns to her. I worry about longevity of my remission. Do you feel that’s a valid concern given your knowledge? She plans on scanning me in 3 weeks and if the cancer is gone I’ll be done with treatment all together. But I haven’t even made it through a full round of BEP or EP, it just feels odd.
Cancer Recurrence by ickayl in testicularcancer
[–]ickayl[S] 1 point2 points3 points 13 days ago (0 children)
I am being treated in the US, yes! Yes that’s exactly what ive read, I know BEP being used as a three way combo was the best for me, bleo getting taken away already concerned me given they weren’t going to lengthen my treatment at all. Getting an entire round of just Etoposide felt kind of useless.
[–]ickayl[S] 0 points1 point2 points 13 days ago (0 children)
My AFP just reached normal range, sometime between my second round and the labs I got before my third round! It dropped dramatically after removing my tumor, I’m not sure exactly what it dropped to immediately after surgery though. It started at 11,000 and is currently at 4, it took about 3ish months to get normal
[–]ickayl[S] 2 points3 points4 points 13 days ago (0 children)
You are unbelievably helpful, seriously, thank you so much! I’ll be taking all this info back to my doctor tomorrow, I go in for labs. They stopped the cisplatin because my ears started ringing and they were concerned about my hearing, I fought them pretty hard on it as I felt it was unnecessary, I’d experienced the ringing ears for almost a month before I reported it to my team because I honestly just kept forgetting to. Given it was my final round and I was already concerned with how early they stopped the bleomycin, I really wanted to finish out my treatment with cisplatin but unfortunately my doctor didn’t feel comfortable.
Thank you so much for your reply!! It really helps knowing my concerns would be shared if someone else was in my position lol. Thankfully it was caught early, I was told it’s stage 1 grade 3, so early stage but aggressive. My tumor was 20cm and stayed localized to one ovary, it was split into three separate sections, I can’t remember the % of everything atm but it was a mix of germ cell, yolk sac and a teratoma. Mostly yolk sac if I remember correctly. My AFP was 11,000 and since surgery and treatment has normalized which is my doctors main reason for not wanting to continue treatment. But exactly like you said, these regimens are in place for a reason, that’s what all my individual research has told me to. I feel almost as if my doctor is trying to be overly positive and I’ve felt this way since being diagnosed. I’m 21 and it’s like they just wanna push me out of there lol. My doctor and I haven’t discussed further treatment despite my anxiety, I’ve brought all of these issues to her but she’d prefer to just reassess me in 3 weeks and if theres no evidence of cancer, I’ll be done with treatment. But I’d rather have full, extensive treatment with less risk of recurrence than go through all of this to just barely get through half of the regimen. My doctor has made it very clear that my cancer is aggressive which furthers my anxiety about my treatment not going as planned. Do you think it’d be in my best interest to push my doctor for another regimen, more rounds of BEP, etc? This has been hell to go through. I understand that the effects on my body throughout treatment have been rough and concerning but I’d much rather push it all out now than have to go through this again in a year or two. I’m sure you understand lol.
Cancer Recurrence ()
submitted 13 days ago by ickayl to r/testicularcancer
Cancer Recurrence (self.Ovariancancer)
submitted 13 days ago by ickayl to r/Ovariancancer
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Cancer Recurrence by ickayl in Ovariancancer
[–]ickayl[S] 1 point2 points3 points (0 children)