I’m caregiver for my favorite person in the world, who is now in hospice. 2 years since diagnosis, surgery and 2 rounds of chemo. She now has a gastric tube to vent fluid and gas because of bowl obstruction tumors and the intestines don’t work well anymore. But she likes the flavor of food so eats about 3 tablespoons a meal. Im pretty good emptying her tube. If anyone has any tips for this stage, please share. She’s on dilaudid pump and pain is controlled. This episode has shocked everyone with its speed. Bless you patients and caregivers.

Hello. Looking for advice/similar stories etc. I'm 37F with 2 kids. During a diagnosis for endometriosis (I've always had painful cramps.) the ultrasound found a blocked right fallopian tube with a ~1cm lump in it. They also found a 3cm dermoid cyst on the right ovary but I've always known it to be there. I'm now pending a contrast pelvic ultrasound to see if there's blood to the lump in the fallopian tube. If there's blood to the lump then I get referred to a gynae oncologist. I have my CA 125 tested and its a bit high but still below the limit which could be endo. Wondering if anyone had something similar and pushed to remove the whole fallopian tube? Wondering what questions should I be asking if I do eventually get to speak with the gynae. I'm starting to feel the pressure on the right side of my stomach area and do feel some symptoms. I asked the gynae what to do with the pressure etc but she just said to call a nurse if it is difficult to bear.

This past Thursday I (39F) had a transvag ultrasound because I’ve been having constant, but varying, levels of pelvic abdominal pain along with hair loss, fatigue, back pain (I also have a herniated lower back disk so this was hard to discern), frequent urination, bowel issues, nausea, etc… and they found two massive complex masses (both highly vascular and rated O-RADS 5), one in each of my ovaries. According to the CT on Friday evening, the left is 11.3 x 9.6 x 10.0 cm, and the right is 7.9 x 5.5 x 7.2 cm. CA-125 is 123 U/ml and I was supposed to hear from gyn-oncology on Friday, but I didn’t. CT doesn’t show any signs of spread, which is definitely relieving, but both radiologists have indicated a very high possibility both masses are malignant.

It being a long weekend I’m just at home, in pain, and left alone to wonder about everything coming. My sister suggested I name the masses, and my first thought was Pain and Panic, like from Disney’s Hercules, and it’s so true in so many ways. All the pain and panic.

I just need to share with people who’ve been there, but how quickly do things like surgeries go? Especially with large masses inside ovaries? I know it depends on the health system, but I also know my CT was STAT and it seems like my gyn clinic team was panicking and rushing things, so will Oncology rush too?

(Side note: seeing my gyno go from not worried at all to panic has been a bit amusing considering how calm she’s been about it not “seeming gynecological.”)

I’ve been complaining for ages about all my (vague) symptoms and I just got the whole “you’re a woman and getting older” shit. But my brain can’t decide between anger, depression, or anxiety.

I just don’t know what to do with myself. I’m so tired but too worried to rest.

In December 2024, I was diagnosed with Mullerian ovarian cancer. My oncologist rated it as stage 3 while my surgeon considered it stage 4, due to an effected lymph node in my chest. I went through my initial six rounds of chemo but not before discovering that I have a potentially deadly anaphylactic allergy to Taxol.

Then moved on to a hysterectomy with bilateral salpingectomy and oophorectomy with a lot of debulking. After surgery, I completely lost bladder function (not incontinence, but urine retention), and was forced to use a Foley catheter with all the UTIs that come with that. A urologist diagnosed sacral nerve damage probably occurring during surgery and approved me for intermittent self-catheterization instead. It wasn't easy but far better than an indwelling cath.

Four weeks ago, I returned to chemo with the addition of Avastin followed a few days later with a shot of Fulfila. After that first round, I regained normal bladder function. My onc and I are guessing that going back on the large doses of steroids removed inflammation that was impinging on the nerve. That was great news to me!

Unfortunately, a week after that first return treatment, I was hospitalized with sepsis. So four and a half days in the hospital was not my ideal of course, but while I was there, they did a lot of MRIs and CT scans because they were looking for a possibility of meningitis without doing a spinal tap because of course, I'm already immunocompromised. At least one of the CT scans was for chest and abdomen and was taken with the direct purpose of comparing it to my presurgery scans.

This past Friday, I had my normal check-In with the oncologist before my infusion and he told me he had good news. He read a section of the CT scan report and I asked him if that meant I truly had "no evidence of disease" and he confirmed! I'm dancing with NED! While I was getting my infusion, he printed out the report, and wrote on it A + and a smiley face so I could put it on my fridge. All the infusion room nurses had hugs for me.

I completely understand that I still have a lot of treatment and maintenance to get through. And I also get that this is a fragile state that may not last very long before recurrence. But I do want to thank everyone here who has listened and been informative and supportive while I got to this point that I never thought I'd reach. 💖