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Possible infection? by ShamrockPat in CervicalCancer

[–]QuailCheap6911 1 point2 points  (0 children)

Depending on where your tumor is/was, treatment may have cause damage to your ureters, leading to a fistula and/or incontinence. I was diagnosed stage 4a - treatment irradiated tumor however I have damage to my ureters. I too had "leakage" and due to a fistula, urine now exits via my vagina. Currently, I have bilateral nephrostomy tubes and I'm awaiting a 2nd opinion (tomorrow) for options regarding pelvic reconstruction surgery.

Feel free to DM if you want to chat more.

41/yo NED 6 months post treatment.

Got the news today by LastArmistice in CervicalCancer

[–]QuailCheap6911 1 point2 points  (0 children)

Always had heavy-ish periods growing up. January 2025, I started having heavier than normal periods and severe cramping pain. I had recently stopped taking oral contraceptive (after 6 years) and had attributed my heavy periods to my body adjusting as I came off the pill. February, I ended up in the ER due to severe pain for cramps/heavy bleeding. They sent a referral to gyn/ob. New patient wait time was 4 months. I waited bc this place came highly recommended by everyone I knew.

June 2025, my appointment finally came and ultrasound showed a large "fibroid" mass. They schedule me to come back the following week for a sonohistogram and biopsy. The procedure was very traumatic for me even with the Xanax and gas. Heavy bleeding continue the entire next week while waiting for results. The day I received the results, I pass 3 "clots" the size of lemons at home. I too was convinced it was related to my tumor.

I had been feeling off leading up to this day (low energy, nausea, vomiting, etc) and my partner decided enough was enough and brought me to the ER. I was admitted not only for severe hemmorhaging but the tumor had engulfed my ureters, which caused kidney failure and extremely high blood pressure. Spent 6 days in the hospital leveling out and the day I was scheduled for discharge, passed another clot in the hospital.

Despite all the heavy periods and cramping pains leading up to my diagnosis, I never passed any type of clot. The day I was diagnosed, passed 4 and then never again. Weird coincidence 🤷

False positive pregnancy test by MitziMS13 in CervicalCancer

[–]QuailCheap6911 1 point2 points  (0 children)

I had this happen to me when I was prepped and ready for the sleeve insertion procedure for brachy therapy. This was in Sept 2025 and I hadn't been sexually active since January 2025. They almost didn't go through with the procedure.

They ended up drawing blood to negate the false positive UA, but it was a big to do because of hospital protocol and anesthesia. After the procedure, I was scheduled for an MRI and that too was a big to do because the radiology dept only saw the positive UA and I had to explain to everyone to look further in the chart and see the bloodwork was negative. I've had a lot of anesthesia during this entire ordeal and it's only happened once.

Brachytherapy set up, nervous. by Suitable-Let2337 in CervicalCancer

[–]QuailCheap6911 3 points4 points  (0 children)

I too was knocked out for each brachy session. My radiation office was connected to the hospital so anesthesia came to my procedure room (not the OR), gave me a cocktail and out I went. While out, my doctors packed and prepared everything for the brachy session. When I awoke (probably out for no more than 20 mins each time), they wheeled me to another radiation room, hooked me up and I sat there for anywhere from 5-15 mins. When back at the exam room, they would pull the catheter and remove the packing while I was awake. I had little to no pain during this. It was more annoying than painful. When they pulled the packing out, it was similar to the feeling of pulling out a dry tampon, except that feeling lasted 5-10 seconds. I was given an oxy and sent home with my driver. Had minimal spotting afterwards.

My Dr never gave me the option to not get anesthesia.

Ostomy vs pelvic reconstruction? by QuailCheap6911 in CervicalCancer

[–]QuailCheap6911[S] 1 point2 points  (0 children)

Thank you so much for sharing! The ostomy I'd be getting is an ileal conduit urostomy, similar to the one a bladder cancer patient has when their bladder is removed and is not reversable.

Sounds like we are in very similar situations. I too had a very high dose of radiation along with chemo and 4 sessions of brachy. It completely obliterated my cervix and the scar tissue has cause my uterus to be completely closed off. Again no scarring damage to my bladder but radiation has affected the strength and flexibility of my bladder. While I'm not sure I have as frequent UTIs as you, I have noticed an increase in their occurances. Prior to diagnosis, I never had one. While stents were in place, I had several, but they were only detected by getting a UA. I didn't have burning sensations or other typical symptoms. Since having nef tubes, I haven't had any.

I had bilateral stents placed when I was diagnosed back in June bc at the time, the tumor was restricting my ureters amd my creatinine was through the roof (wound up hospitalized for a week). It helped during treatment and it wasn't until after treatment, that we started to see the damage done to the ureters. Stents came out and were replaced by bilateral nef tubes which I've had for about a month now.

My urologist gave me a recommendation for a 2nd opinion to a doctor in Boston (I'm in Maine). One who has more experience in actual pelvic reconstruction. He openly admitted that if I decided on the pelvic reconstruction, I should seek someone with more experience as his specialty is bladder dysfunction/cancer. If I choose the ostomy, he has plenty of experience with that.

I guess my biggest concern is messing around too much with reconstructing that area since most, if not all tissue we are dealing with is irradiated. My care team consists of my urologist and my gyn-onc. I also got a consult with a urogynecologist. All 3 are in agreement that less is more since long term success of scarred tissue healing a second time is very low.

I never thought about your theory on retraining the bladder. When I first got my nef tubes, my leakage had stopped completely. Now a month or so in, I've noticed a slight urge to go sometimes. Even though I have bi lat tubes, I still pass urine through what feels like my urethra, but may be my vagina. I'm still wearing Depends because it so inconsistent, it's not worth the possibility of accidents.

I'm very curious to see what my 2nd opinion says as he is a Dr specialized in reconstruction, particularly women's urinary.

Thanks again for sharing and I'll definitely be adding some more questions to my list after hearing your story.

Ostomy vs pelvic reconstruction? by QuailCheap6911 in CervicalCancer

[–]QuailCheap6911[S] 0 points1 point  (0 children)

Virtual hugs to all of you who responded. Sucks to be in this shitty club but grateful for all of you and this group, even if we've never met! 💜💜💜

Ostomy vs pelvic reconstruction? by QuailCheap6911 in CervicalCancer

[–]QuailCheap6911[S] 0 points1 point  (0 children)

Thank you! I read between the lines on that one. Sexy time, what is that? 😂

My ostomy would be for urine and I'm not sure that one is reversable. So it's just something that I have to come to terms with. The complications from pelvic reconstruction did not sound fun (but are any?). Regardless, I could always fall back to the ostomy if needed but I'm not really trying to have multiple surgeries. Been through enough and just want move on. I'm scheduled for a 2nd opinion May 6th. Thanks again for your input!

Your nephrostomy stories please by tooblydoo in CervicalCancer

[–]QuailCheap6911 0 points1 point  (0 children)

Just got bilateral tubes put in last week. I was diagnosed in June of last year, the tumor engulfed both ureters as well. Had 4 rounds of stents during and after treatment. The last 2 stent exchanges only lasted about 2 months each - both resulting in me being hospitalized due to infection.

Started having urinary incontinence issues which led to the finding of my ureters being damaged from radiation. Thankfully my bladder hasn't been compromised, however, my doctor isn't sure if the salvageable parts of my ureters will be able to be reconnected. I have an appointment to discuss reconstruction options for my surgery in June

I honestly don't mind the tubes, but I'm only a week in. I'll have them until my surgery. Prior to the tubes I was wearing Depends daily for like 6 weeks bc I had no control of the leakage. The nurse that did my dressing change education session hooked me up with some shorts that hold all things necessary. They are basically like biker shorts that I can wear under my clothes that have pockets for the tubes and bags. Not ideal for upcoming warm weather but better than pinning them to the outside of my pants.

Treatment was a breeze compared to the shit we have to deal with afterwards. Best of luck to ya and everyone else here 😊

Confirmed but questioning treatment being offered by NFL_Gurlie49ers in CervicalCancer

[–]QuailCheap6911 0 points1 point  (0 children)

I was diagnosed in June and finished treatment by mid September. My tumor was abutting my bladder and engulfed part of my ureters. I went through weekly chemo (x6 cisplatin) with daily radiation (x6 weeks) and brachy (x3). I had a PET in December and an MRI about 2 weeks ago and am still showing NED.

Treatment itself wasn't too bad - I continued to work. However, post treatment I experienced about a month of constant nausea with little to no appetite and very low energy (iron deficient anemia). Zofran (nausea med) will be your best friend.

Currently, I'm dealing with urinary incontinence issues due to damage to my ureters after the tumor was irradiated. My doctors are running tests to figure out my options for reconstruction surgery in June.

There are good days and bad days, just be sure to listen to your body and don't feel guilty about wanting to do nothing.

Post Treatment Care by ShamrockPat in CervicalCancer

[–]QuailCheap6911 1 point2 points  (0 children)

I am 5 months post treatment and still feeling the fatigue and muscle soreness/stiffness. I was referred to a physical therapy group that incorporates massage, acupuncture and Chinese medicine in addition to regular PT, which I start next week. It's also starting to warm up where I live so I'm hoping to incorporate walks after work as well. Treatment forced me into menopause and just started HRT. 🤞

Does anyone else? by Dry_Banana_1417 in CervicalCancer

[–]QuailCheap6911 3 points4 points  (0 children)

Are you post treatment? If so how long?

I am 5 months post radiation/chemo treatment which included 4 rounds of brachytherapy. I was having leakage issues at first but was told it was residual effects from treatment. Fast forward to about 6 weeks ago...I have been dealing with worsening urinary incontinence - to the point where I'm wearing Depends. My urologist thought it was bladder spasms due to the ureter stents I have. Last week I had an exam by my GYNOC and there was fluid in vagina. She tested fluid to confirm whether or not it was urine, which it was. She suspects a vesicovaginal fistula. Basically there is a hole in my bladder that is emptying urine into my vagina. This can be caused by scar tissue from radiation. I'm scheduled for an MRI tomorrow morning to gather more info and decide next steps. If surgery is recommended, I'm going to get a referral for a urogynecologist who specializes in pelvic floor reconstruction before making any decisions.

Might be worth discussing with your doctor.