Since 2016, I developed symptoms such as fatigue, weight loss, and pain with intercourse. I spent the next seven years going to doctors trying to figure out what was wrong. Eventually, my husband asked for a divorce bc I really couldnt have sex with him the past few years so it was far and few between and he needed more (which was fine, we hadn’t gotten along in a while anyway). My symptoms got more and more prevalent, and I was basically watching my kids, now 13 and 9, grow up from a bed from being so tired.
I had normal paps every three years, so I didn’t think it was gynecological. I was basically told it was all in my head; my family and friends thought I was lazy and anorexic, and I started to believe it was a mindset thing - until September of this year.
I woke up with excruciating pain in my left hip and pelvis, and I started bleeding heavily. My friend took me to the ER where I was misdiagnosed with a kidney stone (ha). I went to the ER again on Oct 21, where I was once again misdiagnosed with a cyst (getting closer at least). I then had my OBGYN appointment on Nov 6. My doctor thought I was exaggerating, but then went to examine me and immediately changed her demeanor.
She set me up for a biopsy a few days later, which ofc was positive for invasive squamous cell cervical cancer. She thought I had Stage 2B based on my exam.
MRI and PET scans showed I actually had Stage 3C with metastasis into my bilateral lymph nodes and pelvic wall, as well as the upper 1/3 of my vagina.
On Dec 5 I had my visit with radiation oncology, and he had me admitted that night due to my left ureter being crushed and my kidney being in danger of failing. I was also tachycardic.
In the hospital I had a stent put in my bladder to help with that, and I had to stay to find a pain regimen.
I have a superhuman tolerance to pain meds; caudal equina nerve block didn’t work; fentanyl patch didn’t work; oral morphine regimen didn’t work. The only thing that helps my pain is a PCA morphine pump at a very high dose.
I was given my first dose of chemotherapy on Dec 12, and sent home on Dec 13.
By Friday, Dec 15, I called palliative care and told them the oral medicine regimen wasn’t working, and they suggested I go to ER if pain got unbearable. I spent from Dec 5 to Jan 18 there.
I’m now 32 years old, I’m stable, on a pain regimen that works (methadone and dilauded), and getting chemo every three weeks - taxol, cambro, and immunotherapy keytruda.
Hopeful to hear from people who have been down a similar road with regards to symptoms, treatment, etc.!
Since I haven’t started radiation yet, I was wondering if anyone has experience with the process beforehand - chemo and immunotherapy - and how it made you feel ? I just had my fourth round, second with keytruda, and I feel as if I have a UTI which has been very uncomfortable
I’m more so wondering about since my cancer spread to the upper 1/3 of my vagina, if anyone else had that and what your experience has been going forward ? I think I’m most scared about never being able to be intimate again, and if I can that it will hurt.
Any advice is appreciated !
Hello @lallaland,
I’m sorry you’ve joined this terrible club and had such a bad lead up starting treatment 🩷
I can’t say I have exactly the same experience but I was diagnosed with stage 3c1, a large tumour and lymph node involvement back in May.
I think treatments differ depending where you are located or what your hospital does.
I am in Australia so here for stage 3c it’s chemo and radiation together for 5 weeks radiation is daily and the Chemo once a week (cisplatin)
Followed by brachytherapy I think this is the standard treatment in a lot of places.
I finished treatment at the end of July last year and had a clear post treatment scan so, so far so good!
Definitely Can relate to feeling bad during treatment, I was bed bound by the end of it and radiation gave me bad cystitis
On intimacy… everything is fine down there for me but it’s more mentally I’ve been turned off it, probably the menopause as well!
Most cancer treatments are tough but you can get through it rest when you need to, drink lots of water and eat whenever you can xx
Thank you so much for replying ! I’m in the USA and I believe it’s pretty much the same protocol - but because there’s lymph node involvement and it’s a very large mass, it would’ve been too difficult to radiate so they started me on 6x chemotherapy and immunotherapy treatments to shrink it down. I have two sessions left, then imaging, then chemoradiation 5x a week for 5 weeks; and then finally brachytherapy.
That’s great that everything went smoothly (treatment wise) and you had clear scans !! Ugh that sounds rough tho, the bed rest and cystitis. I thought chemo would be the worst part, but I’m learning that probably won’t be the case.
Thanks so much again for your advice and sharing some of your story with me !
Hey @lallaland You are an extremely brave woman and so young!
I am being diagnosed at stage 3C too tentatively because of a lymph node involvement but they cant confirm if its 100% cancerc ells in lymph nodes.Will have more chats with my doc about this.
Its amazing we get through life for years until this beast starts to show symptoms!!!
Im glad you are feeling better now. And kudos to you for going through ur regimen and wanting to share your story!
I totally understand I’m going through the same thing and my worry is because of the pain and some mad skin burning it goes bright red nerve pain that makes it impossible for me to sit or stand for more than an hour on top of the pelvic back vagina pain I won’t be able to even have chemo or any treatment awaiting my biopsy results but cdnt even get through a mri for my pelvic bone as had issues there since 2012 due to bad child birth what chance have I got can’t even hold a full bladder for more that 45 minutes without wetting myself I’m broken
Hey @Akj
Im Mona and I maybe put on the same regimen that you are on. I am in new York and the doctors want to start on Cisplatin once a week, radiation daily for 5 weeks followed by 2 rounds of brachiatherapy at the end!
How was ur treatment over all?? Very curious to know as I maybe soon going into it.
How was cisplatin ? What were ur side effects and did you lose hair?
Hey Mona,
Sorry to hear you’re dealing with this atm!
Treatment is different for everyone…
some women breeze through or others might struggle.
I won’t lie, it was definitely tough… by the end of it I felt quite weak and didn’t have much energy and lost a lot of weight and muscle but it was very doable, especially when you know you are fighting off your cancer, I’d always just try to remember that when I’d have to go in!
I didn’t loose my hair but it did thin a bit, not really noticeable though.
Good news is that you do bounce back, I’m now almost 8 months post treatment and I do everything I did before and I’m pretty much back to how I was pre cancer… I think the mental side of it all is my main issue these days.
Good luck with treatment, you can do it 🩷 xx
rest when you need to, drink lots of water and eat whenever you can xx
