Misdiagnosed Stage 3C1 Twice

[lallaland]

Need to Vent:

Just wondering if anyone else has had the same frustrations with the healthcare system and doctors fitting patients into a box instead of putting in the necessary effort to get them help for their pain ?

Background: I had symptoms of unusual discharge, bleeding after sex, and pain during intercourse for a few years, but always had normal paps and was told it was BV whenever I’d get it checked out, even tho antibiotics never made the symptoms go away.

On September 10, 2023, I woke up in the middle of the night due to my hip having one of the most intense pains I’ve ever felt in my life. A friend brought me to the ER, and although my symptoms were left hip pain and abnormal vaginal bleeding, I was given a CT and diagnosed with a kidney stone … even tho there was no evidence of one on the CT. I was sent home and made an OBGYN appointment, but I couldn’t get in until Oct 20th. During that time I suffered thru it with ibuprofen and leftover painkillers I’d had (thank god).

On the day of my appointment, the doc was sick, and so I couldn’t be seen until Nov 20th. I couldn’t do it anymore tho, the pain was way too much, so I went to a different ER, where the doctor was condescending and didn’t believe that I’d been in pain and bleeding for 40 days. I did get a transvaginal ultrasound which read: There is a 4.0cm well-circumscribed lesion within the left adnexa with dependent low level echoes. This technically does not meet criteria for follow up… they explained it was just a cyst, they can be painful, and sent me home with two days worth of medication. I felt SO defeated.

I was lucky enough to get off the waitlist and grab an appointment for Nov 6th. The OBGYN also seemed skeptical of my symptoms and timeline - maybe bc I’m young and don’t like to show I’m in pain ? But then she did an exam and completely changed her attitude, got me in for a biopsy that week, and set up all necessary appointments.

I spent two months suffering greatly due to multiple doctor’s unwillingness to put in the extra effort to help someone in pain. They made me feel like a liar, like I was exaggerating how much it hurt, and as if I were stupid for not knowing it was a cyst/fibroids/no big deal.

I ended up being diagnosed with Stage 3C1 invasive squamous cell cc which metastasized to my bilateral lymph nodes and upper 1/3 vagina with perimetrial invasion. My cc was 7x4cm with a 3.6cm left lymph node tumor, which is where my pain had woken me up came from. I also had left sided hydronephrosis and crushing of my ureter, so I ended up needing a stent before my kidney failed.

My gynecologist said if anyone had bothered to examine me, they would’ve seen it immediately. I’m just not sure how multiple medical professionals missed Stage 3 cancer when it was basically thrown right in their face.

Honestly, things didn’t start going well after I was finally diagnosed. It’s been a long road trying to get the help I need from doctors here. There’s been so many issues that could’ve been avoided, so much unnecessary suffering, but I made it and I have adequate care now.

I just wanted to create this topic in case anyone else wanted to vent about this. I appreciate those who have helped and those who would help in these situations, but my specific doctors were not it and wondering how many others have had to go months without treatment due to this type of thing happening.

[Willow23]

@lallaland Vent away!!! i know exactly how you feel!! I was going to my GP for months with back ache, hip pain, pelvic pain - everything! Had a smear which came back clear with no abnormalities. My GP told me I was vitamin D deficient and the pain I was experiencing was my bones absorbing it! And I was peri-menopausal too! And as she had experienced slight hip pain when she was menopausal, I was the same!! I kept saying something wasn’t right and that I’d never felt pain like it! I wasn’t sleeping with the pain & chewing through painkillers!

It was only after getting completely fed up and paying to go private and seeing someone that I was finally taken seriously! He took one look and booked me in for biopsies, scans - the works! I was diagnosed with Stage 3C too with lymph node involvement. As soon as I was passed over to the hospital specialist it all changed, they were and have been amazing!!! I finished treatment about 6 weeks ago, and although it has been tough in parts, I got through it and now feel ok! Just waiting on 3 month scan dates to see how things have gone! Sending massive hugs to you, here if you need to chat xxxx

[Debstar83]

I feel your pain I’m sorry I’m going through something very similar and still now with numerous trips to a and e gps gynaecologist I finally got a colcospy biopsy still wasn’t taken seriously and having to wait five weeks for results which I know will show advanced cancer lost two stone in weight foul yellow discharge pain in back hip pelvis vagina bowel amd bladder frequency bone bruising and pain can’t sit or stand without crying in pain how can we be misdiagnosed and treated so badly

[lallaland]

@Willow23

Thats absolutely infuriating ! I’m so sorry you’ve also had this type of experience I felt completely betrayed by the people who were basically my lifeline.
Also that’s great !! I also got better docs afterward and it’s made a huge difference !

Sending you all the positive vibes for your 3 month scan !! and to you as well, I’m here if you’d like to chat ! Thank you !!

[lallaland]

@Debstar83

I’m so sorry you’re struggling so much with this, and I hope things start to go better for you soon ! It just takes time unfortunately:(

Wishing you the best xoxo!

[Debstar83]

@lallaland thanks for your kind words and support I just don’t understand how they are missing what’s clearly starring them in the face it’s like they just leaving it to spread and be to advanced for Any treatment it’s my two children I feel for most they don’t deserve to lose their mum in such an inhumane way

[Akj]

For some reason it doesn’t seem like something medical staff are told to look out for, and there are so many stories of women going back and forth before finally being diagnosed it’s so sad.

The same thing happened to me during my pregnancy I was experiencing bleeding and bad back and hip pain (which I’d bring up at every check up)

they checked to make sure the baby was ok and then it was all put down to pregnancy.

After birth I was having more pain and
bleeding didn’t stop, went to gp and had my 6 week post pregnancy check up, no major concerns, they did a Pap smear as I was due… came back as low risk

X2 trips to emergency at the same women’s hospital I had my baby was checked for infections and all clear then sent home…
was in agony by this point… went back to gp and was referred to a gynaecologist, she took one look and basically told me I had cancer, took a biopsy
It came back squamous cell carcinoma stage 3c1 from HPV16.

[RT102]

I’m sorry you’ve been going through all this, I feel your pain and it makes me so cross that stories like this still emerge for women and that we are dismissed or fobbed off with very obvious symptoms. I’ve recently found out and going back several years that my smears that had been reported as being clear were actually misdiagnosed and that in fact I actually had high grade cells at that point and that this was missed. Procedures weren’t followed correctly when having investigations either. The year I got diagnosed I’d been back to the Dr many times with stomach ache, bowel issues and lower back pain that got progressively worse and just generally not feeling right. It culminated in me having extreme bleeding and pain where I was housebound for a couple of months and yet was told this was potentially normal for someone my age. I had to really push for further investigations where eventually I was diagnosed with stage 3 cancer. I feel so let down by the many health professionals I saw and I’m determined to change the way in which women’s health is viewed as it’s appalling some of us have had to go through all this. I really hope you are doing ok and again I’m sorry to hear you’ve had this experience. Things really have to change!

[lallaland]

@Akj

Yes, exactly ! No one would listen or do the necessary indicated test for pelvic and back pain and abnormal bleeding - a pelvic exam. My OBGYN did the same thing - as soon as she looked she knew it was cancer and set up all the appointments with GYN/Oncology. She said if anyone had bothered to examine me, they would’ve seen it immediately since it’s basically taking over the cervical stroma. And she has no idea how they didn’t see it on the CT since there’s multiple lymph node involvement.

[lallaland]

@RT102

several years that my smears that had been reported as being clear were actually misdiagnosed and that in fact I actually had high grade cells at that point and that this was missed. Procedures weren’t followed correctly when having investigations either.

What ?! I really hope they take some responsibility for the life-threatening mistakes they made - that’s a HUGE medical malpractice issue. I don’t understand how this happens and goes ignored

I feel so let down by the many health professionals I saw and I’m determined to change the way in which women’s health is viewed as it’s appalling some of us have had to go through all this.

I feel you. I honestly did not want to go back to any doctors bc of the treatment I had before and after diagnosis (I spent two months in the hospital and they were just not nice to me). It’s traumatic to feel that amount of pain, do everything right in order to get well, and then basically be betrayed by the ppl who are supposed to make things better.

But I’m doing well now, thank you so much !! I hope you’re doing okay too, and I agree - something needs to be done. I’ve been documenting everything on my Instagram but it’s not going to change things. I’ve been trying to find a way that could really make a difference

[May1]

Hi @RT102
I’m sorry to hear this. How long did it take to hear back about your smear tests? I am still waiting.
I feel it might be similar for me. I had a smear test a year before diagnosis (in 2022) which had HPV but normal cells but then a year later I was diagnosed with CC 1B1. Even then (2023) the smear only came back as HPV with borderline changes. Luckily I was referred for colposcopy and had a biopsy.
Any symptom I had I put down to child birth as they started then (heavier periods and discharge). I regret not asking about it and I just got used to it as it only happened on my short period each month. I wish midwives gave more info on this to know what needs to be checked. I also had 2 heavy bleeds during pregnancy- went to hospital and they checked baby was ok and pretty much said all was fine and never investigated further. I had a normal smear test the following year! Something doesn’t add up but I did have a grade 3 tumour so maybe it just grew within a year!
Sending best wishes to all of youxxx

[JennyCH]

So sorry to hear this. I had a similar experience. I had annual pap smear and detailed screening for irregular off-cycle bleeding and they couldn’t find anything wrong with me.

When I got diagnosed (3C) the doctor was absolutely shocked that I had a regular gyne and never skipped a pap smear or annual examination. He said I should think about suing my gyne but really had no space in my mind to do that after the diagnosis.

Its really frustrating but just look ahead - you now know what this is, which means you can now fight it.

[Smitgloc]

I was diagnosed stage 4 with no possibility of surgery. After multiple biopsies, found out it wasn’t Stage 4 and had complete hysterectomy in January.