Hi all
This is my first post
I dont know where to start! This has been a very stressful and long process to get to this diagnosis, first of all getting the practice nurse and GP to listen to my concern’s took 7 months before a referral to a gynaecologist in the community. Waited 6 weeks for that (after calling and calling for an appointment) to be told he wouldn’t even look at me until i had an ultrasound, so the waiting and calling began again. By the time i had another appointment with them i was bleeding quite heavily, the consultation went horribly as they tried to examine me but that caused severe bleeding so couldn’t take a sample. I was referred to an oncologist gynaecologist and got an emergency appointment within a few days (so feel very lucky to get it so quickly) he examined me and and could see the tumor, he took a sample to be tested put me straight on the waiting list for a radical hysterectomy and booked my MRI. He thought from the size of tumor i was stage 2b but MRI suggested 1c. Because of this i had to have EUA which suggested local spread.
PET scan has shown that i have lymph node involvement so i am now staged at 3c.
I am currently waiting for my first appointment at the cancer centre at a different hospital which is on 7th Feb (this is to meet the team and discuss treatment and sign paperwork) then i will get a planning meeting.
I am very anxious and would love to connect with others in this situation
Sorry for the long post and hope you are all doing well xxx
I am not in.your situation now but i was in the past. Also stage 3, 5 lymph nodes involved. The dark and distant past of 1997, the year princess Diana died. I am still kicking all these years later and just in Paris on my way to Costa Rica. Grit your teeth, endure it and you will get your life back.
Karen
Hi Niknac
First time poster
I too have just been diagnosed with CC at stage 3B. But like you I had no trouble getting to that point, after having a routine blood test my GP told me my kidneys weren’t happy with my new blood pressure tablets. She sent me to my local hospital for an ultrasound scan where they discovered a mass growing near my bladder and was blocking the tube going to my kidney. I had to have a stent put in the ureter.
The urologist past me onto the gynaecologist department and they arranged an MRI scan, everything happened really quickly and they soon past me onto the cancer Center in the city. I had no symptoms whatsoever, I don’t think the gynaecologist even believed me when I said I had never had any bleeding.
I’ve already had my PET scan and last Friday had the CT radiation treatment planning scan (complete with tattoos). Tomorrow I have another meeting with my oncologist consultant to sign the consent forms. Then on the 10th I have a chemotherapy pre assessment appointment with the aim to start treatment on the 13th.
So from being diagnosed on the 29th December to starting treatment on the 13th February I think that’s really quick. Not looking forward to it one bit but reading all the stories and getting inspiration from all the brave ladies on this site I know we can do this.
We’ve got this Niknac.
Hi there. Here with you in spirit since I am going through the exact same thing. Had abnormal bleeding so went to gyno. Pap came back abnormal. Went for colposcopy and 3 days later they said cancer. 5 days later I went to see oncologist who staged me at 3A. Had PET scan last week and have two lymph nodes involved.
I’m 42, based in the US, and no children. I am currently going through fertility preservation to harvest some eggs so when I am all done with treatment, I can still have a biological child via surrogate. I will go through chemo, radiation, and brach.
This has all been a whirlwind that’s happened since 1/13/23. I am terrified and don’t want to have to go through this, but more importantly, I don’t want to die so young. I have good days and bad days. Hearing other women’s journeys and how they made it through gives me hope and something to hold on to.
Hi Karen. Can you share what your course of treatment was that worked so successfully? (Congrats on being 26 years cancer free!)
Yeah, i had radical hysterectomy first followed by chemorads but it was a different cocktail back then. Cyclophosphamide, adriomycin and cisplatin. 6-weeks of radiation. No brachy.
Then i developed vaginal cancer 5 years ago, caused by the radiation. I had total pelvic exenteration for that and i am now signed off from follow up.
Karen
Dang, girl. You’ve been through it and are still here to type to us scared ladies. Total rock star!
I’m so curious why my doctor said surgery wasn’t an option and instead to do the chemo/rad/brach. She said they’ve had a “75% cure rate” doing it this way, so those odds are pretty good. I’m guessing it’s because the chemo/rad works and there’s no need to take the stuff out. I’ll have to ask when I have the courage.
Karen - I’m taking you and your fighting spirit with me to my treatments. <3
Hi Hazel1
So sorry to hear that you are going through this and im sending you love and strength and yes “we have got this!”
It sounds like we are around the same stage of the treatment starting as the hospital seem to do things in a different order as my planning scan will take place after the signing of papers and meeting the team.
It would be great to stay in contact and support each other through this x
Thanks for the reply 
Hi Petesdragon
Thank you for the reply!
You have given me hope with your story that there is a light at the end of the tunnel!
Its great to hear that you are traveling and living life to the max x
Stay safe and enjoy that amazing holiday x
Hi Kittycat
Thanks for the reply x
Wow! That was fast!
The hospital first told me it was cancer 24/11/22 but took so much time to have MRI, EAU and my PET scan got cancelled so had to wait three weeks for that. Inbetween all of these tests i had to wait for MDT meetings to look at results and discuss next steps. I feel like the last few months have been just waiting whilst i have been left with this devastating news to deal with. As the original hospital does not do the chemoradiation treatment needed i have had to be referred to another hospital and that is now what im waiting for (only just over a week now until my appointment)
As i already have children i have not had to have any fertility harvesting but with the delays in treatment that have happened god only knows how long i would of had to wait for that!
It would be good to stay connected for support and wish you all the best for the next few months
Sending love and support Nic x
There is so much hope. Loads of survivors just getting on with it. Good luck and thanks for nice comments.
Hi Ladies
I was at a very similar staging to you all stage 2b/3a
I was diagnosed in Sept 22 and my treatment of 5 chemo and 25 radio plus brachytherapy started in Nov 22.
I felt so numb, and in disbelief by my diagnosis. I carried on as though everything was absolutely normal. My way of dealing with it i guess. I only told my very close family, and 1 of my best friends.
I thought I’d give you my positive/negative experiences of my treatment and the outcomes so far.
I’m not going to sugar coat this because the treatments aren’t easy, but luckily i had a very supportive medical team.
The chemo is the worst of the treatment. Sickness, diarrhea,constipation, tiredness and I developed an allergic reaction to the treatment😩 which was eased with antihistamines, oh, and did i mention diarrhea!!! The oncology nurses were fantastic and were always so supportive The only good thing no hair loss with the type of chemo i had. One word of advise during chemo…know where the public toilets are!! You’re going to need them.
The radiation was a breeze, it literally takes 20 mins.
The only downside is that you have to go daily(weekends off) to the hospital for 5 weeks. Trying to drink 2 litres of water a day was hard, but you must have a full bladder for this treatment. You soon get into a routine though, and the time flies by.
The only side effects of radiotherapy was the dreaded diarrhea and slighty sore skin around the treatment area.
Finally, i had my brachytherapy treatment on the 21st of Dec. This ladies, is tough!! 22 hours laid on your back, not able to move your lower body. The pain was intense from the nodes that are placed internally. I suggest you accept every pain killer going! Thank goodness for the morphine. Once again the nurses and doctors were so caring and helpful. It was at this stage my consultant was able to tell me, after the examination prior to the brachytherapy started, that he could see no signs of the tumour and that i had responded extremely well to all the treatment. I still have to wait for my 12 weekly MRI to see if the treatment has been 100% successful. So fingers crossed 
I also have the added bonus of being thrown into instant Menopause after radiotherapy and brachytherapy treatment and the side effect and symptoms are tough going, but managable.
I am so grateful for all the treatment i have had so far(even the side effects), and the support from the oncology specialists.
Try and always stay positive ladies.
Hi Nic,
Would love to stay connected! I go to the fertility doctor tomorrow to see if the hormones are working. Hoping they can harvest some eggs next week and then I can start chemrad after that. I’m (kind of) excited to get going and just get on with it so I can get better and go about life. There’s no other way but through.
The worst part about my whole ordeal was my insurance (USA based). I went to the doc and they didn’t take my insurance so I said I would pay out of pocket. They did the exam and tests and I got the results of the smear and then they told me that they couldn’t see or treat me with the type of insurance I had. So odd. So I had to try to cancel that and that took 4 months! I finally had to cry on the phone and tell the lady “What if I have cancer!?” in order to get them to cancel my insurance (government based). Little did I know…I really did have cancer.
So as soon as they cancelled my insurance and I signed up for a new one…the doc I originally saw was no longer at the clinic. Ugh. It was such an arduous journey just to get seen. Finally made the colposcopy appointment on 1/10/23 and that’s when it all started. Cancer results 1/13/23. Oncologist 1/18/23. Fertility doc 1/23/23. PET scan 1/25/23. Start fertility treatments 1/26/23. I just pick up the phone and make appointments the second I get the news. No point in waiting. Just wish that I had pushed harder to get my insurance cancelled earlier, but everyone was telling me it was just “fibroids” or a “polyp”.
Meet with radiologist for a consultation this Wednesday. Keep me posted on how you get on, if you like. It makes me feel so much better to know that others are going through this and I’m not alone. I keep telling myself that I’m “not special”.
xx Cat
Hi Rach,
Thanks so much for sharing your experience. For the brach, did you really have to lay still for 22 hours? That is so concerning for me because I have anxiety and I had a meltdown at my PET scan having to lay still for 10 minutes. I thought they put these little radioactive pills in you for a short amount of time?
Cat
Hi Cat
My brach was 22 hours from start to finish. That includes the insertion of the nodes which takes about 1hour in theatre. Then i had to wait on the ward laying flat for 4 hours while a treatment plan for the brach was put together by my consultant. I had a catheter fitted so i didnt have to get up and pee.
The brach treatment itself took another 17 hours, this is usually carried out early evening through the night, so i managed to sleep through some of it.
Nurses come through every 2 hours to move me and to give me pain killers.
You can watch tv, text, make phone calls. Its not claustrophobic as you are just laid in bed.
This was my experience, but I’m sure there are many other brach treatments and options.
Hope this helps a little. Good luck with your treatment
R x
Hiya Kittycat
Sounds like we have both had a battle to get the diagnosis, i have had to battle with NHS just to get a referral and you with the insurance companies. Just glad we are both i a position where it can be treated!
Good luck with that appointment i have my fingers crossed for you that the hormones have worked and you can have your eggs harvested next week, please let me know how you get on!
I think we have a hard road ahead but need to stay strong and positive x
Keeping in touch will hopefully give us both the support and motivation to keep fighting
Looking forward to hearing from you again
Lots of love
Nic x
Hi RachL
Thank you for the reply and all of the truthful information of your experience.
Its good to hear hear from someone who has actually gone through it (even if it is terrifying) having an idea of whats going to happen instead of reading “you may have” has helped me start to mentally prepare for my appointment next week x
Please update me on how your MRI goes and im hoping and praying that they blasted the hell out of it! And that you can start the real road to recovery xxx
Lots of love
Nic x
This is my first time of posting and your story sounds so much like mine. To get to where I am now has taken months as well as a battle with the Gp to convince them that thing’s just didn’t right.and even though it’s been confirmed I have cervical cancer I’m still playing the waiting game since I was diagnosed at the beginning of the year. Communication is poor, I’ve had my pathway changed (not that I knew what it was in the first place) following an MDT and all I know is that I’ll probably be having radiotherapy or combination of radiotherapy/chemo as well as a pet scan. I’m sorry to hear your news. Sending you lots of love. Would like to stay in touch.
Hello lovely… firstly I’m so so sorry that you are going through this and sending you so much love
I was diagnosed at stage 3c in May 2021 7 months after giving birth to my little boy, initially on examination they thought stage 2 but then similar to you in that there was lymph node involvement so went to 3c… I had treatment with 5 weekly rounds of cisplatin, 5 weeks of external radiation every day and two weeks of brachytherapy, I have been NED since November 2021
There are other things I did too… mainly spiritual healing and also used care oncology clinic in London and am still on their repurposed drug medication now.
Happy to talk if you need to buy sending you heaps of love regardless xxx
So happy to hear you’re NED - congratulations! Stories like yours give me hope that this really can be beat. My doctor says it has a “75% cure rate” over here in the US, so that’s not bad. I’ve read so many survivor stories and follow a bunch on Instagram to keep up with them. Here are a few if you’d like to see their journeys too and how they’re doing:
@ sarahjayne_sp (cervical and vaginal)
@ coralforfun (stage 3B, 3.5 years NED)
@ amyjordanofficial (small cell neuroendocrine carcinoma)
@ erinandrews (diagnosed Sept 2016)
@ marissajaretwinokur (diagnosed 2000)
