Hello - I hope everyone is doing well. I’m new to the group and looking for some comfort in my recent cervical cancer recurrence.
I was originally diagnosed on November 11, 2023. I went through the chemo/radiation treatment of 25 radiation treatments, 5 low dose chemo treatments, followed by Brachy. I finished treatment at the end of March and had my first scan on July 1. Showed complete response, but had a lymph node lightly lit up on my scan, but not strong enough to be active cancer cells. They wanted to be safe, so asked me to have another PET scan 3 months later. Second scan was on September 30th which now showed 2 lymph nodes lightly lit up, but again not glowing enough to be active cancer cells….and a 3rd lymph node in my rectum showing likely metastasis. Everything I read on cervical cancer recurrence to mesorectal node shows very rare and poor prognosis, so of course I’m really scared. My doctors decided they wanted to give me a high dose radiation targeting just that lymph node. I just finished the 5 high dose treatments to that lymph node, so now I wait 3 months for another scan. I’m scared that this will just keep on spreading with every scan, so I’m trying to find a way to continuously cope with this and the scan anxiety I have. Wondering if anyone has gone through a similar experience. The drs said if my next scan shows those two lymph nodes are active cancer cells, they will zap them just like they did the last one, but if it spreads to anywhere else, then it sounds like it’s incurable and chemo will be the next route 
Hi Kcat0218 and welcome to our group.
I’m really sorry to read your story, and can identify with the fear you are feeling about your recurrence. I have a similar story to tell in some respects, so I have some understanding of some of what you’re going through.
I was also diagnosed at stage 2b, and completed 32 sessions of radiotherapy and 4 chemo treatments in 2018. I had my 3 monthly post treatment scan, the result was NED and I continued with 3 monthly check ups. I was feeling good, had no symptoms of pain or bleeding and thought I was doing well. However, at my internal examination which was 9 months after treatment ended my consultant spotted what he thought my be scar tissue from radiation damage-it was tiny but I was sent for an mri and then a biopsy under anaesthetic. My cancer was back in exactly the same place, and my fear was worse than at my original diagnosis.
I had a petscan, and the only place which lit up was the tiny tumour on my cervix which was less than 1cm. I realise I was lucky in that there was no node involvement, and after a failed attempt at a salvage hysterectomy, and multiple additional scans, I was able to undergo a total pelvic exenteration. It wasn’t an easy thing to go through but it offered a chance of getting rid of the cancer which in my case was a 30% chance, as by that time my cancer was aggressive and spreading rapidly over my womb and bladder.
I didn’t do any reading of research papers, statistics or dr Google and trusted my team, which by then involved gynae, urology and colo rectal. My outcome at that time without the surgery would have been palliative chemo, I knew that, but never discussed it with my consultant as I held onto the thought of surgery. I kept away from horror stories on the internet-to this day I don’t search for them as my fear might have overwhelmed me, and I know would not be good for me mentally.
I realise your case is different in that you have had these nodes light up, but I do know how scared you will be as you wait for more scans. I am not the best person to answer how you deal with that kind of anxiety, as I suffer from ptsd and will do anything to avoid any type of scan (though I’ve had to have several for other things in the past year or so).
I’d say trust in your team to have the best plan put in place for you after your next scan. Treatments have moved on, even since my original diagnosis, so there will be a plan, be it a chemo cocktail or other type of therapy.
I never focused on a stage number, only on the plan. I never focused on incurable, only on treatment. Treatable was a much easier and kinder word for my mind to handle! But my heart goes out to you-it’s very difficult to see treatment being so successful for many at stage 2b who do not have any recurrence, and I found that quite difficult to deal with. I never actually asked “why me?”. Not once because it wouldn’t help to look backwards or have questions which could never be answered.
I considered myself a unique individual, not a statistic (which I never read anyway) and just kept going, one day at a time trying to keep a positive mindset when I could. I know that’s not always possible and I certainly don’t manage it all the time. But that’s ok too.
You have such a lot to deal with, and it won’t be easy I’m sure, but they’ve already told you that the nodes can be zapped if they’re cancerous, so that’s a plus to concentrate on-there will be a plan of action.
I hope you’ll stick with us in the group and find us a support for you. There are a number of ladies here with advanced cancer currently undergoing treatment, and I hope some others will come along and post replies for you.
The support line (number is in my signature) can help with practical, emotional and medical advice so please call them if you need to. Free counselling via BUPA/Macmillan is also available should you want to investigate that and the support line can give more information. I had this myself, and it helped to talk.
I hope you have good support around you with family and friends but sometimes you just feel you want to speak to others who understand, and that’s what this community is for-feel free to use it as much as you’d like and there will be a listening ear and virtual hugs for you always.
Sarah xx
Thank you, Sarah, for taking the time to respond in such detail. I feel that Ive gotten myself into a good state of mind, but do find myself wandering off track from time to time. I tell myself that I could get in a car accident tomorrow and die and I obviously wouldn’t know this would happen and waste my time worrying about it…since I can’t determine my fate. I have to stay focused on my happiness and live in the moment. Of course this state of mind is easier s
then done, but im trying my hardest. I feel like if I get more bad news on the next scan, I’ll be starting this all over learning how to wrap my head around it again. All I can do is try to stay tive. I find these forums to be so very helpful to me mentally as talking to people that understand what you’re going through can ease the pain
I would describe myself as a positive realist in all of this. Living in the moment is something I would completely agree with as that’s all we have for today. So in my mind it’s a good way to deal with life in general!
My team have never used the word “cured”, so I don’t, even though my cancer was successfully removed with clear margins. It’s a word…just a word but doesn’t really hold meaning for me. Just like cancer is only a word, and one I would never give a capital letter!
You sound like you have the right attitude and that’s really a great place to be to deal with all of this. We cannot determine what happens to us, we just have to have faith that things are ok for now, and extend that on a day to day basis. I’m glad to wake up in a morning, and one day I might not-but it would be a waste of time and energy to anticipate or worry about that.
Living in the now works for me, and I hope it does for you too. I veer off track from time to time, but I’m only human so I accept that and let it go. I’ve had times of multiple pieces of bad news but once I process them I try simply to keep going.
I’m really glad you find it helpful to be part of the forum and community-now that you’ve found us you know where we all are!
Sarah xx
