Omg it is a small world
Hey, I was treated in Edinburgh too
I was diagnosed with CC last July, initially stage 3 then stage 4. I had smear tests every 6 months and had been for a colposcopy 2 months before I developed serious symptoms. Heavy bleeding after sex and hip pain which I put down to my body armour. (I’m a Police Officer)
My cancer spread quickly and things took an ugly turn for me quickly, it spread to my bladder and put me into kidney failure.
As a result, I couldn’t have chemo, after dialysis and 2 nephrostomys were inserted, I was transferred 70 miles to Edinburgh to have 30 sessions of radiotherapy and 3 brachytherapy.
I was 39 when I was diagnosed and was plunged straight into menopause!
But I’m still here, 1 nephrostomy down and No measurable disease at my last scan.
I have a 9 year old daughter that I have to be strong for so it’s not an option to lie down to this everyday. Don’t get me wrong, I have my down days where I’m overwhelmed and scared of leaving her.
The forums scared me big time, Google scared me - apparently only 20% survive stage 4 past 5 years. Scary but why can’t I be in the 20% that do.
I’m going back to work if my next round of scans are clear.
For me at the moment, it’s living life 3 months at a time, but considering I’ve almost died twice in the last year, I’m not going anywhere for now. Too much do, too much to see. Xx
Omg Rachael, what an inspiration! You’re so brave. You’re absolutely right, you can be in the 20%!! xx
What a journey you have been on and you are right statistics are just numbers we are all individuals and there is no reason why you can’t stay cancer free treatments are improving all the time.
I have my first appointment with oncologist on Thursday so my journey will be starting soon.
Take care xx
Always here for questions/rants/anything.
It’s tough, but so are you. There’s nothing else for it. X
Thanks I’m sure I’ll have loads!!
Have you got a date for your pet scan yet?
No, nothing yet. I was hoping they would call me this week but no luck. How long did you wait for urs? Have you got a date with oncology yet? xx
I went to get my MRI results on Thursday the 17th June doctor said he would arrange appointment for pet scan. Got pet scan on 30th and went back to hospital for results the next again day.
I have meeting with oncologist on Thursday so hopefully will get treatment plan then.
How are you getting on?
That’s what the Dr said to expect for me, but I was hoping it would be sooner. He said he’d see me on the 15th!
Oh that’s good, hope the appointment goes well.
I’m alright, just taking it one day at a time. Back to work tomorrow after a few days off, I’m hoping that will take my mind off things. How are you doing? xx
I’ve come to terms with it and I just want to get on with the treatment. Physically I’m fine not in any pain or anything. Like you I am just working and trying to keep busy told my boss I will be off for 3/4 months might be less depending on how I get on.
Looks like you’ll be a couple of weeks after me so I’ll be able to fill you in with all the info.
Will let you know how it goes on Thursday.
Take care xxx
Hi I totally understand the negativity vibe that comes from various avenues. I suppose I just wanted to say that it isn’t all negative and in my opinion your journey is personal - it helped me lose the negativity I was surrounded by (sounds weird saying there can be good coming from such a situation like cancer) Today marks my 2 year anniversary of NED following 3b/4a cervical cancer. It’s certainly been a ride full of ups and downs, following chemo, chemorads and then a week of brachy but I’m here and continuing to enjoy life with my husband and 3 children. My onlcologist and medical team are just fantastic and I personally found that the people around you make a big difference. If you need anything or want a chat, feel free to contact me x
Happy 2nd anniversary🥳 your story certainly fits the positive stories brief.
Lovely to hear you are doing well and enjoying time with your family.
Thanks for the offer of help/advice for those of us just starting out on this journey it’s great to know we have women who have come through this and are willing to share their positive stories and help us along the way. XX
Wow, thank you for sharing your positive story! It really has helped so much to hear of so many women who have beat this and are cancer free
Sorry you find yourself in the club none of us want to be in, however you will be glad to know that it most certainly isn’t all doom and gloom.
I was diagnosed stage 1b2 Feb 2020, I had a radical hysterectomy and 25 sessions of radiotherapy. I was honestly expecting it to be a hell of a lot worse than it really was. Don’t get me wrong there were times when it was tough going but on those days I slept A LOT.
I’m just over a year finished treatment now and I’m glad to say my energy levels have returned to normal. I’ve thankfully had no side effects from treatment excluding menopause which has been helped with HRT. I returned to work in January and tbh it kind of feels like it all happened to someone else.
As previous posters said those of us that are doing well now don’t really frequent sites and forums much anymore as we don’t have as much time to in normal everyday life whereas this time last year it was my main hobby. I did get great comfort from those who did pop in to say how good they were doing after which is why I try pop in as much as I can.
Wishing you the very best over the next few months, just take it a day at a time xxx
Thanks for taking the time to come on and share your story. You’re right - it makes sense that those who have recovered are off enjoying their lives again - I hope to be in that group soon!! It’s also good to hear that youve not had much in the way of side effects following your treatment, which has been a worry of mine. I’ve seen a few people saying “life will never be the same” which sounds scary. Thanks again for sharing xx
I haven’t been on this site for a couple of years, maybe more! I popped on today because I have just been discharged from care as it’s now 5 years since my treatment and I wanted to share the news. I found this forum helpful at the time as there were a few others at similar stages of treatment to me, but as others have said, as we recover and move on we stop coming to this forum.
My cancer was picked up after smear, which to my shame was two years overdue. I was fortunate and was staged at 1b1. The worse part of the whole journey was the week between having my MRI and being given the results. Made worse by being told I’d get a phone call on a certain day…then nobody phoned and by the time I called the hospital there was nobody there who could talk to me. So I called back the next morning and the nurse said she didn’t know why I hadn’t had a call and she’d get back to me within half an hour. Three hours later she finally called back, but in that three hours I had convinced myself that the MRI had shown the cancer was much more advanced than expected. During those three hours my husband also took a call from his employer telling him he was being made redundant! It was the worst, most stressful morning ever.
Anyway, when the nurse finally called she confirmed the staging was 1b1 as expected and that my treatment would be a laparoscopic radical hysterectomy, bilatereral salpingetomy with ovarian conservation and bilateral pelvic node dissection (basically full hysterectomy, but leaving my ovaries, and removal of lymph nodes). That it was unlikely that I would need any further treatment such as chemo, depending on whether they found any cancerous cells in my lymph nodes.
The reason I tell this part of the story, is to reassure anyone who experiences delays in care or communication that it doesn’t necessarily mean bad news, though it can be easy to assume the worst.
I had the surgery and as hoped, didn’t need any further treatment. I found the recovery a bit longer and more difficult than I expected and months later was experiencing some pelvic pain, particularly during sex. I had scans but nothing was found and they suspected it was caused by adhesions. It gradually improved and after a year, maybe two, it resolved completely. I also had some numbness down my right leg for a year or so, but that eventually got better.
About 8 months after the surgery I felt shocked at how unfit I’d become so I bit the bullet and got a personal trainer, who I still see twice a week. I’ve improved my diet and try to eat as healthily as possible, without being mad about it. I feel the fittest and most healthy that I’ve ever been.
I was told that even leaving my ovaries, the hysterectomy might bring my menopause forward a little and over the last year or so I’ve been having perimenopausal symptoms (both physical and mental) so spoke to my GP about HRT. Unfortunately the GP gave me incorrect information about this, including telling me that my cancer was hormone receptive which made her reluctant to prescribe HRT - my oncologist confirmed that this is not the case. However, I really don’t trust my GP now so plan to see a menopause specialist privately, which makes me sad and angry. I also plan on putting in a complaint to my GP surgery.
Five years on, looking back on my experience of having cancer, I appreciate how lucky I was that it was early stage and fairly easily treated. I completely acknowledge that this is unfortunately not everyone’s experience. However, I feel weirdly positive about it all. My friends and family were all amazingly supportive, one friend took the day off work to come to my first appointment with me, others cancelled plans to take me to the pub. My son even came dancing with me! I was very open about my diagnosis, I don’t think I could have coped with being secretive or pretending everything was okay when it wasn’t. The response of those around me made me feel very loved.
My advice would be to be open and honest with the people around you and then have minimal contact with anyone who projects negativity onto you.
I hope to give you a little positivity by sharing my story with you…
April 2020- diagnosed with Severe Dyskaryosis after Colposcopy. LLETZ treatment at same time and biopsy sent for testing.
May 2020- biopsy results showed Cervical Cancer and no clear boundaries from the biopsy so further treatment required.
June 2020- second LLETZ treatment to take more of the cervix and remaining Cancer cells. Graded at 1b1.
July 2020- second LLETZ biopsy showed clear boundaries. Lymph node surgery requested to check of any involvement and check pelvis for any other signs of Cancer cells in this area.
August 2020- Lymph nodes removed from groin and sent for checking to see if any Cancer cells in them.
September 2020- Lymph node results cam back clear so no chemotherapy, radiotherapy or hysterectomy needed.
January 2021- 6 month Cancer check all clear and HPV clear too.
February 2021-found out I was 4 weeks pregnant with first child.
Lots of Cervical length checks and extra Obstetrician appointments and I am now 6 months pregnant with my baby due late October/early November.
After the hardest year last year and feeling like my body was failing me, this year had been the year of good news and my body being amazing and doing what i have always wanted!
Please take heart, it is such a difficult journey to be on but there are positive stories out there. I must admit, recently I have avoided the FB groups and this forum as I wanted to put last year behind me and I think other women with similar positive experiences maybe do the same and that explains the lack of positivity in these places.
Please take care and keep supporting each other xxx
The results are in… let the treatment commence
Finally all scans done I have met with oncologist I have been diagnosed with stage 2b grade 1 adenocarcinoma no lymph nodes involved.
Treatment 25 chemo/rads and 3 brachytherapy. Planning scan this Thursday.
My treatment starts on 3 August for 5 weeks