Hi i was diagnosed as a stage 2a cervical cancer. Hpv related
This diagnosis completely floored me as it certainly wasn't expected after I attended for a colposcopy.
I then had a ct scan which luckily was ok. The wait for my plan was just awful, telling the children was the worst.
I had 25 radio and 5 cisplatins. The side effects that I experienced I guess all manageable and I hoped not permanent.
Tiredness and a really unusual sleep pattern. I guess that was the dexamethasone. Bloatedness ,nausea, heart burn,loose stools,constipation,headache, change in appetite,urine infection,thrush.
I started to feel a bit more normal when all my sessions were done. Which was a relief as I didn't have to go to any appointments. After about 2 weeks then I went for PDR Brachytherapy.
Well this was the treatment that I was most scared about.
I won't lie I found it all horrendously painful and traumatic.
I knew it was a crucial part of my plan and I managed to complete it.
So now 2 weeks on I am coming to terms and trying to get my head around what have just been through.
My side effects from Brachytherapy when at home were generally body stiffness and soreness. Pelvic discomfort and loose stools. Back ache
I have rested well and I am now beginning to be more active however I am aware that this will take time.
My next issues are the dilators which i am dreading and also now the worry of did my treatment work and all the uncertainty of the future.
I am grateful that they found it when they did and that i was able to complete all my treatment.
I read these post during my treatment so maybe mine may help some one else.
Hi 4paws welcome to the forum and jeezo you have been through the mill, that's for sure. I dont know enough about all that has happened for you to support you as best as any of us can, but I know that this will bump your post onto the thread. Lots of lovely folks there who I'm sure will pop on for a chat and also to thank you for sharing your story as you say yourself this can be of help for others so thank you for sharing this with us.
Sending some hugs your way for now.
Hi 4paws and welcome to our group.
I’m glad to read that you have successfully completed your treatment and are recovering now-it can take a bit of time to fully recover from the effects of this treatment as it’s so intense, but you just need to look after yourself and gradually get yourself back to how you were before.
I notice you are dreading the dilators but try not to worry about these too much in advance as it’s better to be relaxed when you try to use them. I was given mine to start using before my treatment ended, and they are a bit daunting when you see the set! They are important post treatment to help with keeping everything open inside to make future internal examinations easier, as pelvic radiotherapy can cause issues with this. I never managed to use the biggest size, and this was ok. I used plenty of lube and relaxed as much as I could and found them straightforward. You need to be gentle and use a circling motion from side to side to get the most benefit-don’t just stick it in and leave it there! I tried to use them every few days, but if you are in a sexual relationship you might not need to use them like this. The nhs issue dilators are rigid plastic, but you can buy silicone ones which you may feel more comfortable with.
You should have a check up around 6 weeks after treatment is finished with, where you will have a chat and an internal examination, and a follow up mri scan around 3 months after treatment. We all have a bit of anxiety around these checks and finding out if treatment has been successful, but the hope is to get a Ned result (no evidence of disease).
Thank you for sharing your story with us-I hope you’ll stay in the group and let us know how you get on. There is always support here, and help for you going forward.
Sarah xx
Hi 4paws
Have just found your post whilst searching cisplatin on here. I’m currently 9 days into treatment, the same plan as yours. - 25 radio with 5 cisplatins to be followed by 2 brachytherapies
I was diagnosed with 2b adeno carcinoma of the the cervix at the beginning of August after a total hysterectomy to remove what was thought to be a large, benign ovarian cyst.
The cancer was an incidental find when tissue was sent for routine testing after my surgery. It was very high up in the cervix so hadn’t been picked up by my regular smear tests. It also hadn’t shown on the ct scan I’d had pre op so was a complete shock to everyone.
It had spread to my left ovary but thankfully I’ve had a clear pet scan which showed no further spread. Because of the aggressive nature of the cancrer, I was told this treatment was the best course of action to ‘mop up’ any microscopic cells that may not have shown on the pet scan and to give me the best chance of it not returning.
At the moment I’m feeling pretty awful so it’s nice to read that someone has made it through. I honestly don’t know how I’m going to cope for another 3 weeks. I’m so disappointed with myself, I thought I’d be tougher than this!
I feel slightly nauseous most of the time and have an odd, unpleasant taste in my mouth. I’m suffering with a funny head not particularly headaches just not thinking clearly and also feel a bit woozy/ unbalanced, It’s almost like I’m hungover. I feel toxic. Because of the hysterectomy I’m now having hot sweats which wake me in the night every few hours. The poor sleep is really beginning to drain me. It’s a round trip of about 5 hours to and from the hospital every day and I just feel exhausted and sick of it all already. I feel so pathetic when I think of the far worse treatments some are going through, it’s only 5 weeks for me fgs, but I’m finding it so hard.
Thank you for sharing your experience and giving me hope that I can do this.
Best of luck with your recovery. X
Hi Colliemum and welcome to our group.
It must have been such a shock for you to have this diagnosis after you’d already been through a hysterectomy and then have to start treatment you weren’t expecting to go through.
I had stage 2b adenocarcinoma too, but it was diagnosed at the outset from my biopsies. I went through 32 radiotherapy treatments (I wasn’t able to have brachytherapy so had more than my planned 25) and 4 Cisplatin ( my bloods weren’t good enough to have my planned 5th session).
Lots of us have been through this treatment and come out the other side, so I hope that gives you hope you can get through. My treatment finished almost 6 years ago.
At times during the treatment I thought I couldn’t go on with it because I was just exhausted and from week 3 I started with cystitis and diarrhoea, but I did get medication prescribed to help with both of these. I had a round trip of 3 plus hours every day to the hospital, sometimes longer with traffic and that in itself was tiring.
However, I kept going, and my side effects were gone within a couple of weeks of the treatment finishing. But it will be even harder for you having been forced into menopause and having that to contend with too.
I see you are a member of the ovarian cancer group, but you might want to join this group too so that you can make your own posts if you’d like to. Without being a member you can only reply to others.
I wish you well with the remainder of your treatment, and feel free to ask anything as you go along from those of us who have been through it.
Sarah xx
Hi colliemum
Thanks you for your reply.
I really feel for you as I only had a 2 to 3 hour round trip every day and obviously a full day for my chemo.
I was really lucky also as I had lifts so didn't have to drive myself. I really appreciated these offers, although I still felt guilty for being taken to my appointments.
I also feel that I was lucky as I didn't have any caring responsibilities so didn't have to do anything if I didn't want to.
I looked forward to the weekend as I didn't have to leave the house.
On all my days I felt different so you can't plan anything. I just struggled having to drink so much as I'm not a big drinker
I also wasn't recovering from a hysterectomy and sudden menopause like you are.
5 weeks seemed like for ever but it passed and I'm beginning to process it all yes it's traumatic but I wasn't going to give up. I just have to wait now to see if the cancer has gone.
You got this , you are tougher than you think.
Let people around you help. You have to relinquish some control and i found that extremely hard.i kind of learnt how to be selfish and put me first which is not what I'm used to doing.
Best wishes
Hi just an update
I got my mri results and I have had a complete response. I'm so relieved but now I'm worrying about reaccurance and the uncertainty of it all.
Side effects that I have are minimal thankfully, loose stools and going more often but I take occasional tablets for that. A small vaginal prolapse which i have an awareness off but hopefully will get used to that. A stiff back and pelvis but trying pilates for this. Then finally worry and stress of recurrence and what I need to be worried or not worried about, but having counselling for that to try and get it all sorted in my head.
People around me think it's all done and dusted but we all know that is not what happens in reality.
But on a positive note I'm cancer free as far as medical establishment are concerned which is a lovely early Christmas present and I'm going back to work in January and having a lovely sunny holiday in March.
I will have 3 monthly check ups which gives me reassurance that I'm ok then on the other hand I think that's a keen follow up so I know they have early reaccurances, so this is one of the things I need to put into perspective.
Wishing you all a happy Christmas and new year.
Hi again 4paws and thanks for coming back with your update.
It’s great news that you’ve had such a good result from treatment, and I’m sure that will encourage other ladies reading posts in the group.
The initial follow up appointments are reassuring, but I’d encourage you to make sure they are in person rather than over the phone so you actually see a member of staff and get an examination.
I didn’t have any symptoms of recurrence like pain or bleeding, so my check up 9 months after treatment ended was crucial for me when something was spotted on my cervix. I’m glad I was seen in person, otherwise I would not have known there was anything wrong.
i think it’s difficult not to fear recurrence, and I don’t know anyone who has been through cancer who doesn’t worry at some level about it coming back. However, you can adjust to life post cancer and counselling can be really helpful for that.
I am six years out from my original treatment in 2018, and my recurrence happened in October 2019, so it seems a long time ago now. I don’t spend time now worrying about recurrence-I’d rather concentrate on enjoying my life as best I can. Try not to let fear of recurrence dominate your mind-lots of ladies move on from the forum after treatment as they don’t want to be reminded about what they went through and they are doing well now- this treatment can be very successful.
You’ve had the best present with your results, so enjoy Christmas and the new year, and look forward to a happy and healthy 2025.
Sarah xx
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