I've lurked around the forum since February time when I was diagnosed with cervical squamous cell carcinoma grade 3, stage 2b.
Since then I've found some really useful posts and the forum is full of practical information so I thought I'd add my 2p!
I started treatment on 29th March and had my final brachytherapy yesterday. I have had 5 rounds of cisplatin chemotherapy, 28 sessions of external radiotherapy and 3 sessions of HDR brachytherapy.
My side effects have been (thankfully) minimal. The chemo made me mildly nauseous but some really good antiemetics from my clinical team sorted this quickly. To be honest the worst thing about the chemo was the 6.5hrs the infusion took.
The radiotherapy was absolutely fine until after session 20. By this point my energy levels were through the floor and I found that bladder prep was a real struggle. My gut motility had decreased so even though I was drinking loads it was taking a long time to fill my bladder. My radiotherapy team were excellent and really understanding about this. They didn't put me under any pressure and very gently got me through the whole 28 sessions. I drove myself to every radiotherapy apart from the last 4. I had some radiotherapy burns to my vulva and urethra towards the end of treatment. This made peeing very sore. The radiotherapy nurses provided me with barrier creams and wipes to help everything heal. their best piece of advice was to keep drinking to keep my urine dilute as it stings less. Everything down below was healed after 10 days.
I did struggle with my bowels but only a little compared with others. I've had 3 bouts of diarrhoea that cleared very quickly with loperamide. Mostly I've been struggling with constipation. I take a product called lepicol daily and this has really helped.
So, the brachytherapy therapy. I am not going to lie, I was so scared of this. I didn't think about it at all until the week before I was due to start. My hospital does brachy as a day procedure under spinal anaesthesia. The spinal anaesthesia worked very well for me except for the first day when there was a 1.5hr delay in my treatment and my spinal wore off. The pain reached about 7/10 for me despite IV paracetamol, codeine and extra morphine. In the end the anaesthetist had to re-sedate me. I will hold my hands up now and say this was really very unpleasant but part of it was my fault for thinking I could brave it out without the extra pain relief. Don't do this. As soon as you are even a tiny bit uncomfortable let the nurses know and they will give you additional pain killers. My next two sessions of brachytherapy were completely pain free. Honestly, not even a twinge when the applicators were removed.
I had a MRI prior to my brachytherapy which showed a really good response to just the chemo and external rads so hopefully the brachy will have destroyed the rest of the b**tard cancer and any little lurking cells.
My oncology team were very keen to stress that they see this treatment as curative for me and I am taking this positive message forward with me as I look towards my first post treatment scan in August.
It's so unfair that we find ourselves here but there are treatment options and it is doable.
Thanks you for sharing your experience. I’ve got my oncology appointment next week and I will be having the same as you, I’m stage 3 as well with lymph nodes affected.
It’s such a scary process to have to have chemo and radiotherapy - I’m not going to lie, I am absolutely dreading it! Would rather have a hysterectomy and lymph nodes removed. But that isn’t the best course of action (I have no clue why).
I’ve been researching non stop for the after effects of chemorads! And my head has been going in overdrive. I’m single and 36 years old and have already decided having to go through all of this has ended my chances of having a normal relationship moving forward… My whole life plan has changed since I found out that I have cc.! And it sucks…!
Sorry to hear you’re in the Stage 3 club. I just want to reassure you that you are having the gold standard treatment, as far as treatment goes, and explain briefly why you can’t have a hysterectomy and lymph node removal.
Because of the size and spread of your cancer (and particularly because it’s already spread into your body) you have to be treated systemically - the whole body - because they don’t know where microscopic cancers may be brewing. Also doing an operation once it has spread is extremely risky. By damaging and cutting in the area it’s possible for a few cells or more to move into surrounding tissues. Once there, they will grow. We have sadly had a number of ladies on the forum who had a radical hysterectomy op only to find they then had to go through chemo and radiotherapy, because it had spread or it wasn’t clear they’d got all the cancer. I too was shocked when I though I would have an op and I had to go through chemo and radiation, but once I understood I was actually grateful. Yes, there are side effects, but there are side effects from lymph node removal as well - the chances of getting lymphoedema are much higher for node removal than rads, and it’s a life long condition in most cases.
Be brave. You will have a life after treatment. There is no reason why you can’t have a normal relationship either. You will find a number of ladies going through the same treatment at the moment - look at the thread ‘Treatment Buddies’. From your previous posts you (like me) have already had multiple LLETZ procedures. This isn’t going to go away and your best chance of kicking it out of your body and making a full recovery is chemorads. ((Big hug)) xx
Thanks so much for this post - I was diagnosed with stage 3 myself in March and will be starting the same treatment as you shortly. It was so useful to read your experience and how you found everything.
I was so happy to read your first MRI was positive and will keep everything crossed that the one in August shows you have won the fight.
Thank you!.. I have so many questions - I am literally doing all the research under the sun and reading through the forum literally has been great, all the advise has been brilliant! xx
Hi Bonita
I’m 55 and Just finished my chemorads and had my first brachytherapy yesterday. Please do not be nervous or scared, my experience has been fantastic easily manageable side effects, nothing dramatic. You sound positive and proactive, combine that with good physical fitness at the start, you will ace it and be proud of yourself. As for life after, there’s lots of advice guidance and schoolgirl giggling to be had!
Good luck
Thank you for the reassurance!
And super glad to hear that your treatment went well with little side effects… Hope your bracky sessions goes smoothly and you have a ton of support! You’re in my thoughts xx
