I have just completed 7 weeks of treatment, five weeks of radiotherapy every day and then chemo once a week as well. This then followed by two separate brachytherapy sessions with an overnight stays in hospital.
I have two questions really.
why is there limited information on what brachytherapy is really like? I struggled to get some actual patient side details. Luckily my friend is a cancer nurse (not cervical) and found out some information. This enabled me to be more vocal on what I wanted to have happen and helped me take control of a truly awful procedure. I ensured total sedative for the upfront part of placing the rods, so fully not aware of what was going on - pre spinal block. This is not offered as standard process which I am shocked about! Also I insisted on a sedative when removing the rods as gas and air really is not enough.
having finished the treatments, I have an appointment with my doctor 17/3 where i assumed I would know results but I don’t think that is the case as no scans arranged. When should I expect to know?
Thank you in advance:-)
Well done for completing your treatment! Regarding brachytherapy, I cannot agree more on this! Initially I was given a leaflet on stating that the treatment is just uncomfortable and not painful! Which technically you might assume is correct as the brachytherapy itself is not painful… however, inserting the rods, having them in place for more than a day, moving you around for the MRI and CT scans and removing them … the pain is just unbearable without sedation! For me I describe my experience as middle evil torture… you were so lucky that you have a nurse to advise you… I wasn’t prepared at all and I wasn’t so vocal… when they removed them, there was no nurse available to assist and provide me with painkillers so I only had the gas which was a joke! Luckily we put this behind us. Regarding my first 3 months appointment post treatment , I remember I had an MRI and CT scan which was unclear then I had to wait for another 3 months for the scans to show NED. I have read in the forum that some doctors they are doing scans at 6 months post treatment as the radiation keeps working in your body after treatment so early results might not be accurate. I hope all the best!!
Exactly what I said, barbaric medieval torture. They really need to address this, after speaking to another nurse she said a few people had suffered PTSD following this treatment.not wanting to scare anyone but prepare them with the tools to ensure they get the correct sedation/support etc.
My experience of brachytherapy is very different, prior to the treatment i read many posts with varying opinions however i would say the majority found it difficult. So when my time came i had prepared myself for an awful experience.
But in actual fact it was fine got GA to put rods in woke up no pain had no pain when the rods were removed didnt have any pain relief. The worst part was lying still, the longest period was 36 hours and this wasn’t pleasant but doable.
Had no bladder or bowel issues went home felt tired but the next day was fine.
After reading all the different experiences i dont know why some have terrible pain and others are fine, i suppose it just comes down to we are all individuals and our experiences are all unique. But those who do find it painful should receive adequate pain relief and all women should be supported through the experience. Its very sad when women say they were ignored, didn’t know what was going on and they were basically left to get on with it. This is not acceptable in this day and age.
I had scan 8 weeks after brachytherapy this showed tumour had reduced but still.present. will be scanned again in March 5 months post treatment.
Well done in completing treatment!
Im sorry your experience wasnt a good one.
Im pleased to say my brachytherapy sessions were absolutely fine. I had spinal block, sedation, gas and air etc etc. I was also well informed before hand (week before)of every step that would be taken. I was also kept well topped up on pain medication.
I had a phone appointment 6 weeks after completion of treatment just tocheck how things were with me.
My next step is an MRI next week which will be 3 months after end of treatment. I assume ill have either a phonecall or a face to face appointment afterward to discuss that MRI.
You were asleep for placement of rods, this isn’t always the case. I wasn’t offered that up front, just a spinal block. I had heard that it is traumatic to be awake so had to really push for sedation.
The treatment was fine, the removal of rods was horrific for me.
I am glad you had a better experience really good to hear! Hope it all works out ok x
It is true that some people strangling and other not! It would be very useful if there was research around this to understand what triggers the pain. You were very lucky that you didn’t experience any pain. For me it wasn’t the case, they inserted the rods under GA but when I woke up the pain was unbearable, for me it looked like the medications didn’t have significant effect. I think from scientific point of view it would be very interesting to understand why there are so diverse experiences with the brachytherapy so do people experience pain to be better managed.
I think with so many gynaecological procedures they dont seem to focus on the pain management. Even the lack of pain relief with a colposcopy.
Hi Maria and @Loudavies i couldn’t agree more. When you look at the whole treatment process there is a huge range symptoms. Some suffer terribly with sickness, bowel/bladder issues, pain and at the other end some are affected very mildy then there’s everything in between. This makes preparing yourself very difficult as you have no idea where you will be.
However no matter where you are on the scale you should be able to access the correct medication and specialists to ensure that any symptoms are dealt with quickly and effectively.
Then you have those who are still suffering the effects of treatment years later and again those who have suffered no long term effects.
It really is a minefield which does need more research to try and find the answers.
Take care xx
My experience with brachytherapy was mixed, and might be due to it being a little different where I live. I was put out under GA for insertion then spent three full days in the hospital with radiation being fired hourly for a total of 56 zaps. Although not moving much for the three days was hard, the nurses were great - I had a pain management routine that seemed to work for me. My experience with the removal was terrible - I wish I had been put under again. Even with pain medication and Xanax, I found the unpacking of the gauze to be incredibly painful. Luckily it didn’t last long and I am on the road to recovery. I agree that pain management for women’s issues needs to be advocated for and addressed.
Wishing you all the best with your three month scan - that sounds pretty standard. I just received my date for follow up exam and results with my oncologist in April, just waiting to find out when exactly my scans will take place.
Hi, I’ve been out of hospital a week now after my 3rd and 4th brachy. Can anyone advise how long it’s took them before they are feeling semi normal again ie able to get up and go out etc? My first and 2nd brachy was fine with sedation (although I was still chatting away to nurses etc) and spinal. But uncomfortable through the night and removal was fine with just painkillers. The second hospital stay didn’t go as well unfortunately I was in a lot of pain with my back but I managed it and again done the removal with just painkillers etc. but since I’ve been out I’ve struggled and been in bed for a week, I don’t know if I’m being hard on myself but I just want back to normal now. X
I was advised of my options of GA or spinal, sedation etc I asked for their recommendation and they said spinal as it helps with pain for a few hours after as your still numb. Reading that some wasn’t informed of this I now feel quite lucky that I was but it should be the same for everyone. X
Hi I am two weeks post brachytherapy and just starting to recover. Radiation cystitis is subsiding and I have some increased energy although still fatigued most of the time. Thanks for sharing your experience, it further show’s how different the advice is.
Steffi, When I came out of hospital after brachytherapy I was advised that I would feel worse before I felt better. I too was bed bound with exhaustion and cystitis symptoms. After about 10 days I realised that I was starting a fever and my CNS said go to A&E. I had sepsis. LIke Loudavies, I found it took a long time to recover. I also found the removal procedure barbaric. Hoping you both are feeling better soon, and don’t be afraid to call your CNS if you’re at all worried. X
No one gave me any indication that I would even feel unwell at all. @Jacks133 was it urself who had an appointment today. I know someone I’ve spoke to lots on here had an appointment on the 16th but I can’t remember who. I blame the brain fog lol. X
I was told it would get worse before it got better, two weeks in and starting to feel better. Hope you feel better soon x
Glad to hear it’s easing for you. I’m now 1 week down so hopefully be on my feet next week. Xx
Initially I was told about spinal sedation but unfortunately my blood results weren’t good enough for it so they did GA.
@Jacks133 i can’t agree more on the removal it is by far one of my worst experiences. Luckily for me after treatment as my blood results were not good, they keep me in the hospital for a week and I had 2 blood transfusions which made me feel much better afterwords! I recovered pretty quickly after that.
I also had blood transfusions, the removal was by far the worse bit and second time around I insisted on some sedatives to help, the gas and air does not really touch the pain.
I had an appointment on Monday for my 1 year scan - a few days early as I finished treatment on the 19th Feb 2021. Well remembered - how clever of you. I don’t get the results until the 22nd March so it’s pointless thinking about it until then. Xxx