HDR Brachytherapy - terrible pain

Cervical cancer post treatment and side effects
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Dear Friends

I had terrible pain during HDR brachytherapy treatment, enduring four sessions over two weeks in early 2011. Each session was completed within eight hours. When the applicators and packing were removed each time, I felt as though barbed wire was being pulled through my cervix. I was given Oramorph to ease the pain. It didn't work. I wasn't offered any other pain relief even though I was screaming and groaning each time, begging for more painkiller.

I suffered labour-type abdominal pains for the next two years. My oncologist referred me to a pain clinic consultant. She mis-diagnosed plexus nerve damage. My oncologist thought this diagnosis was wrong because nerve damage rarely happens with HDR brachytherapy. Even so, I was given lots of useless medication to treat nerve damage, including a string of different opioids (morphine, methadone, oxycodone and then fentanyl). None of them worked because I had no nerve damage. The pain and the side effects of medication were dreadful. I was very ill and lost my mobility. I had to use a wheelchair to go anywhere. I spent most of each day in bed trying to keep the terrible pain under control. It never stopped and my quality of life was dreadful. 

In January 2013, I asked my GP for a second opinion. In February, I was referred to a consultant in palliative medicine. In May, he diagnosed my condition as pain wind-up and prescribed ketamine. This drug stopped my pain in 15 days! I was lucky. Ketamine works in 50% of patients and I was one of them. I was also prescribed with lorazepam to stop the spasms in my diaphragm and lower abdomen. I'm writing this in August 2013 and, at last, I am becoming pain-free. Whenever the pain starts, I take ketamine to stop it in its tracks.  

All the advice I've read about brachytherapy says it's a bit uncomfortable. However, NICE guidance IPG160 on HDR brachytherapy, says the treatment can be very painful and effective pain relief must ne provided. I think women should be told the truth. Hospital protocols should change so that women who have severe pain, as I did, are offered gas and air or an epidural. I would have had a normal recovery after my treatment if I had been given effective pain relief when I needed it, not just a spoonful of liquid morphine each time.

I worry that other women will experience the same situation if the NICE guidance continues to be ignored. There must be other women like me, enduring post-treatment brachytherapy without a proper diagnosis and effective treatment. Please reply if you have a similar experience.

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Hi ladies

 

Here’s an update to my main post. Yesterday, I finished drafting my formal complaint to the Chief Executive of the hospital where I was treated. I’ve been helped by the free NHS Complaints Independent Advocacy Service. I phoned my local service and got a call back from an Advocate the very next day. I was so delighted. She’s brilliant - really knows her job!

 

My advocate is reading my complaint letter and statement. I’ve asked her to check that I haven't forgotten to ask any key questions. She will support me through the full process if I need her to, like coming to meetings with me when the time comes.

 

My hospital didn’t use recommended good practice when it comes to offering pain relief. I only had Oramorph and I needed Entonox (gas and air) or an epidural. I want to make sure the hospital changes its practice so that no other woman has to suffer as I did during and after HDR brachytherapy.

 

I’ll update this post when there’s something new to add.


CJ

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Hi everyone

I've submitted my formal complaint and it was acknowledged yesterday. Now I'm waiting to see how the hospital will respond.

I had my latest check-up a few weeks ago and told my oncologist that I was making a complaint about the lack of effective pain relief when I had HDR brachytherapy; and about the poor aftercare I had received from the pain clinic. I felt very emotional when I said this to him. He apologised to me because I've had such a bad experience. I know everyone is different but I can't believe that I'm the only woman in this situation, suffering long-term pain after HDR brachytherapy. My oncologist told me that they give epidurals now to all women having this procedure. The team decided it was "too tough" to give the treatment without this type of anaesthesia. The treatment is even harder now that they've changed the type of applicator they use, which delivers radiotherapy at several different targeted points instead of one. At least the new procedure is completed in two sessions instead of four.

I'l give another update when there's something new to say. In the meantime, I'm looking forward to attending my first local Jo's Trust meeting. I'm really excited to know that I'll meet other women who understand what it's like to live with the aftermath of surviving cervical cancer. Smile

 

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My goodness, what an ordeal! Hope you are successful in getoting some satisfaction for yourself and better treatment for those who come after. X

 

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Yes, my goodness. What an ordeal. I agree, I hope you get somewhere with all of this. bless u x

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I've had such a pathetic, defensive response from the hospital. Now I have to take legal action. It's hard work and I have to re-live very bad times as I review letters, my diary and other notes. I want women to get far better aftercare than we do now. That's my goal. If I achieve that, the fight will be worthwhile. At the moment, we're often ignored when we talk to clinicians about post-treatment pain or we're shunted off to the pain clinic sidelines. 

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I know this post was ages ago but I couldn’t read and move on. I am in hospital atm after having my first brachytherapy. I woke up with the same contraction pains which they gave me morphine for but didn’t really help. They put me on a morphine and anti sickness drive (device that gradually administers meds). Then when I had everything removed I was given gas and air which didn’t have any affect to me so they gave me Oramorph and carried on about 2mins after. I felt so embarrassed having all these drugs yet I was screaming! I kept apologising as it’s not like I was going through child labour or anything, but now I think it’s coz I was totally unprepared. My oncology nurse said it would be like removing 10tampons at once. The doctor has said he is going to use small rods and give pain meds sooner but Ive got two more to have (one every Thursday) and to say I’m nervous is an understatement.

I am so sorry that your pain lasted beyond your treatment and wish you all the luck with pursing it. Thank you for taking the time to write on here, I know I’m not the only one who had these pains xx

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Demand an epidural!  I was in for 3 days solid of treatment. They did a practice run on me a few days before and I didn't get one and it was agony. I spent the whole following weekend scared that it would be like that for 3 days when I went in for treatment. When I saw my specialist nurse the night I was admitted for the full procedure she was horrified I hadn't had one first time round. The problem is the anesthesia givers only know to knock you out not to give an epidural too. I had one for the 3 days and whilst I was uncomfortable,  the pain was much better managed.

 

Demand an epidural!!! We are entitled to pain free treatment.

Xxx

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I am in Wolverhampton hospital now just going into second day it is the worst thing I have ever been through! Purely because it’s painful and I am constantly repeating myself telling them I am in pain! I take oral morph and co codamol at home anyway and here they are giving me oral morph and paracetamol Ive done nothing but cry each night I have been here pressing the buzzer every two hours for more oramorph and waking up 10mins later thinking it would be time again but it’s only been 10mins ! 

the nurses over night seem to be scared to come in the room! If I didn’t press my buzzer no one would be in over night to even turn me or check my ops I am so so angry! And in so so much pain !!! Don’t know why they cannot make you more comfortable by giving something stronger at least then the experience wouldn’t be so bad and I might get some sleep in! 

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Hi Caroline, did they ever find out what caused the pain to start with, I read your first article from 2011 and I'm having exactly the same issues. My lower back pain and abdominal pain is excruciating and all I've been told is I have to wait for my scan which is another 2 wks. I've already been in this pain for 5 wks and I don't know how much more I can take. 

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I, too, underwent 4 brachytherapy treatments and will say I prior to experiencing it I couldn’t even FATHOM the excruciating and quite barbaric pain. In all 4 sessions I literally BEGGED them to kill me. I’m not exaggerating. I begged. It felt like giving birth to overdue radio towers surrounded by barbed wire fences and I couldn’t control myself from screaming hysterically.

The experience caused such tremendous pain that, after all therapy was complete, I failed to use the dilators or resume sexual activity which, BTW, I’ve always been highly charged sexually but cannot even bear the thought of letting ANYTHING near my vagina. I knew there was going to be an ongoing issue as when I went to the gynecologist to have the implants removed he couldn’t get even an infant speculum into me without severe pain and he advised to go back to have me put out and have them surgically removed instead. I finally mustered the will to let him get the things out and nothing’s been near my vagina since February of 2020. Not even a follow-up visit as it’s just too traumatic.

My speculation on this brachytherapy business is that the patient is subjected to unnecessary pain because of the chain of events that have to occur before the actual “zapping”, which is only 10 or so minutes, in which multiple levels of medical professionals get involved while patient lays flat on back for 6 or more hours fully awake after coming out of this so called “twilight sleep” for the “surgical procedure” of inserting the applicators. It should be far more organized and all done in synchronicity, while patient still in this “twilight sleep” without many hours of waiting in between.

While I’m grateful that the brachytherapy afforded my cancer to be cured without the addition of chemo (which I’d NEVER undergo), I can honestly say I’ve very serious doubts that I’d undergo it again if circumstances of procedure were identical. It needs to be done while patient is OUT!

It seems to me that the CT scan could be done, analyzed, and the zap happen in a much more organized manner. I went into OR at 7:00 am, out by 8:00; recovery until 10:30; CT scan took another hour-ish (to move me to THAT department and do scan); then lay flat until 3:30 when I’d get zapped.

The doctors and staff kept insisting that brachytherapy procedure wasn’t “surgery” and that “twilight sleep” wasn’t a big deal so WHY such a big fuss? That is, forcing me to get someone to take me there, sit with me the WHOLE time, drive me home, stay with me all night, etc., etc. I should mention I’m a VERY private individual and have NO family or support system so didn’t WANT to make it anyone’s business. I told them I’d prefer not to be put under if it’s as simple as they say. They refused. I quickly found out why…it’s the most painful thing one could experience as a hospital procedure so they want the patient OUT during insertion of applicators but they don’t seem to care about the removal of applicators.

It is NOT a “surgery” as they keep calling it. I brought that up numerous times and the response was, “any invasive procedure where something is being removed or inserted is a surgery that requires general anesthesia or twilight sleep”. Well, I’m no medical professional but I do not undergo general anesthesia every time, or even upon occasion, that something’s been merely inserted into my vagina! They should just plain say, “the insertion is extremely painful and cannot be done without general anesthesia”, PERIOD. I believe they think we are stupid or something. And furthermore, they go on and on about how this “twilight sleep” isn’t general anesthesia and is so very safe. I suppose that’s why all the drama with the anesthesiologist over which drugs caused my to dream martians, unicorns, and rocketships while “twilight sleeping” and if it’s SO inconsequential WHY not give another dose when removing the applicators???

I’m semi-convinced that had I not experienced so much pain that my vagina would not now be 'closed to visitors of ANY kind". Could be combination of psychological aspect AND the fact that I, who previously was practically a nymphomaniac with my [then] boyfriend, refused to use the dilators and estrogen. Couldn’t get even my finger in.

Most painful thing humanly imaginable.

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EDIT/ADDITION to my post directly above:

My diagnosis was clerical cancer 1B2 confined. I insisted on hysterectomy but was refused. To this day I regret not having sought out surgeon to do it. I was a DES baby (Diethylstilbestrol) so KNEW female cancer would get me eventually. To EXPOUND on THAT, I became quite a “sofa expert” in reading scans and interpreting narratives and the diagnosis SHOULD have been cancer of UTERUS extended to cervix. WHY is this so important? Because of the CAUSE of it, the DES. I was stunned when they insisted that the HPV virus was present as I’ve NEVER had an STD, wasn’t sexually active for ten entire years prior to this diagnosis (except for the boyfriend I’d JUST started seeing months earlier) and full range STD tests were run and clear after my previous boyfriend and I broke up due to my learning of his buffet style sexual life. Can’t figure out HOW HPV pops up out of nowhere at 58 years old and the diagnosis favors HPV as cause of cervical cancer when the scans, narratives, and my history all indicate DES and origin of the cancer in uterus, NOT cervix.

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Dear CMGJones,

I am a pretty new member of this forum, and I’ve just come across your post because someone else has commented. I am wondering how you are and what the outcome has been of your fight for justice - your last post was in 2013 and we’re now 8 years on.

I had brachytherapy, along with radiotherapy and chemotherapy. The procedure was a little different - perhaps even because of cases like yours. Of course hospitals might be different in the details of the techniques they use. It is a barbaric thing to do to anyone who is not under a GA. I am so sorry you were traumatised in this way. Apart from developing sepsis after the treatment, I have not suffered long term pain. I am just hoping now that 8 years on you are better. If you can let us know how things have been for you it would be great.

Jackie

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As you can see I’ve just come across this thread. I too had brachytherapy, as the final part of the course that included radiotherapy and chemotherapy. It is a barbaric thing to do to anyone who is conscious; of course it is also effective, and I am now classified as ‘NED’ whereas before the brachytherapy they could still see the primary tumour. The procedure itself is effective, but the pain management is not.

I was lucky to be out for the setup - this was standard in our hospital. Because of an allergy to lidocaine I was given a GA for the insertion, instead of an epidural. We were kept as inpatients for the treatments, had to lie flat on our backs for 3 days with the rods coming out of our vaginas and a catheter inserted, wheeled to treatment rooms for the linking of the radiotherapy device and CT scans to check the positioning, and then after the last treatment the ‘apparatus’ removed by the brachytherapy team without anaesthetic. It was agony. The pulling out of the packing material (yards, it felt like) the disk and finally rods - it is a totally disgusting thing to do to someone who is awake and alert. I too found myself apologising for screaming - but why should we? Surely we should not be subject to torturous procedures that can cause such pain. I am allergic to morphine but other patients were given a morphine drip. I was on a ketamine drip, but only a minute amount every five minutes, if you pressed a button. This was provided to keep you from being in pain during the three days with the insertions. The trouble was that if you fell asleep you could not press the button, so after about 1.5 hours you were woken up by the pain, and then it took about 30 minutes of ‘clicking’ to alleviate it. This drip was removed immediately after removal of the apparatus. I was taken to the ward and pain started. Calling the nurse, she seemed surprised I was complaining of pain, and asked what was hurting. I said it was like period cramping. Paracetamol was given. The whole area was swollen and bulging, I was incontinent and peeing every time I tried to drink, and pain with peeing, etc. After 10 days I was admitted to a local hospital with sepsis from a urinary infection.

For a month afterwards I couldn’t get the experience out of my mind, and couldn’t bear the thought of wearing the clothes I’d warn to the hospital. I think many of us are actually traumatised by the whole experience. It is brutal… Before the event I was told there would be gas and air for the removal if you wanted it, but there was no facility for this at all. No-one prepares you for this treatment. Don’t get me wrong - I’m grateful for the positive effects, but the pain management is totally unacceptable.

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I’m traumatized to the point that I won’t allow sex anymore and fear having ANYTHING go near my vagina. It’s just absolutely destroyed me for a man or any kind of a sex life.

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I’m so sorry to hear this, Kat. I’m also shocked that you had to go in and out of hospital for the brachytherapy. Did you have a hysterectomy first? In my hospital if you had a hysterectomy you came in on a day basis and had something inserted into your vagina and removed again after the treatment. I did not have a hysterectomy, so I was an inpatient for 3 days, and the apparatus was inserted into the womb through the cervix (rods and a ‘cap’ thing) under GA. It was not possible to remove it between treatments, as the rods and stuff had to be packed into place with wadding, so that they did not move. That’s why I had to lie on my back for three days without moving from the waist down, with a catheter. To make sure we didn’t open our bowels I ate only plain yoghurt, and a small amount - mind you I was not hungry!! The insertion under GA was okay, but after the treatment they just ripped it all out without the anaesthetic - rods from the womb and all. I can’t understand why more people don’t complain about this barbaric treatment! It works, in killing the cancer, it’s the trauma of having this happen when you’re awake that I cannot understand.

Sounds like you need some trauma therapy, and I’m so sorry no-one helped you. It’s disgraceful. X

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OMG I am having this as part of my treatment and I must admit it is the area that concerns me the most. At my hospital they put you out and place the rods in then give you one session this is on a Friday then they remove the rods no anesthetic then you go home.
You return on the Tuesday and they put you out and place the rods back in then you have another treatment you are kept in over night with rods in place then another treatment is given on the Wednesday then the rods removed again no anesthetic. So you have to go through removal twice!!

Very worried :worried:

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Have you had a hysterectomy, AMF? The treatment is a little different in different hospitals - it sounds like you have not, as you’re going to be an inpatient. The actual process itself is not bad - it’s the removal that is glossed over…. I would have a word with your contact and, if you know that you’re sensitive to pain (some people can tolerate these processes well, so I’m told) ask for a proper anaesthetic to be arranged for the removal. I hope all goes well for you. X

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Hi Jack’s,

No I’m not having a hysterectomy. My planning scan is on Thursday and treatment will start around 10 days later.
I was given a booklet on brachytherapy and how the hospital carry out the procedure. To be honest it sounds horrific and because they carry it out at the end of the radiotherapy and chemo treatment I imagine that the pain must be awful as the whole insides are going to be red raw after all that radiation.
I will speak with them nearer the time, in this day and age there is no need to put anyone through pain if it can be avoided.
šIt annoys me because if this was happening to men there would be an outcry!!

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Hi AMF,

There is another thread I’ve found - “Brachytherapy in-patient” that has a lot of positive stories, to encourage you that not everyone has a really bad time. One thing that struck me on this thread was the attention to pain killing meds - and this looks like the key! Several people have said they had gas and air, and one said she really didn’t notice the removal with the gas and air. I was told this would be available for me, but it was not. This is the key, I think - making sure the facilities are there to give proper pain relief. Xx