For those of you interested in this procedure as an alternative to surgery I thought I should share my experience.
Before that however please take all the info that I provide with a touch of salt. Each case might be different and my facts may be wrong or they could change as more evidence is corroborated.
I had my nodule for many years and despite it being benign (and cystic) it kept on getting larger to the point where my ENT recommended surgery. I agreed that something needed to be done because each time they were aspirating it I could notice being able to swallow easier but was reluctant on surgery.
My ENT is considered to be an excellent surgeon and I would have trusted him to be my surgeon, yet I was a bit disappointed with him as he didn’t know enough about RFA and I had to do my own research and to advocate for this. Very few ENTs know about the procedure at the moment plus I doubt that there would be capacity for all the potential patients.
I was told that at this point only 3 centres in the UK are performing the procedure and at UCLH they treated 44 patients so far. They also think that it could become standard treatment for benign nodules instead of surgery especially given that on the long run this could be a cheaper option for the NHS compared to surgery.
Yesterday I had the RFA procedure done at UCLH and so far I am thrilled with my decision.
There are possible side effects, of course, some more common others just theoretical so far but overall from what I gathered it fares better than surgery. The most appealing thing for me was the fact that with this procedure, it is much more likely that the thyroid’s functions are not affected therefore there’s no need for thyroxin for the rest of the life.
The team there was fantastic, and the procedure was not the terrifying experience I was expecting. I was scared up to the point where the first ablation happened and then I instantly relaxed because it wasn’t painful. There was very little pain in my case. I think they inject the minimum necessary amount of local aesthetic because at some point it became painful so I told them and they immediately injected more so the pain went away. I could feel at times the probe moving in my nodule, some jaw pressure and the popping of the tissue under the probe’s heat I suppose, but even if it sounds weird I actually liked that sensation (like bubble wrap being popped next to your skin).
After 30 minutes in recovery I was able to go home and I could eat normally. For the next 5-6 hours I noticed that the area was slightly puffy and I did experienced some pain and although I have no idea how it compares with that of other people that had the procedure I didn’t need pain killers, just an ice pack. I talked a lot after the procedure, which probably wasn’t the best idea because at times my voice was getting slightly hoarse. I woke up today however with zero pain (unless I poke it of course) and less puffiness so I hope things will stay like this. The worst risk that I have at the moment is that of an infection but all seems good now.
The nodule should shrink. In some cases a second procedure is needed to bring it to the desired size. They told me that in my case they hope it will shrink by up to 60% in a month but we’ll see. As this progresses, I will update this thread.
Hope someone finds this useful.
UPDATE (1 month)
Hi, I had my 1 month appointment this week. The nodule has already had a 86% volume reduction. Initially it was 2 x 3.6 x 4 cm and now is 1 x 1.7 x 2.4 cm.
Apparently, in my case, the procedure was particularly successful because the nodule was mostly cystic so the ablation prevented it from reaccumulating liquid. But not to raise anyone’s expectations too high, I think I should mention that they told me that, of all the patients that they treated so far, I had the most significant reduction and that most of the other patients achieved only an up to 50% reduction by their 1 month assessment.
I will have another follow up appointment at some point in the future. Don’t know exactly when, haha! I was so chuffed to hear the great news, I didn’t pay attention when the consultant told me in how many months they will want to see me again. I think he said 6 months but I’ll know for sure when I receive my appointment letter by post.
In terms of how my neck feels now, I can really say I am thrilled! I can hardly see the nodule anymore, only a bit when I swallow. So from an aesthetic point of view I am very happy, even if it doesn’t get any smaller, although I really hope it will get even smaller. Another major thing is that I don’t feel my skin being pulled by the nodule each time I swallow and when I’m resting my chin against my chest I don’t feel the nodule being squished anymore.
When I touch the spot where the nodule was/is, the tissue under the skin feels hard, much harder than my initial nodule, and less elastic – basically if I try and press on it, it does not squish at all whereas before it did a bit. The thing is however, that I can feel this difference only when I prod the nodule and I am not aware of it otherwise plus the consultant assured me it will gradually feel like normal tissue again. Even if it won’t, I don’t really care because either living with a large nodule or a surgery scar on the skin would have been a lot worse.
This is it so far. I'll do my best and try and remember to update this again after my next appointment although not sure if there is much point to it, given my current happy-ending status. All the best!
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anma
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Thanks for posting this lovely description, it will be very helpful in the future. When things have settled down and you are able to judge the longer term outcome it might be an idea to pass your comments onto the hospital, it sounds like the type of article they would like to give to prospective patients.
Thank you as well for your kind words and yes, I will no doubt write them a review and place it in their comments box at some point soon. If not for any other use, then just to thank them, it all happened so quickly yesterday I didn’t even find the right time to thank them properly. It was my first time in a room that pretty much looked like an operation theatre. It all felt like I got kidnapped by aliens ( good aliens that is) and by the time I realised it’s all over, the doctor was gone already, as well as half of the staff, haha.
Dear Anma ... you have described it all perfectly. For others that don’t know I also had my two quite large goitres blasted by RFA yesterday. I also was well enough to take a train home which was about 70 miles away only an hour later. I would agree with everything Anma has written and feel that I was in good hands yesterday. My neck was sore after the treatment yesterday but my voice was and is unaffected. Today I’m taking it easy and just doing easy jobs at home. I’ve only really needed to take paracetamol on the evening after treatment to soothe my neck. Today I’m very pleased and comfortable. Certainly I would recommend RFA.
Thanks for posting and I would be very interested in hearing how you progress with this treatment.
Take care of yourself and I hoipe all goes well for you.
Carole
I have found this very interesting and informative. My ENT today painted a very bleak picture regarding the procedure, so thank you. Definitely looking into having it done.
Glad it helps, if you decide to explore this option further ask for a referral with one of the teams performing the RFA procedure and they will give you the most accurate description. That should help you decide which option to choose.
My ENT told me that RFA is riskier than surgery which I knew already was not true from reading peer reviewed and other official medical stuff so that was a red flag for me that he wasn’t very well informed. I’d be curious what your ENTs comments were.
Hello Anma
My ENT said she had been looking into the risks of which there was very many, and in her opinion she would not recommend it. It does not eliminate the nodules and basically scars the thyroid and could cause future complications. She said the NHS would not fund this treatment.
I have contacted Southampton and want to go and see them, hear from doctors who have more knowledge.
Hi, I can’t tell for sure until they reassess it and that will happen 5 months from now but from what I can tell yes, the nodule feels much softer to the touch than a month ago but still not like it used to be before the procedure. My nodule used to be filled with fluid and now is solid so it may well be that it will never feel as soft plus I’m pretty sure there’s still some scarring and healing processes still happening.
I can’t see it anymore when I look into the mirror, my neck is slim and symmetrical. Even when I poke around I need to stretch the neck in order to find the nodule but please keep in mind that the consultant told me that in my case there’s been a well above average reduction and some people even need a second RFA procedure. I do not want to over-inflate people’s expectations.
I guess the absolute happiest moment so far has been two weeks ago when I received by post a copy of the letter that the team at UCLH has sent to my old ENT. The letter basically reported that the procedure saved my thyroid and I would have loved to see his reaction because he insisted on thyroidectomy.
Hope this helps and take care!
Its amazing news!
I’ve mentioned it to doctors and they tell me it’s not available on the NHS. My partner is taking me on Monday to the doctors and has printed off information which insists it is. We’ll see what happens. My nodule is 2.6cm (along with 2 smaller ones) which they insist is small but it really bothers me and is causing me a lot of anxiety.
Oh, why am I not surprised?! My doctor told me the same thing although I went as far as sending him a letter with the contact details from UCLH. He eventually had no choice but to write me a referral but messed it up by addressing it to the wrong department at UCLH (although I provided him with the right details). He also completely messed up the terminology; he referred me for ultrasound ablation instead of radiofrequency which indeed is not available on the NHS. He also misinformed and told me that RFA is more dangerous than surgery but that contradicts the medical literature on the topic and what the team at UCLH told me about it. I could go on but I already feel my blood pressure rising. I wasted a huge amount of time and mental health on this because of his ignorance and if it weren’t for my vigilance I would have never received the right treatment. Be wary and stand up for yourself!
Hey there, it should be easy to get referred to UCLH. Depending on who's currently managing your thyroid problems, you just need to ask them for a referral to UCLH. You have the right to choose at which NHS trust you treat your medical problems and you also have the right to get a second opinion at any time during your care.
From what I know, there are quite a few private places in the UK where you can have RFA for thyroid nodules. Just based on a quick google search I came across at least three private clinics but I am sure there will be more.
Thank you so much Anma,I will speak to my Doctor first ,if it's too stressful getting a referral, then I would go with the private option.
Thank you so much.
Its honestly so refreshing to hear it all went well for you in the end. My other half is not afraid to push for things, unlike me. I’m fed up of being fobbed of, not listened to.
To know you had to push, but finally got there and was successful, is huge for me to hear.
Hi anma, I just wanted to say a big thank you for sharing your experience here.
I also have benign thyroid nodule, and the only options I was given was to either do nothing or surgically remove the whole lobe. But then I found your post about RFA (and one by Scoobyslayer2003) and I asked to be referred to UCLH, which took A LOT of insisting. Finally tomorrow I’m having my treatment, so thank you so much for informing us better than many doctors!
Wow, that is fantastic to read. This is precisely what I hoped for – people becoming aware of this treatment option. Thank you so much and well done for your assertiveness. Hope the procedure goes well for you.
I totally agree my ENT is so dismissive of RFA and just wants to operate!!
I've had my thyroid nodule for over 10 years all test showed benign. It grew slightly a year ago. I've had three ultrasounds and 3 FNA the first showed an indeterminate score but the last two have shown it to be benign. I am very fit and healthy with no symptoms of fatigue, weight gain which can be associated with thyroid problems. all blood test are fine.
He is a surgeon at UCHL but he is so rude about the RFA team and just tells me their work is a lot of nonsense and I would regret being sent to them. I took my husband with me and even he was shocked at the Consultant who just talked of operating and nothing else.
Its making me so fed up and I just don't know what to do??
I convinced him that I would like to wait and see so I have another appointment with him in September to see how I am.
It is only 2cm but I can see it and it bothers me. Also I am so worried it will grow again. Also the problems people have had after a lobectomy really worries me especially as so few people actually needed it in the first place. Any advise is welcomed????
What can I say, seems very unprofessional of your ENT to openly talk like that about his colleagues. If indeed he was rude and tactless like you’re saying it would be a major red flag to me and I wouldn’t trust him on a personal level if you know what I mean. Also, he is not only discrediting the colleagues performing this procedure but the entire trust who invested resources in this expertise and technology. The NHS works on guidelines which dictate that medical procedures and drugs need to go though scrutiny before being used. They need to be accredited by NICE. If a procedure is accredited by NICE it can’t be ‘a lot of nonsense’. Simple as that. Also, if he indeed noticed that something shady is happening why isn’t he raising an alarm, you know, to protect patients. You must ask him that since it seems insane to me that he'd be happy to live with that on his consciousness.
My advice to you is - do your own research please but stick to trustworthy sources. Go to the NICE guidelines on “Ultrasound-guided percutaneous radiofrequency ablation for benign thyroid nodules” and see what they have to say about the procedure.
They support their conclusions with peer-reviewed research and you can take it further from there by using google scholar and you’ll find papers that compare RFA with surgery. See for yourself, print that info and take it to your next visit.
Up to a point my ENT’s opinions mattered a lot to me because he has a reputation (you know, good record as a surgeon, jovial and self-assured posh accent) so I saw him as an authority and was extremely inclined to accept his view and go for the surgery. Luckily I happen to be a mini geek and prior to one of my appointments with him, I goggled something and came across some research that contradicted his view yet when challenged he wasn’t able to be convincing enough. He basically told me that surgery is safer than RFA and realised he was BS-ing because I came across a peer review paper that stated otherwise. Second red flag was when he told me that RFA was not available in the UK and that if I opt for it I will have to do it privately, abroad.
Anyway, when I started looking into alternatives to surgery I was overwhelmed and I had to spend a lot of time understanding the whole thing. It makes me worried to know that not everyone has the necessary tools and time to take matters into their own hands and I am angry to know that consultants can get away with not being well informed in their area of expertise and are allowed to be so opinionated up to the point where they can misinform their patients and suffer no consequences.
Keep in mind that you also have the right ask for a second opinion. You can ask to be referred to the team performing the RFA just to have a chat with them and see what they have to say about the procedure and if it is suitable to your particular case. Try and get from your ENT something more concrete than ‘oh, I think the procedure is shady’. Ask him in what way. Ask both sides of the argument, to tell you, in concrete percentages or words, how the two procedures compare. See who has more concrete answers. If your case is not urgent neither of them should rush you into making a decision and they should not evade an answer (like my ENT did). An honest person will not be scared of saying: ‘I don’t know that’ or ‘it is my personal belief’. Do not let anxiety take over. If you can, bring someone with you for the appointments and ask them to take over in case they see you lose your courage or if you forget to ask something. Write all the questions you have and the answers they give on paper and try to check their claims yourself. You can make up your mind that way.
My experience with the procedure and with the team there has been very positive. I had my final follow up in January, my nodule has decreased in size a lot, it does not bother me anymore, I had my thyroid hormones tested and don’t need any medicines or any follow up appointments (unless I notice that it grows again). Based on my personal experience I would absolutely recommend the procedure. HOWEVER, I am just one person (my experience is anecdotal) and you must do your own research. Best, A.
I agree with you. I did a lot of research and I always ask questions and clarify. I think this disturbed him because his arguments for not speaking to the RFA team were futile.
I will persist and meet with the RFA team.
It's been reassuring to have your input on this as you have undertaken the procedure. I'm so happy RFA worked for you and I'm really glad you are sharing your experiences with others.
Hi I am sorry I know this is an old post but I had a few questions that I hope you could answer. I have a large goitre getting bigger all the time. Normal thyroid function but 7cm nodule as well as multiple smaller nodules. I am due to have surgery but really want to avoid! I wanted to ask even if you could pm me, who the contact is in UCHL, what the nice guidelines are and how long you waited for procedure. I am due to relocate to London for other health issues and would love to have this done rather than the surgery here in Northern Ireland. I am really struggling with pressure and am hoping maybe my private endo here could refer me if I had the correct info to give him. I hope that your recovery has continued to be positive! Thanks in advance.
Hi, no worries, I get email notifications each time someone comments on this post and I don't mind replying. Here are the links with the info you asked for. In my experience it is best if you print them and take them with you to your next appt. Take care.
Hi, I went to see the specidlist in London and was a candidate for the RFA but I decided to hold off for now. The procedure has more or less the same risks as surgery but the benefits of not having to undeego a surgical procedure and all that involves which is great , however what I didnt realise was that it actually destroys the thyroid gland completely on one or both sides depending on what you need. I thought it just shrunk back to normal size and destroyed the cysts. Also the dead tissue from the thyroid just remains in your body, I just didnt fancy that.
I have a lot more to do in terms of healing both naturally and medically, ie, diet, vitamins, life style and optimizing thyroid medications. I decided to focus on those and then decide if I want/need to proceed. I have noticed that certain foods, chemicals tec cause my goitre to swell up and cause discomfort. I am planning on looking at this further in the hope that I might be able to avoid any interventions. My t4 is low, b12 low, vitd borderline and have hplori infection. So keeping my fingers crossed for the future. I hope that helps. If you decide to proceed it was UCHL and I was seen quite quickly.
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