I was diagnosed with papillary thyroid cancer in June 2022. Had total thyroidectomy in the same month followed by RAI in October.
I am looking to use the forum for mutual support and sharing information. Also, it would be lovely to meet others in my area (Loughton in Essex) for coffee so that we could support each other including sharing information.
When I was looking after my elderly mum with dementia at home for a few years, I met a numbers of ‘unpaid family carers’ in my area who were in my position. We formed a local support group. Unfortunately, most of our cared for family members have now passed away, but the group formed a strong bond and friendship. We still meet up regularly as life long friends.
Sorry it was June 2022 not 2023 when I was diagnosed with the cancer.
Hi.
I was diagnosed in March so almost a year ago.
Good luck with your journey. Any questions just ask :)
Thank you! It is encouraging to hear that you have had great support from the group. I am happy to say that on the day of my joining the group I read someone sharing information on the hair products she uses to stop further hair loss. While my latest blood tests are fine and my thyroglobulin antibodies are negative, I am still losing lots of hair everyday. I ordered the products which I received today and am going to use from tonight.
I have complications from the total thyroidectomy I had in June last year. I read a few people writing about vocal cord paralysis. I will contribute my experience about the issue soon as I am currently going through treatment.
I am sure there is something that can be done to make your voice as you want it to be. Specialist will lead the way. I am 38 now and started to loose hair close to my 30th birthday. In my case it is genetic as my mother has very thin and rare hair so there is no point in me trying to fight it anymore (I did seek help for the issue however in my case private NHS treatment was short lived and private hair loss clinic just a scam really). Take care x
I had the EMG (electromyography) today to assess the damage of my laryngeal nerve that controls vocal cords. It has been eight months since I had thyroidectomy. The test confirmed that the nerve damage is permanent. The surgeon is going to give me a surgery called Reinnervation that uses another adjacent nerve as a donor nerve. The surgery is expected to take 2.5 hours, during which time they are going to inject my vocal cord with hyaluronic acid to bulk it up. The nerve growth is going to take a few months, so the injection is going to give strength to my vocal cord straight away. What can be done in these days and age is amazing!
The hair products I started to use is called NIOXIN. It has a good track record. I am going to persevere and see the effect in eight weeks time. Will let you know so that you might like to try for yourself.
Hi, just catching up with messages and have just read yours and hope you are doing well apart from your vocal cord problems @Lotus Flower. We seem to be on a similar path somewhat, my op was in July 22 and RAI just before Christmas. I have vocal cord problems too, one side was permanently damaged prior to surgery but you wouldn't know because apart from not being able to clear my throat from time to time my voice sounded fine. Since my op however, it isn't and I also need further surgery, although not the same as you. So far I have had a Pharyngolaryngoscopy, Laryngostroboscopy and an Electroglottography all on the same day and sounds much worse than it was, I can't even pronounce the words and had to look them up after receiving a letter following them. I am waiting for my operation date which should be soon for a Right Medialisation Thryoplasty and an arytenoid adduction surgery the second of which may or may not need doing but in all the operation will only last around 40 mins all being well. How has your vocal cord problems affected you so far? My voice is poor although getting stronger, but I cannot always clear my throat which is really frustrating, my voice fades out at times when talking, and I sometimes choke which is quite scary when it happens, although only happened once prior to my op and a couple of times since, but I can't catch my breath when I do and make such an awful noise when trying to breathe in it doesn't sound like me at all. I have to be careful eating and drinking or even swallowing at times as I start off coughing. My problem is that the damaged side does not meet the other side so I have a gap which is causing the problem.
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