Medullary Thyroid Cancer Treatment

Hi Skies, sorry to hear you have had such a battle to get your symptoms taken seriously. I too have MTC and it took around 8 years with my GP telling me I had menopause before I was taken seriously! And by that time it had spread to lymph nodes.

When the results came back from the biopsy as MTC, my ENT consultant admitted he wasn't a specialist in MTC and referred me straight to a colleague in a different hospital who was. I was bewildered at the time but now in hindsight and gaining as much knowledge as I can on MTC, I realise how lucky I was. You absolutely need a MTC specialist surgeon to go in once and get it all out. It's a specialist operation and if you don't get that first off, from what I've read, you may well have to have more surgeries later.

To give you an idea of tests, I had FNA, biopsy, CT and MRI. Bloods were taken for Calcitonin and CEA (MTC markers) pre-op and genetic testing will be done as it can be genetic or sporadic. Your markers will be tested then post op to given them an idea of how successful the surgery has been.

As an example of the surgery, mine was over 6 hours in the end as more was discovered during the operation! The staging was done after they removed the tumour for me. From diagnosis to surgery was all very fast. You are correct, surgery is the first port of call to manage this. I've been told if your surgeon says they're going for a “cure” then they are not a specialist in MTC! This has to be continually monitored for life, so you need to keep with your specialist consultant to get that monitoring done and analysed and acted on correctly.

There are only a few of us on here with MTC as it's so rare but there is a fbk group (USA) that my daughter has found really knowledgeable and helpful. If you have any more questions do please ask and I will try and help.X

P.S. Sorry I just read your profile (I should have done that before replying) and I see you've had a fair few of these procedures to get to this stage already. Anyway, I hope some of the rest of my reply is helpful.

Hi k9crazy

Thank you so much for your quick reply and sorry to hear your MTC journey has also been challenging. You've been really helpful as you've confirmed what I suspected - that a specialist consultant is an absolute must. I'm already at a disadvantage from what I've read as I only had a hemi first because they didn't believe there was anything sinister. That surgery will have created scar tissue that will make getting the lymph nodes out of that side much more difficult now. During the first surgery the surgeon also damaged the nerves on that side of my neck so if the nerves on the other side are also damaged during the second surgery, I will have problems with speaking, breathing and eating.... not ideal.

I am considering trying to find out if there is anyone who has had a less aggressive surgical approach and NOT had the lymph nodes stripped out, and how that has affected them.

I have done some searches and  identified a specialist consultant via the British Association of Endocrine and Thyroid Surgeons who seems to be very experienced with MTC, and I am going to see if I can set up a private consultation to talk this through and get some more  information. I also want the genetic test done so that I know exactly which variant I have - NHS Wales have told me they won't do it because I have no relatives or family so "it doesn't matter". I certainly don't agree with that - as MEN2 variants can affect other gland too:  I'm the patient, and so I should be fully diagnosed in my opinion.

Anyway thank you again for your valuable advice-  I hope you continue to recover and the good days far outweigh the iffy ones...

I'm sorry to hear you already have nerve damage from your first surgery, that certainly would make you think long and hard about the next surgery. I'm surprised (or maybe sadly not so surprised) at the attitude that you didn't need the genetic testing as you have no family, that really does show a lack of their knowledge.

Over the last year of researching I'm learning so much. I don't know if any of this will help you? On the Thyca website (mostly USA members) there are discussions between MTC members at the moment on Proton radiation, External Beam Radiation which are interesting. (I know you also mentioned Radio Frequency Ablation in your profile).There are also members on the drugs selpercatinib, pralsetinib, cabozantinib and vandetanib and they're always happy to share their experiences. One member has also posted a comprehensive summary of his immunotherapy trial.

Like you, I just want to learn as much as I can so that when this rears it's ugly head again I will be far more informed of my options, although I do absolutely trust my specialist (he's also a BAETS surgeon that you mentioned). That's great you've found an experienced surgeon on there too and hopefully will be able to have a consultation with him and weigh up your options. Do let me know how you get on.

I hadn't found the Thyca website, so thanks for sharing that one. I'll have a look around it.

I've got the private appointment set up now for next week so that i can find out more as I'm really not keen on the lymph node removal part. I get the logic of removing the nodes closest to the tumour as they have the highest probability of containing cancer cells, but emotionally I feel very protective towards my lymphatic system for having kept the cancer at bay as much as it has so far . -The thought of taking a chunk of it out makes me feel like a bit of a traitor!

Reading your story though, you have been amazingly strong and resilient, so I guess I need to accept that this is a significant long term thing and I will need to learn to be more adaptable and a lot braver. Thanks for all your support and advice, it's reassuring to not be alone on the MTC journey.

Thank you for those kind words Skies. It's been hard but I'm beginning to accept it all now and just learning to live with how it is.

I just wanted to say please be reassured not all surgeries to remove lymph nodes are like mine. I think I've been unlucky at the extent of my surgery and the side effects. I searched alot for similar experiences to mine and came across relatively few. There are far more people who have good recoveries and few side effects and getting on with their lives. I'm also in the head & neck forum here and alot of people on there have neck dissections for lymph node removal with good recoveries.

I'm so glad you've got your appointment next week. Do please let me know how it goes.

Hi, I'm sure you've probably already come across AMEND (https://www.amend.org.uk) but if not, I've found them very helpful and supportive too. 

Hi!

I was diagnosed with MTC in September this year, and got a lot of useful information, as there is so much uncertainty. At the moment I'm awaiting results of biopsy, MRI, genetic testing and blood test for adrenaline, and should meet with my surgeon after all is back to discuss surgery.  And prior to this Calcitonin and CEA analysis were made

Experienced MTC surgeon is must, please ask your doctor to refer you to someone else, who actually had experience with  MTC.
Keep strong and you are not alone in this.

Hi Alina

Thanks for the information, and sorry to hear you have also recently been diagnosed with MTC. I have now been approved for transfer back to a more experienced specialist endocrine team who are doing all the tests you've mentioned.

I'm very reassured by my new team - they're hoping to do my next (completion) surgery in December so fingers crossed. Hope your scans and tests come back quickly so that you can move on to the next step without too much waiting.