We understand that people with cancer are worried about coronavirus.
Here is the
We will update it regularly.
Hi, I am new on this group and today was told my consultant that he thinks I medullary Thyroid cancer, he has told me that he needs to operate straight away and has booked me in for Tuesday. I wonder if anyone else has been through this cancer and give me some idea of the treatment I should get. I am having a full thyroidectomy , so any advice or if anyone can tell me how I will be after the operation I would interested to hear about it.
He also asked me if I had a Thyroid disease in the family and could be hereditary.
Anything about this cancer would be helpful. I am so scared
I’m sorry to find you on here, but it’s the best place to get information about anything to do with thyroid cancer.
There are only a few of us on here with MTC, and hopefully some of the others will respond also. It’s a rare cancer of the C cells in the thyroid bed. Removal of the thyroid is the only way to eliminate spread, you will most likely have a central neck dissection where they remove some of the adjoining lymph nodes. This is to ensure against further spread.
One thing you should ask for is the blood test for calcitonin levels. It’s good to know what the reading is before operation. Then in future you have a means for your doctor to compare at later check ups.
The surgery can take a while, as it is an intricate surgery. You should ask your surgeon how many he does in one year. It is important to have this surgery done by a specialist. You can and should ask for someone who has done this surgery multiple times. You will most likely have some drains following surgery, and they will be checking your bloods regularly for calcium levels. Your parathyroids May have got a bit traumatized and will most likely need some help. I needed to take calcium supplements for a few weeks.
With regards to aftercare following surgery, you will need to sleep in a semi sitting position, with your neck supported with pillows, a v shaped pillow works really well. Take regular pain medication to enable you to be comfortable at all times. I didn’t find the recovery too bad, but it does take time. You’ll find speaking a little difficult, it took me a long while to project my voice.....hubby was quite glad I couldn’t shout at him....lol
I expect you will get more advise from our regular posters on here. In the meantime, I would like to wish you well, try not to worry and make sure you have help for when you get home.
Living in Mexico
Welcome to the forum, though I'm sorry you need to be here!
Please do listen to Minouche, she has a wealth of information on Medullary Thyroid Cancer, and knows what she's talking about. So do make sure that your doctor is experienced with this sort of cancer, and is going to do the correct operation on Tuesday.
After the operation, you won't be able to drive - not as much of an issue at the moment with the pandemic going on - so make sure you've got some shopping in. If you usually do the cooking at home, then I'd def suggest doing some batch cooking so that it's just a case of reheating it rather than trying to fully cook a meal.
You will get tired more quickly for about a week after, so if you're still working at the moment then you'll need at least a week off, possibly two, maybe more depending on what you do. When you sit down, make sure that your head is supported by something. You want to rest your neck when you sit, so supporting your head means the muscles can all relax. Painkillers - you should really only need ibuprofen and paracetemol, but everyone has different pain thresholds. But do make sure and take them regularly for at least a week, even if you don't feel you need them - because that's them doing their job. The anti-inflammatories especially will help you heal faster, by stopping things from swelling.
You will probably end up with a bit of a cough and a sore throat. DON'T PANIC! It will more than likely be from the tube that was ventilating you during surgery. You may also find that you cough up loose phlegm, again, perfectly normal after any sort of operation. The anaesthetic will last in your body for about a week, hence the tiredness as well as because your energy is going to heal you. Roughly a month or two after the op, you may hit another wall of tiredness. Unfortunately, the anaesthetic is absorbed by the fat cells, and when they are broken down it will release the drugs again, making you feel a bit sluggish. If that happens, don't worry, it should pass in a week ish.
After the operation, you'll be put onto thyroxine to replace the hormones that your thyroid produced. As your cancer is suspected as medullary, you won't need to be on a high dose like those of us with papillary and follicular. So you should be dosed and monitored at normal levels, which is good news! However, you need to take the thyroxine first thing in the morning with tepid water, then don't eat or drink anything for the next 30 mins, though 60 is better. If you do end up needing calcium, or if you take a multi-vitamin containing calcium, then you need to take this 4 hours after your thyroxine. If you take iron supplements, or multi-vitamins with iron in them, this needs to be taken 6 hours after your thyroxine. Roughly 8 weeks after you start your thyroxine, please make sure you get a blood test called a TFT, thyroid function test. It takes roughly 6 - 8 weeks for the hormone levels in your body to adjust to the synthetic thyroxine, or if you have a dose change at any point it will take the same to level out, so that's when you should have a blood test to make sure you're on the right dose. If your consultant doesn't arrange this, then it's fine to do it through the nurse at your GP surgery.
Sorry, I know that's a bit of a wall of information, but it's better to have it than not I believe.
If you've any questions, then please don't hesitate to ask and we'll do what we can to help!
I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.
i just wanted to let you know that I had a total thyroidectomy and level 6 neck dissection five weeks ago just before lockdown. I stayed in hospital for one night and all the following day . Just had paracetamol for pain relief, slept propped up with pillows. Recovery has gone well at home, the first couple of weeks I was very tired and had lots of naps in the chair. My voice was quite hoarse but I tried to rest it. Have been walking and cycling in the lovely weather which I feel has aided my recovery. I am in my sixties.
i wish you good luck for your operation and for your recovery.
Thank you very much for all your advice its really helpful to know that I can speak to people that have actually gone through this.
I have had medullary cancer for 19 years after 6 operations I am still here I now have cancer on my spine and liver I take chemo tablets and still working well not at the moment as the virus I can’t go out , hope all goes well for you big hugs
Welcome to the forum Nickai. Lots of kind and knowledgeable people here who will be helpful I know.
Very sorry that you've had worrying news. Yes, it's very scary isn't it.
I have a different kind of cancer (hurthle cell).
I had a hemithyroidectomy in January and will have the other half removed later on this year. I was quite scared as have a really low pain threshold but the experience was incredibly straightforward, and I had hardly any pain at all (just when I first came round from the op but the strong pain relief they gave me took that away almost immediately, and then very mild pain - managed with paracetamol - for a few days afterwards). So I won't worry about the next surgery at all, I don't think.
Do keep in touch and let us know how everything goes.
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: