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Hello,had left thyroid out in Nov last,hurtle cell cancer outcome,
After the op surgeon said all ok nothing found also when I left hospital they said all ok
when I saw surgeon 2 weeks later first words were of coarse it’s cancer you know
right side out in January 2019
put on 150mg thyroxin and calcium pills surgeon says he saved most of neck glands
I am awaiting oncology for radiotherapy and have not yet been assigned specialist nurse
question ,why do I feel cold, I dress up with several coats outside
any info on hurtle cell ,I might not have the spelling exact
Hi Bill lea,
Thank you for contacting us
I am sorry to hear you had to have a second operation. This might have been because once the surgeons received the results form the first surgery, they knew it was a Hurthle Cell Carcinoma, and the most common treatment for this type of cancer in the thyroid is a total removal of the thyroid gland. Hurthle cell thyroid cancer is a sub-type of follicular thyroid cancer.
The pills you are taking now will be to replace the hormones the thyroid gland used to make, to prevent experiencing symptoms such as weight gain, feeling tired irritable and depressed. Feeling the cold more might also be a sign of not enough thyroid hormone in your system. It would be advisable for you to talk to your doctor and inform them of this, they might want to check if your hormone levels are in the right place. I can see you have not been assigned a specialist nurse yet, so your GP or the surgical team should be able to give you advise on this.
Radiotherapy after surgery does sometimes happen several weeks after due to the fact, that your wound need to have fully recovered, to prevent any complications. You should expect a letter for an appointment with the Radiotherapy team to plan and prepare you for your treatment. It might be advisable to try and contact the hospital team in the next week to find out if this appointment has been made for you already.
I can see that you have joint our online thyroid cancer group already, thank you, you may wish to continue to visit the group and read about other people’s experiences. It really helps people to talk about their problems. You might find it also helpful to contact one of our specialist nurses on our support line and talk about your issues.
Many thanks for reply I will contact my go and ask for her advise re coldness
i had a oncology date come through today so not long to wait
the is a forum gunning on hurthie cell cancer ,but I don't want to comment on there until I have been to oncology
many thanks I will email when I can regards Bill
Hello Annerose,I have seen mr grant the oncologist, he says that the 150 mg thyroxine is not enough to combat my coldness,hotness
I had bloods taken for levels but after telling me all about the radio iodine procedure and wanted me to start a s a p , but said he could not continue until I have my heart ablations.saying that my eptopics and palpitations would become unbearable with increased thyroxin
question what levels of thyroxin would stop coldness or would they try increments
question if as I fear I will not have radio iodine therapy this year will this be dangerous for the cancer
question can thyroxin cause insomnia I struggle to sleep after 2am since I started taking dose
also I had a heart ablation in 2016 this was a 9 hr op which was unsuccessful this took 4 months to recover from
Dr grant dictated letter while I was there asking for heart op date ,this list is very long and have been waiting to have since the first op
If you think it worth me talking to a specialist nurse have you a number
he wants to see me again in June for update
Thanks for getting back in touch. If you don’t mind, I’ll answer your questions in the same way that you put them. It’s good that you have been seen by Mr Grant your oncologist and have had your bloods checked.
question what levels of thyroxin would stop coldness, or would they try increments: Your oncologist will adjust your dose according to your current levels in your blood. This will usually be a gradual increase in dose followed by further checks on your levels.
question if as I fear I will not have radio iodine therapy this year will this be dangerous for the cancer: This is a difficult question for us to answer as we don’t have access to all your clinical information. You should discuss this in more detail with your oncologist. Radio-iodine treatment can be delayed by months or even years following surgery. Your oncologist must look carefully at what the potential risks are of doing this against the potential benefit of the treatment.
question can thyroxin cause insomnia I struggle to sleep after 2am since I started taking dose: Thyroxine can contribute to a feeling of restlessness or agitation with insomnia, this would usually be an indicator that your dose may need reviewed. Once you are on the correct dose your side effects should begin to settle down.
It’s good that Dr Grant is liaising with your heart specialist. This allows them the opportunity to discuss timescales and risks of delaying any further treatment. No-one wants to make you unwell with your treatment whether it’s for your heart or your cancer.
It may be worth having a look at The Butterfly Thyroid Cancer Trust patient support contacts for some extra support alongside our online community thyroid group.
Hopefully you have been allocated a keyworker or Clinical nurse specialist at the hospital to discuss things in more detail. If not, you are welcome to call us on 0808 808 0000 Monday to Sunday 8am-8pm.
Fiona (Cancer Information Nurse Specialist)
many thanks for replying if I could sort the insomnia things would ease,I am not sure if I can have sleeping pills with my heart
Ectopic,ii have booked a double appointment session with my Doctor to see what’s the best option
Hello Fiona or Annerose,
just an update from my last post I am still trying to untangle consultants oncology are not happy to proceed with radio iodine as they think my heart will be damaged the heart consultant says the risks are the same as the thyroid removal ops I had my Doctor has written to both to try and quicken things up
both calcium levels and thyroid blood test have dropped but oncology say no lncrease on 150 mg daily
if I have heart ablations,I had 50 over 9 hr op in 2017 done again then no cancer treatment this year it took me several months recovery last time
question is it possible to have a scan or m r I to ascertain if cancer has spread .If there is I would be much happier to wait for cancer treatment.its the not knowing and 6 months nearly since cancer diagnosis .i am sat here in the sunshine writing this and I am sorry to burden you with my problems regards Bill
I’m glad the support and information from Fiona and Annerose has been helpful.
You’re not a burdening us with your problems, we’re just glad we can help.
As Fiona mentioned in her previous reply as we don’t have access to your clinical information, I will try to answer your question. In some occasions there are scans that can sometimes be carried out to find area’s where cancer is active. Your treatment team would be able to discuss your options and what would be best in your situation.
I can only imagine what is going through your mind right now. It must be a very stressful time. Sometimes it can be good to talk through what’s happening. It is important that you look after yourself. As you already know there is support available through our online community, but is also available in your area.
If you have any further questions, please get in touch via email . If you think it would help why not give us a call.
You can call us free from landlines and from most mobile phone networks* on 0808 808 00 00 Monday to Friday 9am – 8pm
Cancer Information Nurse Specialist
Hello Keith,fiona or Anne rose, I have had the ok for cancer radio iodine treatment from the heart consultant
i have eptopics as my previous emails
I am seeing oncology doctor late June,9 months after being diagnosed so I am guessing it will be getting on for a year till treatment is completed
question if I do have eptopic problems whilst having the radio iodine treatment (inpatient) What would be the procedure
Thanks for your question, it’s nice to hear from you again and I’m pleased to hear that your heart specialist has given you the ok for your radioiodine treatment to go ahead.
It would be a good idea to put your questions to your oncologist when you see them in late June. All hospitals have policy’s and procedures for dealing with potential complications during treatment including cardiac events. It might mean a longer stay and closer monitoring for you while you are in hospital.
Your Oncologist will more than likely speak to your heart consultant to see if there are any specific precautions they need to take in relation to your heart problems. Remember that their aim is to keep you well, prevent as many complications as they can and have a plan in place for dealing with known pre-existing conditions.
Try not to worry too much. Ask all your questions at your next appointment and hopefully you will feel confident in your treatment plan and managing your heart problem alongside it.
If you think it would help to talk this through then call our Support Line on 0808-808-0000 and talk to one of our nurses about this. If you think that would help we are open every day 8am till 8pm.
Best wishes and take care.
Fiona Macmillan Information Nurse Specialist
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