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A place for people affected by thyroid cancer to support one another, ask questions...
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i would like to share my story with you and maybe you will be able to help with few questions I have,
My husband has recently received results of a thyroid ultrasound and biopsy that both show nodle in the left lobe of 18mm and apparently not spread and lymph node not enlarged with suspicious of malignancy of thyroid carcinoma.
We have seen specialist endocrinologist surgeon about this and the surgery is set for the 5th December.
As the Dr said by biopsy result he is Thy4 suspicious of a cancer they will not know more until its removed and it will come back from pathology and says what it is what type of cancer etc we should know this before Christmas and then if its cancer they will tell us what's next.
We had to chose either partial or total thyroidectomy so we decided for total to remove the whole thyroid and not to do it twice still not sure if we decided right?
As for the scans or mri he wasn't sent for any. Now I am afraid maybe he should have to do more scans or mri to see if its not spread before surgery but then if its not confirmed that is a cancer maybe that is why they need to find out first?
Dr did lymph nodes check by touching she said they are normal also ultrasound result never said its spread and said lymph node aren't enlarged and now getting myself into panic maybe we should ask for more test to be sure for 100% of the cancer is not spread to lymph nodes? As she only rely on the ultrasound and biopsy is this ok?
We had so many questions written down but at the moment we need to wait after the surgery what type of cancer it is I didn't even ask them all and now sitting and regretting that should ask to at least have an idea.
I think this situation is so overwhelming that even the surgery date is set we are still so scared and nervous what is going to happen next.
So panicking if the total thyroidectomy was a good choice then fear of his vocal chords could be damaged then if the can process the surgery without further scans or mri and then what if he is going to be low in calcium after op and how will we know if its not spread anywhere else in the body? How will they dose levatyroxine tablets after the surgery?
Its so scary and uncertain I just cant stop thinking of this.It is still a big shock that it happened we are so worried of this whole situation.
would you be able to send more advice on this, will be much appreciated. Thank you.
I’m sorry to hear about your husband’s tests result. Waiting for answers can be very stressful, and it’s not unusual to feel scared and worried.
I see that you have also posted in the thyroid group. It’s always good to hear from others who have been in your situation, as they understand what you’re going through. I see they have answered your questions really well, and have also reassured you that most thyroid cancers are very slow growing and most of them are successfully treated.
Having read your posts in the thyroid group, it sounds like reading and thinking about thyroid cancer too much could be causing you more stress rather than calming you?
I’m not sure that giving you more information about thyroid cancer would be particularly helpful at the moment. It might be best to try and take things one step at a time for now. Once you have more news regarding a definite diagnosis, you may want to come back to me with more questions.
You can always call us on the support line and talk to one of the nurses if you think talking about it would be helpful. We might not have all the answers you need, but it can really help to talk through your worries.
Thyroid Cancer Nurse
I am so sorry for my late reply its been such nervous and stressful last few days. Thank you very much for getting back to us. I wanted to let you know how we are so far.
His surgery was on Tuesday and now he is back home. He is still very tired weak and sore.
His calcium level seems to be fine, he thankfully only had one parathyroid lost during TT but even calcium level at 2.34 he is still having a bit of tingling in his fingerd and lips?
The vocal chords were tested after and are perfectly fine.
The wound has dissolvable stitches and white sticky stripes covers the wound so its hard to see how it looks underneath it. As to the wound care would you be able tell us few tips as when he can have a full shower, can he wash this if yes what with? What to look on to make sure he has no infection? What position to sleep on as some peope says need to be sit up or propped up for how long? He also have abit swollen under the wound on left side but maybe due to the op ? What moisturiser to use on the scar and when?
The surgeon explain the TT procedure. She removed both lobes left with lump and right sge said was clear also she removed one lymph node from under the left thyroid lobe as it was enlarged and sent it for FNATest. She thinks it was small but hard so less likely to come benign.
Sbe mentioned that it will be sent after histology to MDT to decide what to do but sometimes when its small they might not send him for RAI. This is where our worry starts. As we thought he will be given RAI considering he had a TT and he is young for precutions to make sure all cancer cells are killed of and also for long term reassurance and quicker spotting if any cancer reacurrance. I know we dont know what it is yet and what MDT will decide but there is an option he might not have RAI. So we are wonder what if they say no need for RAI and he really want to have it along with full body scans to make sure there is no spreads anywhere else and to make sure all cancer is gone? If they say no what we can do that he could have it anyway? Could we resent to MDT to revise it or ask for appintment with oncologist?
These are only speculations but we need to know and be prepared for any of the two options they will decide on to know what to say at the appointment with surgeon in 10 days.
Geri please could you explain this to us and maybe you could advise us about this please. I would appreciate to hear from you. Thank you.
Apologies for not getting back to you sooner. I was off ill last week. I’m glad to read that your husband is back home and everything went well with his surgery.
All surgeons have different opinions on how long to leave a wound before starting to moisture the scar. I would check with his doctor when you go back on the 20th. It’s not unusual to have some swelling or feel some tightness after surgery. His doctor will check this out also when he goes for his follow up next week. As long as he’s comfortable he can sleep anyway he likes.
I think it’s important to take things one step at a time. I know things have been stressful. However, try and let him recover from his surgery, before worrying about whether he will need RAI or not. His doctors will recommend what they think is best for him, and wouldn’t want to give him treatment that they may not need.
I see the others in the thyroid group here are supporting you well, so keep using the group as much as you need to.
You can always call us on the support line if you think talking about it would be helpful.
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