Thyroid cancer - a new diagnosis
Fuzzipeg
Posts: 2,301 Member
I have a friend who is facing a thyroidectomy. Does anyone have any helpful thoughts or advice for someone in this position. I would like to give the best support I can. Thank you.
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Make sure she gets T4 AND T3 replacement. Be patient with her, she will be on an emotional roller coaster possibly. Also, her energy may be low until her medications are adjusted correctly and can take a long time (3months at least if not a lot more). I only have 1/2 of a thyroid and get tested every 6 months as it can change. Make sure an endocrinologist follows her thyroid medications, not a G.P. or a the surgeon. Best of luck to your friend. Sending hugs, it is a stressful time for her.0
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Thank you. I appreciate your taking the time to write.0
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Hi, I had Total Thyroidectomy in Aug 2013 due to Graves disease.
I agree defiantly push for both thyroxine and T3. I'm on both and feel so much better for it. Its not an easy ride, with lots of adjustments, especially to diet. Also I advise to keep an eye on other vitamin/nutrient levels, especially B12, Vit D, Folate, Ferritin. These can often be low and supplements may be required.
Also tell her to rest rest rest after TT. I was advised 4 weeks off work. I went back after 3, got an infection and had to have another 3 weeks off. Definitely don't rush at getting back out there/to work. This kind of operation is a big shock to the system, so she must take her time.
Good Luck to your friend x0 -
Thank you. keep well0
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Stay on top of the doctors - if any other treatment will be taking place (such as RAI) have that done as soon as possible!0
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Tell her to track her intake if she isn't already. The hormonal shift will dramatically effect her satiation triggers and she will end up eating more to feel full.
The doctors will likely want to move slowly on the levothyroxine, but don't let them go too slow. Push them to up the dosage if needed.
Occupy your mind with something - anything! Also if you think it would help point out all the popular personalities, elite athletes, etc who have gone through this and leading normal lives.0 -
Thank you Butterfly and CSA.0
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Had mine in 2012, a second one due to reoccurance in a lymph node in 2015. I know it's different for everyone, but for me the surgery was a breeze. I was back at work in two days, bandage off in four, scar invisible by the second month (though it's bigger now with the second surgery). It doesn't hurt (and I'm terrified of needles AND bandages. Really terrified. And this was my only experience with surgery).
The tricky part is afterwards. Make sure your friend takes care of the scar as they tell them to. Once they get the go-ahead, message it, use lotion daily, and to take the meds exactly as they are supposed to be taken. Evening out the TSH is always a struggle; something many are still working out years later. They will keep the TSH as close to zero as possible, which is not what a normal person operates at, but that's to try to keep the cancer from returning. Please tell them to be patient and invite them to this forum. There's also a Thyroid Cancer forum.
The surgery may not be enough, depending on the nodule. They may need to do radiation as well. Again, it's not terrible. The diet beforehand is, but the radiation was honestly the best vacation I ever had. (Minus the tongue burning and slight nausea)
As for emotional support, here are some things I needed to learn: it wasn't my fault. There's nothing you can point to and say "that gave me cancer". It just is. There's also no such thing as cured. There's no magic 5 year mark. If it never reoccurs, then great. If it does, the most common form of thyroid cancer is so easy to take care of, the doctors are borderline nonchalant. It's alarming at first, but they are also right. Please welcome them to the club for us. There seem to be more and more of us every year.1 -
I just had my thyroid out. Here's my advice for the surgery:
-Make sure the ENT doc does a LOT of these surgeries. They will give you the best outcomes.
-Talk to more than one if you can.
-Research endocrinologist now. (if they don't already have one) It can take several weeks to get into one. They are almost never at hospitals so it can be very difficult to co-ordinate care
-Start taking extra calcium now. Tums is fine. It gets very low after the surgery
As for things that my friends helped me with:
- My friends were concerned but it was upsetting for to see them upset. So upsetting that I barely told anyone until right before the surgery. But the ones I did tell learned to joke about it and that REALLY helped me. Your milage may vary but being able to joke and talk about it openly without being sad made me feel like less of a burden.
- My friends encouraged me to ask for what I really wanted. For me, that was getting to sing for people before my surgery, because I knew it could damage my voice (and I sing A LOT so that was very important to me) So they helped me coordinate a karaoke night before my surgery. It was fun!
- Other things that were hard were coordinating all of the doctors and bills. If you have a relationship that is close enough to help by being secretary, that would take a huge load off.
- My mom took care of me after my surgery, don't know what your friends situation is, but after surgery you're not allowed to lift anything over 10 lbs for about a week, can't drive while on pain meds, and if your calcium levels drop you get dizzy and weak. (and you're just weak in general) so after the surgery is a great time to help out too- if they need to do laundry or go to the grocery store, take out the trash, things like that are hard a week or two after.
I hope everything goes well for your friend and I'm sure you will do awesome supporting them!0 -
MeepleMuppet wrote: »
As for emotional support, here are some things I needed to learn: it wasn't my fault. There's nothing you can point to and say "that gave me cancer". It just is. There's also no such thing as cured. There's no magic 5 year mark. If it never reoccurs, then great. If it does, the most common form of thyroid cancer is so easy to take care of, the doctors are borderline nonchalant. It's alarming at first, but they are also right. Please welcome them to the club for us. There seem to be more and more of us every year.
I don't want to derail, but this is gold! There are two factors primarily responsible for cancer - longer lifespans and increased medical care. There is nothing you could have done to change it, so if your mind tends in that direction, stop it and be thankful we all live in a time where treatments are so readily available.0
