Thyroid Cancer, Anyone?

[kenzi26]

Hello! I was just diagnosed with thyroid cancer today. I had a fine needle aspiration done a couple of weeks ago on a 3.7 cm nodule, and they couldn't get a difinitive diagnosis based on that. There were quite a few abnormal cells, so we made the decision to remove the left side of my thyroid. So, I had surgery on the 30th. During surgery, there was a pathologist on call who examined the tissues to determine if it was cancerous, but they still couldn't figure it out. They noticed more nodules on the right side, so they made the decision to remove the entire thing. They also removed several lymph nodes in my neck because they were swollen. My doctor called me today and confirmed that it was in fact cancerous. Thank goodness he removed everything the first time otherwise I would be having a second surgery!!

I am meeting with doctors later on in the week, but it looks like I will be having a radioactive iodine treatment, no chemo or ratiation. Has anyone here been diagnosed with thryoid cancer? I guess I'm just curious to see what your treatment has been like, or what I can expect. Sorry if this post has been a bit incoherant, and please ignore spelling errors, I'm still on a bit of pain medication

 

[hellohefalump]

I have no experience, but wanted to wish you good luck with your treatment. it must be really scary xxxx

 

[kenzi26]

Thanks! It is very stressful. Thyroid cancer is very easily treated, though! So I'm keeping my chin up

 

[kenzi26]

No one?

 

[kenzi26]

Guess not

 

[Bec27]

Sorry I have no experience, just wanted to wish you the best of luck with your treatment, hope it all goes well

 

[MrsDuck]

Hi kenzi so sorry for what you are going through I guess I am about to be in a similar position I had the fine needle aspiration a couple of weeks ago too and went back for my results today, it was inconclusive so I'm having to have it removed along with the surrounding thyroid. I suppose I'll know more about if it is cancer or if it has spread after the op and after the biopsy on the removed tissue.

He talked about radioactive iodine therapy if it has spread but I'm afraid I can't help you with what it is going to be like.

When are you due to have it?

I hope it all works out well for you x

 

[yumyum1979]

Yes my husband in 2009 he had an over active thyroid and when they removed it only to find tumours . Two weeks later he had a neck direction which is a cut from ear to ear removed about 50-60 nodes each sides. 3months later it had returned so the left side was reopened and another cut up to his chin . He had cancer from his breast bone to the brace of his scull . After that and many bone scans then had 6 weeks radio therapy everyday as chemo doesn't work on his cancer that was named medullary which is the 4worst out of 5 thyroide cancers. You are correct in saying certain ones are easily treated . He has gone through a hard time as he was a bricklayer but no longer can do that but now a teacher but we nearly lost our house I had to stop work to get help from benefits etc. where we are now is every 6 months he goes to the royal Marsden they are fantastic ! , just for bloods etc but he is left with reduced movement in his left arm as they had to cut through a nerve to remove tumours and a slight drop in his mouth he also can't look up very well as the scar tissue is so tight . It's hard as he can't to what he used to do and is very restricted in what he can do with the kids . Good luck with this its hard but in my expierance they know what they are looking at and are very quick in sorting . As you have this iodine set up for you then I would say try not to worry as that's very common and you have an easy one to treat pm me if you need any advice on anything oh and my husband is on thyroxin now as he doesn't have a thyroid that he takes everyday but ask about calcium tabs xx

 

[MrsDuck]

Wow yumyum what a lot you and your dh have had to put up with, thank you for sharing it with us, I hope your husband gets all the treatment he needs and everything works out ok.

 

[Whisper]

Its so good to read the process for other people, i have a 3.5cm nodule in my right thyroid I had the scan and needle aspiration back in January and i know it has grown since then, my follow up appointment wasn't until May and they do want to remove the right side.

I am concerned things are taking such a long time, it bothers me daily and is more noticeable since i lost a little bit of weight.

I am sorry kenzi that it wasn't a straightforward removal and be done with, and yumyum it sounds like your husband has had an awful time.

To be honest i know the chance is slim but i am worried about it having spread or just not being a simple take it and out then i'm all better again.

Would you be concerned about it taking so long for them to remove? I don't even think the consultant checked my result until the morning of my follow up appointment (4months after the scan and needle aspiration!)

Sorry i can't help anyone, you all seem to be a few steps ahead of me on this process.

 

[Whisper]

I just found this web page, its a few years old but interesting and a helpful insight to one persons experience and treatment:

https://thyroidcancer.org.uk/index.html

 

[MrsDuck]

Whisper I think I'm in a similar position as you. I've had mine for at least 6 months if not more, I fell pregnant in dec and in jan I noticed the lump which my dr thought was connected to pregnancy, that unfortunately ended in a miscarriage at the end of feb and as it still hadn't gone down sent me for tests on it. I had had blood tests but they had all come back normal.

I have no idea if my lump has grown or not but seems to be a similar size to yours and on the same side.

I only got my inconclusive result on Friday which was a shock and he asked me if I was pregnant, I said I didn't know but that we have been trying, he told me if I did find out that I was pregnant then they would just wait til the middle trimester before operating.

I have just found out today that I am in fact pregnant so I'm going to have to wait another 8 weeks or so before having the op.

Thanks for posting the link to the thread, hopefully our procedures won't be that bad my consultant told me my scar would be 2inches long I don't know about you?

I hope all goes well for us

 

[kenzi26]

yumyum~ Wow. Thanks for sharing your story. It must have been such a difficult time for you and your husband. How scary!!!! Luckily, I don't have medullary or anaplastic cancer. It's either papillary or follicular. I will find out when I meet with the endocrinologist.

MrsDuck~ I hope everything turns out ok for you! My results were inconclusive as well. My PCP was pretty sure it was cancer, but the surgeon wasn't convinced based on the biopsy results. During the surgery, he was pretty sure that it was cancerous so luckily he removed everything all at once.

Whisper~ I would be very annoyed that it is taking so long. I was told that generally thyroid cancer is very slow moving, but I noticed my thyroid was enlarged at the end of March. By the end of May, it was very noticable, especially when I swallowed. I am very impatient and don't like waiting, so I took charge and fought with my doctor to give me the results asap so I could get all of this taken care of.

I couldn't get an appointment with an endocrinologist/thyroid cancer specialist until July 16th because the doctor my PCP refered me to does not accept my insurance. So I had to hunt one down myself. In the meantime, I am without a thyroid, no replacement hormone, and no cancer treatment (if necessary) until then. I'm so frustrated.

 

[vitaniya]

It must be very horrible~~~~But I believe youcan overcome it!Best wishes~~~

 

[yumyum1979]

Good luck with your treatment xx

 

[MrsDuck]

Kenzi I hope all goes well xx

Whisper I hope you get treated soon xx

I have just had my letter calling me in for pre op scans, paperwork etc next week and they will give me my op appointment date then.

Fingers crossed for us all

 

[MrsDuck]

Kenzi how long is recovery after the removal process? I need to advise work on how long I am likely to be off, I'm working off best case scenario that I don't need any additional treatment after removal (I'm staying positive) any ideas? Are we talking days, weeks or month's?

 

[kenzi26]

Recovery (for me) was relatively easy. I took 2 1/2 weeks off because I work at a daycare and am constantly lifting and moving around. You will not be able to drive for a while (the length of time depends on what your doc says) because it will be a bit painful to turn your head. I would say you will need around 10 days to 2 weeks for a full recovery.

Depending on how much of your thyroid they remove, you will need thryoid hormone replacement medication. I don't know much about this, because I am not able to see an endocrinologist until mid-July because I couldn't find a doctor that accepted my insurance, so I will become hypothyroid until then. One of the symptoms of hypothyroidism is fatigue, and I am just now starting to feel more tired than usual. I go back to work next week, so I'm a bit nervous. As far as further treatment goes, I can't give my work an estimate of time off I will need. I'm just going to have to give them a doctor's letter explaining that I have thyroid cancer. Luckily, my boss is very understanding.

I wish I could tell you more!! But, recovery from the surgery itself is quick! Thyroid cancer is uncommon. When I had my fine needle aspiration done, the radiologist told me that he has done about 500+ FNAs in his career, and only 3 or so ended up cancerous. I guess I just became #4. I was told that a much much larger percentage of young women have benign nodules than cancerous ones. So good luck! Stay positive, and please keep us updated!

 

[MrsDuck]

Thanks kenzi for your reply, I hope my surgery goes as well as yours, I've read some horror stories (google is your worst nightmare at times)

I hope you get your medication soon to stop you feeling so tired, in your job I bet you were exhausted by the end of the day before the surgery.

So sorry you became unlucky #4. When will you find out if you need radioactive iodine theropy or not?

I hadn't thought of the practicalities of driving, which I have to do in my job, so I may have to be off a bit longer than I thought.

 

[Whisper]

Thanks all for replying, well i got some good news, my pre-op is next week and the following week i go in for surgery.

I think they are planning on a partial removal but i suppose it depends on what they find.

I have had the lump in my neck for sometime close to 2years maybe a bit more to be honest, i noticed it whilst pregnant with my youngest and the doctor said it was normal and would go away after, well i went back after when it didn't go away and he said its still normal, i went back a third time to a different doctor and she sent me for the tests which have resulted it in needing removal - i am so glad i persisted, i just really hope its a benign lump and hasn't spread.

Mrs Duck its good to hear you are in the pipeline to for pre-ops, it sounds like we might be having surgery around the same time, it will be nice to share recovery experiences.

Kenzi - sorry to hear that yours wasn't straight forward but i hope you can get the follow up treatment sorted soon as i can imagine the fatigue is slowly going to get worse.

Its just a big ol waiting game now, i just want this thing out of me, asides from the worst case scenario on a more vain note, i don't want to get fat! The issue of a scar isn't bothering me too much at the moment but i suspect it will afterwards, Kenzi does your scar bother you or is it just a cool addition ?