I have thyroid cancer 😢: Just been diagnosed... - Thyroid UK

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I have thyroid cancer 😢

KatieT1982 profile image
53 Replies

Just been diagnosed with thyroid cancer. I had a TT for graves disease and results came back showing cancer of 2cm. It has spread to lymph node so will now have lymph node removal and RAI (once corona virus is over). My world has just come tumbling down 😢

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KatieT1982
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53 Replies
fuchsia-pink profile image
fuchsia-pink

You poor thing - I'm so sorry. Don't know what to say that can possibly help. Sending big hugs from the south coast x

Ggplusthree profile image
Ggplusthree in reply tofuchsia-pink

You'll be ok. My daughter and brother both had thyroid cancer. Huge long term survival rate and doesn't really spread and very slow growing cancer. Best wishes and prayers.

Nanaedake profile image
Nanaedake

It's such a shock, I'm sorry but please don't despair. Well differentiated thyroid cancer is very treatable. Even with lymph node infiltration it doesn't usually bring a worse outcome long term, I was told. Of course, everyone is individual and the impact will still take time to come to terms with. It takes time to recover so make sure friends and family understand so they can give you good support.

I'm more than 10 years past treatment and no return of cancer.

KatieT1982 profile image
KatieT1982 in reply toNanaedake

Thank you thats good to hear that you got through it. Can I ask how yours was found? Before or after surgery? Did you have thyroid problems before?

Nanaedake profile image
Nanaedake in reply toKatieT1982

I found the lump myself and went to doctor. The only symptom was neck pain but it might not have been related. My advice is to check Vitamin D levels are good and correct any deficiency. Keep an eye on calcium levels too. Find some relaxation techniques, yoga, meditation, hypnotherapy tape or anything that works for you.

Caroline888 profile image
Caroline888

Hi Katie,

I don’t know much about thyroid cancer. Only what I’ve read on the forum but quite a few people on here seem to have had their thyroids removed due to cancer and have recovered with the help of thyroid medication. Of all the cancers I believe it is the most effectively treated. Obviously any cancer diagnosis is scary but I understand the prognosis is good. If you have specific questions about your future treatment I would certainly ask on this site. There are lots of very helpful people here who always seem more than ready to help and advise.

Best wishes

Caroline

KatieT1982 profile image
KatieT1982 in reply toCaroline888

Thank you. Im just struggling to get my head around it, I feel so anxious I was already suffering with anxiety before been told (think probably because of my TT and thyroid levels probably not right at the moment). I just can't cope knowing its spread to a lymph node and not knowing when treatment will start.

Nanaedake profile image
Nanaedake in reply toKatieT1982

It's not like other cancers where spread to lymph nodes makes treatment difficult. I was told that spread to lymph nodes doesn't bring worse prognosis but perhaps it a question you can ask the consultant? Just hang onto the fact this is a very recoverable cancer.

KatieT1982 profile image
KatieT1982 in reply toNanaedake

Ok thank you. Its just the C word its so horrible. My mum had ovarian cancer and telling her today was more heartbreaking than the actual diagnosis, it bought so many horrible memories flooding back.

How do I carry on with my life whilst waiting for the treatment, how do I go to work and pretend everything is ok?

Nanaedake profile image
Nanaedake in reply toKatieT1982

Have you had a chat with your manager? You could let your colleagues know something simple, like, I'm in the middle of some health treatment but it's put on hold due to Coronavirus so I'm feeling very upset and worried about the delay. I'm sure people would be sympathetic.

You don't need to tell them the problem. If you wanted to be more specific you could say it's an endocrine disorder but it depends how kind your colleagues are so be cautious what you tell them and how much.

Remember that in the main thyroid cancer is indolent (slow growing) when I looked back on photos the lunp had been there for at least 10 years!

KatieT1982 profile image
KatieT1982 in reply toNanaedake

Im off sick at the moment I was signed off for 6 weeks after my op. I will pop in and speak to my manager in the next few days.

Nanaedake profile image
Nanaedake in reply toKatieT1982

Let us know how your meeting goes. I hope your manager will be understanding. The present Coronavirus crisis might help provide a positive response since anyone at work might be the next person to get sick and need time off, including your manager.

Are you able to work from home?

KatieT1982 profile image
KatieT1982 in reply toNanaedake

No can’t work from home I’m frontline healthcare. I’m thinking of maybe asking for an extension on my sick note I’m just not sure what to do.

Nanaedake profile image
Nanaedake in reply toKatieT1982

I think when you explain your manager will offer some options. They have a duty to protect staff and you are vulnerable right now as you are being treated for cancer. Your body is already fighting disease and recovering from losing a major body part.

You could ask for sicknote extention but worth discussing with manager first.

Caroline888 profile image
Caroline888 in reply toKatieT1982

I understand you must feel very anxious, but do try to take comfort from Nanaedake’s experience. I have read other similar stories. Lots of people recover from this.

Am really hoping you will begin to feel a bit less stressed soon. Your prognosis is likely very good.

Caroline x

KatieT1982 profile image
KatieT1982 in reply toCaroline888

Thank you I think its just the shock of it all plus my hormones sorting themselves out after TT.

Caroline888 profile image
Caroline888 in reply toKatieT1982

Things should at least start to improve then as your hormones settle down. In the meantime be kind to yourself.

pamelashep profile image
pamelashep in reply toKatieT1982

Hi KatieT1982 I am dreadfully sorry to hear that and am sure your very anxious. You could try Rescue Remedy to help with your anxiety. It's a natural remedy and very useful in all stressful situations. If you would like to know more details please message me as I'm sure you have a lot to take in at the moment. I send you my very best wishes.

in reply toKatieT1982

You are in my thoughts and prayers xx

BadHare profile image
BadHare

Sorry to read this Katie!

Hopefully people who have been through this will be able to offer support. Look after yourself as well as you can, & ask for help on other forums or from other organisations so you’re not alone going through this.

Mel x

Buddy195 profile image
Buddy195Administrator

Hi KatieT1982,

I just wanted to offer support and reiterate the message that it is treatable and you will recover. Just keep posting whenever you need advice or support. This is a great forum and we are all behind you. Best wishes to you!

KayS68 profile image
KayS68

Just saw your post and I really feel for you. I hope you're feeling ok. It's completely understandable to worry. The C word, as you put it, does make you anxious. I was coming on, thinking about whether I should post - today got report from my ultrasound and they flagged it up with 2 of the nodes "suggestive of cancer" - so GP referred me on the 2 week wait to see endocrinologist. He thinks I'll have needle aspiration done straightaway too. But, basically, it was not what I was expecting to hear and even the "suggestion" of cancer has me worried, so I can totally see why you feel like this. Others have given you great advice and info, and I know nothing, but just wanted to send best wishes!!

Georgie120 profile image
Georgie120

Huge hugs from Somerset.

Its hard to stay positive but this is what you must do it is vital for your well being. So when the 'demons' start to creep in...i find night times the worse. Have a warm drink(no caffeine) do something iron or put some ear plugs in and listen to soothing music, go outside and listen to the birds. When your mind is clearer carry on. Dont think you are on your own talk to family/friends. Hope all gets sorted soon x

Heanfo profile image
Heanfo

So sorry to hear this. Take extra care at this sad time x

Contra21 profile image
Contra21

How did you know or what made you go to the dr

faye1117 profile image
faye1117

I had thyroid cancer in 2008 had treatment and complete removal but on Feb 12. 2019 found 5 tumors in my larynx. Had more surgeries. You can and will be victorious.

Ossuryak profile image
Ossuryak

Hi,you need to take your stress level down, I can recommend picking out meditation music that appeals to you and just slowly slow your breathing down bit by bit , easy does it. You will feel better karm and you will be able to think better and even may think more possitive. I know it's a big order but I also know it works .I would start juicing fresh vegetables, Getting a good night's sleep and not working too hard also. Try to think ahead to when your all sorted out and life returned to normal for you, be positive it will happen. Best wishes.

olgadimitri profile image
olgadimitri

Oh dear Katie, as you are still waiting for your medical treatment, please start your own research. Look for untycancer diet! Cleansing body in all possible ways. So many people recovered from cancer in our days, you must become your own doctor. Please join support cancer groups on line if not any around. Ask advisers from recovered people. Please please do more research. Good luck to you!!!

ednafdg profile image
ednafdg

Hello Katie, I am so sorry to hear that, stay strong and try other things that may help you feel better, maybe boost your nutrition, do exercise, yoga maybe through good online links, read, meditate, pray, write, draw, anything that may help you get through this. Feel free to reach out.

endomad profile image
endomad

The fear that the C word brings. I said I didn't want to know what my lumps were when thyroid removed as I am a believer in positive thoughts, I sort of knew but didn't want to scare myself that was in 2009. I had a suspicious small hard lump on 2017 gp sent me straight to hospital with letter, I was seen within an hour (that scared me) I was booked in few days later for biopsy/removal of 'bartholiene cyst'(spelling ?) Now I absolutely knew in my head and heart this time it was nothing.

I agree with everyone to try and stay positive, grounded, juicing is great to keep body clean, low inflammation foods cut out refined carbs and let them know at work that it is cancer or just a few key people, in case you need some time for a few tears in the toilet. Since TT I work mainly on phone and of course customers always say 'hi endomad how are you' can't tell you how often I had to either hang up or cry on phone, I don't handle sympathy well makes me weepy.

I am sending you love, it's a cliche but we are stronger than we realise xxxxx

KatieT1982 profile image
KatieT1982

Thank you all for your kind messages and advice x

I just remembered something the consultant said about the thyroid capsule breaching, was anyone else told this, what does it mean?

Bibisbibi profile image
Bibisbibi

I am so sorry you are going through this and I know how stressful this can be cause I was in a simila situation few months back.i hope you get shorted soon and carry on with your every day routine. Big hugs❤

msb44 profile image
msb44

Dear Katie,

After I had 2 hyperparathyroid glands removed, I had my children get their PTH checked for my own satisfaction. They were laughing at me, but complied. Well, my 47yr old daughter came back positive. She went to my doctors in Tampa Fl, and also had two parathyroid tumors removed. Plus a funny looking lymph node. 4 days later, she was told it was positive for papillary cancer. She went to a specialist at Yale in Connecticut for a consult. Long story short, she waited over four months per the surgeon's advice until the initial surgery was healed. Then had a TT. She started Synthroid, and has been fairly good since. No cancer issues since.

Hope you are feeling better.

Selina-E profile image
Selina-E

Hi Katie,

I just wanted to add to the reassuring posts already made.

My sister was diagnosed with thyroid cancer (aged 27) - after removal of the thyroid and radioactive treatment, she is still healthy and living a normal life 25 years later!

Wishing you all the best.

Batty1 profile image
Batty1

Oh KatieT1982 ..... I can relate sadly I had thyroidectomy 3 yrs ago cancer and I’m looking recurrence in my lymph node, I go in April for another US to triple check and possible RAI which I may decline.

Take care !

Sweeneythyca profile image
Sweeneythyca

Hi katie,

I understand your feelings of shock and despair.

I had many years of thyroid nodules and hormone issues, and regular biopsies until my last yearly biopsy revealed multi focal pap carcinoma.

I am one year post TT after thyca stage 2, lymph node mets. I have not gone for the rai for personal reasons.

I am having lots of scans and check-ups and honestly my main concern is trying to recover from the surgical complications (or rather adapt to them) and the lack of having a thyroid (i still mourn mine) it's a rollercoaster for sure keep yourself as fit as possible, get your health in the best shape possible.... and keep your mind strong. You will get through this, you are in good company xxx

wolthebuilder profile image
wolthebuilder

Hi Katie, I had exactly the same 13 years ago and im fine now. Lymph nodes and entire thyroid removed. The docs said its the one cancer to get as totally curable

You'll be fine except for the normal thyroid issues!

ThyroidThora profile image
ThyroidThora

Hi KatieT1982,

Has your specialist told you which thyroid cancer you had removed? There are 4 different types and they all have variants so, this can determine your prognosis. The majority of thyroid cancers are very slow growing with the exception of Anaplastic cancer that affects females aged 60+. I had thyroid cancer removed 7 years ago and it has been a long road trying to get back to my old self because I developed an underactive thyroid gland (they only removed the right side hoping that the left side would pick up the slack but, it didn't!) and the standard thyroid hormone replacement medication doesn't work for me. After 6 years of arguing I've finally been diagnosed Armour thyroid (pig's thyroid hormone replacement) and I'm feeling much better on this.

I know it is easier said than done but, try not to worry too much. It's a long journey to recovery with any thyroid condition because you get told your only need a little pill to correct your hormone levels then you'll be fine. This isn't the case for everyone so, take the medics information with a pinch of salt and make sure you do all the research you can to forearm yourself.

Take care and please PM if you need to talk.

TT xx.

KatieT1982 profile image
KatieT1982 in reply toThyroidThora

Microscopic papillary

ThyroidThora profile image
ThyroidThora in reply toKatieT1982

Hi,

Papillary thyroid carcinoma has a very good outcome and is the most common of the thyroid cancers. Is it just one lymph node that needs removing? If so, and provided all the cancer has been removed surgically you might not need Radio Active Iodine (RAI) treatment. My cancer was removed surgically and I didn't need RAI. My cancer was follicular variant of papillary thyroid carcinoma and was a bit bigger than yours but, it's gone now and I'm here to tell the tale. Keep positive, eat a very healthy diet, take some gentle exercise and make sure you look after yourself. Be kind to yourself and do the things you enjoy. Plus, take a Vitamin D supplement to help support your calcium and vitamin d levels. Research has found that those you take vitamin d before thyroid surgery have a better outcome because it helps metabolise calcium levels and aids boe density health. If you cannot take vitamin d supplements, I can't I'm allergic to it, then eat lots of vitamin d rich food such as, mushrooms and salmon. Do not eat tinned tuna because the canning process kills the vitamin d and it contains lots of mercury. If you prefer tuna have a fresh, small tuna steak grilled or pain fried in olive oil.

I hope this helps. Sorry I cannot stay online now because I've to get my grandson ready for bed.

Night, night and God bless.

TT x.

KatieT1982 profile image
KatieT1982 in reply toThyroidThora

I’m not sure how many lymph nodes are affected. How does the surgeon know how many are affected after surgery, is it by a scan?

ThyroidThora profile image
ThyroidThora in reply toKatieT1982

Hi,

Did you have an ultrasound scan of your neck before the surgery? This should happen as part of the diagnostic process because it can show up hot spots and cold spots as well as the FNA before they do any surgery. It will be possible during the surgery to see things when they open you up so, I cannot understand why they didn't remove any suspicious lymph nodes. Perhaps, they think it is safer to treat the lymph nodes with RAI because this will kill all the thyroid cancer cells in your entire body not just those in your neck.

I hope this helps and try not to worry too much.

Night, night and God bless.

TT x.

KatieT1982 profile image
KatieT1982 in reply toThyroidThora

No scan before surgery they did a FNA on me nearly 4 years ago but it came back clear. They said they don’t remove lymph nodes during a tt for Graves’ disease as finding cancer is rare. I had an ultrasound 2 weeks after surgery as I had cellulitis so I guess my lymph nodes would have been raised because of the infection.

ThyroidThora profile image
ThyroidThora in reply toKatieT1982

I'm surprised that they decided to remove your thyroid gland to treat your over active thyroid gland (Grave's) disease. Am I right in assuming that they put you on Carbimozol to try and kill your thyroid and it didn't work hence the surgery?

KatieT1982 profile image
KatieT1982 in reply toThyroidThora

Yes that’s right the it didn’t work every time I came off it I relapsed. My endo wanted me to do RAI but I chose surgery because I was worried the nodule I could feel would get larger. The surgeon told me at my post op that I made a good choice not choosing RAI

Oh bless you..so sorry to hear your news..try to stay strong...sending big hugs..

twinpower14760 profile image
twinpower14760

Awww hugs to you and your family !! Just hang in there and if your insurance allows see if they can set you up with a counselor if nothing else to get to be able to express your feelings it helped me and by the end of the conversation I think I helped the counselor feel better too..

Best Wishes and stay strong!!

Nanette

kmf0503 profile image
kmf0503

Just to say I can fully understand you are anxious. I haven't had thryoid cancer but have had breast and initially it is a surreal feeling. It is true that some cancers are much more treatable than others. I did't have to wait at all for treatment but in hindsight I wish I had more time to absorb and do more research. I might have opted for a different treatment route so take some time and educate yourself about your condition so you can make decisons in a calm state instead of a panicked state. Blessings to you.

Oyste profile image
Oyste

Don't worry. Everyone has certain kind of illness. Actually you can get it removed.

LivingWithHT profile image
LivingWithHT

Please take care of yourself and stay home and away from crowds and people who have not been tested. If you need groceries or essentials, please consider asking someone to do the shopping for you. It’s very unfortunate you have been diagnosed at such a critical time and that you are unable to undergo surgery until the quarantine period is over. I really hope you stay safe and well throughout this entire ordeal. If you follow protocol to a T, you’ll be fine :).

KatieT1982 profile image
KatieT1982 in reply toLivingWithHT

Thank you I am self isolating but making sure I get out daily for one walk away from everyone (I live in a rural area) so that helps with my mental health a bit.

sisa1975 profile image
sisa1975

Hello,

I had a papillary thyroid cancer which was also spread to lymph nodes. This was in 2005. It was an emotional and stressful time but both the surgery and RAI were a success and I am still here. My then 18 months old baby is now a 16 year old teenager.

My surgery (total thyroidectomy) was done in Winchester hospital in Hampshire. My RAI was done in Southampton a few weeks after the surgery. I only needed one dose of RAI as my full body scan showed good results. I still see my endocrinologist once a year.

2leapittoo profile image
2leapittoo

Im so sorry. Its a worrying time for us thyroid people. All the best to you and dont think the worst worry makes one vunerable be positive.

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