topic Re: Sharing thyroid cancer experience in Living with and beyond cancer

Sharing thyroid cancer experience

Katherine — Mon, 01 May 2023 23:00:32 GMT

Hi all. I was diagnosed with Thyroid Cancer in 2020 at the age of 25. I had a complete thyroidectomy with 19 lymphnodes removed, major parathyroid issues and radioactive iodine treatment.

I was wondering if there is anyone that would like to connect with me, to chat about their experience and how it has affected them mentally and physically since their diagnosis. I haven't met anyone that has had thyroid cancer and often feel like it would be helpful for me to talk to someone that really understands. I am a good listener too!

Re: Sharing thyroid cancer experience

sch — Mon, 08 May 2023 05:14:19 GMT

Hi @Katherine

I'm very sorry to hear about your cancer. I hope you are recovering ok.

I'm not aware of any groups, but maybe if your called the cancer council, they may have some contacts for you?

How are you feeling now?

-s

Re: Sharing thyroid cancer experience

Katherine — Mon, 08 May 2023 05:46:55 GMT

Hi S,

Thank you so much for your reply, it is so appreciated. Physically, doing better. The specialist is super happy with my progress. But in general, it's been tough since diagnosis. Especially as lots of people tend to remind me I had the "good cancer". My anxiety got to its worst, I fell into depression and started taking some helpful serotonin tablets at the end of last year. It was the best decision I made. I just wonder if anyone else has had the same mental experience?

The scar on my neck isn't the problem, the scar it's left in my mind is what's the worst.

Sorry for the word vomit!!

Thanks for the advice for calling cancer council. I'll definitely do that.

Re: Sharing thyroid cancer experience

Li22y — Thu, 11 May 2023 11:13:27 GMT

would love to chat ....
I’ve been recently diagnosed with Papillary thyroid cancer back in April this year. It spread to a few of my lymph nodes and waiting for Radiation iodine treatment.

im currently off from work ( I work in child care plus I have my own children one with additional needs) which is making this cancer diagnosis more stressful for me.
I am struggling at times with the diagnosis and I have contacted cancer council they have arrange me to talk to someone with a similar diagnosis and I will be receiving some counseling sessions.

I am starting to except the diagnosis but still very emotional. I’m trying to also get healthy and focus on a more healthier lifestyle as a way for me to cope.

one thing I have learnt is not to read diagnosis over the internet as this makes it more scarier and to trust my doctor.

my doctor believes that I will be ok .
My pathological stage is 2 A but clinically stage 1 with moderate risk as I’m only 33

Re: Sharing thyroid cancer experience

Katherine — Sat, 13 May 2023 05:29:03 GMT

Hi there, I am so sorry to hear about your diagnosis. I truly do understand how scary it is. My counsellor (also via cancer council) told me very early on to never google anything! She was so right, it's the worst thing you can do. Google doesn't know your situation, the specifics of your diagnosis etc.

I am happy to connect with you over social media if that would be better?

Re: Sharing thyroid cancer experience

Li22y — Mon, 15 May 2023 08:21:25 GMT

Yes that would be great my FB is Lizzy Klees…

I have so many questions

Re: Sharing thyroid cancer experience

Katherine — Mon, 15 May 2023 08:28:30 GMT

Hey Lizzy, I have added and messaged you on Facebook 😃

Re: Sharing thyroid cancer experience

David1 — Thu, 18 May 2023 11:33:17 GMT

I had the thyroid cancer and did the surgery around 2 years ago, removing half of my thyroid and 5 lymph nodes. Still feel fear the recurrence when finding any uncomfortable of my body.

Re: Sharing thyroid cancer experience

Eddiej77 — Fri, 03 Nov 2023 11:25:44 GMT

Hi Katherine, I had a thyroidectomy 5 years ago, also my voice box was damaged. Still have cancer cells there that are monitored regularly and I've had to learn to speak again , I'm 77. I also have 3 different cancers and back in March had Whipple surgery.

Apart from all of that I'm feeling great!

I find that staying positive, thinking about others and enjoying each day works for me!

Regards, Eddie.

Re: Sharing thyroid cancer experience

Sam19 — Sun, 07 Apr 2024 18:19:33 GMT

Thank you for sharing.

This is my first time in this thread and my first time even googling anything that has the word “cancer” in it. It’s very confronting. Please excuse my lack of knowledge.
Our beautiful daughter (in her 20s) has diagnosed with thyroid cancer with spread to lymph nodes only 2 weeks ago. It’s very new and raw and we are a bit overwhelmed. She is having a lot of chest pain and feels that the doctors are less concerned about the pain and focussing on her thyroid. Is this anyone else’s experience.? She is very fatigued all the time, her hair has all died and broken over the last 18 months which has had a huge impact on her self esteem. Ii would love to hear if anyone else has had major hair issues and if there has been any thing helpful. She has a complete thyroidectomy with node clearance booked for 3 weeks time. Sue is very frightened and unsure where to reach out to. Thanks for listening and for any advice. We are in the Newcastle/Port Stephens area NSW.

Re: Sharing thyroid cancer experience

Susana_CCNSW — Mon, 08 Apr 2024 05:36:26 GMT

Hello Sam19,

I am very sorry to hear about your young dauther's diagnosis. I hope some of our community members can share their thoughts and experiences with you.

Sam if you or your daughter are Australian residents, I would like to suggest calling our support and information line on 131120. They will be able to suggest services available for the both of you if needed.

Warm regards

Susana

Cancer Council

Online Community

Re: Sharing thyroid cancer experience

Sam19 — Mon, 08 Apr 2024 08:02:56 GMT

Thank you

I am overwhelmed and distraught today to find that we cannot get any psychology oncology support because she is being treated in the John Hunter Hospital and you can only get Oncology Psychology support if you are treated at the Calvary Mater in Newcastle. Both are public hospitals but it seems that you don’t require cancer support for thyroid cancer. All other cancers (aside from gynae which offer support at JHH) are treated at the Mater. Does anyone know where we can get support. Also looking for support or direction for her MH in regards to hair loss and dead hair. I know they compared to cancer, dead hair sue to thyroid issues is not as significant, but as a young woman it is having a huge impact on her wellbeing (as well as the cancer) any advise so very welcome.

Re: Sharing thyroid cancer experience

Susana_CCNSW — Wed, 10 Apr 2024 06:30:02 GMT

Hi Sam19,

Please call our information and support line on 13 11 20, Cancer Council provides counselling service for you and your daughter, our oncologist nurses can also give you some information about hair loss or any other clinical questions you may have.

Kind regards

Susana

Cancer Council

Online Community

Re: Sharing thyroid cancer experience

Gaby93MB — Sun, 12 May 2024 00:52:20 GMT

Hi Katherine,

I was also diagnosed with Thyroid Cancer in 2021 when I was 28 and underwent 2 surgeries to remove my thyroid and some lymph nodes as well. I am now clear but I feel like I have only just begun to process all that I went through and I am struggling with my physical recovery ad maintaining my work! I also have people tell me I had the 'good cancer' which makes me feel like a bit of a fraud and that I don't deserve as much support as others. I would love to connect and chat about our experiences if you are still looking for more people to connect with 🙂

Gaby

Re: Sharing thyroid cancer experience

Katherine — Mon, 13 May 2024 03:40:17 GMT

Hi Sam - So sorry for the late reply... I have only just seen your post

I am so sorry to hear about your daughter's diagnosis. How is she doing now?

I didn't experience anything major with my hair other than dryness.

Re: Sharing thyroid cancer experience

Katherine — Mon, 13 May 2024 03:43:19 GMT

Hi Gaby!

Thank you for sharing your experience.

If only we had a dollar for everytime we heard the phrase 'good cancer'. There's no such thing.

I am the same. It took me years to process what happened. I went through a depressive episode in 2022 but have come out on the other side feeling much better.

It's still difficult though. Alot of health anxiety. I am now 5 months pregnant as well, which is amazing considering the cancer experience.

What else is on your mind?

Re: Sharing thyroid cancer experience

Gaby93MB — Mon, 13 May 2024 07:31:52 GMT

Hi Sam, I'm so sorry about your current struggles with your daughter's diagnosis. I have experienced hair loss (although not from my thyroid cancer). I lost my hair when I was in year 12 due to heavy medication for my autoimmune condition that I still have. It was hugely distressing and traumatic to happen at that age and leading into my HSC. I felt very alone in this experience and was adamant that it had to remain a secret which I would not recommend - hiding it was exhausting and stressful which resulted in me withdrawing from activities I loved like swimming and dancing, as well as socially. Unfortunately for me my hair loss lasted a lot longer than expected (many years).

I feel like nowadays there is a lot more out there in terms of advice and positive role models (the positive side of social media!). I really wish I had that as a young girl! I would recommend looking into hair extensions, partial or full wigs for your daughter. I started wearing a partial wig and then various types of wigs and just told people I straightened my hair (I have curly hair). I went to Suzanne's wigs in Sydney CBD but I'm sure there are many other places with really good quality wigs out there now! There are also some great people on instagram who try to normalise having no hair or wearing wigs. I'd recommend @hairlossboss , @abbywrenartistry , @goldylosthair and @shannondooley84 on instagram.

People may think it is a bit vain to worry about when you have big health issues to worry about, but it's impossible to understand the profound impact on self esteem and confidence without experiencing it, so I really feel for you!

Gaby x

Re: Sharing thyroid cancer experience

Gaby93MB — Mon, 13 May 2024 07:44:28 GMT

Exactly right Katherine, it's not a helpful thing to say to someone going through it!

I'm glad to hear you have come out the other side of your depression and congratulations on your pregnancy! I found going through this in the covid era stopped me from planning ahead as I had no way of predicting how things would turn out. I recently went overseas with my family and felt much more positive about having goals again but also gained perspective that I need to put myself first more. Unfortunately my workplace was not very supportive of my experience and I felt the pressure to go back to work WAY too soon after surgery.

I'm wondering how much time you (or others) gave yourself to recover before going back to work? And did you have huge neck/back problems following treatment? I have had constant migraines and back/neck pain ever since. It feels like the last couple of years of trying to push through have caught up with me and my body is not coping with my work demands (my work is very active and full on). I am now considering trying to move to part time work so that I can put more time into my rehab which has included finding spaces like these on the Cancer Council!

Re: Sharing thyroid cancer experience

Kylie_nrs — Wed, 23 Apr 2025 01:12:07 GMT

Hi Gaby,

First of all, I want to acknowledge how tough your journey has been. Thyroid cancer and the subsequent surgeries are significant, and it's completely normal to still be processing everything you went through. The fact that you’re still dealing with physical recovery and work challenges is a lot to handle.

It’s important to remember that no cancer diagnosis is “good,” and your feelings and experiences are valid. The term “good cancer” can minimize what you’ve been through and the real struggles you face in your recovery. You absolutely deserve support and understanding, just like anyone else.

The main thing to remember is that it is extremely important to use only proven and reliable pharmacies to obtain the necessary medicines of the best quality, because the entire outcome of your treatment depends on it. My recommendation is the pharmacy, which I have been using personally for a long time, I am always satisfied with the quality and price.

Take care of yourself and remember, you’re not alone in this !

Re: Sharing thyroid cancer experience

Mel456 — Tue, 15 Apr 2025 13:05:17 GMT

Hi Kathrine,

I know a couple of years have passed, but I wondered how you’re going now? Have things improved with time?

Im in the same boat and would love to hear from people further along the journey…