Has anyone decided against surgery for thyroid cancer?

Hi all, 

I was recently randomly diagnosed with papillary thyroid cancer - having been checked for something else the ultrasound stumbled upon this. I am asymptomatic and my surgeon has suggested surgery to remove. We have also discussed not having surgery, as apparently some people opt out of this and have lived on. 

Was wondering if anyone else is considering not having surgery or didn't have surgery and is still living with their cancer? 

Thanks, 

Sophia 

  • Mine was only diagnosed on histology after the initial surgery. The biopsy showed something different. Had I not had the surgery, I wouldn't have known. To be honest, my first surgery was fine and in my case, gave me my life back because I did have symptoms. The part that was difficult for me was the radioactive iodine. 

    Not quite the same situation but just something to think about. Good luck xx

  • Thanks Riboville. Can I ask why the radioactive iodine was difficult? Speaking with my consultant yesterday I understand now this may be something I have to have now. Is there anything you wish you'd known prior?

  • You have been given one of the greatest gifts that life can offer – an early diagnosis of a cancer that’s been caught before it has had the chance to do any great harm. PLEASE don’t waste that gift. Ignoring such a diagnosis and choosing not to get surgery is like being told that the brakes on your car are in need of attention and deciding to keep driving for another 30000 miles because it’s probably going to be ‘OK’. Ignoring your diagnosis is not going to make it go away. Please think very carefully about avoiding surgery.
    In the early stages, removing your lump and getting treated is simple. Leave it a few years and it might not be.
    You also mention that you might need RAI. That suggests that this isn’t a teeny tiny lump we’re talking about. IF your medical team think RAI might be on the cards, please don’t mess about. Get the surgery.

    I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

  • Yep, thanks for the advice. Have decided to have the surgery. 

  • I have had lots of complications. Blocked salivary glands and tear ducts. I also now have a really sensitive tummy and my diet has had to become more and more restricted...I don't know that it is all related for sure and maybe I was just unlucky...or maybe naive. There are pros and cons to everything I guess

  • I am one of those who have "postponed" the surgery, for a few years now. I have instead embarked on a health journey, learning and practising how to attain and maintain a healthy body. 

    • adopting a low-fat, plant-based, whole food diet, organic where possible - detox & nourish
    • learning what it takes to have deep, restorative sleep - our body heals best when we sleep well
    • having some form of exercise outdoors, in daylight, daily, even if it's just 15 minutes - sunshine and movement are healing
    • breath work, meditation, yoga, saying "no" - de-stress

    All of these I've learnt, and continue to learn, from many many people I have found "virtually": podcasts, books, webinars & websites.

  • To anyone reading, please note that there is absolutely no scientific proof that any of what yippee is doing works. In fact, choosing that path over modern medicine often leads to the situation worsening, and worst case scenario - death.

    Complimentary treatments are fine, if discussed with your team, alongside the medical treatment needed. They should never replace it.

    I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

  • Really interesting to hear. 

    Do you mind me asking, since following your own approach have you felt better/ not noticed any symptoms? 

    Also do you have regular check-ins on your cancer to see if it’s reducing/not growing? 

  • Tumours don't grow to noticeable size overnight. I don't know how long I had been "incubating" the tumour. Now having learnt about hypothyroidism, with which thyroid cancer share symptoms, I would say I have better thyroid function these days than before my cancer diagnosis. These are the more notable improvements.

    1. I no longer have cold hands and feet, especially in the winter. I used to have to wear socks in order to fall asleep in the winter, even with the heating on and under heavy duvet. 

    • One of the physiological functions of thyroid hormone is regulation of body temperature.

    2. My first thyroid blood test showed significantly high level of anti-TPO (thyroid peroxidase) antibodies. This gradually calmed down to within "normal"/low level one year and a half after I started my health journey. This stays low from my most recent blood test taken this year.

    3. Dry skin. My skin used to be so dry it cracked during the dry winter season. Now I put on minimal moisturiser year round.

    No. I have not been bothering my surgeon & endocrinologists for check-ups. They have left me totally alone. I once thought my GPs did not know about my cancer diagnosis, but everything is on file.

    I have to proactively ask for prescription of regular blood tests, and to learn which tests are important to follow up on, including certain nutritional parameters. 

    My thyroid blood test results are so far within "normal" range. I just learn that there's an "optimal / healthy" range, which I am not yet in.

  • You've done a great job getting your thyroid function improved. BUT I'm going to disagree with you that thyroid cancer shares symptoms with hypothyroidism. That's only true in as much as if you've had your thyroid removed, you would get symptoms of hypo because you don't have a thyroid. One of the worrying signs pre-diagnosis is often that you have a lump but your thyroid function appears to be absolutely normal. That was my case. 


    Great that you have worked on that problem but seriously, don't turn a blind eye to the thyroid cancer. If you do indeed have a positive diagnosis of thyroid cancer (most likely papillary), your cancer really isn't going to care about what a great job you're doing in keeping your thyroid happy. And it's also not going to go away.

    Also, don't assume that because something is on your file that your GP has read that file in enough detail to be aware. 

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous