Extremely worried, long standing multi nodular goitre and cancer risk?

[Izzie68]

I was diagnosed with a multi nodular goitre in June 2003 by scan. At the time I was followed up 6 months later and told I had 'an open' appointment but that my goitre was multi nodular and contained cysts. Nothing more was made of it at my GP's or when I had my son in 2007. The Consultant did say that I was 'unlikely to get away without a thyroidectomy because of my age' (mid 30's then). Over time my goitre has got slowly bigger and is clearly visible, but causes me no problems. Also no one made anything of my multi nodular goitre while pregnant etc.

However I am now distraught to learn that up to 17% of multi nodular goitres contain malignancies and this was never ever said to me. If it had have been I would have gone for checks. I am now not sleeping, very tearful and depressed worrying that after all this time my goitre may be cancerous. I am confused as on the British Thyroid website it says cancer in multi nodular goitres is 'rare' yet up to 17% of cases does not seem an insignificant risk. Yet at the time my goitre was never biopsied. I am now wondering if this was negligent care as medical papers refer to FNA as the gold standard of nodule assessment.

Has anybody else on the Forum been left unfollowed up following diagnosis of multi nodular goitre and is the reported cancer risk real? I am terrified of going for a check up now in case they will find something untreatable and it's too late.

I also suffer with extreme health anxiety and would find it very difficult to go through with a thyroidectomy in case I was in that small % that it went wrong on as I have a husband and young son to consider.

I hope there are people out on the forum who can help me as I am extremely frightened.

[Orangelady1]

Please try not to worry, very easily said I know. Even if it was the worst case scenario, it is very very easily treated. I had my thyroidectomy 5 years ago due to a cancerous cyst, only found by accident, and they thought I must of had it for a while. It is a very slow growing cancer and totally treatable ( and I'm not saying you have this) I would go back to your doc and push to be seen quicker as the stress is making you I'll. I was exactly the same. Pleas let me know how you get on, and remember the majority of these nodules turn out to be benign. X

[SilverAvocado]

I agree with Orangelady, this is a very slow growing form of cancer, and in fact very unlikely to spread. I had mine removed in 2013 and I'm sure I had hypothyroid symptoms for perhaps 3 years before, and who knows how long it had been growing. At the time I was told it had about 4 different characteristics that made doctors very concerned, and they insisted on whipping it out immediately. But I soon realised the risk of it spreading was extremely negligible, and a lot of the stuff they'd said was just to encourage me to have the operation.

I think you should go and have the tests, if only for your own peace of mind, but please also put some work into calming your worries.

A little story about how I coped with my cancer: Years early I'd had a very dear friend who found a lump on her neck very similar to mine. She started going in for the various tests, and over the course of 6 months or so she was so worried she was worn down to a shadow of her former self. I didn't know much about such lumps at the time, so I went along with it, and assumed she had a serious health condition. She certainly looked like she did, she was so pale, lost a lot of weight, and stopped going out. I remember it as a terrible time for her and lots of the people who cared about her. But in the end the tests all came back normal, and it turned out to have all been a scare, she didn't have an op or any treatment. But she really took months to look healthy again, and years to get her life fully back on track.

When I started going in for tests on my lump, I realised I was in the same position she had been. I thought over the awful time she'd had, and realised that what happened to her really was the worst thing that could happen to anyone. At the time I knew very little about thyroid cancer, and whether it would be a death sentence (it's not). But I really made up my mind at that point, before I'd seen any conclusive test results, or read a single page about what I could expect that I was not going to get destroyed like my friend did. That even if I was terribly terribly sick I was not going to let my life be ruined, just different from what I'd expected it to be (I was 33 at the time, so I did feel there were a lot of things I wanted to do that I'd barely started).

In the end mine was cancer, and I did have to go in for almost a year of treatment. And actually, as I've been largely house bound ever since, I suppose I have been terribly ill. But I've also kept my promise to myself to have a good life. And I've never felt that I'm a shadow of myself, or even that my life is much worse than it ever was, even though there are lots of things I loved that I now can't do, and if course there are struggles.

I think it would have been easy to get destroyed, but plenty of things about being ill will try to get you down, without doing it to yourself. I think there is an enormous difference between going in to the tests determined to make the best of it, and going in feeling that if you get the wrong result you will curl up and die. Because this illness won't kill you. And for the majority of people you can go right back to your previous life within weeks, even if you have cancer. Others take a little longer or need a more gentle life.

[SilverAvocado in reply to SilverAvocado]

Sorry that turned out very long! It just makes me very sad to think of my friend and people like her, who suffer so much when the illness doesn't demand that we suffer! I wish you all the best with your results, and I hope what I've said can give you some strength when you're waiting for your tests.

[faith63]

Do you have hashimotos?

[Orangelady1]

Hope you are ok? X

[Izzie68]

Thank you very much for your kind replies. I have been very very anxious, not sleeping and with low mood.

I went to my GP yesterday for a copy of the report on my thyroid in 2003 and to ask why it was never biopsied. My Dr said it was because there wasn't a dominant nodule and my goitre was cystic.

I told her about what I read about the Cancer risk being as high as 17% but she didn't seem too worried and said it meant 83% weren't malignancy. She didn't seem unduly worried why I hadn't been biopsied.

I ended up very upset and am going for a private ultra sound scan this morning as there is a 6 week wait on the NHS and I can't go on waiting and feeling like this. I am also going for a thyroid function test on Monday.

I don't know whether I am doing the right thing or opened a Pandora's Box that will lead to further interventions or treatments. I couldn't face a Thyroidectomy as I would be terrified of it going wrong. My anxiety is if the scale.

Please think of me.

[Izzie68]

Hi Faith

No I don't have Hashimintios, my last test some years ago showed I was euthyroid.

Many thanks.

[Rronsha]

Hi izzie68, i know your post was a while ago, but just wanted to know how you finally got on. In going through same thing right now and waiting for a scan, i had camera up my nose to check my multinodular goiter and im scared too, as it has grown near my vocal chords, i hope you are good and well😍xx

[Lora7again in reply to Rronsha]

I have a multinodular goitre but none of my nodules have increased in size in the last 10 years. Once you get your scan results make a new thread and post your results so members can help and advise you.