I was born with a large cavernous hemangioma on my face. One of the treatment methods was radiation therapy.
Recently an ultrasound scan showed that I have a thyroid tumor. I was not particularly nervous about it, I signed up for a biopsy and waited calmly for the results.
But now I found out that people who underwent radiotherapy of the head before the age of 5 are particularly vulnerable to thyroid cancer and... it upset me a lot.
Not only that my chances of a bad biopsy are increasing, but also that I've suffered so much from this hemangioma, I have depression and anxiety disorders, and now I would have thyroid cancer from it too? It makes me so angry!
This is illogical, but I am more angered at the reason for a possible cancer than the possible cancer itself. I don't know what to do with these weird emotions.
Firstly, its great to welcome you to our community! It's wonderful to hear from you.
I must apologise first. I had to look up what a hemangioma was to understand this more. Am I right in thinking this is a benign form of tumour?
If so, then its not illogical at all that you are somewhat upset.
It sounds like the treatment something benign might have led to something more serious. I would say that would probably upset MOST people. I say "might" as with all risks, you can never be sure one thing is the true cause of another, but it is clear why it is a real possibility.
Another thing that might not be helping you is the fact you were only 5 when this was treated. At that age, the decision would have been made for you, and not by you. If you had made this decision yourself, then it might be easier for you to deal with. This could be particularly so if your parents made the decision, only wanting the best for you, Would anyone still do that if they thought the outcome might be this? It is difficult to believe that they would.
I cannot presume to tell you how you should think or feel about this. Only you know truly know how you feel, and things like this can be very hard to get into just the right words.
But I do wonder whether Doctors would now still offer this treatment to a patient of only 5 years of age. If not, then it could be that Doctors have learned from this kind of experience and improved treatment.
Not that that helps you, its just a thought. So many things that were treated one way in past years are now treated very differently.
But honestly, I find myself not in slightest surprised when you say " I am more angered at the reason for a possible cancer than the possible cancer itself".
Medical conditions frequently have successful treatments. But going back and changing past decisions which affect how you feel, well that's not possible!
So what you say actually makes good sense to me.
Wishing you every success in whatever you need to do to progress with this. Do keep us posted as we shall be interested to hear in how you get on.
Best wishes.
CB
• in reply to
Thank you for your thoughtful reply, that's very kind of you!
Yes, this hemangioma is a benign tumor, but in my case it was VERY large and required treatment - I don't think it was inappropriate that it was implemented then. Although radiotherapy is no longer performed in such cases (I think), mainly due to the increased possibility of skin cancer in the face. Those were different times, ~ 1990. Nobody warned me about thyroid cancer, I didn't even know that I should have regular checkups.
I think it's sad for me that so many elements of my life and identity have been established at a time when I could not speak yet. It makes me feel like I have limited influence over my reality - maybe that's where the anger comes from. It seems like I keep going back to square one, the first year of my life.
I really shouldn't even worry about it - nothing has been diagnosed yet, but waiting for results is just stressful. I will report the results!
• in reply to
You're so welcome.
This makes perfect sense. The fact that something is benign doesn't mean it should not be operated on. Some things are just too much of a nuisance to leave them be (i have a scalp cyst the size of a tennis ball pretty much. Medically, no problem but it is a nuisance for sleeping so it is a "quality of life" issue rather than a medical one).
It is a worry that the need for check-ups wasn't picked up. From what you say, it sounds like the treatment plan has changed over the years. Without making excuses, this is possibly the reason why it is wasn't. It does sound though like you have this firmly on your radar now though.
Rather than being sad your identity formed when you couldn't speak yet, respectfully, then I'm not sure how true that is!
Lots of parts you are set a birth, sure. But you will have seen lot of life in the 30 years of so that have elapsed since 1990. I know I have! The grey hairs have started, I've gotten married, I've travelled .... and so on. very few of us truly are the same person at 36 that we were when were young.
Your identity evolves with you, though in fairness, I didn't really think about this myself until a few weeks ago when I had to speak with an occupational health adviser, and I had to give them a potted history of me. Only doing that did I realise how far I am from the 18 year old version of me.
You have lots of choices over life. We all do, and for most of us (including me), we usually have more choices over our lives than we realise.
Its only when we talk, we listen and then give ourselves time to think that we realise we have more choices than we thought we did. We always have control, though I confess, it does not always seem like that!
As ever, if you need us, here we are. With fingers crossed for your results.
Best wishes
CB
• in reply to
That scalp cyst sounds pretty uncomfortable, I'm sorry you have a hard time getting a good night's sleep.
The hemangioma was very convex and covered my eye, making it impossible for me to see binocularly. It was also very easy to damage - each scratch resulted in heavy bleeding. It was also just an... aesthetic problem, that made difficult for me to function normally. Appearance also affects quality of life, even now, when I look much better. You probably experience it too.
Well, I'm exaggerating a bit for the drama - I understand it's not my whole identity, maybe just a much larger part of it than I would like. This is how I feel it. Maybe it's also okay sometimes to reflect on what was 30 years ago...
Thanks for your post and sharing about your story with us.
It sounds like you are in a situation where you are having to wait and feel uncertain about what the results are going to be, which is giving you a lot of time to think about the past and the future. It feels quite understandable that you are having a lot of mixed emotions right now.
I hope this space gives you a chance to connect with others and feel supported through this time.
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