I know I have been very fortunate in that my follicular thyroid cancer was found while it was still small and hadn't spread to my lymph nodes; I had a partial thyroidectomy a couple of weeks before Christmas and have been told that no further follow up is needed, except an ultrasound at 6 months post op. The incision has healed well. But... I can't stop thinking about the fact I had cancer, and it is playing on my mind. I feel tearful and lethargic, and am struggling to find motivation or energy to do anything. I am wondering whether I need to talk to someone, although I keep telling myself to pull myself together. The extreme fatigue doesn't help and I am hoping the endo will review my thyroxine dosage and adjust it so I feel better physically. Has anyone else felt like this, and found anything that helped?
I'm really sorry to hear that you are struggling after your op and diagnosis.
I was diagnosed with Follicular Thyroid cancer in February after a hemithyroidectomy, much like you.
I have REALLY struggled with depression as my world has been turned upside down because of the cancer. I have had to quit my 11 year career and start over after my vocal chord was paralysed during the op.
I definately feel that talking to someone will help you. I went for a routine blood test at the doctors and she asked me how I was coping with everything almost a year since the diagnosis. Well, I completely broke down. The thing is, after the initial shock of it being the big C, I received no emotional support at all and had the feeling that I was supposed to just get on with everything and be grateful that it wasnt more serious. This was very difficult for me because I felt like I didnt have the right to be upset, that only people with the "bad" cancers were allowed to feel depressed and down. This paired with the niggling feeling that the cancer could return is enough to drive anyone insane.
I haven't started councelling yet but I have an appointment in the new year. I strongly advise you to talk to your GP if you are feeling depressed. Its not surprising that you feel like this after everything you've been through and it will take time to process all your emotions surrounding this.
I hope that you feel better soon and have a positive new year.
Hi Lumibear - Thank you so much for your reply. I am so sorry that you have had such a hard time especially with the problems with your vocal chord. My voice has been affected - the tumour was pressing on the vocal nerve and although it is better after the op, I still sound a bit husky and cannot sing (I was in a choir). I am a teacher and haven't been back to work properly yet, so I am not sure how it will affect my teaching yet.
I totally agree that, because it isn't a "bad" cancer, people seem to think it is over and done with, and that I should just feel gratitude that I don't have ongoing treatment etc. I think you are right though - counselling / being able to talk to someone who won't judge and doesn't have expectations of us being grateful but is willing to give us the opportunity to talk about how we genuinely feel would be helpful. I also keep worrying about whether they have missed something, whether it will come back etc. I don't know how long it will take for us to feel less anxious about a recurrence.
I so appreciate your reply though, because I now don't feel so alone, so thank you so much. Warmest wishes for the new year, and here's to a better 2020. Big hugs, Lumibear.
So sorry you went through that.
I got diagnosed with depression 2 months ago and it was during a physical examination that a psychiatrist noticed a lump on my throat and advised I get that checked asap. She said thyroid problems are a danger where mental health is concerned because thyroid affect mood and other things.
I had the hemithyroidectomy on Xmas last week and awaiting further lab test to see if it was malignant.
I totally understand how you feel about people overlooking or undermining feelings around that. I've stopped talking about it because everyone seems to think it's ok. Sure I haven't had to hear the c-word yet, but I'm 32 and my idea if my life at this stage wasn't undergoing painful surgery and lose half my thyroid...
I'd definitely advise you get checked for depression and request counselling. I waited too long until I reached a breaking point and in hindsight regretted it. If you feel low mood, depressed, anxious, it is worth talking with a pro about that and also, not undermine hiw you feel. It really isn't as easy as "get a hold of yourself". :) there are concerns around your private life, a diagnosis that whatever people say *is* scary and uncomfortable and dreadful, and concerns around finding your quality of life back.
Do make sure you get checked for thyroid function and levels too in case it affected you also on that level.
I hope you get better soon !
Thank you for your reply. I think I read a post from you on the forum and your situation seems similar-ish to mine. I didn't get a confirmed diagnosis until after the op because the fine needle biopsy hadn't yielded any results. My consultant had intimated that he thought it was cancer but was vague enough to cover himself - he proposed that I would have to wait 4 weeks to get the results. I was very unhappy with that and pushed for the results more quickly so in the end I got them after a fortnight. That period of waiting was dreadful - it was all I could think about and the more I thought about it, the bigger an issue it became. I had pretty much convinced myself it was the most malignant, aggressive, and non-treatable type there was (which it wasn't!). The impact on my family while we were waiting was also quite devastating. So, I totally understand how you are feeling - don't let them drag out giving you the results. I was told by another patient that the "squeaky wheel gets fixed first" (making lots of polite noise is good to get treated earliest).
I hope you get (positive) results soon - and I am definitely looking into counselling. I didn't know about thyroid affecting mood, only about it affecting energy levels, so this was really helpful to know.
I had a total thyroidectomy in October 2018 due to two cancerous lumps and finished my treatment last January.
Although it now seems a long time ago when looking at the dates it still something that is hard to come to terms with regardless of what type of cancer you’ve been diagnosed with.
For me personally the tests, the waiting, the op, more waiting and the further treatment all takes it toll. As you worry yourself silly.
When I got diagnosed and before my op as morbid as it sounds I got all my affairs in order so my husband and son were covered but that made me feel like I was taking control a little in the situation I had no control over.
I had no energy after the op and was falling asleep all the time and it felt like I would never get back to some sort of normal. Luckily my work are really good as I get sick pay as I couldn’t face adding work into the mix too while dealing with this.
I’ve been back at work but on reduced hours since May and so far I am managing and you start to feel more like your normal self but it just takes time.
Take advantage of speaking to someone as I think this would have helped me at the time. Although you have people around you they are affected too and it’s difficult to discuss how you really feel as if you’re like me you just put on a brave face which I think can just add to the situation.
I think what I am trying to say is that there is light at the end of the tunnel and things should get better with time.
Hey there Northwind
How are you feeling now? Any better at all?
I just wanted to pop in with a little bit of info for you.
So, roughly 8 weeks after your operation date, I'd suggest asking your GP for a TFT - thyroid function test. This will check the hormone levels in your blood to make sure that the remaining half of your thyroid is picking up the slack and making enough to keep you fully functional. Usually it does, but now and again it does slack for some people. So always worth a quick check.
Also, when you posted your original post, you were still full of anaesthetic. Those sneaky little drugs like to sneak into our fat cells and so are slowly released as our bodies break down those cells. This means that for a good month or two after an op, you can feel really knackered and low. So fingers crossed that you'll slowly be getting all of that out of your system now and are feeling like you have a bit more energy.
Don't be surprised if you don't get an ultrasound appointment in 6 months time. They're usually more like 9 - 12 months after. If you get beyond 12 months without one, do speak to your GP to get you referred for one.
Then we come to the mental side of a cancer diagnosis. The specialists forget more often than not, that you've been diagnosed with cancer and this is a big thing for you. To them, you were a simple and straightforward case, so there's nothing to worry about or be concerned about - because they see so much worse than what you've got. While for you, this is life and mind altering. Now, when it comes to talking to someone, that's pretty much been cut from the NHS unless you're to the point of harming yourself or others. It's very much a postcode lottery as to if anything is available to you or not, and here in Leeds for example - there's nothing. What might be of better use is going down to your local MacMillan or Maggies Centre. There might be someone professional there to chat to, or services offered, but if not then there's at least someone not emotionally involved with you. Then of course, there's us here too. Alternatively, if you can afford it then there are plenty of psychiatrists, counsellors, etc that you can pay to see if you feel you need it.
I'm hoping things are on the up though, and please do shout if there's anything we can help with!
Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh
Thank you for your reply....I guess the one year anniversary is quite a big deal in some ways and yet in others, it probably just adds pressure to think that you should start to feel better. You are right - I haven't been talking to my family because I don't want to burden them, or for them to feel that I should be able to get on with my life now it is all sorted.
I am hoping that being back at work will help give me a sense of normality but at the moment I just feel so tired, and tearful! I am seeing the consultant tomorrow so hopefully he may have some suggestions.
I hope you are doing well, and that the start of this new decade is the start of positive improvement for you.
Thank you so much for taking the time to post on here. Actually, you gave me more helpful information than the GP or the hospital. I wish I had known that it was normal to feel rubbish after the op - I have never heard that before about anaesthetic - I thought it was out of your system after a few days to a week!
I did try to point out to my consultant that, while this is pretty routine and normal for him, it is anything but routine and normal for a patient! Unfortunately, he just got shirty with me for questioning him and for not understanding his coded hints. He wanted me to wait a month for my biopsy results because he was going on holiday and it wasn't convenient for him to see me or to hand it to someone else!
I have decided to speak to a counsellor because other people's experiences seem to indicate I may regret it if I don't, and it may help me move forward. I really appreciate everyone's support on here.
I have a suspicion that doctors don't necessarily tell patients how rough they might feel, because there are some worst case scenario types who would say they felt that way, even when they didn't. Or would develop those issues, because they were expecting too. So by not telling patients things, it hopefully means they only deal with the real cases - even when there's nothing to be 'dealt with'.
Unfortunately, some specialists have a bit of an ego. So when you try and point things out to them, they can get a little bit shirty because who are we to tell them anything. And that's the other thing, nothing moves quickly when it comes to thyroids, because more often than not, whatever we have won't move quickly either. You do learn patience on this journey, myself more than most! lol
I think it's always good to try things out if you think they might be of use. I tried speaking to someone, and for a while it was good. However when she started with the 'close your eyes and imagine a healing colour, now imagine that colour surrounding you and healing your feelings, chasing your fears and worries away' etc etc, I noped right out of there. lol. Different counsellors have differnt styles and techniques, so hopefully you'll find one that works for you and you find it helps you with those thoughts in your head!
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