Breathing and update

7 replies
28 subscribers
5479 views

Hi everyone just an update really and seeking a bit of advice.

I’m a 31 year old male my stage is pt2n1b. I was diagnosed with papillary cancer in may 19 after having a right lobectomy due to a lump on my thyroid. This operation caused my right vocal chord to be injured resulting in a hoarse voice, but recovered over next couple of months. I then had the completion surgery July 19 to remove the rest of my thyroid along with a right neck dissection. 5 of 22 lymph nodes contained cancer. My side effects from these operations where bruising of my parathyroid causing tingling in my hand spreading up my arm. This was horrible but the Adcal proscribed seem to keep it at bay until the glands recovered. I had no feeling in my ear for a few months but even this started to heal and now back to normal. So for anyone who has or will get any side effects, the Human body is an amazing thing and chances are side effects will return to normal with time. I then had rai treatment in September 19, which I found absolutely fine. I had the scans 5 days later which revealed that the iodine had been taken up just under the thyroid bed and slightly above and hopefully no distant spread fingers crossed. I am now waiting for June to see what happens with this to wether I need more rai if any of the disease remains. I’ve been very lucky with my levothyroxine. I was on 175 micro-grams p d, which made my legs a bit restless. My dosage has been reduced to 175 one day and 150 the next day and so on, which has helped with the restless legs. They think this will pretty much be my dosage from now on.

Overall I feel pretty good in my self, to be honest I still don’t think what I have been through over the past year has really sunken in and not sure it ever will. I look in the mirror sometimes and see the scars on my neck and throat and still can’t believe it’s all real, it seems as though the operations where a life time ago.

My main issue at the moment is my throat. My throat seems so tight now and when I get a cold or sore throat it’s even worse. It seems to tighten when I fall asleep and I wake up multiple times in the night gasping for air, which is awful. I have a 3 year old and 1 year old and they’ve always got colds from nursery or what have you. It’s seems as though I get cold after cold at the moment which is frustrating with the tightening of my throat. Im not sure if this is due to the scar tissue from the thyroidectomy or if it’s the remaining cancer. If anyone else has this problem I would love to hear from you?

I wish everyone on here all the best with everything, you are all amazing people and thank you all for your support and advice in the past.

Thanks Dom

Lass over 4 years ago

Heya Dom,

Good to hear that on the whole, everything is going well for you!

Sadly, the extra colds and bus is something you're going to have to get used to. The lymph nodes are part of your immune system, which is why the cancer ended up in them - they were trying to kill it off, so with them gone then the area they've been removed from is more susceptible to bugs and infections.

The tightening is an interesting one. Have you been given physio exercises to do after your neck dissection, and if so, did you do them? It sounds like you've got some scar tissue in there that's causing you some issues, and colds etc will make tissues swell when irritated which will make the tightness worse. It's not going to be remaining cancer, because any thyroid tissue left, cancerous or non cancerous, will be tiny and minute. So I think it's a conversation with your GP to ask about some physio to get the full use of your neck back again. You might find that lying in a different position in bed will stop the gasping too. Pillows to prop you up should help you get a better nights sleep.

Good luck with getting some physio exercises, shout up anytime!

Lass

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

Dom S over 4 years ago in reply to Lass

Hi Lass,

Thanks for the advice as usual. You are always so helpful to others. How are things your end.

Dom x

Lass over 4 years ago in reply to Dom S

Heya Dom S

Not a problem at all, I just do what I can.

As for me, not great. My bloods are all over the place at the min, and I really don't feel well, while being in quite a significant amount of pain. Also, my GP quit with no replacement and I've got a PIP assessment next week because they want to see how disabled I am because they don't believe what I've written on the form or what the doctors told them. So, lots of fun over here!

Lass

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

PhoenixRising over 4 years ago in reply to Lass

Hi Dom

I had a TT in 2017 and then very thorough left neck dissection taking 42 nodes [2 cancerous].

I get the same kind of tightening in the neck as you describe. Often theres no rhyme or reason to it. It can come on in the night as you say and can make my breathing raspy. Also if I get any kind of cough or sinus infection etc I can feel issues in that side of my neck./ Can be quite unpleasant with pain in the left back of my neck [like a sinus squeeze feeling if I bend down]

Whatt I figure it is, is that the lymphatic drainage on my left side has been so mangled and if there is any kind of alert in my lymphatic immune system it all gets clogged up and swells. It can be quite unpleasant with a bad cold, or even if your system is fighting something off. Or often theres no obvious reason for it.

It has got better gradually so I think the drainage systemm may "re plumb" itself to some extent.

Hope this helps you to not worry too much about it. Even though its annoying I think its OK [ive just had an ultrasound and nothing to worry about] . Plus its not too long since your op so room for improvement yet.

If its really bad I find sinutab tablets help as they can reduce the inflammation and it seems to work to let things drain.

Take care

Thyroid cancer warrior

Lass over 4 years ago in reply to PhoenixRising

Heya Phoenix,

Just wondered if you'd ever asked your doctor how to do some basic lymphatic massage?

People often find they get swelling in areas where lymph nodes have been removed, and there's a technique you can use to massage the area and help it to drain.

If you've not, might be worth a question next time you see someone?

Lass

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

PhoenixRising over 4 years ago in reply to Lass

Hi Lass

Yes my GP did refer me to the Lymphatic nurse who showed me how to do it. It did really help in the first year when it was really bad. I dont find I need to do it as much now as it has all definitely improved, but its good have the knowledge of how to do it.

Is probably worth Dom getting himself referred to the lymphatic nurses for some advice. I only got one appointment but they were really helpful and gave me a lot of good info about scarring, exercises and massage.

Hope you are Ok Lass. Sorry to hear you are struggling a bit at the moment ️️

Thyroid cancer warrior

Dom S over 4 years ago in reply to PhoenixRising

Hi Lass and Phoenix,

I completely agree it must be a mixture of removed lymph nodes and scar tissue. Thanks to your advice I’m definitely going to get in contact with a lymphatic expert for some advice and exercises. Im sorry to hear all the problems your going through Lass love your crack on with it attitude.

Anyway wish you both all the best.

Maybe speak to you again at somepoint.

Take care

Dom

More from this forum

Breathing and update