Saying hi

Hi Doreen

I also have metastic papillary thyroid cancer, waiting for my second operation next week and the iodine treatment in July, I am so sorry it did not work for you.  It is a hard to take cancer on board and I also have felt quite alone with it all, I am having counselling through Macmillan, they give you 6 sessions for free, jut google it, hopefully it will help, we all need someone we can talk too

Best wishes with it all, Vicky

So sorry to hear about your diagnosis and the passing of your friend Dozza1 that must be hard when she shared your experiences and helped you emotionally to cope.  I too have metastatic papillary thyroid cancer 60% Tall Cell variant and was diagnosed in June 22, had a TT and central and rh side neck dissection with 60 lymph nodes removed, 14 were cancerous.  I also had my vocal cord destroyed prior to diagnosis and didn't find this out until I saw a Consultant as my voice was fine at that time, but hasn't been since my operation. I had had trouble clearing my throat especially at night time but put this down to my inhaler at the time.  I have a gap in my vocal cords due to the damaged side which is causing me problems at times.  Thing seem to have improved over the 11 months since my op, but I still do not sound like me, I get breathless at times (not too bad and I do have asthma anyway) but by voice gets tired the more I speak.  I have also had a couple of choking episodes so I am now very careful when eating and drinking, even swallowing at times can cause me to cough.  Oh and I can't sing for toffee anymore either.  I had radioiodine treatment in Dec 22 and am due to have another round on 13 July.  I had a tiny nodule in my lung but apparently that has grown to 2.5 cms x 1.9 cms and I now have another 2 tiny nodules as well.  I had to have a lung biopsy as they were unsure if it was thyroid cells or not, but thankfully it was and they think another round of RAI at a higher dose will sort them out.  Fingers crossed.  I am always here if you want to share experiences and if I can help in any way I will.

Hi Vicki

Thanks for getting back to me . I think the feeling of loneliness has hit me harder than I could imagine when my friend died.  I had 2 weeks from work , but after 2 days back  I just felt so flat and tired. I went home after 30 mins , and my GP signed me off for another month . 

I've signed up for counselling through my local GP app, 1st session this Wednesday.. I don't know about you , but for me , it's the feeling of waiting for something to happen .. something I never felt before my diagnosis. Waiting for the 6 monthly scan, waiting for the results , then waiting for the next scan. My consultant has told me further surgery will be required at some point , as the tumour will grow. We are waiting ( there's that word again ), until it has to be taken out . Due to the risk of damage to my working vocal cord, it's last resort type situation.As I don't have 1 in reserve , being that the tumour had already destroyed 1. This could mean a tracheostomy and a feeding tube, something that I'm trying to avoid for as long as I can. I'm hoping that my counselling sessions help me cope with living for the day , and not is what's potentially around the corner..

I hope your further surgery goes well .  Doreen x

Hiya

Thanks for getting back to me .. it's a relief for someone else to understand where I'm coming from , now that my dear friend is no longer alive ..

In terms of your voice / vocal cord..has an injection or an implant in your non working cord been offered ?  I've had 1 injection , and have had 3 surgeries for the implant . 2 local and 1 general anesthesia.. not the results I hoped for . Still raspy and croaky at times , but I don't choke on toast crumbs, or drown when drinking  anymore ..my consultant is writing to a colleague to see if anything further can be done ..and yes my singing voice is absolutely diabolical now . So bad , it's funny ..I've learnt to lip sync quite well.  

I'm starting counselling sessions on Wednesday, hopefully this will help with my fear of something nasty  lurking round the corner for me . I don't know why another round of radio iodine treatment won't work , but seeing as you and another lady who messaged me said , both are going for a 2nd round of treatment, I may ask why not ..

Thanks for sending my a response to my initial message, it's meant a lot 

Doreen 

Hi Doreen, and others,  

So sorry to hear of your diagnosis and your experience.

I have Poorly Differentiated Papillary thyroid cancer with some differentiated cells too. 

As I understand things, radioiodine is only offered if the consultant thinks the thyroid cancer cells are able to take up iodine.  There’s no point in radioiodine if they won’t and could result in unnecessary exposure to high dose radiation.  Everyone and their cancer is different so where one person only needs one dose another will need several and some people’s cancer just won’t respond to it.

You might want to talk to your oncologist about molecular therapy.  Not sure how helpful it would be but if appropriate for you, we are lucky to live in a country that has approved it for use.

Hope this is helpful and that your surgery goes well.

NE

I wasn't offered an injection although I have read about them but have been offered a Right Medialisation Thryoplasty with or without arytenoid adduction surgery, which I was told involves having an implant.  Is that what you have had @Dozza1? This has been delayed because of my further round of RAI, but I was also told at the time that I can cancel this if I feel my voice improves, it is better than it was but nothing like it was before.  I was told that the implant can come out, when I asked under what circumstances he said usually when coughing, which I do a lot, so it does make me think is it worth it.  If you have had the same 3 times and it hasn't helped, it puts me off.  The operation is one overnight stay, no talking for 3 days afterwards.  Does that sound the same as you have had?  As far as your RAI treatment is concerned it does sound as if you might be resistant to the treatment in which case that may be why they are saying another round would not benefit you.  My second round is due to the nodule in my lung increasing in size and another 2 appearing, and my Oncologist said that it is possible that because the uptake of iodine was so good in my thyroid it probably didn't get chance to get to the lung, hence a higher dosage this time.  No guarantees though, just have to hope for the best.  Hope the Counselling sessions work for you and you find them helpful x

Just wanted to say that I was high risk for a tracheostomy when I had my TT and neck dissection, due to the damaged vocal cord, I was extremely scared but was lucky and didn't need it, but being told you a high risk is very scary @Dozza1 and I also agree about the waiting, we just seem to jump from waiting for one thing to waiting for another.  I thought after last year that this year was going to be better and I could just get the vocal cord operation out of the way which should have been in the Spring, but then I end up needing another 2 US sounds, another CT scan with contrast dye, a lung biopsy and a further round of RAI as mentioned earlier.

Hiya

I don't know the correct names, but I had an injection under general in my paralyzed cord in jan 22..they tried under local , but my gag reflex kept kicking in.  The 1st implant wasn't big enough . Had that under local ..took much longer than planned , due to scar tissue ..as my cord had swelling and scar tissue it was hard to determine if it was the right size at the time.  The 2nd surgery was under general , where a larger implant was put in.  Again didn't get the desired results , as still hoarse had croaky after a little spell of talking . After a scan to locate it, it was found to be in at the wrong angle , so hard the 3rd surgery , local again to pull up and stitch into place . The consultant said it's virtually impossible to fall out ..the only reason it was stitched upwards , was due to missing tissue from my original surgery. There was no cessation in talking , infact he wanted me to talk , hence the local so I could count 1-10.. it's still hoarse at times , but much improved and more importantly, I don't have choking episodes on toast dust .. it's definitely worth it in my opinion.  Im waiting to see if a specialist in Nottingham ( I'm in rotherham), can do a procedure to put a stitch in the muscle above the cord to stop essentially a flap of skin hanging in the way . If he can / will perform the surgery, it may be the last bit I need , alongside some speech therapy.

When I had my iodine treatment, the giga counter dropped dramatically over a day . I was told that my tumour in my neck that's there and growing slowly for , now was either missed or it's grown since . They found ' something ' in the bed of the thyroid that they don't think was there on the previous scan. Was told by the consultant I shouldn't feel too worried. I said the fact she said the word  ' too', was a reason for me to worry . This has been put under conservative management, along with the tumour ..

• I feel a little up in the air .. 

Regards

Doreen 

Hiya 

I agree about being told that.. my 1st thought when told I still had a tumour/ or one had grown back was to get out asap.  My husband has been the voice of reason saying currently as it stands i have a 0% chance of a traceoctomy , but have been advised I have a 25% chance of having 1 with a 2nd surgery.. so something to constantly consider .. however the consultant said surgery will be required at some point , just a question of weighing up taking the tumour /nodes out sooner with the risk , or waiting until it gets so big I'm at risk and hang the concern of losing my voice and the ability to eat normally again. It feels like a game of Russian roulette, where more than 1 chamber is loaded . The dilemma screws with my head more often than I want it to . It's so helpful to hear I'm not alone with similar situations and processes to deal with 

Doreen  

I have that problem with my gag reflex too, can't do a COVID test at home and they tried to swab my throat while I was in hospital for something else, and the nurse got cross with me because I couldn't stop gagging.  Hate the sensor thing up your nose and down your throat to your vocal cords too, usually end up with them spraying it to stop me gagging. You do sound to have been unlucky with implants, I think I was warned it may not help my voice but I agree the choking isn't funny.  I choked once before I was diagnosed with cancer, my hubby was in bed and I just swallowed the wrong way in the kitchen and I couldn't get my breath and the noise when I was trying to breathe in was horrendous, it was very scary.  My hubby came downstairs about an hour later and asked if I was ok!  I said well if I hadn't have been you might have found me dead.  We laughed but it wasn't funny at the time.  I had my op at Nottingham Queens Medical and was referred to the voice clinic there, although I go to Lincoln and was diagnosed there, my vocal cord op will be Nottingham again. I was told I may need speech therapy, it was last November when I went to the Voice Clinic and I can't remember all the details now, just the name of the procedure because they posted me a letter out with the details on.  It does sound similar to what you have had done, but there was no mention of local anaesthetic only general but that could be because of the other procedure which they said they may or may not have to do.  Can't remember the details I must look them up again. You have to put your trust in them Dozza1  they know what they are doing and they will monitor you and advise you if you need any further procedures, but I totally get how worrying it is and how panicky it makes us.  I was terrified of my lung biopsy and although it wasn't a nice experience it wasn't as bad as I anticipated.  I had more problems once home from hurting my back the day before, watering the garden with many watering cans, which I was doing to take my mind of having the biopsy.  I was in horrible pain for over a week, one night chest pains from the biopsy, the rest from the back pain, no idea what I did, I always water the garden, but now we have bought a hose pipe and my hubby won't let me do it again.  Must be old age creeping up I think, I keep injuring things that have always been fine, and now keep letting me down.