Surgery, Radioactive iodine or Radiotherapy?

I am sorry to read about you Cancer journey and especially when things seems to be going so well for you at first and then to have it come back again.  I am sorry I can't help but fully understand what a struggle it must be to make a choice as to what to do from here.  I have had RAI just before Xmas and still waiting for results of the body scan which I have an appointment for on the 14th Feb.  Also have an appointment on Monday as I received a phone call yesterday asking me to go in following an Ultrasound scan recently as I have a lymph node which is raised, which I was told at the time of the scan it was nothing to worry about, then got the phone call yesterday.  Well done on your fundraising for MacMillan and I hope you manage to do the Marathon in April @HiFly

It feels like a never-ending journey with all the waiting and tests doesn't it. It took ages for my scan results after my first RAI but I imagine because of the Christmas holidays you've had to wait longer. Fingers crossed with your scan. 

I've got an appointment on the 17th Feb where we'll decide on the next steps. My family are asking me to get a second opinion, not because they don't trust my team - we believe they've genuinely done as much as they possibly could, its just tougher than expected - but so that it helps these options mentally settle in. I cant be bothered going through all that hassle though right now.

I got my appointment letter last week saying they were sorry they had to cancel the appointment for the 2 Feb but it would now be 14 Feb @HiFly.  It would have been nice to have received a letter for the appointment on the 2 Feb, but it was the first I had heard.  I suppose it could be lost in the post, but this is the second time they have changed appointments and I haven't known about the first one.  I know the NHS aren't having a great time at the moment though, so I am happy that they are seeing me at all and feel I should be grateful.  Meant to say in my last message that my vocal cords are damaged, one side is paralysed and was damaged by the tumour prior to my op, but I was speaking normally.  Since my op my voice is poor and I get breathless and phase out if speaking a long sentence, I cough and choke if not careful, not just when eating/drinking it can be just swallowing the wrong way and is quite scary as I can't get my breath.  I am waiting for an operation on my vocal cords to fill the gap as they don't meet at the moment, so hopefully will improve things although not guaranteed.  

I am wondering whether your hospital might have an electronic system so that you can see appointments and results and communicate with the hospital?  I have this and it is enormously helpful.  Ours is called mychart.

 I had my second RIA last week.  Hated the isolation so much but otherwise it was ok.  I am hoping that nothing much will happen now until they rescan in 6 months.  I am avoiding surgery if I possibly can.

This cancer which initially appears straightforward seems much more difficult - and like you Petal66 I have tall cell - 50%. I’m 61.  I think the future is going to be bumpy.  

I hope you don’t have to wait long for the surgery you need.  X 

I have access to Systmonline where my Doctor's surgery post the results when they get round to posting them, but they haven't been that good with blood test results lately and the last 3 tests still not showing.  It also shows copies of letters sent from Oncologist/Surgeon etc but by that time I usually have a copy myself in print.  I also get access to appointments from drdoctor.thirdparty.nhs.uk but that is usually just showing an appointment, haven't seen any test results on there @Gold Finch.  I haven't heard of mychart before.  I agree it doesn't seem that straightforward at all does it, you initially think surgery, then RAI and that's it, but it seems it isn't always the case.  Hope you are feeling ok after your second round of RAI and it works for you without the need for further surgery.  I am seeing my Oncologist on 14th March so should know more about my scan after my RAI which was just before Xmas.  I still don't know whether I actually have 60% Tall Cell or whether that was unclear and not definite, which is what I thought she said at my appointment, but my letter states 60% as if it is definite when I read it again.  Also have another appointment with my surgeon on Monday (they rang me yesterday to ask me to go in).  It's such a fath too as it is 65 miles away and with no transport have to book hospital transport (usually a volunteer).  Last appointment for an Ultrasound a couple of weeks ago they never turned up.  I eventually got someone else who came but we were 2 hours late for the appointment and nearly got sent home even though transport rang and told them there had been a problem.

 Petal66 I relate to the transport, I currently live near Milton Keynes for MSc study but my team is up in Leeds. Most my appointments are over the phone but scans/blood tests have to be done up north. I can’t believe no one showed up for one of your scans though, I can’t imagine the stress you would’ve felt. I really hope they get that surgery done for you, must be really difficult and can’t even think about how scary it must be when you can’t get a breath. 

 Gold Finch completely agree with the isolation being awful. When I had mine I was the only patient and super lucky as everyone planned for treatment after me had been cancelled due to covid. It also meant no one could visit and nurses couldn’t even stay in the room for longer than a few mins to drop off food. After I left the treatment ward got turned into a covid ward :( don’t know about you but the diet was very difficult and depressing too - I love Yorkshire tea with milk too much!

I’m going to have to enquire about an electronic system with results, would be great to look back on.

Thanks @HiFly and that must be a bit of a nightmare for you studying and going through all this and Milton Keynes is a long way from Leeds.  I am fortunate enough to get my blood tests at my doctor's and am being contacted by the Hypocalcaemic Clinic from Nottingham regarding results and any changes needed to medication for Calcium/Vit D. I am off Calcium tablets now though as things sorted themselves out thankfully.  I used to live in Bradford years ago so know Leeds well, and also studied with the Open University in Milton Keynes, although studied remotely, we did spend a weekend at Milton Keynes which was an open weekend event.   

It’s making the decision over the next steps tough. I’m wondering if I have radiotherapy over 6 weeks if I could have it closer to where I currently live without going to Leeds. A lot to take into consideration. I tried once to get my blood tests done locally at my GP but it got too complex and took 3 months to get results after they were initially lost. Did you have to have some parathyroids removed too, hence the calcium, or just unlucky they got affected? 

I don't know whether any of my parathyroids were removed, keep forgetting to ask.  I did go to see the surgeon yesterday and he was asking about my Calcium levels which he said were good when I told him and that I hadn't been on Calcium for 2 or 3 months now.  He also said there was nothing to worry about based on my scan a couple of weeks ago, and felt all around my neck as he said he likes to make sure as well and agreed there wasn't anything he felt was a problem, just the healing process takes time. Re-reading through the thread again @HiFly and looking at your options which of course is your decision.  Based on my experience of vocal  cord damage I would dismiss that option especially when you say it would be your 3rd operation and could be risky.  Radiotherapy from what I have read can be ok at first but you can feel extremely tired the further in you get with it, but I guess you don't have much faith in RAI treatment seeing as it hasn't done a complete job in eliminating your Cancer.  I hope you can come to a decision, and hope someone else comes in here who has experience of Radiotherapy who can give you more information based on their own experience.

Great news that he feels there’s nothing to worry about!. Occasionally I’ll feel something in my neck which is lumpy, but when I get it checked it turns out to be scar tissue. Healing takes time but I think the thing that takes longest to heal is that immediate anxiety you get when you feel something odd! 

when I was thinking about the surgery option I thought it would just be a risk of husky voice but after a lot more research I’ve realised it’s a lot more than that. The other thing which makes this whole decision super tough is that I need pass a medical standard to get my pilot medical back. It took me 2 years to get it back after the first surgery only to be grounded again. It’s stopping me applying to jobs and keeping my flying skills current. I’m in discussions with my Aviation Medical Examiner at the moment who’s trying to help answer a lot of my questions, but as far as I’m aware;

- if I go for surgery and there’s no complications, great I can get my medical back. If I get speech complications I can’t get my medical back, so no more flying. 

- if I go radiotherapy, it’s more likely to stop the tumour growing rather than cure it. I have zero idea whether I could get the medical back whilst living with cancer without serious and continuous follow up measures. it was difficult enough to get the medical back when I was seemingly cured of cancer the first time, never mind living with it at bay. I’m in the running for a job at the moment where if i’m successful I need my medical by august. I was on track to have that prior to this third recurrence :( 

I keep having to tell myself that health comes first and I can still do other things in life except flying, but flying is the one thing I dream about at night. A lot more information needed from different doctors before making this decision, but it’s difficult to separate my head and heart choices. Never mind my uni studies, booked holidays and the marathon I want to take into account! 

but the doctors have already eliminated a second round of RAI treatment because in hindsight I think we’ve all realised the low uptake in the neck was not because there was little cancer left because it wasn’t actually working.