topic Re: 23yo with recurrent thyroid cancer in Living with cancer

23yo with recurrent thyroid cancer

chatterdog — Wed, 30 Jan 2013 11:10:02 GMT

Hi everyone, Not sure if I will get a reply, but I'm really in need of someone to talk to. I was diagnosed with papillary thyroid cancer when I was 18, I had surgery and RAI. It wasn't easy, but I trusted in my doctors when they said that I was extremely low risk for recurrence, and this was almost certainly a one-off thing. I didn't even really feel like it was 'real cancer'. Anyway, last year, I found a swollen lymph node in my neck, and when it didn't go away for a while, I had it checked and it turned out to be cancer, so I had a neck dissection which was a far more difficult surgery than I was expecting. I suffered some nerve damage, so have limited use of my right arm, and get bad shoulder pain. Currently doing more tests to see what the next step is. It feels like every day is a battle, and that it's gone on for so, so long, even though it's only been about 4 months since I was re-diagnosed. I can't help but fear that the cancer is just going to keep coming back... My partner has been amazing, but it's starting to take it's toll and things are very strained between us. To him, I look better, I'm physically able to do most things, so he forgets that I'm still sick and struggling mentally with all this. Financially it's tough too. I have a decent full time job, but I am employed casually, so no sick leave and no pay for the 3 weeks I was off work, and the last 5/6 weeks I've only managed half days as my physio I'll do more damage if I try and 'push through' my shoulder pain. Every few days there's something else to pay for, and I just had to buy $2,000 worth of thyrogen injections because the PBS doesn't think it's essential!

Re: 23yo with recurrent thyroid cancer

kj — Thu, 31 Jan 2013 07:12:28 GMT

chatterdog Very sorry to read of your situation having Cancer at 18 years of age and then to have it return again Would be shattering for everyone concerned ,I am sure every day is hard however that is the way of people diagnosed with Cancer ,sometimes when you look ok people do forget what is happening inside your body and how you are feeling it would be very hard on your partner as well. Hoping that you get more favourable results from your test,good luck for the future kj

Re: 23yo with recurrent thyroid cancer

chatterdog — Thu, 31 Jan 2013 07:18:06 GMT

Thank you for replying kj, you are very kind. I hope you are well.

Re: 23yo with recurrent thyroid cancer

kj — Thu, 31 Jan 2013 07:58:24 GMT

chatterdog Yes I am not to bad thanks I take It one day at a time fortunately my medications are not expensive like yours so I don't have that burden to worry about as you and your partner do, that can throw extra stress as well as what you are facing kj

Re: 23yo with recurrent thyroid cancer

chatterdog — Sat, 02 Feb 2013 05:15:39 GMT

Thanks kj, luckily this is just a one off medication purchase, so it could be worse. Still, weekly appointments with my specialists and physio add up, and medicare doesn't even cover half, and I have missed a lot of work and the pay that comes with it. I could have kicked myself yesterday... I had to have a radioactive pill in preparation for a scan, and completely forgot that I was supposed to fast, and I'd just had breakfast!! So drove to the hospital thinking that I'd probably have to have the $2k injections all over again and I had screwed it up. Thankfully, they were still able to give it to me, I just had to wait for my stomach to empty.

Re: 23yo with recurrent thyroid cancer

maddie86 — Sun, 03 Feb 2013 11:28:34 GMT

hi there it must be so hard for you to go through this at a young age... i lost my partner but was with him for the 2 years he battled cancer and i know how scary it can be. As his partner i hated seeing him so down and scared it made me frustrated because there was nothing i could do to help him... when he was happy i was happy... dont give up and keep fighting! i hope that it will soon go away for you.. cancer puts everything on hold! pm me if you ever want to chat... xx

Re: 23yo with recurrent thyroid cancer

chatterdog — Mon, 04 Feb 2013 10:02:28 GMT

Thank you Maddie for replying. I am so sorry for your loss. I had my whole body scan today! Relieved this week is over. It was a real hassle having the injections, blood tests, radioactive pill and scan when work is so busy at the moment. Just an ultrasound to go, and then I get the results next week. Fingers crossed.

Re: 23yo with recurrent thyroid cancer

kj — Tue, 05 Feb 2013 00:48:04 GMT

chatterdog good luck with your results next week kj

Re: 23yo with recurrent thyroid cancer

chatterdog — Sat, 09 Feb 2013 00:52:08 GMT

Not good news. I wasn't supposed to get my results for a week, but it turns out I have another 3 lymph nodes that are almost certainly another cancer recurrence, which means more surgery. I am waiting to see my specialist on Monday morning (found out late on a Friday afternoon) to confirm with all the other results, but the doctor who spoke to me on Friday seemed pretty sure. I am still hoping it is all just a mistake though. I really can't imagine having more surgery, when I am still not recovered from the last one two and a bit months ago. I'm so scared. I was always told I had a really good prognosis and it was unlikely to ever come back, but here I am again. I was supposed to start my doctorate in a week but now I am not sure I can.

Re: 23yo with recurrent thyroid cancer

kj — Sun, 10 Feb 2013 02:17:44 GMT

chatterdog Sorry for your bad news keep your fingers crossed, that when you see your doctor that the news is a bit more positive and you continue on with your studies . kj

Re: 23yo with recurrent thyroid cancer

michele1960 — Sun, 10 Feb 2013 04:39:52 GMT

Just read through your posts Chatterdog 😞 wow that's so much to deal with, I'm sending heaps of positive thought for your results tomorrow. Stay hopeful and if the news isn't what you want to hear you sound like a strong person that's ready to go in and fight it, all guns blazing. You're only a couple of years older than my daughter , so I feel so sorry you have to go through all this! Good luck xoxo

Re: 23yo with recurrent thyroid cancer

Cora — Fri, 19 Apr 2013 14:48:46 GMT

Hi chatterdog, I am really sorry u had such bad news. I am going through something very similar at the moment. I got diagnosed with thyroid cancer when I was 23, I have had 2 surgerys and 3 iodine treatments. Some nodes showed up again 6 months ago and have grown since then. My specialist wants me to wait another 6 months before I do anything. I am really finding it difficult to continue my life as normal as I have been told to do. I'm so scared it will spread somewhere else. Everyone says this cancer doesn't grow but mine and yours seem the same. I would really appreciate it if u could let me know what your specialist suggests to you. Keep strong and positive. :)

Re: 23yo with recurrent thyroid cancer

chatterdog — Sat, 20 Apr 2013 00:53:12 GMT

Hi Cora, Yes, it does sound like we are in a similar situation. So, what has happened since my last post.... The ultrasound doctor found those three nodes, but my specialist was sure he was wrong, she couldn't believe it had spread to more lymph nodes. But they had, the biopsy came back positive on all three. The good news was that my surgeon thought that since they were in a tricky spot and quite small it wasn't worth operating. So I had radioactive iodine two weeks ago, and we'll just wait and see now. They ended up finding a fourth lymph node in a different spot, but again, very small and not worth operating on. My specialist also seems to downplay the risk and keeps saying that I don't need to worry because it's still a slow growing cancer.... but I've now had six lymph nodes with cancer pop up very quickly, so what's the deal with that?? She's consulted with other doctors who say the same so I guess I just have to trust them. But whenever I go to have a biopsy she says she'd be so surprised if it comes back positive, and it does, so I feel like she doesn't really understand what's going on, is insistent on maintaining that my cancer is like all other thyroid cancers but it doesn't seem like it is. But it is incredibly hard trying to settle back into normal life and not be dominated by the cancer. I just assume that they will find more lymph nodes, because every scan I have had in the last 6 months has found more cancer. It feels like only a matter of time before it spreads somewhere else in my body. Maybe not for years, but I am only 23, I have a lot of years left!

Re: 23yo with recurrent thyroid cancer

chatterdog — Sat, 20 Apr 2013 00:56:46 GMT

Oh, and how old are you now Cora? Just wondering over how many years you have had your surgeries and RAI treatments.

Re: 23yo with recurrent thyroid cancer

Cora — Sat, 20 Apr 2013 03:44:53 GMT

I'm really surprised how different our doctors are handling things. I've got numerous suspicious nodes in my neck that have popped up in the past 6 months and my doctor doesn't want to do anything about them. I cannot understand how that makes any sense at all? The largest is only 120mm but that has grown to that size in 6 months. How big have your nodes been? I'm so upset because I feel like I am overreacting and that I am now being a bother to him because the cancer keeps coming back. I have just turned 27. 😞

Re: 23yo with recurrent thyroid cancer

Cora — Sat, 20 Apr 2013 03:58:40 GMT

Oops I meant 12mm

Re: 23yo with recurrent thyroid cancer

chatterdog — Sat, 20 Apr 2013 06:01:50 GMT

You shouldn't feel like you're being a bother, it's cancer!! I'm sorry your doctor is making you feel that way. When you say suspicious, have you had biopsies done? Is your thyroglobulin detectable? I know that there are some guidelines about not operating on lymph nodes if you do not have detectable thyroglobulin, but I thought in that case they do RAI instead. I can't remember how big my lymph nodes are, sorry!

Re: 23yo with recurrent thyroid cancer

husbandhasGBM — Sat, 27 Apr 2013 18:08:37 GMT

Hi, I joined this site because my husband has a GBM, but looked at your posts with interest due to my dodgey thyroid (hyperthyroidism). I can't have the iodine treatments because I have the Graves disease as well, so it's removal of the thyroid if it doesn't settle down, which is at the moment. I figured that removal of the thyroid meant that you wouldn't get thyroid cancer (and given my husband's situation, and our three young children, I was beginning to think it might be one less thing to worry about. But, correct me if I'm wrong, are you saying you had the whole thyroid removed when you were 18 and now five years later you have thyroid cancer again? Meaning that removal of the thyroid doesn't prevent thyroid cancer? On another note, the price of drugs is a struggle, I figured that we would meet the threshold early and then only have to pay $6 per script, however some (the most expensive ones) of the drugs my husband is on are not on the PBS and therefore do not even count towards meeting the threshold. You do know you can claim it on your tax return though, any medical costs including physio, non PBS drugs etc, once you get to a certain point which I believe $1000. Take care

Re: 23yo with recurrent thyroid cancer

chatterdog — Wed, 01 May 2013 04:54:32 GMT

Yes, I had my whole thyroid removed when I was 18 and now have cancer in my lymph nodes. The reason for that is that some thyroid cancer cells were left behind when the thyroid was removed, too small to see on a scan or detect on a blood test, which 'latched on' to lymph nodes at some point. So, if you don't have thyroid cancer now, then you definitely cannot get thyroid cancer cells spontaneously popping up once your thyroid is removed. The 20% tax rebate is for medical expenses about $2000. It's certainly a help (I can't wait till tax time!), but not the same as a subsidy. Just grateful that I am not in the States where everything would cost so much more, and insurance is even more difficult to deal with.