23yo with recurrent thyroid cancer

[michele1960]

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

[Cora]

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. :)

[chatterdog]

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!

[chatterdog]

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

[Cora]

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. 😞

[Cora]

Oops I meant 12mm

[chatterdog]

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!

[husbandhasGBM]

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

[chatterdog]

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.