Watchful Waiting
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MeepleMuppet
Posts: 226 Member
Hi folks,
I thought I'd post what I've learned in the last few months. I had a 6cm nodule on my thyroid, diagnosed in 2012. Surgery followed diagnosis, ablation (radioactive iodine) followed about 6 months after that. I settled in to my life on meds and an ultrasound every 6 months. In 2014, my TSH levels creeped up a tiny bit. Ultrasound ID'd 2 cm nodule on a lymph node adjacent to the thyroid bed, a fine needle aspiration confirmed that it was a reoccurance of the thyroid cancer. This time they asked if I would like to keep it.
So this is called "watchful waiting". The theory is that some bodies just...need?...cancer. And if you're going to have it, then why not have a relatively inert one? Important note here, cancer in the lymph nodes is bad, except when it's thyroid cancer. This one does not use the lymphatic system to spread.
I ultimately decided to have the lymph node taken out. So the plan was for the surgeon to take out the cancerous node plus surrounding lymph nodes. If they all tested positive for the microscopic traces of thyroid cancer, I would do a second round of ablation. If they were clean, I would be fast-tracked to "cured". That holy grail of the cancer survivor world.
Well, they all tested positive. So a few weeks ago I did round two of the radioactive iodine. Good Lord that diet isn't any easier the second time around. BUT, here's what I learned about that: 1) the technician said the LID was overkill and probably unnecessary (grrrr), 2) there is no longer any consensus on the length of isolation, I was told anything after four days was my own business o.O
3) Thyrogen shots make the radiation pass through your system much faster than if you do the withdrawal method. Some said that my first dose (140 mcurries) may not have been strong enough, but stopped short of admitting that that may have contributed to the reoccurance. I still elected to do the shots this second time around, so the Nuc Med doc says "let's do this right" and jacked up the dose to 175 millicurries.
A common thread in all of my conversations with the Nuc Med people this time around was that a reoccurance one time is getting rare these days, a third time is apparently unheard of. Which takes me back to the concept of watchful waiting. Now, if I have the kind of body that needs cancer, we will have to leave it to conventional cancer screenings to find it. Had I left the lymph nodes, we'd know exactly where it was. The whole idea of living with cancer made me uncomfortable at the time, as did the seismic shifts in the medical rhetoric in just two years. But, from where I'm sitting right now (head-wise), if we find another nodule, say on the other side of my neck, this unheard-of third reoccurance....I think I will leave it.
I thought I'd post what I've learned in the last few months. I had a 6cm nodule on my thyroid, diagnosed in 2012. Surgery followed diagnosis, ablation (radioactive iodine) followed about 6 months after that. I settled in to my life on meds and an ultrasound every 6 months. In 2014, my TSH levels creeped up a tiny bit. Ultrasound ID'd 2 cm nodule on a lymph node adjacent to the thyroid bed, a fine needle aspiration confirmed that it was a reoccurance of the thyroid cancer. This time they asked if I would like to keep it.
So this is called "watchful waiting". The theory is that some bodies just...need?...cancer. And if you're going to have it, then why not have a relatively inert one? Important note here, cancer in the lymph nodes is bad, except when it's thyroid cancer. This one does not use the lymphatic system to spread.
I ultimately decided to have the lymph node taken out. So the plan was for the surgeon to take out the cancerous node plus surrounding lymph nodes. If they all tested positive for the microscopic traces of thyroid cancer, I would do a second round of ablation. If they were clean, I would be fast-tracked to "cured". That holy grail of the cancer survivor world.
Well, they all tested positive. So a few weeks ago I did round two of the radioactive iodine. Good Lord that diet isn't any easier the second time around. BUT, here's what I learned about that: 1) the technician said the LID was overkill and probably unnecessary (grrrr), 2) there is no longer any consensus on the length of isolation, I was told anything after four days was my own business o.O
3) Thyrogen shots make the radiation pass through your system much faster than if you do the withdrawal method. Some said that my first dose (140 mcurries) may not have been strong enough, but stopped short of admitting that that may have contributed to the reoccurance. I still elected to do the shots this second time around, so the Nuc Med doc says "let's do this right" and jacked up the dose to 175 millicurries.
A common thread in all of my conversations with the Nuc Med people this time around was that a reoccurance one time is getting rare these days, a third time is apparently unheard of. Which takes me back to the concept of watchful waiting. Now, if I have the kind of body that needs cancer, we will have to leave it to conventional cancer screenings to find it. Had I left the lymph nodes, we'd know exactly where it was. The whole idea of living with cancer made me uncomfortable at the time, as did the seismic shifts in the medical rhetoric in just two years. But, from where I'm sitting right now (head-wise), if we find another nodule, say on the other side of my neck, this unheard-of third reoccurance....I think I will leave it.
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oops, 6mm. My reoccurance was a 6mm nodule. So small the fine needle aspiration thingy required 7 (7!) passes. It was very, very small and the docs were very, very unconcerned. A collective "meh" from the whole lot of them. To their credit, they did acknowledge that watchful waiting is a very tough thing to wrap your head around.0
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Hang in there and try and not stress0
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I lost mine two and a half years ago to,Cancer and often wonder if I could have just left it alone. I would have never known it was there. I did not have to do RAI.
Hope you recover well.0 -
MeepleMuppet wrote: »3) Thyrogen shots make the radiation pass through your system much faster than if you do the withdrawal method. Some said that my first dose (140 mcurries) may not have been strong enough, but stopped short of admitting that that may have contributed to the reoccurance. I still elected to do the shots this second time around, so the Nuc Med doc says "let's do this right" and jacked up the dose to 175 millicurries.
The first time I had a treatment the Thyrogen was in a shortage and I had to come of the pill. They were concerned about my levels and wanted me to stay off it and continue with the diet in case I had to do it again. I wound up being off my synthriod and on the low iodine diet for nearly a month. Two weeks is hard. A month was horrible. The day I was supposed to have my check up I got full body cramps and was vomiting. I felt like I was what I imagine passing a kidney stone feels like. They told me it was a result from not being on the medicine (duh).
If anyone is given a choice to take thyrogen or go off your medication, take the thyrogen!!
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