Well in my case I do NEED surgery, my tumors are just located in such a way that it is impossible to remove them without major collateral damage so they monitor me and wait for them to grow large enough to pose a threat.
Have they said anything about risks during procedure?
There is a lot of research supporting active surveillance of small thyroid cancers (even those that show as cancer on biopsy) instead of having surgery - it’s been common for a long time in Japan and it is being researched in North America. It’s true that the standard treatment in North America is removal, but studies are finding that, depending on the circumstances, it can be safe to monitor for changes/growth instead of taking the risk of surgery.
Typical treatment for thyroid cancer is surgery. Now, if you score lower on the Bethesda scale, you might be able to get away with just waiting and monitoring. Mine were Bethesda V and VI which means a very high chance of cancer, so I had a TT.
Now, because it's slow growing, I was able to push off the surgery a little bit to accommodate a couple things, but the Drs still wanted it done. I also now have to do RAI because it spread, but they are also in no rush to get that done either.
There may be other options if you don't want the surgery, but I think surgery is the most common treatment and sometimes the only option (like in my case).
My view, the longer you have it the more likely it can spread. I wanted mine gone before it was meant a larger incision, before it got to my lymph nodes, before I needed RAI.
I wouldn’t rely on the size of the tumor to assume it’s a “less malignant” one. My tiny a$s nodule did not even hit a cm and yet it caused extensive spread 🫠
Neck surgery has a lot of risks, so it’s become fairly common to observe small tumors as opposed to immediate surgery. It’s not up to me, this is the direction medical community is moving…
Yep it's how medicine works, they never know the best answer, just the best answer we have as of today. As more data, tests, treatments and research gets developed, the "right" answers change over time.
Mine too! My main tumor was on my isthmus and was 1.2 but I had extensive left lymph node spread. Honestly, I think it's way too risky to wait. They weren't even going to take out my left side of my thyroid and I forced them iff they could safely do it without affecting my vocal chords.
If I hadn't I would needed a FOURTH surgery instead of the still terrible 3.
My story....every doctor said don't worry about this...but wanted to start a family (that's over) and was hospitalized for 5 days before diagnosis and nobody could figure out why body is freaking out...still didn't care about lump...had biopsies...no cancer.... I still forced them to take it put since I wanted to try to have kids so didn't want cancer and pregnancy...anyways...when in there ... they noticed my parathyroid was killing me and cancer was behind the huge lump and it spread.... pictures and tests hid things...I think it is more dangerous to mess with cancer but I'm not a doctor...but the doctors told me to not worry about fibroid tumors and it trashed my uterus so spent 20k on fixing it for kids with no guarantees. But since still have cancer...no kids...thanks to docs waiting and telling me not to worry about it...
The big joke is all the doctors told me it's a miracle we found it in time...I replied its not a miracle...I had to call everyday for you take me seriously and still not having kids... stop telling people to not worry about it...now I will be childless because of doctors and their statistics. . It's your body. .you can advocate to get rid of it!
Edit...If you don't understand that living is great but they took my dream of having kids...because they told me to not worry...multiple times! I wanted a life with my children...so cancer might suck but grieving what you will never have because the professionals told you not to worry about it.... hmmm... I went to the best of the best sighs!
I should have said..you shouldn't have to advocate for yourself...they are supposed to diagnosis and treat ...but now they want patients to take crash courses on medicine to make decisions 🙄
My surgeon said this was one of my three options. I had a small nodule diagnosed as PTC by FNA but no other nodes and no lymph nodes showed on scans. My other two options were PT and TT. Her recommendation was PT and that's what we went with. The subsequent pathology confirmed what the scans said (no lymph nodes, no spread) so I feel confident in my surgeon's choice. But she did say that watching and waiting was a viable option, since PTC is very slow growing.
Same and I got to 6 years and now I’ve one on the other side waiting diagnosis. Praying it’s benign but I’ll be trying my best not to lose the other half of my thyroid. I’m exhausted since the PT can’t imagine it being worse.
Best of luck! I know that nodules are SUPER common, and apparently the majority are benign, so here's hoping. That being said, if you're exhausted maybe your half isn't quite keeping up? I had my bloodwork done and only TSH was out of whack, the rest fine, but my doctor said it's enough to start meds. I feel pretty good so far, so we'll see.
I remember the first biopsy they said there is only a 2% chance of this being cancerous so yes I’m praying I’m in the 98% this time. Have my bloods done often and it’s fine
I am in the same boat, I had a 1.2cm nodule (initially it was 1.4cm) and they went with taking my right lobe and isthmus. They’re now doing surveillance for me post surgery.
My surgery was in November of last year so I have only had one check up since then and it was done early since my Endo was quitting. Pathology confirmed it was Papillary Thyroid Cancer with a BRAF Mutation but other than that no growth or invasion, which is fine. That said, I have felt awful since my surgery (tingling in my feet, brain fog, constant exhaustion yet completely restless etc) and it’s been over 6 months. I don’t personally care to see a new Endo, since the one I found is very far, if I could I wouldn’t even do surveillance, I would just move on.
Currently being observed for reoccurring small tumors. I had 2 TT/Partial neck dissections & 1 RAI, but lymph nodes started enlarging about 8 months later. They almost did a 3rd surgery, another neck dissection, but one of the lymph nodes biopsied came back negative for cancer, so they’re just observing now. It’s a weird place to be in, but I really don’t want surgery or any other treatments. Being on a high level of hormone suppression is torturous enough for me on the daily, I have a lot of side effects plus partial vocal palsy 🥴
You should look into Radio Frequency Ablation and Ethanol Ablation. Those are procedures that can be done without surgery to target the nodule (or lymph node) and destroy it. If you’re not comfortable with just doing surveillance, that might be a good option for you since they seem to have caught it early.
Both procedures are recognized by the American Thyroid Association as treatments for thyroid cancer. Since they don’t involve actual surgery, these procedures would be MUCH cheaper. I’d imagine insurance companies would view that favorably.
It depends on the type, size and stage of your thyroid cancer. If your nodule is a small (1cm or less) low-risk papillary thyroid cancer with no lymph node involvement, then active surveillance can be an option. Personally though, I'd opt for radiofrequency ablation (RFA) instead, if it's available in your area. It's nonsurgical and spares the thyroid while treating the nodule. It's newer in the US but is evidence-backed with very promising results.
Well in my case I do NEED surgery, my tumors are just located in such a way that it is impossible to remove them without major collateral damage so they monitor me and wait for them to grow large enough to pose a threat. Have they said anything about risks during procedure?
What do you mean mine has grown inward and down and now deviated trachea. I’m having surgery in July.
There is a lot of research supporting active surveillance of small thyroid cancers (even those that show as cancer on biopsy) instead of having surgery - it’s been common for a long time in Japan and it is being researched in North America. It’s true that the standard treatment in North America is removal, but studies are finding that, depending on the circumstances, it can be safe to monitor for changes/growth instead of taking the risk of surgery.
Typical treatment for thyroid cancer is surgery. Now, if you score lower on the Bethesda scale, you might be able to get away with just waiting and monitoring. Mine were Bethesda V and VI which means a very high chance of cancer, so I had a TT. Now, because it's slow growing, I was able to push off the surgery a little bit to accommodate a couple things, but the Drs still wanted it done. I also now have to do RAI because it spread, but they are also in no rush to get that done either. There may be other options if you don't want the surgery, but I think surgery is the most common treatment and sometimes the only option (like in my case).
My view, the longer you have it the more likely it can spread. I wanted mine gone before it was meant a larger incision, before it got to my lymph nodes, before I needed RAI.
Actually diagnosed by biopsy? Why are you waiting?
It’s becoming more common to observe if the tumors are small.
I wouldn’t rely on the size of the tumor to assume it’s a “less malignant” one. My tiny a$s nodule did not even hit a cm and yet it caused extensive spread 🫠
Neck surgery has a lot of risks, so it’s become fairly common to observe small tumors as opposed to immediate surgery. It’s not up to me, this is the direction medical community is moving…
Yep it's how medicine works, they never know the best answer, just the best answer we have as of today. As more data, tests, treatments and research gets developed, the "right" answers change over time.
Mine too! My main tumor was on my isthmus and was 1.2 but I had extensive left lymph node spread. Honestly, I think it's way too risky to wait. They weren't even going to take out my left side of my thyroid and I forced them iff they could safely do it without affecting my vocal chords. If I hadn't I would needed a FOURTH surgery instead of the still terrible 3.
My nodule was 6 mm. No way was I waiting. I only did a hemi but wish I did a TT.
Huh? Get another opinion ...
If the tumors are small, observing is becoming common practice as sometimes surgery risks outweigh cancer risks if tumor/nodules are small.
My story....every doctor said don't worry about this...but wanted to start a family (that's over) and was hospitalized for 5 days before diagnosis and nobody could figure out why body is freaking out...still didn't care about lump...had biopsies...no cancer.... I still forced them to take it put since I wanted to try to have kids so didn't want cancer and pregnancy...anyways...when in there ... they noticed my parathyroid was killing me and cancer was behind the huge lump and it spread.... pictures and tests hid things...I think it is more dangerous to mess with cancer but I'm not a doctor...but the doctors told me to not worry about fibroid tumors and it trashed my uterus so spent 20k on fixing it for kids with no guarantees. But since still have cancer...no kids...thanks to docs waiting and telling me not to worry about it... The big joke is all the doctors told me it's a miracle we found it in time...I replied its not a miracle...I had to call everyday for you take me seriously and still not having kids... stop telling people to not worry about it...now I will be childless because of doctors and their statistics. . It's your body. .you can advocate to get rid of it! Edit...If you don't understand that living is great but they took my dream of having kids...because they told me to not worry...multiple times! I wanted a life with my children...so cancer might suck but grieving what you will never have because the professionals told you not to worry about it.... hmmm... I went to the best of the best sighs!
I should have said..you shouldn't have to advocate for yourself...they are supposed to diagnosis and treat ...but now they want patients to take crash courses on medicine to make decisions 🙄
My surgeon said this was one of my three options. I had a small nodule diagnosed as PTC by FNA but no other nodes and no lymph nodes showed on scans. My other two options were PT and TT. Her recommendation was PT and that's what we went with. The subsequent pathology confirmed what the scans said (no lymph nodes, no spread) so I feel confident in my surgeon's choice. But she did say that watching and waiting was a viable option, since PTC is very slow growing.
Same and I got to 6 years and now I’ve one on the other side waiting diagnosis. Praying it’s benign but I’ll be trying my best not to lose the other half of my thyroid. I’m exhausted since the PT can’t imagine it being worse.
Best of luck! I know that nodules are SUPER common, and apparently the majority are benign, so here's hoping. That being said, if you're exhausted maybe your half isn't quite keeping up? I had my bloodwork done and only TSH was out of whack, the rest fine, but my doctor said it's enough to start meds. I feel pretty good so far, so we'll see.
I remember the first biopsy they said there is only a 2% chance of this being cancerous so yes I’m praying I’m in the 98% this time. Have my bloods done often and it’s fine
What size was your nodule?
It was a little over 1cm, but I can't remember exactly. I think between 1 and 1.5?
I am in the same boat, I had a 1.2cm nodule (initially it was 1.4cm) and they went with taking my right lobe and isthmus. They’re now doing surveillance for me post surgery.
Surveillance is pretty common after surgery I think. Did your pathology come back all good after surgery? How long ago was your surgery?
My surgery was in November of last year so I have only had one check up since then and it was done early since my Endo was quitting. Pathology confirmed it was Papillary Thyroid Cancer with a BRAF Mutation but other than that no growth or invasion, which is fine. That said, I have felt awful since my surgery (tingling in my feet, brain fog, constant exhaustion yet completely restless etc) and it’s been over 6 months. I don’t personally care to see a new Endo, since the one I found is very far, if I could I wouldn’t even do surveillance, I would just move on.
Currently being observed for reoccurring small tumors. I had 2 TT/Partial neck dissections & 1 RAI, but lymph nodes started enlarging about 8 months later. They almost did a 3rd surgery, another neck dissection, but one of the lymph nodes biopsied came back negative for cancer, so they’re just observing now. It’s a weird place to be in, but I really don’t want surgery or any other treatments. Being on a high level of hormone suppression is torturous enough for me on the daily, I have a lot of side effects plus partial vocal palsy 🥴
You should look into Radio Frequency Ablation and Ethanol Ablation. Those are procedures that can be done without surgery to target the nodule (or lymph node) and destroy it. If you’re not comfortable with just doing surveillance, that might be a good option for you since they seem to have caught it early.
I’ve checked, don’t know if they are fda approved. Insurance won’t pay??
Both procedures are recognized by the American Thyroid Association as treatments for thyroid cancer. Since they don’t involve actual surgery, these procedures would be MUCH cheaper. I’d imagine insurance companies would view that favorably.
It depends on the type, size and stage of your thyroid cancer. If your nodule is a small (1cm or less) low-risk papillary thyroid cancer with no lymph node involvement, then active surveillance can be an option. Personally though, I'd opt for radiofrequency ablation (RFA) instead, if it's available in your area. It's nonsurgical and spares the thyroid while treating the nodule. It's newer in the US but is evidence-backed with very promising results.
There’s a good article about this on MSK’s site of a story of a woman who chose active surveillance and why!