Surgery or "wait and see"
Comments
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In 2000 they found a nodule in my thyroid during a general checkup. I had two biopsies and both were non-diagnostic so my surgeon decided to do surgery. He had told me that he would look at my thyroid and test the nodule when he opened me up and if it was cancer he would take my whole thyroid or if it wasnt then they would only take the half with the nodule. Well it was cancer and had spread into my lymph nodes. Did the whole RA 131 thing and follow ups and then was ok. Was warned that it would more than likely recur as it had spread into my lymphnodes (I had the TT in 2001). Then in 2008 I had a recurrence did the RA 131 again and less than a year later was having more issues. So in my honest opinion and advice please don't wait and see, take care of it aggressively and advocate for your care. It is really important as I can tell you first hand it can really mess up things. They cannot stabilize my TSH levels nor my calcium or potassium. I go next week to a teaching hospital in Denver 4 tests and treatment. I advise that you follow some of the links on here and at www.thyca.org read up on thyroid cancer and new treatments and such. Educate yourself before you go but I truly do advocate that you don't follow a wait and see philosphy it may only hurt you in the long run. Hope this doesn't offend you as I am not trying to but my brain is kinda foggy as usual. Take care and hope all goes well for you.
Taffi0 -
Thank youtaffinang said:In 2000 they found a nodule in my thyroid during a general checkup. I had two biopsies and both were non-diagnostic so my surgeon decided to do surgery. He had told me that he would look at my thyroid and test the nodule when he opened me up and if it was cancer he would take my whole thyroid or if it wasnt then they would only take the half with the nodule. Well it was cancer and had spread into my lymph nodes. Did the whole RA 131 thing and follow ups and then was ok. Was warned that it would more than likely recur as it had spread into my lymphnodes (I had the TT in 2001). Then in 2008 I had a recurrence did the RA 131 again and less than a year later was having more issues. So in my honest opinion and advice please don't wait and see, take care of it aggressively and advocate for your care. It is really important as I can tell you first hand it can really mess up things. They cannot stabilize my TSH levels nor my calcium or potassium. I go next week to a teaching hospital in Denver 4 tests and treatment. I advise that you follow some of the links on here and at www.thyca.org read up on thyroid cancer and new treatments and such. Educate yourself before you go but I truly do advocate that you don't follow a wait and see philosphy it may only hurt you in the long run. Hope this doesn't offend you as I am not trying to but my brain is kinda foggy as usual. Take care and hope all goes well for you.
Taffi
Taffi~ I appreciate your advice. I was told that since the nodule was so calcified it would have to have the calcium "disolved" before they could see the cells to see if it is cancer. If it is, in 2 weeks the doc would remove the second half of my thyroid. I am worried about the side effects from the removal of the thyroid. I have been doing research and have seen that many patients have difficulty regulating the functions that the thyroid controls. I already am tired, depressed, have a hoarse voice . . . I am afraid that without my thyoid these will get worse. Bad. On the other hand, my husband fought cancer for 2 years before he passed away. I do not want that. He suffered terribly. I am going for the second opinion next week. If he concurs with the first doc, I will definitely have the surgery done. Am just afriad. I have three kids who I am worried about - things have been very difficult since their dad passed. Thank you for taking the time to answer (sorry I was so long in responding, my 14 year old broke his collar bone bmx'ing). I hope that you can get your calcium and potassium regulated. Take care~0 -
1/2 a thyroid is better than unknown cancer posibilityCherylMike said:Thank you
Taffi~ I appreciate your advice. I was told that since the nodule was so calcified it would have to have the calcium "disolved" before they could see the cells to see if it is cancer. If it is, in 2 weeks the doc would remove the second half of my thyroid. I am worried about the side effects from the removal of the thyroid. I have been doing research and have seen that many patients have difficulty regulating the functions that the thyroid controls. I already am tired, depressed, have a hoarse voice . . . I am afraid that without my thyoid these will get worse. Bad. On the other hand, my husband fought cancer for 2 years before he passed away. I do not want that. He suffered terribly. I am going for the second opinion next week. If he concurs with the first doc, I will definitely have the surgery done. Am just afriad. I have three kids who I am worried about - things have been very difficult since their dad passed. Thank you for taking the time to answer (sorry I was so long in responding, my 14 year old broke his collar bone bmx'ing). I hope that you can get your calcium and potassium regulated. Take care~
in my opinion I would say if the Dr's think its a good idea to take 1/2 of it out then I would too.. in fact i did.
december 2009 i was told i had a large growth
jan 2010 they did a fine needle biopsy and it came back inconclusive
feb 22 2010 they removed 1/2 my thyroid...
Mar 02 2010 lab results showed 2 diffrent types of thyroid cancer in two areas of that 1/2 of the thyroid
Mar 09 2010 they removed the rest of my thyroid.
both cancer types (follicular and papillary) were still in phase 1.
I was lucky they found it that early and hopefully early enough that i have a very small chance of reoccourance.
another reason ... most people can function totaly normal with 1/2 a thyroid.
3rd reason ... even if you cant function normaly with 1/2 a thyroid (or withot any thyroid) you will be perscribed 1 pill a day (diffrent levels of pills but just 1).
You can live a normal life expectancy with thyroid replacement and it isnt hard to take 1 small pill a day.
good luck and hope its not cancer0 -
1 Pill A Daynasher said:1/2 a thyroid is better than unknown cancer posibility
in my opinion I would say if the Dr's think its a good idea to take 1/2 of it out then I would too.. in fact i did.
december 2009 i was told i had a large growth
jan 2010 they did a fine needle biopsy and it came back inconclusive
feb 22 2010 they removed 1/2 my thyroid...
Mar 02 2010 lab results showed 2 diffrent types of thyroid cancer in two areas of that 1/2 of the thyroid
Mar 09 2010 they removed the rest of my thyroid.
both cancer types (follicular and papillary) were still in phase 1.
I was lucky they found it that early and hopefully early enough that i have a very small chance of reoccourance.
another reason ... most people can function totaly normal with 1/2 a thyroid.
3rd reason ... even if you cant function normaly with 1/2 a thyroid (or withot any thyroid) you will be perscribed 1 pill a day (diffrent levels of pills but just 1).
You can live a normal life expectancy with thyroid replacement and it isnt hard to take 1 small pill a day.
good luck and hope its not cancer
I agree with this. I have no trouble with 1 pill a day. I have no thyroid and I take 175 mcg's of Synthroid per day. My levels are normal and stable and have been for almost a year. If this turns out to be cancer don't hesitate to remove the whole thyroid. They can biopsy on the spot in the OR. Most thyroid cancer patients end up having the whole thing removed in the end. I would opt for one surgery instead of two if at all possible. I had to have two surgeries due to metastasis and the second was worse than the first. Best of luck to you!0 -
yes i had my whole thyroidsunnyaz said:1 Pill A Day
I agree with this. I have no trouble with 1 pill a day. I have no thyroid and I take 175 mcg's of Synthroid per day. My levels are normal and stable and have been for almost a year. If this turns out to be cancer don't hesitate to remove the whole thyroid. They can biopsy on the spot in the OR. Most thyroid cancer patients end up having the whole thing removed in the end. I would opt for one surgery instead of two if at all possible. I had to have two surgeries due to metastasis and the second was worse than the first. Best of luck to you!
yes i had my whole thyroid out and its just 1 little pill a day...
and since synthroid is a long acting replacement if you miss a day it dosn't really hurt you (but dont miss too many) in fact if you are going into more scans do to posible reocourance they take you off synthroid for a few weeks (and put you on the Dreaded Low Iodine Diet) so you can function for a few days even with no major problems if you miss your dose...
they caught my cancer's (2 diffrent types) both in what they think was stage 1 so i have a low chance of reoccourance.
good luck to you0 -
I had a tumor for 3 yearsnasher said:yes i had my whole thyroid
yes i had my whole thyroid out and its just 1 little pill a day...
and since synthroid is a long acting replacement if you miss a day it dosn't really hurt you (but dont miss too many) in fact if you are going into more scans do to posible reocourance they take you off synthroid for a few weeks (and put you on the Dreaded Low Iodine Diet) so you can function for a few days even with no major problems if you miss your dose...
they caught my cancer's (2 diffrent types) both in what they think was stage 1 so i have a low chance of reoccourance.
good luck to you
I had a tumor for 3 years that they thought wasnt cancerous. When it grew they did surgery, surprise surprise it was cancer. I did the whole wait and see and was very lucky in the end that it hadnt spread. If I could go back I would have had it removed right away. But that was my own personal experience. I now have no thyroid and have to take synthroid, but amd getting ready to do radioactive iodine to kill the remaining cancer. I was lucky, not everyone is. It depends on what you want to do and what your dr. recommends.0 -
Thank you all for your responsesHHMinton said:I had a tumor for 3 years
I had a tumor for 3 years that they thought wasnt cancerous. When it grew they did surgery, surprise surprise it was cancer. I did the whole wait and see and was very lucky in the end that it hadnt spread. If I could go back I would have had it removed right away. But that was my own personal experience. I now have no thyroid and have to take synthroid, but amd getting ready to do radioactive iodine to kill the remaining cancer. I was lucky, not everyone is. It depends on what you want to do and what your dr. recommends.
I went ahead and had the surgery 2 days ago. When I woke up, my doctor told me that the nodule was cancer and he removed the entire thyroid. I am so glad that I had the surgery even though the FNB came back benign. The doc said the cancer was small. I have to go have the radioactive iodine treatment. I am taking large amounts of calcium (three 500 mg every 6 hours) because the blood flow was disrupted to(3)glands. The fourth one he "moved" into a muscle? Have you had this happen? The doc told me the calcium production should come back. Once again, a deeply felt thank you for your responses. They truly factored in my decision to have the surgery.0 -
i had my surgeries in JuneCherylMike said:Thank you all for your responses
I went ahead and had the surgery 2 days ago. When I woke up, my doctor told me that the nodule was cancer and he removed the entire thyroid. I am so glad that I had the surgery even though the FNB came back benign. The doc said the cancer was small. I have to go have the radioactive iodine treatment. I am taking large amounts of calcium (three 500 mg every 6 hours) because the blood flow was disrupted to(3)glands. The fourth one he "moved" into a muscle? Have you had this happen? The doc told me the calcium production should come back. Once again, a deeply felt thank you for your responses. They truly factored in my decision to have the surgery.
i had my surgeries in June and July and have been taking 4 tums a day and two mega dose vit.D pills a day because they havent come back up yet, but its so easy to do and i felt healthier very quickly. im waiting to do my iodine treatment but all things are looking good. Hang in there, it gets easier, and the recovery from the surgeries at least for me were not bad at all. Good luck!!!0 -
low calciumCherylMike said:Thank you all for your responses
I went ahead and had the surgery 2 days ago. When I woke up, my doctor told me that the nodule was cancer and he removed the entire thyroid. I am so glad that I had the surgery even though the FNB came back benign. The doc said the cancer was small. I have to go have the radioactive iodine treatment. I am taking large amounts of calcium (three 500 mg every 6 hours) because the blood flow was disrupted to(3)glands. The fourth one he "moved" into a muscle? Have you had this happen? The doc told me the calcium production should come back. Once again, a deeply felt thank you for your responses. They truly factored in my decision to have the surgery.
yes i had low calcium levels after the 2nd surgery cause when they pulled out each 1/2 of they thyroid they removed a parathyroid each time (you start with 4 and should have at least 1)
your parathyroids probaly went into shock my remaining two did for about a week before they were performing normaly
right now i am on vitimin D because that is still low (if your calcium is low have them check your Vitimin D as well.)
by two remaining parathyroids are functioning normaly and it sounds like you have at least 3 of yours remaining if not all 4.
just make sure you followup on this and make sure they are functioning properly or that they keep you on replacements and such to keep your calcium levels up.
wish i could explain it better0 -
CherylMike: How are you doing?CherylMike said:Thank you all for your responses
I went ahead and had the surgery 2 days ago. When I woke up, my doctor told me that the nodule was cancer and he removed the entire thyroid. I am so glad that I had the surgery even though the FNB came back benign. The doc said the cancer was small. I have to go have the radioactive iodine treatment. I am taking large amounts of calcium (three 500 mg every 6 hours) because the blood flow was disrupted to(3)glands. The fourth one he "moved" into a muscle? Have you had this happen? The doc told me the calcium production should come back. Once again, a deeply felt thank you for your responses. They truly factored in my decision to have the surgery.
It's been two weeks since your surgery and I am hoping you are feeling better. By now your calcium should be regulating itself. I too had a parathyroid moved. They had to "crush" and pin it to a muscle. I haven't had any problems with regulation of calcium and your probably won't either. Keep us posted on when your RAI will happen. I recommend asking about the Thyrogen injections before the treatment so that you don't have to stop your thyroid medication. I truly hope you are well and recovering fully. By the way, did they test for the B-RAF mutation gene?0 -
Doing Bettersunnyaz said:CherylMike: How are you doing?
It's been two weeks since your surgery and I am hoping you are feeling better. By now your calcium should be regulating itself. I too had a parathyroid moved. They had to "crush" and pin it to a muscle. I haven't had any problems with regulation of calcium and your probably won't either. Keep us posted on when your RAI will happen. I recommend asking about the Thyrogen injections before the treatment so that you don't have to stop your thyroid medication. I truly hope you are well and recovering fully. By the way, did they test for the B-RAF mutation gene?
I am doing much better (started walking/jogging 2 miles-however, I feel very "foggy" and almost faint if I am bending down and stand up too quickly). I still am on calcium as my arm and leg will tingle if I am more than 8 hours between doses. I went to the endo doc yesterday and she is getting the RAI set up ASAP. (My husband died of head and neck cancer one year ago on halloween. His company provided insurance to myself and children for 2 years. Due to the "scan" being 1 year from RAI, I needed to get the treatment ASAP so that this insurance will still be in effect for the scan.) I started the low iodine diet today, but have not come off the thyroid medicine yet. (I am waiting for the nuclear radiation doc to call). The endo mentioned that I would have the Thyrogen injections before the scan, but is taking me off thyroid meds for RAI. I will ask the nuclear doc about the injections versus stopping meds when he calls. Did you have to go off thyroid meds? How bad is it? Did your salivary glands have any scaring from the RAI? (My husband had his salivary glands destroyed from radiation. The negative impact on the quality of his life was HUGE.) I know that I am suppose to drink lots of water before and after RAI (1 bottle every hour for the first 24 hours is critical) and suck on sour candy (as much as I can stand). How long did you have to stay in isolation? How long after RAI did you feel "normal" again? Sorry for all the questions, it is helpful and comforting to speak to someone that has been through this. Thank you for the advise on the Thyrogen injections~cheryl (yes, they did test me for the BRAF gene. The results are not back yet)0 -
Doing BetterCherylMike said:Doing Better
I am doing much better (started walking/jogging 2 miles-however, I feel very "foggy" and almost faint if I am bending down and stand up too quickly). I still am on calcium as my arm and leg will tingle if I am more than 8 hours between doses. I went to the endo doc yesterday and she is getting the RAI set up ASAP. (My husband died of head and neck cancer one year ago on halloween. His company provided insurance to myself and children for 2 years. Due to the "scan" being 1 year from RAI, I needed to get the treatment ASAP so that this insurance will still be in effect for the scan.) I started the low iodine diet today, but have not come off the thyroid medicine yet. (I am waiting for the nuclear radiation doc to call). The endo mentioned that I would have the Thyrogen injections before the scan, but is taking me off thyroid meds for RAI. I will ask the nuclear doc about the injections versus stopping meds when he calls. Did you have to go off thyroid meds? How bad is it? Did your salivary glands have any scaring from the RAI? (My husband had his salivary glands destroyed from radiation. The negative impact on the quality of his life was HUGE.) I know that I am suppose to drink lots of water before and after RAI (1 bottle every hour for the first 24 hours is critical) and suck on sour candy (as much as I can stand). How long did you have to stay in isolation? How long after RAI did you feel "normal" again? Sorry for all the questions, it is helpful and comforting to speak to someone that has been through this. Thank you for the advise on the Thyrogen injections~cheryl (yes, they did test me for the BRAF gene. The results are not back yet)
So glad you are doing better. I also want you to know that I am deeply sorry for the loss of your husband. This must be so hard for you. I pray that you have lots of support from friends and family. Feel free to email me privately if you like.
I replied to your food list post. See that for suggestions. I did not go off of med's. I had the injections. There is no scientific evidence that going off your meds is better than the injections even for the treatment. Take them for the treatment too and stay on your meds if at all possible. I have had no salivary issues. BE CAREFUL about drinking too much water. It can make you very nauseated and you could throw up the RAI pills. You really don't need more than eight to twelve ounces every two to three hours. Sip it to keep a constant flow through your system, but don't overdo it. I didn't just drink water. I also had coffee, soda and juice etc. I sucked on Lifesavers and Jolly Ranchers to keep my salivary glands producing. Sugar free gum with Sorbitol will give you diarrhea. I was in isolation for four days. I started feeling better after the sixth day. If you come back positive for the B-RAF don't be depressed or discouraged. A lot of people have it. It is not a huge issue. You are going to kick this cancer's butt and move on with your life.0 -
pulls out my personal blog to look at timesCherylMike said:Doing Better
I am doing much better (started walking/jogging 2 miles-however, I feel very "foggy" and almost faint if I am bending down and stand up too quickly). I still am on calcium as my arm and leg will tingle if I am more than 8 hours between doses. I went to the endo doc yesterday and she is getting the RAI set up ASAP. (My husband died of head and neck cancer one year ago on halloween. His company provided insurance to myself and children for 2 years. Due to the "scan" being 1 year from RAI, I needed to get the treatment ASAP so that this insurance will still be in effect for the scan.) I started the low iodine diet today, but have not come off the thyroid medicine yet. (I am waiting for the nuclear radiation doc to call). The endo mentioned that I would have the Thyrogen injections before the scan, but is taking me off thyroid meds for RAI. I will ask the nuclear doc about the injections versus stopping meds when he calls. Did you have to go off thyroid meds? How bad is it? Did your salivary glands have any scaring from the RAI? (My husband had his salivary glands destroyed from radiation. The negative impact on the quality of his life was HUGE.) I know that I am suppose to drink lots of water before and after RAI (1 bottle every hour for the first 24 hours is critical) and suck on sour candy (as much as I can stand). How long did you have to stay in isolation? How long after RAI did you feel "normal" again? Sorry for all the questions, it is helpful and comforting to speak to someone that has been through this. Thank you for the advise on the Thyrogen injections~cheryl (yes, they did test me for the BRAF gene. The results are not back yet)
yes after my thyroid was removed i was feeling alot better
i was on calcium for a few weeks and i am still battleing low calcium blood levels. also low vitimin d and magniesum.
yes my salavary glands are not functioning at full strength as well causeing constant dry mouth . I also still have the metallic taste is still annoying.
I was in isolation for 2 days it all depends on how BIG of a dose they give you.
Honestly some days i feel normal and others i dont. I have alot of other medical issues some may be related but at least 1/2 of them are not. as for today I am not feeling normal... main reason i was loging my medical apointments for November.. (i have 19) most of them are the fact i have to go to 2 diffrent physical therapys for diffrent issues but its just crazy.
right now i cant run (knees) but i can do elicptical machine and the like for over 1 hour at a decent pace.
lets see if i can answer some of your questions.
if your on LID and havent gone off your meds yet CALL the nuclear radiation department. they may have to postpone your treatment and keep you on the LID longer.. Unless you can get the shots if you can get those take them... I wish they were offered for me.
my salavary glands are not producting what they should be and i probaly drink 2-3x a day the water i probaly need to just to keep drymouth away.
yes sour candies... bring lots of types... I had 4 types and honestly got sick and tired of each of them... even if its not a sour candy if its a difrent flavor it will still work just not as much as a sour one will...
I was in isolation for 2 days.. some people dont need isolation others can be there over 4 days it all depends on how much radiation you get and the local rules.
whats "normal"? some days i feel normal others i dont remember what normal was.
if you dont ask questions you wont get answers.. ask the doc these questions as well
dont be sorry for any of the questions.
also find a cancer survivors group.. they help I was out 6+ months after i had my thyroid removed and now i wish the day after i got diagnosed i went it would have helped alot.
good luck and keep us informed... I am probaly going to post my blog today on here mabey it can help others.0
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