New to the boards...my story...plus a few questions :)

Questions
Hi JC_hama,
Welcome to CSN. I had a similar experience to you in the beginning. I did not have to stop my meds before RAI. I was given two Thyrogen injections before my RAI so that I would not have to stop meds. I would ask about this option. There is no real benefit to stopping your meds before treatment. Not a fun thing to have to do. You WILL need to go on the Low Iodine Diet about two weeks before your RAI. The website for more great information and a cook book is www.thyca.org. The purpose of this is to starve your Thyroid cells of Iodine before the treatment so that they will uptake the RAI and kill any remaining Thyroid cells, which is what will cause recurrence. The least amount of Iodine you intake, the better off you will be. I had a similar sized node that was also Papillary (encapsulated) and removed in stage 1. They called it the "Cadillac" of all cancers. I beg to differ and so will many others on this site. They said it was not necessary to do RAI after my Thyroidectomy (November 2009) so I didn't; BIG mistake. Six months later (May 2010) I had metastasis to the Lymph nodes. Second surgery in June 2010 and RAI on September 1st. Now I have metastasis again (along with the same node the STUPID surgeon missed in June and now is almost 2 centimeters) and will undergo surgery in two weeks on the 17th of December. Now I have a much more qualified surgeon who specializes in Endocrine Cancer through the University of Arizona Cancer Center. Do the RAI as soon as you can! If you wait until after Christmas, don't wait too long. After my second surgery my Endocrinologist ordered a test on the tissue to find out if I have a B-RAF Mutation Gene. I was positive. This gene makes the cancer more aggressive and less likely to respond to treatment. If they still have your tissue samples, I would request this test be done so that you know what you are dealing with. I am only 43 years old with a wonderful husband of sixteen years and a thirteen year old daughter who really needs a mom. I intend to fight and do whatever it takes to arm myself with as much knowledge as I can. This site has helped and so has the thyca website. This is how you will take control of your situation; knowledge. I will keep you in my thoughts and prayers. Keep us posted on your progress. This is a great site for support and friendship. I hope that you have a good support system at home as well. I look forward to sharing with you as much as I can.
SunnyAZ-Julie

JC_hama said:

Thank you
SunnyAZ-Julie,

Thank you for your response. I too was told that I was lucky to have the best cancer there is to have. One Endo even told me that I had won the cancer lottery! I beg to differ on that! I do not feel lucky to have cancer. It has changed my life completely.

I will be doing the RAI in January. I will not put it off for too long and I will ask my rad/onc about the shot you mentioned. I am terrified of going off my meds in order to do the RAI. I have heard horror stories of people who go off meds and it scares me to death. I am actually going to see a psychologist this week because I am so emotionally drained from all of this. I also found a cancer support group that meets this Wednesday, so I plan on attending that meeting as well.

I do have a good support system at home. I have 4 kids who are 16, 13, 10, and 6 and they have been great through this whole ordeal. I also have a husband who has been wonderfully supportive. My father had this same type of cancer as well. In fact, my experience so far has been almost identical to his. Whenever I have concerns I call him for reassurance. I am glad to have found this site as well. There seem to be so many helpful people out there who can share their stories and offer advice and I appreciate that so much!

Cathy

You are welcome Cathy!
Yep, the whole "Cancer Lottery" thing really ticks me off. If you have to take a pill for the rest of your life just to stay sane and alive, you didn't win a lottery. The Thyroid effects so many of our body functions. My mental state hasn't been the same since I started having symptoms. I went from a healthy 135 pounds to 185. Lucky for me I was a fairly happy person before my diagnosis otherwise I might be a big mess.

I had a biopsy of a left node on Friday and got the good news that it was negative and has not spread to the left side. So in ten days I will have my third surgery without any worse incisions. Mine are bad enough as it is. It goes from the base of my right ear to the left side of my lower neck. Although Mederma works great, it's still going to take awhile for the new scar to fade away again. It just started fading from my June surgery and I am getting feeling back in parts of my neck, chest and ear. I am hoping the next surgery won't create more nerve damage.

I think you are smart to wait. It's not that far away and Papillary cancer is slow moving. RAI isn't so bad. When you get through it you will feel a bit drained. Don't plan on doing much for at least two to three days after you get out of isolation. I have heard of people that drink too much water and get really sick from it. They want you to keep hydrated but remember not to overdo it. I liked sucking on Jolly Ranchers and Lifesavers to keep my salivary glands producing and I haven't had any problems with pain or a weird taste in my mouth like other people have reported.

It's great that you have a support system. I feel very lucky in that aspect too. I will keep you in my thoughts and prayers. Keep me updated on your progress. Let me know if you need tips for foods that are low-no iodine. I had to do the diet for about a month with my scan and then my treatment.

Blessings,
Julie-SunnyAZ

My case sounds EXACTLY the same.....
Hi,

I am new to the boards as well. I have had "thyroiditis" since 1996....took synthroid all this time, but switched to Armour 90mg last June. Last April, I went to a new doctor...an internal medicine dr.....he thought the nodule looked "very suspicious" on sonogram, but the FNA came back benign. I received a second opinion in June from an endo who is supposed to be the "Best in Dallas." He also suggested we wait and do nothing. So, that is what I did all summer. In early November, I decided to call an ENT surgeon that another thyroid cancer patient referred me to....I met with him the first week of November and he had me scheduled for surgery within a week. His decision to recommend surgery was due to the fact that there was a 2cm nodule and the lymph nodes next to it were swollen. So, I had Surgery #1 on Nov. 17th....a right lobectomy and two lymph nodes. I found out on 11/22 that it was cancer....papillary carcinoma-follicular variant-encapsulated. However, it came back that the lymph nodes were benign. Surgery #2 was on 11/30 and showed no signs of cancer on the left lobe. They also verified that I did have Hashimoto's all this time (no one had every mentioned that to me.) I do not see the endocrinologist until 1/4/11. My ENT surgeon and the endo have already discussed that there is no need for radioactive iodine. I guess I would rather be safe than sorry. How will I be able to tell if I need it or not. I read stories like yours and I am terrified. I mean, if I hadn't been all over Dallas knocking on doors asking someone to look at me, I would still be walking around with cancer! I, too, have heard that this type of cancer is a "cake-walk."

I want to do everything I can to ensure it doesn't come back.....should I ask for the RAI? What about the BRAF test....should I request that? What type of doctor does it and how? What tests can I expect in January with the endo? I am really scared, can't sleep at night, on edge....I am sure the lack of a thyroid has something to do with that (I am still taking my 90mg of Armour), but so does the anxiety that comes along with cancer.

I have been reading the boards for some time....I live in a suburb of Dallas and I have a great husband (who is very stressed) and two wonderful little boys that are 7 and 10 years old. I own an academic preschool.

I would love to hear from you....thank you in advance for any advice you can give. You both are in my prayers :-)

Thanks,
Marlo

momtoboys said:

My case sounds EXACTLY the same.....
Hi,

I am new to the boards as well. I have had "thyroiditis" since 1996....took synthroid all this time, but switched to Armour 90mg last June. Last April, I went to a new doctor...an internal medicine dr.....he thought the nodule looked "very suspicious" on sonogram, but the FNA came back benign. I received a second opinion in June from an endo who is supposed to be the "Best in Dallas." He also suggested we wait and do nothing. So, that is what I did all summer. In early November, I decided to call an ENT surgeon that another thyroid cancer patient referred me to....I met with him the first week of November and he had me scheduled for surgery within a week. His decision to recommend surgery was due to the fact that there was a 2cm nodule and the lymph nodes next to it were swollen. So, I had Surgery #1 on Nov. 17th....a right lobectomy and two lymph nodes. I found out on 11/22 that it was cancer....papillary carcinoma-follicular variant-encapsulated. However, it came back that the lymph nodes were benign. Surgery #2 was on 11/30 and showed no signs of cancer on the left lobe. They also verified that I did have Hashimoto's all this time (no one had every mentioned that to me.) I do not see the endocrinologist until 1/4/11. My ENT surgeon and the endo have already discussed that there is no need for radioactive iodine. I guess I would rather be safe than sorry. How will I be able to tell if I need it or not. I read stories like yours and I am terrified. I mean, if I hadn't been all over Dallas knocking on doors asking someone to look at me, I would still be walking around with cancer! I, too, have heard that this type of cancer is a "cake-walk."

I want to do everything I can to ensure it doesn't come back.....should I ask for the RAI? What about the BRAF test....should I request that? What type of doctor does it and how? What tests can I expect in January with the endo? I am really scared, can't sleep at night, on edge....I am sure the lack of a thyroid has something to do with that (I am still taking my 90mg of Armour), but so does the anxiety that comes along with cancer.

I have been reading the boards for some time....I live in a suburb of Dallas and I have a great husband (who is very stressed) and two wonderful little boys that are 7 and 10 years old. I own an academic preschool.

I would love to hear from you....thank you in advance for any advice you can give. You both are in my prayers :-)

Thanks,
Marlo

Hi Cathy, Marlo and Craig!
Hope everyone had a good day. Just got home from a long day at the doctor's office. I had to send two patients to the ER today. Looks like one might not make it through the night. So very sad.

Marlo, get that other half of your Thyroid OUT of there and then do the RAI. ESPECIALLY because of the Follicular variant. Any remaining tissue leaves you open to recurrence and metastasis for the rest of your life. Don't mess around and get a second or third opinion if necessary. I can not think of any reason to have you on Armour. It is the oldest drug around and isn't as good as Synthroid (generic: Levothyroxine). This comes from the doctor I work for and he is very intelligent. Very few patients are on this and it's usually elderly people who have been on it for years and refuse to make the switch or they have some sort of Allergy to other "tried" medications. Definitely have them test your tissue for the B-RAF mutation gene, they should still have it in the lab. This should be done as a standard operative procedure. It is a new test that many doctors don't even know about yet. It was recently discovered. It makes the cancer more aggressive and harder to treat. They will need to be much more aggressive with your treatments if you are positive and I believe about 43-45% of people are positive. I don't agree with your ENT or your Endo. I am the patient that the ENT and Endo decided not to do RAI after my Thyroidectomy. I have had recurrence, twice. I am going into surgery in 10 days to remove the Lymph node that the ENT missed on the second surgery and has spread again even with RAI after the second surgery. I was positive for the B-RAF on the second surgery. I don't know why they didn't test on the first surgery. My Cancer was only 1st stage and they said that the RAI risks outweighed the benefits. NOT the case. There are few risks to RAI. I would advise getting a new (? younger) doctor. Anyone in your situation needs an Oncologist/Endocrinologist/Surgeon. I have one here in Arizona now at the UMC Cancer Center. I wish I had been sent to him before my first surgery. ENT's should NOT be allowed to treat cancer! My ENT did not know that the 6th section of the neck is where the cancer spreads first. That is where the Sonogram showed my Lymph node and was biopsied in May before my second surgery in June. He removed thirty four nodes from section 3, 4 and 5 (only three of them were cancerous). These sections are the second place it spreads. He didn't even consider looking in section 6 where it had to have originated. The node was pinpointed explained and basically drawn on a map for him and he still missed it! It practically had a bulls eye on it.

Cathy, it seems that it's possible 100 mcg's is too low of a dose for someone in your situation. I am on 175 mcg's and I am at the levels they want me at for the first three years after the Thyroidectomy. Maybe get another opinion on that as well. This could be why you are having depression or anxiety. Again, I am not a doctor but I do work in the Medical field. I have access to lots of information and I see lots of mistakes made. This is all just my personal take based on my education, experience on everything you are both describing. Don't hesitate or feel embarrassed to get another opinion if you don't trust what your doctor is telling you, how he is treating you or if he is so stupid he can't remember what he already told you "three times". This is your LIFE we are talking about. INSIST on the best care and the best doctor.

Best wishes to everyone and prayers going out too.
Julie-SunnyAZ

nasher said:

to cathy and others

for myself they had me on a low dose of synthroid

the forumla they use for adults is 1.7mcg/kg/day

so for my weight i should have been on 250 and was on 200... they just put me on 250's.

they also noticed that i was showing most the signs for depresion and put me on welbrutrin

acording to my ENDO they dont test most people for the B-RAF mutation gene since most doctors havent goten all the updates on this or the labs are not up to date.

I also feel if they took 1/2 of it and there was cancer whats the odds the other 1/2 the left has cancer. My ENT as soon as they found it was cancer said they strongly recomended the 2nd 1/2 be removed and they set me up for a surgery date as they were leting me decide cause in their opinion its easyer to cancle a surgery then get one scheduled quickly.

oh it took me alot of prying to get the formula out of my ENDO as well. Also 1-2 weeks after you get labs done go to the lab and get a hardcopy of your results cause you are entitled to it and that way you know when they say your in "the normal range" weather or not there might be a problem.

the radiaion tecs tried to talk me out of the RAI but from all the peopel i have seen with recurant I definatly insisted... sure I got some of the annoying side effects but it was worth it.

i dont have an Oncologist but the Endo definatly is takeing good care of me and spending lots of time talking it all over with me

@ Cathy 100 mcg would be for a person 130 lbs.. dont want to ask about weight but if thats not right you are probably on the wrong dose... even if it is the right for your weight for the formula it still dosnt mean its the right dose it just is to give them a basis for where to start.

for myself they put me on Cytomel (Liothyronine) when they first did they thyrodecomy completion cause they knew I was going through the RAI and it has a shorter biological half life. but after RAI they put me on synthroid.

I am sure you are not crying for no reason.. its probaly just your mind catching up to everything happening to you... if you continue to have depression though they may want to put you on some anti-depressents at least tempoarly to get you through the lovely treatments...

as for repeating things (in the military) they teach us that when we do training that ANY point that we want to make sure they remember has to be discussed 3x during the lecture. Your doc may have been makeing sure you got some facts... BUT... if he is that forgetfull I dont think i would want him anywhere near my healthcare

oh and if anyone can give me a list of the tests I should be insisting the docs take for me and monitor please do.

... sorry if i jump from point to point but that is how my mind works now.

oh you might also have a calcium and or vitamin D defficency. (i had both) they didnt test for alot of things that could have happened and cause of that they are trying to get levels back to where they should be now.

when i was in the early stages i also got to see a mental health provider and it helped.

Definatly check around for support groups they are all around and it is amazing how much they help.

best wishes to all and looking forward to updates

Craig

Dosage
Craig,

Could you please explain how dosage is calculated? My TSH is .02 but I have no energy. My current dose is Synthroid 150 mcg's daily. I was diagnosed with Hurthle Cell Carcinoma, Stage 3 in July 09. I am now dealing with a recurrence or residual, can't be determined.

Thank you,
Shelia

sunnyaz said:

Hi Cathy, Marlo and Craig!
Hope everyone had a good day. Just got home from a long day at the doctor's office. I had to send two patients to the ER today. Looks like one might not make it through the night. So very sad.

Marlo, get that other half of your Thyroid OUT of there and then do the RAI. ESPECIALLY because of the Follicular variant. Any remaining tissue leaves you open to recurrence and metastasis for the rest of your life. Don't mess around and get a second or third opinion if necessary. I can not think of any reason to have you on Armour. It is the oldest drug around and isn't as good as Synthroid (generic: Levothyroxine). This comes from the doctor I work for and he is very intelligent. Very few patients are on this and it's usually elderly people who have been on it for years and refuse to make the switch or they have some sort of Allergy to other "tried" medications. Definitely have them test your tissue for the B-RAF mutation gene, they should still have it in the lab. This should be done as a standard operative procedure. It is a new test that many doctors don't even know about yet. It was recently discovered. It makes the cancer more aggressive and harder to treat. They will need to be much more aggressive with your treatments if you are positive and I believe about 43-45% of people are positive. I don't agree with your ENT or your Endo. I am the patient that the ENT and Endo decided not to do RAI after my Thyroidectomy. I have had recurrence, twice. I am going into surgery in 10 days to remove the Lymph node that the ENT missed on the second surgery and has spread again even with RAI after the second surgery. I was positive for the B-RAF on the second surgery. I don't know why they didn't test on the first surgery. My Cancer was only 1st stage and they said that the RAI risks outweighed the benefits. NOT the case. There are few risks to RAI. I would advise getting a new (? younger) doctor. Anyone in your situation needs an Oncologist/Endocrinologist/Surgeon. I have one here in Arizona now at the UMC Cancer Center. I wish I had been sent to him before my first surgery. ENT's should NOT be allowed to treat cancer! My ENT did not know that the 6th section of the neck is where the cancer spreads first. That is where the Sonogram showed my Lymph node and was biopsied in May before my second surgery in June. He removed thirty four nodes from section 3, 4 and 5 (only three of them were cancerous). These sections are the second place it spreads. He didn't even consider looking in section 6 where it had to have originated. The node was pinpointed explained and basically drawn on a map for him and he still missed it! It practically had a bulls eye on it.

Cathy, it seems that it's possible 100 mcg's is too low of a dose for someone in your situation. I am on 175 mcg's and I am at the levels they want me at for the first three years after the Thyroidectomy. Maybe get another opinion on that as well. This could be why you are having depression or anxiety. Again, I am not a doctor but I do work in the Medical field. I have access to lots of information and I see lots of mistakes made. This is all just my personal take based on my education, experience on everything you are both describing. Don't hesitate or feel embarrassed to get another opinion if you don't trust what your doctor is telling you, how he is treating you or if he is so stupid he can't remember what he already told you "three times". This is your LIFE we are talking about. INSIST on the best care and the best doctor.

Best wishes to everyone and prayers going out too.
Julie-SunnyAZ

My case sounds EXACTLY the same.....MORE ?s from Marlo:
Hi Julie,

I have had the whole thyroid removed over two surgeries. Regarding the medication, I took Synthroid from 1996 until the summer of 2010....honestly, I never really felt that good on it. In June, they decided to try Armour (the thought was that the T3 would give me more energy), so I have only been on it since then. I do think I felt a little bit better on it....hard to say because at that point I started stressing about the 2 cm nodule being "suspicious." I have read that they do not recommend that cancer patients take Armour because it is harder to produce a consistent TSH with Armour. I am fine with taking another T4 drug, but I will ask for a different brand name than Synthroid.

I do want to take the RAI....I know it will be a hard couple of months doing so, but then I will be able to rest at night knowing I did everything possible to prevent a reoccurence.
What is the blood test that is the marker after thyroidectomy? Is it thyroglobulin? Did they do this with you prior to making the decision against RAI? Also, did they do scans?

I am sure more questions will come to mind....it is so nice to know that you all are out there to help :-) Thanks for everything and you all are in my thoughts and prayers.
Marlo

momtoboys said:

My case sounds EXACTLY the same.....MORE ?s from Marlo:
Hi Julie,

I have had the whole thyroid removed over two surgeries. Regarding the medication, I took Synthroid from 1996 until the summer of 2010....honestly, I never really felt that good on it. In June, they decided to try Armour (the thought was that the T3 would give me more energy), so I have only been on it since then. I do think I felt a little bit better on it....hard to say because at that point I started stressing about the 2 cm nodule being "suspicious." I have read that they do not recommend that cancer patients take Armour because it is harder to produce a consistent TSH with Armour. I am fine with taking another T4 drug, but I will ask for a different brand name than Synthroid.

I do want to take the RAI....I know it will be a hard couple of months doing so, but then I will be able to rest at night knowing I did everything possible to prevent a reoccurence.
What is the blood test that is the marker after thyroidectomy? Is it thyroglobulin? Did they do this with you prior to making the decision against RAI? Also, did they do scans?

I am sure more questions will come to mind....it is so nice to know that you all are out there to help :-) Thanks for everything and you all are in my thoughts and prayers.
Marlo

Medication and More
Hi Marlo,
I am sure there are good reasons for different meds for different people. I am allergic to the dye they put in Synthroid and have asked about changing my meds. I am itchy and annoyed all the time.

I am glad you are having the RAI. It won't be so bad. I hope you will have help with your boys and I pray that you won't have to work a difficult job if you work. Try to look at the isolation part of it as "me time." Do things you like to do by yourself. I only had four days of isolation and I had about 80 mCI (millicuries) of I-131.

They test for total TSH (Thyroid Stimulating Hormone) Free T4 (which converts to TSH in your body) and Thyroglobulin levels. They based the decision against RAI due to my Stage of cancer and my age. I was 42. They did my RAI scan this past September after my Lymphectomy in June. I first did a scan dose and then the Treatment dose. After treatment they did another scan to see it there were Thyroid cells lighting up. They were and that's how we knew the RAI took up in my cells. However, RAI doesn't take up in cancer cells. They couldn't see any nodes on my scans

Hope you are doing okay. One day at a time!
Julie