Where are all the Follicular Thyroid cancer survivors??
Comments
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Follicular v Papillary
Hi Catherine,
We Papillarys out number you Folliculars by better than 5 to 1 which probably explains why most of the posters here are Papillary.
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I don't know if anyone has suggested the National Cancer Institute web site to you, it's been very useful to me and very informative. Here are two links, the first is the page 1 for thyroid cancer and the second is titled "What you need to know about ...".
http://www.cancer.gov/cancertopics/pdq/treatment/thyroid/Patient/page1
http://www.cancer.gov/cancertopics/wyntk/thyroid
I guess I spent a week reading and rereading what they said. Among other things, you'll find the comparitive incidence rates for the various types of thyroid cancer.
Alan0 -
i am follicular and papillary
the large goiter i had 7.1 cm was follicular cancer
the smaller points 2 at 6 mm and 1 less than 3 mm with papillary
so i had 2 seperate types in diffrent areas of my thyroid.
yes papillary is more prevelant
also alot of people once they are in remission dissapear from the site.0 -
Incidence rate
I have read that the incidence rate of thyroid cancer is on the rise, does anyone know if this applies equally to all types? Maybe this also explains the prevalence of people with Papillary on this site. It may be that the incidence of Papillary is increasing while the other types remain constant.
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Craig,
Do you know if your Papillary tumors had metastasized? You are the only one here who speaks of tumor sizes in the MMs instead of CMs. I ask because my 4 tumors were from 2.6 mm to .8 mm. My endo told me NEVER had tumors so small metastasized before. Other than being told I have thyroid cancer, being told my tumors are unique scares me the most.
Alan0 -
Thanks for the repliesBaldy said:Incidence rate
I have read that the incidence rate of thyroid cancer is on the rise, does anyone know if this applies equally to all types? Maybe this also explains the prevalence of people with Papillary on this site. It may be that the incidence of Papillary is increasing while the other types remain constant.
===
Craig,
Do you know if your Papillary tumors had metastasized? You are the only one here who speaks of tumor sizes in the MMs instead of CMs. I ask because my 4 tumors were from 2.6 mm to .8 mm. My endo told me NEVER had tumors so small metastasized before. Other than being told I have thyroid cancer, being told my tumors are unique scares me the most.
Alan
Thanks for replying Alan and Craig. From what I've read and researched Follicular Thyroid cancer is less common (only 20% of Thyca compared to 80% with Papillary), but I still figured there would be one or two Follicular fellows about! And your probably right about people leaving the boards once they are in remission.
I have read lots about both cancer types and what scares me is that FTC supposedly has a greater tendency to spread due to vascular invasion, which my cancer has shown evidence of so I guess I'm looking for stories of FTC survivors who have had this happen. But reading about you PTC survivors I'm quite alarmed by YOUR rates of returning/metastasizing cancers. Apparantly FTC ivolves an approximate chance of distant spread of 20-30%, what are the stats for papillary?0 -
Papillary TumorsBaldy said:Incidence rate
I have read that the incidence rate of thyroid cancer is on the rise, does anyone know if this applies equally to all types? Maybe this also explains the prevalence of people with Papillary on this site. It may be that the incidence of Papillary is increasing while the other types remain constant.
===
Craig,
Do you know if your Papillary tumors had metastasized? You are the only one here who speaks of tumor sizes in the MMs instead of CMs. I ask because my 4 tumors were from 2.6 mm to .8 mm. My endo told me NEVER had tumors so small metastasized before. Other than being told I have thyroid cancer, being told my tumors are unique scares me the most.
Alan
Hi Alan,
My Papillary tumor was about 6 mm's and metastasized to the lymph nodes. However, I am B-RAF positive. My cancer was considered stage 1 and my Endo opted not to do RAI after my TT. I thought that was odd but he was pretty sure I had caught it in time and wouldn't need to do RAI. He didn't know that I was B-RAF positive until after it had metastasized and they tested my Lymph nodes for the mutation.
Blessings,
Julie-SunnyAZ0 -
Incidence & Distant Spreadwarriormum said:Thanks for the replies
Thanks for replying Alan and Craig. From what I've read and researched Follicular Thyroid cancer is less common (only 20% of Thyca compared to 80% with Papillary), but I still figured there would be one or two Follicular fellows about! And your probably right about people leaving the boards once they are in remission.
I have read lots about both cancer types and what scares me is that FTC supposedly has a greater tendency to spread due to vascular invasion, which my cancer has shown evidence of so I guess I'm looking for stories of FTC survivors who have had this happen. But reading about you PTC survivors I'm quite alarmed by YOUR rates of returning/metastasizing cancers. Apparantly FTC ivolves an approximate chance of distant spread of 20-30%, what are the stats for papillary?
NCI has the incidence rates at ...
80% Papillary
15% Follicular
3% Medullary
2% Anaplastic
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I guess the chance of distant spread would vary by stage. The lower the stage, the lower the chance. I think the pathology report post-surgery will attempt to answer the question of if there is distant spread. Have you discussed yours with a doc yet?0 -
Smallsunnyaz said:Papillary Tumors
Hi Alan,
My Papillary tumor was about 6 mm's and metastasized to the lymph nodes. However, I am B-RAF positive. My cancer was considered stage 1 and my Endo opted not to do RAI after my TT. I thought that was odd but he was pretty sure I had caught it in time and wouldn't need to do RAI. He didn't know that I was B-RAF positive until after it had metastasized and they tested my Lymph nodes for the mutation.
Blessings,
Julie-SunnyAZ
Hi Julie,
My endo was almost going to do the same thing. When I talked to him immeadiately following the surgery and after he saw the path report, he wasn't sure if RAI was right or not, he said he was 50-50.
When I spoke with him a month or so later. He decided that the very small size of the tumors required RAI. He said since the tumors were so small, any fragments left from the surgery may contain a tumor. I'm glad he changed his mind, if he hadn't, I would have done my best to persuade him to go with the RAI. I was {and still am} worried there may be more lymph node involvement. They took most of the right neck nodes and a few left neck, but most of the left neck nodes are still there. Once he told me about fragments containing tumors, I was even more in favor of RAI.
My surgeon said lymph node involvement is almost always unilateral as opposed to bilateral {one side of the neck only.} But when the lymph node in my neck popped up in Sept, I was told odds are it's nothing, so I waited and saw for two months, then referred from doc to doc for two more months, then cancer. When it comes to my health, I don't play the odds anymore. As far as I'm concerned, if there's a possibility, no matter how small, do something! Treat it! Test it! Something! {To be fair to the first doctor, she was sure it wasn't Lymphoma, and she was right. Right up until the biopsy, every doc palpated and said, "Doesn't feel like Lymphoma to me." To be even fairer, she palpated my thyroid and found nothing. But there's no way she would have, a pre-surgical sonogram showed nothing as well, the tumors were too small.}
Speaking of my lymph nodes, I think it's both good and bad that nearly all my right side nodes are gone. Good that I don't have to worry about microscopic amounts of cancer being in them. Bad that I no longer have nodes that will pop up to warn me that something bad may be happening. If the first node hadn't popped up when it did, I'd still be blissfully unaware. I guess everything is a trade off.
Alan0 -
didnt look likeBaldy said:Small
Hi Julie,
My endo was almost going to do the same thing. When I talked to him immeadiately following the surgery and after he saw the path report, he wasn't sure if RAI was right or not, he said he was 50-50.
When I spoke with him a month or so later. He decided that the very small size of the tumors required RAI. He said since the tumors were so small, any fragments left from the surgery may contain a tumor. I'm glad he changed his mind, if he hadn't, I would have done my best to persuade him to go with the RAI. I was {and still am} worried there may be more lymph node involvement. They took most of the right neck nodes and a few left neck, but most of the left neck nodes are still there. Once he told me about fragments containing tumors, I was even more in favor of RAI.
My surgeon said lymph node involvement is almost always unilateral as opposed to bilateral {one side of the neck only.} But when the lymph node in my neck popped up in Sept, I was told odds are it's nothing, so I waited and saw for two months, then referred from doc to doc for two more months, then cancer. When it comes to my health, I don't play the odds anymore. As far as I'm concerned, if there's a possibility, no matter how small, do something! Treat it! Test it! Something! {To be fair to the first doctor, she was sure it wasn't Lymphoma, and she was right. Right up until the biopsy, every doc palpated and said, "Doesn't feel like Lymphoma to me." To be even fairer, she palpated my thyroid and found nothing. But there's no way she would have, a pre-surgical sonogram showed nothing as well, the tumors were too small.}
Speaking of my lymph nodes, I think it's both good and bad that nearly all my right side nodes are gone. Good that I don't have to worry about microscopic amounts of cancer being in them. Bad that I no longer have nodes that will pop up to warn me that something bad may be happening. If the first node hadn't popped up when it did, I'd still be blissfully unaware. I guess everything is a trade off.
Alan
According to all the pathology reports it doesn’t look like any of my cancers metastasized ... but we will find out as the years go on.
Yes the docs were 50-50 on whether RAI would be useful to me or not and I was the one who pushed for it. Ok my Endo and my ENT said I should also it was the Nuclear Medicine docs who were 50-50.
Yes I am defiantly into doing that 1 extra test just in case it could be
A lot of the Nuclear Medicine Docs are more cautious on Irradiating or chemo now days cause of all the side effects they have. I honestly expect the reason is that way when you insist on the treatment if the side effects are much greater than you expected they can be in the right.
And hopefully for anyone who got RAI there will be no re-occurrence so there is never a for sure if you needed it or not... so again they can call themselves right... and if you get a re-occurrence well then they can tell you they were being cautious to make sure you knew the side effects... (Sounds more like politics than medicine to me)
Craig0 -
follicular thyroid cancernasher said:didnt look like
According to all the pathology reports it doesn’t look like any of my cancers metastasized ... but we will find out as the years go on.
Yes the docs were 50-50 on whether RAI would be useful to me or not and I was the one who pushed for it. Ok my Endo and my ENT said I should also it was the Nuclear Medicine docs who were 50-50.
Yes I am defiantly into doing that 1 extra test just in case it could be
A lot of the Nuclear Medicine Docs are more cautious on Irradiating or chemo now days cause of all the side effects they have. I honestly expect the reason is that way when you insist on the treatment if the side effects are much greater than you expected they can be in the right.
And hopefully for anyone who got RAI there will be no re-occurrence so there is never a for sure if you needed it or not... so again they can call themselves right... and if you get a re-occurrence well then they can tell you they were being cautious to make sure you knew the side effects... (Sounds more like politics than medicine to me)
Craig
I have had 3 thyroid surgeries done in 1978,1980 and 1990. In 2002, I was diagnosed with follicular thyroid cancer. I have had the radiation to the point where I can have no more. Now I have found out that next week I have to have yet another biopsy as there are some lymph nodes that they are concerned about. I am at a point where I swear I have a thyroid that will not die. The treatment plans my dr. gave me should this be cancerous were not particularly encouraging. What happened to thyroid cancer being a "good" cancer that is easy to treat? Needless to say, at this point, I am somewhat freaking out. Anyone else had their thyroid "regenerate" after having it totally (or so you thought?) removed? Terri0 -
Is this possible? I thought that once it was removed and Radiated there was no chance it could come back. Did they do an Ultrasound and find more Thyroid or cells?qultmkr said:follicular thyroid cancer
I have had 3 thyroid surgeries done in 1978,1980 and 1990. In 2002, I was diagnosed with follicular thyroid cancer. I have had the radiation to the point where I can have no more. Now I have found out that next week I have to have yet another biopsy as there are some lymph nodes that they are concerned about. I am at a point where I swear I have a thyroid that will not die. The treatment plans my dr. gave me should this be cancerous were not particularly encouraging. What happened to thyroid cancer being a "good" cancer that is easy to treat? Needless to say, at this point, I am somewhat freaking out. Anyone else had their thyroid "regenerate" after having it totally (or so you thought?) removed? Terri
Just Curious,
Julie-SunnyAZ0 -
how much radiation is the max???qultmkr said:follicular thyroid cancer
I have had 3 thyroid surgeries done in 1978,1980 and 1990. In 2002, I was diagnosed with follicular thyroid cancer. I have had the radiation to the point where I can have no more. Now I have found out that next week I have to have yet another biopsy as there are some lymph nodes that they are concerned about. I am at a point where I swear I have a thyroid that will not die. The treatment plans my dr. gave me should this be cancerous were not particularly encouraging. What happened to thyroid cancer being a "good" cancer that is easy to treat? Needless to say, at this point, I am somewhat freaking out. Anyone else had their thyroid "regenerate" after having it totally (or so you thought?) removed? Terri
i know they gave me 175mCi of RAI on my first treatment but i know thats higher than normal
I really didnt know they had a max... so now i am curious whats the max???
Craig0 -
Good questionnasher said:how much radiation is the max???
i know they gave me 175mCi of RAI on my first treatment but i know thats higher than normal
I really didnt know they had a max... so now i am curious whats the max???
Craig
I don't know, I do know that 75mCi is not the minimum. I asked the endocrine nurse in nuclear medicine, she said 50mCi is smaller, but not that it was the minimum. It sounds like they go in increments of 25 mCi.
Alan0 -
Good questionnasher said:how much radiation is the max???
i know they gave me 175mCi of RAI on my first treatment but i know thats higher than normal
I really didnt know they had a max... so now i am curious whats the max???
Craig
I don't know, I do know that 75mCi is not the minimum. I asked the endocrine nurse in nuclear medicine, she said 50mCi is smaller, but not that it was the minimum. It sounds like they go in increments of 25 mCi.
Alan0 -
Good questionnasher said:how much radiation is the max???
i know they gave me 175mCi of RAI on my first treatment but i know thats higher than normal
I really didnt know they had a max... so now i am curious whats the max???
Craig
I don't know, I do know that 75mCi is not the minimum. I asked the endocrine nurse in nuclear medicine, she said 50mCi is smaller, but not that it was the minimum. It sounds like they go in increments of 25 mCi.
Alan0 -
My Oopsnasher said:how much radiation is the max???
i know they gave me 175mCi of RAI on my first treatment but i know thats higher than normal
I really didnt know they had a max... so now i am curious whats the max???
Craig
Sorry people, this web site keeps hanging on me. Maybe there's something going on between it and IE9.0 -
Max Radioactive Iodinenasher said:how much radiation is the max???
i know they gave me 175mCi of RAI on my first treatment but i know thats higher than normal
I really didnt know they had a max... so now i am curious whats the max???
Craig
Hey Guys,
My Nuclear Medicine doctor told me that my dose of 178.3 mCi's was almost to the max which is 200 mCi's. I am not sure how many times you can have the max dose however. Not sure I ever want to find out either.
Blessings,
Julie-SunnyAZ0 -
papillary and follicular are
papillary and follicular are different. I have hurthle cell a variation of follicular, very rare. If there is anyone out there dealing with hurthle cell I would like to talk to you. Papillary not to worry, Papillary be more concerned. hurthle cell, medullary, anaplastic be very concerned.0 -
Dependsjaxonwalker said:papillary and follicular are
papillary and follicular are different. I have hurthle cell a variation of follicular, very rare. If there is anyone out there dealing with hurthle cell I would like to talk to you. Papillary not to worry, Papillary be more concerned. hurthle cell, medullary, anaplastic be very concerned.
Yes, they are all very different. Papillary without a B-RAF mutation gene, not to worry usually curable when caught in early stages. Papillary with a B-RAF mutation, be very worried and never stop following up. Very difficult to treat and faster growing than most Thyroid cancers. There are lots of aspects to each type of cancer, what stage and where and when (what age) the metastasis occurs. I don't know of any Anaplastic patients on this site as of yet. That is a scary one.0 -
By the wayjaxonwalker said:papillary and follicular are
papillary and follicular are different. I have hurthle cell a variation of follicular, very rare. If there is anyone out there dealing with hurthle cell I would like to talk to you. Papillary not to worry, Papillary be more concerned. hurthle cell, medullary, anaplastic be very concerned.
By the way, BellsAngels69 is a Hurthle Cell survivor. You might want to send a private message.
Julie-SunnyAZ0 -
Another HCC in treatmentjaxonwalker said:papillary and follicular are
papillary and follicular are different. I have hurthle cell a variation of follicular, very rare. If there is anyone out there dealing with hurthle cell I would like to talk to you. Papillary not to worry, Papillary be more concerned. hurthle cell, medullary, anaplastic be very concerned.
Hello, I have HCC as well, I am still in treatment. You can contact me anytime here or at csm2007@comcast.net0
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