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Where are all the Follicular Thyroid cancer survivors??

warriormum
Posts: 20
Joined: Mar 2011

I'm sure you're out there! I've been reading lots of older threads and have even done a search and it seems the majority of survivors here have the Papillary variant of Thyroid cancer (correct me if I'm wrong). I'd really like to hear some personal accounts of FTC.

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

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.

===

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.

Alan

nasher
Posts: 507
Joined: Apr 2010

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.

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

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.

Alan

warriormum
Posts: 20
Joined: Mar 2011

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?

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

NCI has the incidence rates at ...

80% Papillary
15% Follicular
3% Medullary
2% Anaplastic

===

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?

frust.mom
Posts: 2
Joined: May 2011

I had my thyroid removed Dec '09 and RAI treatment in April '10 (we had to wait because I had a newborn that I was nursing). I am beginning another round of the diet and small dose of RAI (only one day of isolation instead of 8) to see if spreading has occurred. I'll keep you posted of the outcome, but my endo seems confident I should be clear. Have you already gone through treatment? If it makes you feel better, when I asked what happens if it has spread, the answer I got was basically more of the same treatment, and that it is usually easily treatable. This made me breathe easier.

Shimmy
Posts: 1
Joined: May 2011

Hi Warriormom

I am just starting this journey with Follicular. Unfortunatly, it went undiagnosed for about a year. My GP sent me to a horrible endrogonologist, so I am not messing around. Finding someone new tomorrow. This is the scariest thing. Trying to keep from panicking. Keeping you in my thoughts.

Shimmy

sunnyaz
Posts: 582
Joined: Oct 2010

Hoping the best outcome for you. Hang in there and never give up. We are here for support, encouragement, information sharing and to listen to vents. Keep us posted on your progress. I too was undiagnosed for almost a year (Papillary with a B-RAF mutation gene). I had symptoms I was sure was Thyroid related and tried to convinced my GP that even though my blood tests were all normal something was very wrong. Then one day, I felt the node in my neck. I insisted on a sonogram and biopsy. Sure enough, the "C" word. I had been telling him for eleven months that my symptoms were related to my thyroid and he just called my a "worry wart". I think that was a polite term for Hypochondriac. I was lucky and got in to see a good Endocrinologist. Then the Endocrinologist sent me to a very good Oncologist. I highly recommend an Oncologist that specializes in Endocrinology cancer as well. Mine also does my surgeries. Have had three since November 2009 with two RAI treatments.
Blessings,
Julie-SunnyAZ

sunnyaz
Posts: 582
Joined: Oct 2010

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

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

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

nasher
Posts: 507
Joined: Apr 2010

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

qultmkr
Posts: 2
Joined: Jan 2005

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

sunnyaz
Posts: 582
Joined: Oct 2010

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?

Just Curious,
Julie-SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

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

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

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.

Alan

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

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.

Alan

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

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.

Alan

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

Sorry people, this web site keeps hanging on me. Maybe there's something going on between it and IE9.

sunnyaz
Posts: 582
Joined: Oct 2010

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-SunnyAZ

frust.mom
Posts: 2
Joined: May 2011

I haven't had thyroid regeneration, but I know right after my surgery, my endo kept "upping" my dose to make sure my TSH levels were high to fool my pituitary gland, which was suppose to help decrease the chance of spreading. You may want to look into that.

mhc4165
Posts: 46
Joined: Dec 2008

Yes, plenty of medical reports including from The National Cancer Institute and others say that thyroid cancer is the fastest growing cancer,but they are only finding a real increase in small,and even some larger sizes of papillary,the most common type of thyroid cancer. They aren't finding a real increase in follicular,and the worse rare types like medullary and anaplastic.

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

I just read an article on the New York Times web-site in which some doctors are questioning if there is a true raise in the incidence of Papillary Thyroid Cancer.  They say in most cases, the raise can be attributed to better diagnostic procedures that find very small tumors that were undetectable before.  Some doctors think that these tumors, if left untreated, would not develope into a life threatening problem.  They go so far as to say the mortality rate from surgical complications probably exceeds the mortality rate if the cancer is left untreated.

(To be certain the incidence rate is increasing, I guess we would need to wait 20 years from when the better diagnostic procedures came into general use.  20 years being what I was told was the life expectenancy from onset of someone with Papillary Thyroid Cancer.)

===

Seems dubious to me, I realize Papillary is probably the slowest growing cancer there is, {and I bet the NYT article simplifies the message the doctors are trying to give,} but if you don't expect to die from something else in the next 20 years, I can't see ignoring Papillary Thyroid Cancer.  I agree that if you are already in failing health or in your 70s or older, than the cure may be worse than the disease if the disease is Papillary Thyroid Cancer.  But if you're younger, particularly much younger, it seems foolish to me to let it go untreated.

Alan

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

On the other hand, and this is my guess only, maybe Papillary can be caused by environmental factors and the others can't.  I've read that one of the causes of thyroid cancer is being exposed to Iodine 131.  I also remember seeing following the Japanese nuclear plant being wrecked by the typhoon, that I-131 had been released into the environment and that the local population could expect an increase in the incidence of thyroid cancer.  I don't know if there has been an overall increase in the level of radioactive iodine in the world or not, could be though.

Alan

jaxonwalker
Posts: 2
Joined: Apr 2011

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.

sunnyaz
Posts: 582
Joined: Oct 2010

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.

sunnyaz
Posts: 582
Joined: Oct 2010

By the way, BellsAngels69 is a Hurthle Cell survivor. You might want to send a private message.
Julie-SunnyAZ

csm2007
Posts: 25
Joined: Dec 2010

Hello, I have HCC as well, I am still in treatment. You can contact me anytime here or at csm2007@comcast.net

akfiresgirl
Posts: 2
Joined: Jun 2011

I was diagnosed 7 years ago with papillary cancer in one lobe and follicular in the other. Docs didn't think that I had either and thought I was just not only overweight but lazy and sleeping 20 hours a day. Had 10 spots of papillary in the left lobe and 6 spots of follicular in the right. Needless to say I was surprised when I was diagnosed, but was happy to finally know what the issue was. Had RAI in Oct of 2004 and had my second child 3 years later with no complications other than GD. My endocrinologists that I have had in both Tacoma, WA and Anchorage, AK are among the best in the nation in my opinion. Now 7 years out cancer free with no reoccurance, my Synthroid levels are at 225-250. Still a lot, but better than the 300 I used to be on! I am grateful that this site is here to share and recently stumbled upon it. I wish everyone courage and good health.

fskcosta's picture
fskcosta
Posts: 2
Joined: Jul 2011

I was diagnosed Nov. 2010 (age 33) after FNA came back as suspicious and doctors recomended partial removal. I had my 2nd surgery Feb. 2011 and I-131 in Apr. 2011. I've been reading quite a few of the post about Thyroid Cancer and was quite shocked that so many people were afraid of it. My doctor told me she couldn't believe how well I took it, but when I explained what my husband was going through I told her I felt like this was comparable to the Flu. My husband has stage 4 esophageal cancer with brain mets. He was first diagnosed in 2007 as stage 3 and in March 2010 we found the brain mets. So after dealing with everything that was thrown at us for him, this just seemed more like a pain in the rear-end that I didn't have time for. My only issue is that I'm an emotional wreck. I've always handled all of the stress of my husbands cancer really well, but since the TT I can cry at the drop of a hat and when my husband "vents" I take it really personal and I never used to.

I do have a question for everyone, my husband has always said that my libido was low. I always told him his was just too high. Has anyone else ever had this problem?

3boys_mom
Posts: 47
Joined: Jun 2011

I used to have a very high a very high libido, but now that I am severely hypo (my appointment with MD Anderson is July 20th) I have absolutely *NO* libido! This happened over a period of 3 months! It really sucks.

Sarah

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