Where are all the Follicular Thyroid cancer survivors??

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

TSH
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.

Shimmy said:

Follicular
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

Hi Shimmy
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

akfiresgirl said:

Papillary and Follicular here...
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.

Follicular Neoplasm w/ Vascular Invasion
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?

Baldy 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

Medical Reports Say Papillary Is The Only Fastest Growing Cancer

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 said:

Interesting

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

Other possibility

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