Not a real cancer?

loispol1 said:

Hi and thank you for the message!
I am having a lot of reservations about the surgery and thinking of getting another opinion. My hurthle cell tumor is not large (yet) 1.3-1.6 cm or something. I am uncertain about where I am going and thinking maybe it wouldn't be such a struggle if I went to John Hopkins. Maybe I do not really have cancer. There is that percentage I don't? So you had a FNA Huthle cell neoplasm but ended up having follicular cancer? I am scheduled to have my whole thyroid removed because of all the nodules and hasimotos and I do not have enough strength for two operations. My allergies are so severe to medications, I am afraid only of the surgery itself, believe it or not.

Thanks for writing me, I feel so alone. I have been spring cleaning to try to get away from own thinking, but in the end I am still worrying like crazy. Well I went to luch with the team but got the feeling the person who announced that Thyroid cancer, and was the good kind to get alreedady announced to them when I wasn't there, I need counseling (instead of listening to me she sent me link to her church counselor! Yeah, like in the middle of researching and going to appointments non-stop, driving 3 hours back and forth for multiple trips and making telephone calls to get information at the doctors office, I am going to stop everything and go talk to some stranger about my medical situation. Honestly right now, the last thing place I want to go for help or advice would be a generic church counselor or another appointment! What would have been great was a friend who would have listen and offered some comfort. I am always there for everyone and no one is hardly ever there for me.

Anyway, the team captain said to me "don't you have anyone to help you through all of this"? That made me feel really small. What is wrong with people, why can't they just say something nice like "sorry you are going through this", and "if you need help let me know"?

Okay, I went off on a rant, sorry, please forgive me. Guess I am having a pitty party for myself again. This whole situation really has been tough!

Thank you so much for your kind words and cyber hugs! It meant alot!

Thanks for the encouragement and telling me about your surgeries, sorry you had two of them!
Did they find any hurthe cells on the permanent biopsy? Are you off of thyroid meds now while wating for the Radioactive iodine treatments? I am severely allergic to iodine. I guess that course of action will be out for me should they find any of my thyroid has cancer.

Sorry to sound so self centered! Well rest up and thanks again!
Lois

Oh Lois...
You're absolutely not alone. I went exactly thru what you have gone thru and it was so AWFUL! I absolutely went crazy, was obsessive of cancer sites and all the cures/tricks/progressions... The medical staff said that they were not sure due to inconclusive FNA result and it drove me nuts. I took time to select the hospital/surgeon/endo doctor. So I chose Johns Hopkins and oh it was so wonderful. The staff was so fantastic.

Yes the people have changed overnight toward me and I was shocked since I thought that we were going to band and fight together against cancer just in case..... At least I know who are my true friends......

I quit taking Levo three days ago and so far I feel great without them. Levo gradually made my body going crazy and I got so tired of that. I'll go back to Dr and tell her about it. She'll probably scold at me anyway.

Don't ever trust FNA results until after surgery... The waiting part is the worst but just take it easy on your post-surgery body especially neck area.

Don't go crazy-shopping and overcharging the credit card.. I did compulsively buy almost everything so I wouldn't look "cheap and sick" anymore... So after the final result (noncancerous tumor), I was so embarrassed...

kkirsits said:

thanks
Thank you --- no, there really is not anyone I can get a loan from. The only person I could go to would be my mom and that is not an option. Last year someone annonymous person paid my water bill (cash) and when I asked her if she had done it, she went off on me that it was pretty sad that I couldn't even pay my water bill, was it overdue, on and on and the final words were that I had no pride in myself. Mind you, I had broken my elbow the first week in January, which required surgery, was having car problems (which by the way is about 18 years old and will eventually have to be replaced)plus had to have my scan done. Now that I am almost debt free and realize the amount of money I bring home and what my medical expenses are, there is not anyway I can live on my own. Best case scenario is to live with my mom so I don't have to pay rent, but she will just brow beat me because she feels that because she is my mom she has the right to verbally abuse me. I have very limited contact with her. Again, thanks for letting me vent.

Thyroid Cancer, ablation, scans and a lifetime of Medication
I find it very insulting when people down grade my condition. Im in the US Army and spent some time over on Kuwait and when I got home found a nodule in my thyroid area. Im a medic and I Knew it wasnt normal. Went to sick call to the ENT and after a few tests did a Fine Needle Aspiration and determined that I had some suspicious cells. Had surgury which turned out to be cancerous. Full Thyroidectomy with pappilary involvement and 1 Lymphnode. Did the Ablation 3 weeks later and theoretically all was well. Started My HRT with Synthroid 75McG and my TSH came back a 64. The military Doc told me outright that I wasnt taking my Meds. and that unless I was an "Alien" and that Synthroid doesnt work on me" That I better get it together. Now mind you Im 6'4" tall 240 Lbs and im on 75 McG of Synthroid? I waited another 6 Weeks and again my TSH came back a 52.5. The Doc called me and said the samew thing..."Stop messing around and take your meds". I told the Doctor I was going elsewhere and that I no longer wanted him as my Provider and he said....."to be honest, your making a big deal out of something as small as Papillary Thyroid Cancer"......I went to the University of Washington and they took my Meds to 275 Mcg and told me not to seek care from non specialist clinics.

So heres the deal.....I guess if your compairing stage 4 Lung Cancer to stage 1 Thyroid cancer ya its better to have the later, but after my treatments I had Panic attacks, depression, my hair didnt grow back correctly (I shave my head now) and I get fat really easy. Medication can only substitue so much as the natural thing is always better. Its been 5 Years on May 2nd and I thank god that I made it to this point. If the Cancer didnt kill me than the depression would have. I say screw the people that say "Its a good one to get" is it ever good to ever get hit by a meteorite? or "Accidently shot with a small bullet?".....Its not and it may not have killed me, but it effects me daily. I can say im a cancer survivor, but it doesnt define me!

God bless you guys and thanks for listening

I am so tired of hearing
I am so tired of hearing "it's the cancer you want". People can say the meanest things.

LBelle said:

Oh Lois...
You're absolutely not alone. I went exactly thru what you have gone thru and it was so AWFUL! I absolutely went crazy, was obsessive of cancer sites and all the cures/tricks/progressions... The medical staff said that they were not sure due to inconclusive FNA result and it drove me nuts. I took time to select the hospital/surgeon/endo doctor. So I chose Johns Hopkins and oh it was so wonderful. The staff was so fantastic.

Yes the people have changed overnight toward me and I was shocked since I thought that we were going to band and fight together against cancer just in case..... At least I know who are my true friends......

I quit taking Levo three days ago and so far I feel great without them. Levo gradually made my body going crazy and I got so tired of that. I'll go back to Dr and tell her about it. She'll probably scold at me anyway.

Don't ever trust FNA results until after surgery... The waiting part is the worst but just take it easy on your post-surgery body especially neck area.

Don't go crazy-shopping and overcharging the credit card.. I did compulsively buy almost everything so I wouldn't look "cheap and sick" anymore... So after the final result (noncancerous tumor), I was so embarrassed...

LBELLENEVER TRUST A FNA
YOUR POST IS OLD SO I HOPE YOU ARE STILL READING THIS. I WAS WONDERFING WHY YOU SAY NEVER TRUST A FNA? I HAD ONE AND IT CAME BACK MALIGNANT--POORLY DIFFERIENIATED THYROID CANCER, WHICH THEY CONSIDERED DANGEROUS AS IT SPREADS FAST. IN APRIL SEVERAL MONTHS LATER--FNA WAS DONE IN FEB--I HAD SURGERY. BUT AFTER FIVE HOURS THEY GAVE UP AND COULD NOT REMOVE THE TUMOR BECUZ IT WAS TOO CLOSE TO THE AORTA. BUT THEY DID A BIOPSY AND IT CAME BACK BENIGN. THEN THEY DID A PET SCAN AND IT SHOWED CANCER. I AM CONFUSED AND SO ARE THE DRS. THANKS

shadower360 said:

Thyroid Cancer, ablation, scans and a lifetime of Medication
I find it very insulting when people down grade my condition. Im in the US Army and spent some time over on Kuwait and when I got home found a nodule in my thyroid area. Im a medic and I Knew it wasnt normal. Went to sick call to the ENT and after a few tests did a Fine Needle Aspiration and determined that I had some suspicious cells. Had surgury which turned out to be cancerous. Full Thyroidectomy with pappilary involvement and 1 Lymphnode. Did the Ablation 3 weeks later and theoretically all was well. Started My HRT with Synthroid 75McG and my TSH came back a 64. The military Doc told me outright that I wasnt taking my Meds. and that unless I was an "Alien" and that Synthroid doesnt work on me" That I better get it together. Now mind you Im 6'4" tall 240 Lbs and im on 75 McG of Synthroid? I waited another 6 Weeks and again my TSH came back a 52.5. The Doc called me and said the samew thing..."Stop messing around and take your meds". I told the Doctor I was going elsewhere and that I no longer wanted him as my Provider and he said....."to be honest, your making a big deal out of something as small as Papillary Thyroid Cancer"......I went to the University of Washington and they took my Meds to 275 Mcg and told me not to seek care from non specialist clinics.

So heres the deal.....I guess if your compairing stage 4 Lung Cancer to stage 1 Thyroid cancer ya its better to have the later, but after my treatments I had Panic attacks, depression, my hair didnt grow back correctly (I shave my head now) and I get fat really easy. Medication can only substitue so much as the natural thing is always better. Its been 5 Years on May 2nd and I thank god that I made it to this point. If the Cancer didnt kill me than the depression would have. I say screw the people that say "Its a good one to get" is it ever good to ever get hit by a meteorite? or "Accidently shot with a small bullet?".....Its not and it may not have killed me, but it effects me daily. I can say im a cancer survivor, but it doesnt define me!

God bless you guys and thanks for listening

medication
Hi Shadower360. I'm mortified at the low level of Synthroid you were given. The Americal Thyroid Society recommends around 1mcg per pound of body weight. No wonder your cancer cells went into overdrive. I would give your old GP a serious cussing.

I had a total thyroidectomy and radical neck dissection just before Christmas last year and RAI 131 after Christmas. I'm still battling to get the Endo to realise that I am not getting enough thyroid hormone, and when they dropped my level, the cancer marker went up. Surprise....

You can get natural thyroid replacement, which is called Armour in the US. If you read the website stopthethyroidmadness.com you will find a wealth of info. You may also benefit from additional T3, this has been found to completely reverse depression in thyroid patients. Sometimes we can get a lot of T4 (synthroid) but we don't convert it well enough. Worth having a look at it.

And keep up the good work!!

grateful1 said:

NOT A REAL CANCER
DO THESE PEOPLE WHO SAY THAT WANT IT? I THINK PEOPLE ARE JERKS WHO SAY THIS EVEN THO THEY ARE TRYING TO BE HELPFUL. FRIENDS WRITE ME THIS IN EMAILS. MY THYROID CANCER IS INOPERABLE. THEY THINK IT IS POORLY DIFFERIATED AND SPREADS LIKE WILD FIRE. THEY HAVEN'T COME UP WITH ANY TREATMENT THEY THINK WILL REALLY WORK--IODINE, RADIATION, SUTENT. I JUST SIT HERE UNTREATED. I DON'T BOTHER TELLING THEM. I WANT TO LIVE FOR MY CHILDREN. SO I DON'T FEEL LIKE OH IT'S ONLY THYROID CANCER IS A CONSOLATION. YES PANCREATIC CANCER IS WORSE. STILL DOES ANYBODY WANT WHAT WE HAVE. JUST TRY TO PASS IT OFF TO IGNORANCE AND KEEP ON TOP OF YOUR CASE~~~GOOD LUCK

wow... not a real cancer...
I truly did not know that sometimes this cancer is inoperable. I too am sick and tired of hearing, "oh, it's just thyroid cancer" with a nasty smirk on their faces. August 4th will mark one year the day I was diagnosed and august 6th I had my TT. It's still tough. I'm eternally grateful that I have a wonderful support system and strong faith in God to get me through and I'm alive!!!

They say it's "the good cancer" which 'cancer' is good? NONE!!! Anyway, how about being tired after simple routine things? Dealing with not tasting "right" anymore? just being tired... forgetting simple conversations...

Last year, about 3 weeks after my RAI, my relatives and I did a 5K walk in support of Breast Cancer and when I went to the "surviors booth" to collect my souvenir, the lady asked me 'what type of cancer?' when I answered, she looked at me and said "oh, it's only for breast cancer survivors" I was flabberghasted, but I remembered why I was there... to support a cure for this horrible affliction.

To all here... we share a common bond... there IS NO 'GOOD' CANCER!!!

nasher said:

that sucks about the walk
that sucks about the walk and not getting your souvenir. but i am sure you enjoyed supporting cancer survival.

in my dealing with the medical comunity i normaly get acknoledged for cancer but sometimes I do get that select croud of medical personal who think its a not so bad cancer. and I have to remind myself to be polite and smile and not want to kill them while I do my best to explain to them why that comment was in bad taste.

I have found many people in my community localy that are thyroid cancer survivors as well as other types of cancer survivors and none of them seem to think thyroid or any other cancer is a good one... Also 2 of the people i know have has there thyroid cancer come back so that definatly puts a bad mark up.

One other point i like to put out to people who try to downgrade Thyroid cancer. With most other cancers if you "Survive" then you are good to go with no extra medications. most people who get thyroid cancer end up with a TT and get to take thyroid replacement every day for the rest of there lives.

I've come to grips with the
I've come to grips with the fact that some doctors forget to think before they say things, while others are 'real doctors that care'

I remember not being sure what to think when they made those comments, being the 'good cancer.' To me it was as if they were trying to 'console and reassure' but at the same time it's a back-handed compliment.

Yes, the medication...grrh... that's my comment on that. One morning I thought that I took it twice and almost had a panic attack. I called the advice nurse and they referred me to the poison control center. Good news, it's slow acting if you do take more than you should or forget to take it, but they said you'll feel like crap. My aunt takes the meds for underactive thyroid.

It wasn't until after I found out about the cancer, I learned that a cousin of my dad had it too, but she lives way out in Canada. The only other person I personally know is my friend's fiancee, she had a partial thyroidectomy after a 'suspicious FNA' then a TT about 2 months later (she's not comfortable speaking about it, so I'm not sure what was her end result). hers occured about 5 mths after my diagnosis/surgery.

Thus for me, I accepted it from the day I found out, didn't ask why and try to live and cope as best as I can (it's frustrating sometimes) but I always remind myself that there are others in far worse conditions than me...

take care!!!
stay strong

loispol1 said:

Hi
Thank you for your support. I am so very exhausted/worried about all of this. I feel like I want to take my time but all the doctors told me I can't put it off for too long. I really appreciate your response. There doesn't seem to be a lot of people posting here frequently right now, I am still getting used to how this discussion group works though.

How are you feeling now, over a month after your surgery? How is your cervical neck doing? Please keep me updated as to what is going on with your follow-ups and new appointments. I am exhausted from trying to get all the allergy info put together and waiting for responses etc for just the anesthsia testing. I would rather like to be staying calm right now. I also have a roof leak and the roof never showed to fix it Monday or Tuesday....lucky it is not raining now! Only in Florida! What is the saying, things come in three? I'd better not go wishing for another problem! Thanks for writing me, it meant a lot! Hope you are doing well also!
Lois

Hi
Lois, I also am going this alone. My bro drives me to certain procedures when you need a driver,but otherwise as his wife is suffering from leukemia, he has his hands full with her, and she doesn't speak to me - don't know why, we used to be close.

I had surgery in Feb 2010 for colon cancer, Stage 11A, and am on Xeloda. On a follow up CT scan, it showed that I had a multinodular thyroid. Had the US which showed a solid node in the left lobe, and other nodes on the right. thyroid blood work showed my thyrogobulin to be 87 but all other values normal. I am having fine needle biopsy of both lobes on Wednesday. I am petrified that I have another type of cancer. To top it all off, I had some type of lamp therapy for acne at about 14. The doc is assuming that it is irradiation, because the dermatologist that did it died and I could not get my records.
I started having panic attacks the other day and my primary started me on Zoloft. Hope it starts working soon. I wish that we lived close by each other, as we could support each other - it is hard to go to docs alone.

I wish you the best and please keep your fingers crossed for me on 8/25 with my FNA of thyroid. Louise.

IowaBo said:

How about. "You can have it
How about. "You can have it if you want it? I'm willing to let you have it. No charge!!!!!!"

I know how you feel I was
I know how you feel I was told to live with my cancer as i am non responsive to treatment
i recently moved and went to a dr for my meds and she stated well yours is the good kind of cancer its curable I looked at her and said really since when has there ever been a good a cancer? and if im so curable why was i told to live with my cancer because its non responsive to treatment and continued to say there is nothing good about any cancer
it sucks she just looked at me with not much else to say and i need to have my tg done
so i asked while she was checking my free t4 and tsh levels to just do the the tg
without withdraw since i dont have insurance right now and cant afford thyrogen shots
she gave me crap and sent me on my way then after thinking she stopped me and added it to my blood work I have a new node in my neck I dont think allot of drs realize there are more and more people who are non responsive to rai and really need more research for better treatment

Seri said:

People are stupid
People can be so stupid. We should all come up with something snarky to say back when someone says that it's "the good kind of cancer to get" that would make them know what they said was ridiculous. I always want to say something to like "There's a good cancer to get? Why? Do I win a million dollars for getting it?" Of course, my memory is so bad from HAVING thyroid cancer, that I can never remember what I want to say and I mostly just glare at them in unbelief, and remind myself that they're just saying it's beatable.

We all know, and are grateful, that this cancer usually comes with a good prognosis, but it's appalling that people aren't more sensitive, especially doctors! They know more than anyone else that cancer is a big deal, and that even thyroid cancer can be deadly. I guess they have desensitized themselves so much that they forget what it's like to be a patient. I am grateful everyday that I don't have something worse, but I also remind myself that it's a big deal to have any kind of cancer, it has changed my life, and will be a lifetime battle, but it's not who I am.

Good luck and take care of yourselves!

definately need a "come-back"
I will have to use the reply to, Oh, Only thyroid cancer . .to tell them, fine . .then you can have it.
I had a resident give me a check-up, since I was still having abdominal pain since March. After telling him my history of endless doctors visits, bloodwork, and tests, being diagnosed with hurthle cell, he has the nerve to ask me if I had any stress in my life! "Umm, let me think doc, how about waiting to hear if I need radiation treatment, and whether or not I get to see my kids grow up? Other than that, things are just great."