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Not a real cancer?

emma54
Posts: 59
Joined: Aug 2009

I went to a pulmonary doctor today for a cough I've had for years. I'd never met him before and he took a medical history of me. When I told him I had had papillary thyroid cancer and had my thyroid removed, he shrugged it off and said, "Oh that's not a real cancer!"

Now mind you, I think I know where he was coming from in the sense that he wanted me to believe that I was going to be alright and not to worry. But I am still furious over this statement.

Then he went on to say it's curable. And I pointed out that it could come back to which he responded, "Well, nothing in life is guaranteed."

To myself I said, "Duh..."

What do you guys think of this ignorant statement?

usljh10
Posts: 85
Joined: Apr 2009

ignorant statement is what it is. It's really hard to understand how anyone could say that. Cancer is bad no matter where it is. You always have the feeling it could come back. Cancer is the devil.

emma54
Posts: 59
Joined: Aug 2009

Thanks for responding. I agree.

IowaBo
Posts: 32
Joined: Feb 2010

I think you need to find a new doctor. If It were him or his loved one, would it be a real cancer? You might ask him this.

BellsAngel69
Posts: 102
Joined: Dec 2009

Excuse my french, but WTF? You don't know how tired I am of hearing that "It's only thyroid cancer". I'm six years into this journey and let me reassure you, it's just as real and dangerous as any other kind of cancer. I was fine for three years after a TT. A year and a half ago I had a metastasis to my hip bone, and now mets to my liver, which is very, very rare. I'm having surgery March 24th to remove part of my liver.

Not real? Just thyroid cancer? My ass. It's cancer. It's unpredicatble. It's never good to get, and you can never rest easy that you're cured just because you have a TT.

I just want to kick their teeth in for making us sound like we won the cancer lottery.

Find someone more in tune with reality. You don't need a lacadasical attitude like that.

emma54
Posts: 59
Joined: Aug 2009

Thank you for that. I was furious. Good luck to you. May you be well soon.

tonesgurl
Posts: 42
Joined: Dec 2009

BellsAngel69,

I heard that!! I am tired of hearing the very same thing. It's as if we don't count, we don't matter because "It's only thyroid cancer" well people better get informed quicky because tyroid cancer is on the rise and they (people) won't be thinking that way if they or a loved one is diagnosed with it.

I am one who strongly believes that you can't speak on someone else until you have walked in their shoes. Thyroid cancer is not easy in any shape, form or fashion. Although our cancer is said to be not as bad as other forms of cancer we still have a hard fight.

Just wanted to share how I felt about such an igorant comment!

Adrian

loispol1
Posts: 84
Joined: Feb 2010

I have not been diagnosed yet and scheduled for the TT (is that what you call it?) FNA showed hurthle cell neoplasm. I am frightend and alone and at a recent tennis luncheon, where I attended but didn't play (can't play now), one of my teammates announced to everyone that she heard some actress on TV say that thyroid cancer is the good kind of cancer to get as it grows so slowly and is so easily cured right after I said I was having this problem. So there went my whole tennis team support system, out the window, all from one person's stupid comment! I wrote the team yesterday my update and let them know this could be a rare and serious cancer should I have it. I am claiming my support back from friends! Stupidity is all over the place, it is just an excuse "not to care"! I guess there is some corner on the market as to what illnesses/cancers count more than others? Totally crazy!

Had to get this out of my system! Grrrrrr I am so glad I am finding some support here, it is rough going through this alone!You all have been great!

Lois

dubby88
Posts: 15
Joined: Mar 2010

We are all going thru this and we will listen. I had my surgery on the 12 of Feb. and still trying to deal.I went to my primary doctor today and she want me to continue going to the endo and she has refered me to an ondoco. doctor. I've been dealing with this since last May. Please dont hesitate to put your feelings here.

loispol1
Posts: 84
Joined: Feb 2010

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

dubby88
Posts: 15
Joined: Mar 2010

Well I'm feeling alright go to the endo tomorrow and the Neur. next wed. hope they will have good news for me. I will post how it goes tomorrow after I get home. I'm in Florida also I hope it warms up soon I'm tired of this cold.

Donna

loispol1
Posts: 84
Joined: Feb 2010

How did your visit go with the endo? How are you feeling? Please keep me updated!

I am having a lot of reservations about the surgery. New ultrasound report done at the hospital where the surgeon is located, made no sense what-so-ever. According to that report that did not do a comparison to the two recent ultrsounds and biopsy report, my hurthle cell nodule is practically non-existant. Perhaps it was a typo error? The radiology tech was not good, she said "oh well you are having your thyroid outanyway so I don't have to do a careful scan??? I am thinking about changing my pklans. I have had areall struggle getting info. about anesthesia to be used, now I will never make the deadline for surgery to have allergy testing. It has been too hard! I am thinking about getting a third opinion now, maybe at John Hopkins.

So where in Florida do you live? It has been really great here in Merritt Island. I am spring cleaning, which takes my mind off of everything. I have been feeling really lonely as I have no one to talk to about all of this.

Thanks for the message, it helps to know someone is listening and going through this also!
Keep your chin up and smiles,
Lois

dubby88
Posts: 15
Joined: Mar 2010

My appointment went well my doctor increased my dose and I have alot more energy. I have lost 16 lbs so far. The only thing I'm bothered with is my voice. As the day goes on my voice cracks and sounds like I have a bad cold but I dont. This is a problem because all the people I work with notices. I feel like a 12 year old boy when his voice changes.

I have to have a scan in six months to see if I need to do the RAI or not.

I'm in Orlando (East)

Donna

Smethport's picture
Smethport
Posts: 15
Joined: Mar 2010

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.

weberdns
Posts: 156
Joined: Mar 2010

I have had 2 surgeries in 8 days. I had a Hurthle cell neoplasm. Had the left half of my Thyroid removed. Biopsy came back foliccular cell carcinoma, so 2 days later was back in the OR to have the rest of the thyroid removed. So far there was 1 lymph node invoved with the first biopsy and now waiting for the second. Will be having radioactive iodine treatment in 6 weeks. You aren't alone....you will learn that many people will say that it is a "good" kind of cancer to have in efforts to reduce your feal, and their own as well. Hopefully you will have good friends who will come out to support you and help you out as much as possible! Please don't eliminate a whole group of support because of the ignorant comment of 1 person! Let them help you while you educate them! Hugs and good luck with your surgery! As surgeries go it really wasn't a bad one. Was only on pain meds for a couple of days.....now dealing with the fatigue that comes with 2 surgeries so close together! Good luck.....maybe you will be lucky and have a good biopsy outcome! Prayers and hugs for you!

loispol1
Posts: 84
Joined: Feb 2010

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

weberdns
Posts: 156
Joined: Mar 2010

No you aren't being self centered at all....if anything this is the time to be self centered. Sorry that you aren't getting any support. I must tell you that all the wonderful people that I know have helped to keep my sanity!

First thing first. A second opinion is in order. If you are feeling unsure it is a MUST!! I felt comfortable with my decision to have the half removal at first....my nodule was only 2.5 CM's on ultrasound and what I read agreed with my doctor. With a diagnosis of Hurthle cell neoplasm you need to do something.....all of them need to be removed. If they aren't cancer now....they may turn into cancer. Don't not do anything because "you might not have cancer". Do it because you might and the earlier they find it and remove it the better success for a cure you will have!

As far as what the biopsy showed in each case I'm still not sure. When i got my diagnosis it was a preliminary verbal report. I still have yet to see the final report of either biopsies. I am seeing my doctor today and plan on getting copies for my personal use today. My stomach is in knots right now and I'm not sure why. Even if there is cancer in the second biopsy it doesn't change the plan of care.....So why is my stomach in knots.....why did I just turn down my husband going with me (because he has taken so much time off of work and I want him to go to the endo's office on Friday with me!) I want to go back to work....but still need a nap at around 2:30 (and that is after getting up between 8 and 9).....work requires that I be up at 5:30 in the morning and start early.....not sure if I can get through the day and scared I will get sick at work (with nobody to take over if I do!) Sorry.....I highjacked your note with thoughts of my own that I am working out in my head.....sorry..... Now I'm the self centered one!

LBelle
Posts: 42
Joined: Oct 2009

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...

weberdns
Posts: 156
Joined: Mar 2010

buy at stores that you can return the items....keep those receipts and tags on what you buy! LOL!! Agree.....wait for the final path report after surgery. I saw in my surgeon's notes that he thought it was a 30% chance of malignancy....and not only is it malignant, but it's Hurthle cell cancer......rare........I need to buy a lottery ticket! LOL!!!

grateful1
Posts: 81
Joined: Jun 2010

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

BeeBee300
Posts: 5
Joined: Apr 2010

Hi Grateful1. The results can be confusing. The cancer tends to be in islands and/or follicles, so you can take a piece out and there is no cancer, but the PET scan will show the cancer if it takes in glucose. The PET scan is the one to rely on in my opinion. I had a large papillary carcinoma taking up the entire right side of the thyroid and papillary and follicular tumours on the left. Papillary cancer in the lymph nodes too. In the ultrasound the left was clear, the pathology picked it up after surgery. My cancer appears in islands so the entire tumour isn't malignant, and apparently this is typical of thyroid cancers. Hope this makes sense.

I'm currently using High dose CoQ10 at 340mg a day and natural selenium along with a ketogenic diet to improve my survival chances. Not sure if it will work, but it's worth a try. There's good evidence for each of these in relation to cancer treatment, so worth having a look at the web. I hope you get good news!!

Kate1024
Posts: 1
Joined: Jan 2010

Bells, thank you for saying what I was thinking! Everybody acting like thyroid cancer is a walk in the park is a real injustice to people diagnosed with it. What's more, it sets up unreasonable expectations that you'll have your TT, perhaps radiation, and then onto blue skies and smooth sailing.

I had a TT in July '09 followed by radiation. I just got my recent TSH-stimulated thyroglobulin results back, and my thyroglobulin is too high. So here I am at the hospital, undergoing my second round of radiation. It's scary as hell and it's shocking, cuz after all, thyroid cancer is "the cancer to get" right?

butterfly123
Posts: 52
Joined: Feb 2010

I am lucky that no one in the last year had said to me that thyroid cancer is "the good cancer." I am not really sure what I would do or say if someone said that to me now.

I was diagnosed 5 years ago with Stage 1 Papillary. I was told that I should be "so happy" that I "only have thyroid cancer." What a BS statement to make to anyone diagnosed with TC. About 18 months ago, my Tg was high while on thyroid meds. Since then, I have had about 25 diagnostic tests in the last 18 months including RAI. I have a TC tumor on the worse part of the cervical spine, probably micro mets throughout my lungs and probably a couple of positive lymph nodes in my neck. So Kate, I am with you, thryoid is no walk in the park!

I hope your RAI treatment is successful. Best of health to you.

kkirsits
Posts: 11
Joined: Apr 2010

Hi -- I understand what you are saying. The reality of having been diagnosed with thyroid cancer (mine was papillary) is finally hitting me -- I'm in my third year out. I am finally realizing the cost of my scans, doctor visits, blood work, etc. and my insurance stinks. I have to pay almost $1,500 out of pocket expense before anything is covered. Of course family and friends do not understand where I am coming from and I am tired of hearing, "well do you have to have this done every year?" and my favorite one is from my mother who says, "Well everyone has expenses." I really can't do it anymore -- living expenses (I only bring home $1,300 a month), rent, food, gas for the car, etc and I'm just getting out of debt because I was starting to put things on credit cards and got in over my head. I can't even afford my scan this year because the hospital won't work with me on an acceptable payment plan. they want to me to pay more than what I can afford or will go into collections. What do you do?

And all I hear from family and friends is, "well you're a cancer survivor" "hey, it's only thyroid cancer" -- what don't they get? You are not a cancer survivor till after 5 years and it's cancer -- I don't care what kind it is.

thanks for letting me vent.

weberdns
Posts: 156
Joined: Mar 2010

It's so upsetting that the hospital won't work with you on a payment plan for your scan. Is there anyone who can help you to get it done and give you a loan??? You are right...it is still cancer!

kkirsits
Posts: 11
Joined: Apr 2010

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.

shadower360
Posts: 1
Joined: Apr 2010

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

BeeBee300
Posts: 5
Joined: Apr 2010

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!!

nasher
Posts: 507
Joined: Apr 2010

I wish people would not try to minimize the fact that its a cancer. sure it is one of the easyest to treat and has a high survivability rate but it is still the big C.

the Doctors I have have told me that if they were told they were going to get a cancer but they could choose what type they would choose thyroid cancer since a normal life expectancy is expected after treatment

teresamc
Posts: 5
Joined: Jan 2008

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

BeeBee300
Posts: 5
Joined: Apr 2010

Ask them to swap places... would they still think it's a good cancer to have?

People die from thyroid cancer, it may be a lower number than other cancers, but at least with other cancers you get an all clear period. I.e. no recurrence in 5 years and you are clear (breast cancer is 10 years I believe). There is NEVER an all clear for thyroid cancer. My surgeon said the only way you know you no longer have thyroid cancer is when you die from something else.

Yes, he has an amazing bedside manner doesn't he. Bit like Jack the Ripper... I'm looking for a new surgeon if there is a next time. I hope there isn't though.

Take no notice Teresamc. You have to keep positive and ignore the ignorant! Keep your head up and smile. You will get through this.

grateful1
Posts: 81
Joined: Jun 2010

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

ibeatcanser
Posts: 47
Joined: Aug 2009

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
Posts: 507
Joined: Apr 2010

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.

ibeatcanser
Posts: 47
Joined: Aug 2009

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

Seri
Posts: 14
Joined: Aug 2010

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!

IowaBo
Posts: 32
Joined: Feb 2010

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

lilmonkeyshine
Posts: 10
Joined: Oct 2006

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

soccermom2-4
Posts: 4
Joined: Sep 2010

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."

soccermom2-4
Posts: 4
Joined: Sep 2010

All I can say is, I am tired of having to explain to people that my type of thyroid cancer can be hard to treat. I have been diagnosed with hurthle cell,and whenever I talk to someone who knows someone treated for a thyroid nodule, they shrug me off and tell me I will be fine because so-and-so just had a simple surgery and is great. Then the opposite side of the coin, I get random statements from my internist that scare the heck out of me. Like calling me and waking me up first thing in the morning to express his sadness over my biopsy results. Which my endocrenologist had not discussed with me yet! And his staff that look at me with "poor thing" eyes whenever I go in for appointments.

lynn2318
Posts: 41
Joined: Jan 2010

Do you mind telling me what type of thyroid cancer you have or had?

kitandkat's picture
kitandkat
Posts: 11
Joined: Sep 2010

I've had people say stuff like this to me before, and brush me off by saying "well, at least you didn't have chemo", as if my experience wasn't as important as the person who did have chemo. I was complaining about this to one of my friends and she told me instead of getting offended, I should use this as an opportunity to educate the person. I thought this was a good idea, and people would probably be taken aback by a serious comment that what they are saying is inappropriate and an explanation of my real situation. Since then I have not had a comment like this (it's been years since my thyroid cancer and it usually only comes up with old friends), but I plan to use this advice the next time I do. Doctors especially can be unaware of the extra problems that can come with thyroid cancer and its treatment, especially RAI side effects. It's not always physically as easy as they think - and then of course, with any cancer diagnosis, there's a lot of emotional turmoil.

nasher
Posts: 507
Joined: Apr 2010

yes i do my best to educate people as well

RAI knocked me out and hard when i had it.

and now even though i am basicaly recovered i keep haveing other issues in my body (most recently my knee gave out) and i am wondering if any of them might be thyroid cancer or RAI related

I know that i have some problems definatly caused by RAI and thyroid cancer.

Luckly i have a good support group in my local area.

it dosnt matter what type of treatment or what type of cancer you had and what other issues you had to deal with its still cancer.

myself i have been doing my part to spread the word and help work for a cure for any/all types of cancer. http://www.worldcommunitygrid.org/ is a distributed computing site that is working on a cure for cancer's and may be something some of you might want to look into to help cure cancer while you educate people

every day has its trials and i am doing my best to keep going.

Remember you are a survivor.. every day

nowrinkles
Posts: 2
Joined: Sep 2010

It is a very ignorant statement. It is cancer, plain and simple.

EuropeanGirl
Posts: 9
Joined: Jan 2011

I must say that all the doctors I have been in contact with, have taken my cancer serious. They have said that it is not the worst cancer to have, but I think that is ok to say. None of them have minimized the diseased.

However, I have been told by others that it is not really a disease. A leader of a thyroid organisation I am a member of told me (when I told her I have had thyroid cancer) that “luckily the cancer is benign”. This provoked me quite a bit, and when I told her that it is definitely not benign but malignant and that approximately 10% of those who get this cancer dies, she was surprised.

This was the leader of a private organisation meant to take care of the members interests regarding diseases in the thyroid, both politically and medically. Members with thyroid cancer are of course a minority compared with those with normal hyper- or hypothyreodism. But I think it is not much to ask that the leaders of such an organisation knows at least the basics.

LBlackman
Posts: 113
Joined: Mar 2011

My Dr. said the same thing that if you have to have it it's the best one to have....what a crock! I am six years out and it's just hitting me that I have cancer. All my symptoms afterwards were thrown off to stress or something else. Yes I have alot of stress in my life, but I was able to manage a full time job, being a mother and caretaker of elderly parents. Now it's difficult then to find out my husband has been less than honest about some things, but you know what, thanks to everyone's support on here I will survive. I have cancer and I am a survivor and damn lucky! I will deal with the side affects one hour at a time and am seriously thinking about looking into the Mayo clinic here in Jacksonville where I have heard they take peoples health more seriously. It really infuriates me when people say that, espescially an endocrinologist. Yes I am sure they see people diagnosed and have a worse prognosis, but it is what it is. That is VERY unprofessional.

nasher
Posts: 507
Joined: Apr 2010

Well my Endochronologist takes it serious about the thyroid cancer and he thinks it looks like it is in remision.

for the thyroid support group remember that you are
1) thyroid cancer
2) hypothyroid <-- probably no thyroid

@europeangirl - you should also let the "leader of a thyroid organisation" know that benign means - Pathology . not malignant; self-limiting.
Thyroid cancer ,like all cancers, is Malignant.

---
US Mortality
From 2003-2007, the median age at death for cancer of the thyroid was 74 years of age4X Close
Table I-13 (http://seer.cancer.gov/csr/ 1975_2007/results_single/ sect_01_table.13_2pgs.pdf). Approximately 0.1% died under age 20; 0.9% between 20 and 34; 2.3% between 35 and 44; 8.1% between 45 and 54; 17.5% between 55 and 64; 24.1% between 65 and 74; 30.3% between 75 and 84; and 16.8% 85+ years of age.

---
no one at my cancer support group thinks any cancer no matter what type or how early it was caught or anything... is good or easy or the type to have or not real.

alot of people think its a good cancer because they see people living healthy after haveing the cancer. Also most of us who get thyroid cancer do not need to go through chemo.

Craig

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