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it's "only" thyroid cancer

Ellby
Posts: 1
Joined: May 2008

Don't really know how to respond. I know that the survival rate is good but still feels like a big deal. Surgery wasn't too bad but now awaiting RAI feels crappy.

denyse
Posts: 16
Joined: Jan 2008

Get used to those types of responses. It's common but only you and others with this disease know it's scary. You are fortunate to have a great prognosis, but still knowing there was cancer in your body takes adjusting to. It's like a visit from the boogy man! My daugther had thyca and is now going on her 6 month follow up. Doing great and great prognosis, but scary nonetheless! Stay calm and read and understand the treatments etc and you will take charge and make good choices. Knowledge is power. Be well and all my best. People sometimes make those comments to make YOU feel better so don't be too discouraged when people minimize it.!: )

Nesie96's picture
Nesie96
Posts: 2
Joined: May 2008

I hear ya! I've heard "if you *have* to have cancer, this kind (papillary thyroid) is the one to choose".... Still, it's cancer, and it's scary when I really think about it.

But I talk to my doc about things, and she lets me know what to worry about and what not to. Mostly? Things fall into the "wait and see, and we'll just treat it when we have to" category. So I take it as it comes, and follow her lead. Of course, it's been over 10 years for me....

PS: Don't forget the lemon drops (or other sour candy) during your RAI! Trust me, you'll be glad you have 'em for salivary glands. But you won't want to see another sour candy for months afterward. Or at least I didn't. ;D

Best of luck!!!

walrus's picture
walrus
Posts: 5
Joined: Aug 2005

its only thyroid,, soudns funny but it is true, the treatment is so good because of the bodys systems and their pecular use of iodine its the one that the disease is attracted to the cure. of course it still can mets to the rest of the body thru lymph and thats the part that sucks thus the rai after youre healed from the surgery, it wasnt so bad i had a high dose so i had to be in the quarantine room in the hospital for 4 days alone but a laptop and some movies and lots of mashed taters helped,,, lol only thing that tasted good to me

FayeONeal's picture
FayeONeal
Posts: 4
Joined: Sep 2008

I first heard that phrase in June 2008 when they removed my goiter and left lobe of my thyroid; the last thing the surgeon said was "I don't think you have anything to worry about." A week later, while removing my stitches, he says "by the way, you do have Cancer", but it's nothing to worry about...it's the easiest Cancer to cure. OK...I went with that, then went home and cried. A month later, July 18th, he removed the rest of my thyroid and a couple of lymph nodes, again he says "nothing to worry about"...ok, i'm skeptical, but hopeful. A week afterward, again with the stitches, and he says "they found more cancer on the other lobe...and it's a different kind." So, I ask him what "Stage"...he looks at me funny and say "we don't really stage thyroid cancer because it's easy to cure". Ok, I go home, do some research on the "kinds" I have, diffentiated papillary/follicular varient...and start thinking about getting ready for my RAI treatment, which is supposed to make everything ok.

Then, August 5th, I go to the hospital with "unrelated" side pain...a biopsy was done and that easy to cure papillary/follicular thyroid cancer was in my right rib and had been there over 8 months causing me pain...no one had a clue!! At first, I was told it was the dreated "Anaplastic" type of thyroid cancer in my rib...all the Dr's started running around, made me an appointment with the Cancer Center in Columbus Ohio, (it was 12:30) and told me to be in Columbus at 3:00!! Now, Columbus is 1-1/2 hours away on a good traffic day from where my hospital is....still "not a big deal"?? I don't think so.

So, I go to the Cancer Center, they set me up for 15 focused radiation treatments (which I have 6 left), sent me back home and said they'd order all the tissue samples and take another look at them. Now, being told that you have "Anaplastic Thyroid Cancer" is a fairly scary thing to me and my whole family....who are all computer research nerds anyway...after a day or so everyone was pretty ready to start making "final preparations"...including me.

So, through the depression, the multitude of pain meds, depression meds, anxiety meds, I went for 10 days for my daily radiation treatments for something that's "not a big deal". Then they send me back to Columbus for a re-check. My Oncologist there (very renowned) says, we re-examined the pathology and found that the initial findings differed from what our pathologists found in that your original tumor in the thyroid was 4cm (not 1cm), there were 3 small tumors in the right lobe, nothing in the lymph nodes (all 2 of them that He removed)...but she could tell that the cancer had spread into the lymphatic system and the blood system simply because it had metastasized to my rib bone. The rib cancer had been growing for a lot longer than 8 months...that's just when it broke through the bone and began rubbing against the nerves to cause the pain. She then tells me "you're a difficult Stage IV, with probably more tumors in more bones, a CT scan showed multiple nodules in both lungs that she also believes are related to the thyroid cancer (but my cardio-pulmonary specialist keeps emphatically reassuring me that thyroid cancer cannot spread to my lungs...ok, where did he get his degree??)...so that little thyroid cancer that "isn't a big deal" and is so easily curable...don't you believe it!! This is going to be one long difficult journey for me to overcome and survive (not my words, her's). And by the way, she says...there are more and more cases of the "easy" thyroid cancers i.e. papillary or follicular "mutating" into the dreaded "Anaplastic" type. I don't want to scare anyone...but in my on-going case, these are the facts. My motto would to never take any diagnosis of cancer lightly or believe that it can be "easily cured". Good luck to you all.

Meli10668
Posts: 1
Joined: Sep 2008

When I was diagnosed, I went to Otolarangologist (sp) and was complaining about coughing and when I laughed at a joke, got so dewinded. They did scans (nothing), tube down the nose with camera (nothing) yet husband told him she wakes up out of a dead sleep coughing and short of breath. The doctor on my last visit with him (prior to insisting they do a (seek and search) motioned to husband like it was all in my head.Husband got mad and said "she is not crazy, but if you feel not comfortable with finding out why, then maybe we should find another doctor" he schedule surgery the following week. Following week I was in hospital as a Outpatient, since doctor "knew" all tests proved "nothing".Plus he knew he would find "NOTHING". They cut my throat, did biopsy of a "enlarged lobe of thyroid, Positive CANCER. Doctor did a Total Thyroidectomy, with lymph removal, with followup of Rai (2 treatments of 4 days each time in Isolation at hospital) That was treat since nurses are afraid of radiation and left everything for me outside my door, food, juices, ice towels etc. Guess they thought with radiation I should have X-ray eyes and see my stuff outside the door.That was when I went a little crazy and threatened to "pee" inside glove and come out of room and "radiate the entire floor,lol. That was an experience in itself. But back to surgery day. Doctor came out of surgery all "sheepish" and apologetic saying guess your wife knew her body better than tests, she had cancer but think we got it all. THINK??
Well, that is when my problems really started, some worse than the coughing. Type II Diabetes set in, had 2 heart attacks with stents put in, High Cholesterol, High Blood Pressure, and now I am at the Maximum thyroid meds (Levoxyl) they can give me. I also had "titeny" very low calcium (had to have daily IVs of calcium replacements) and still have my Outpatient stay then became 8 days , my calcium levels was borderline. Angry?? You bet. I went from a private duty nurse who worked 16 hour days 5 days a week to someone who ended up on SS Disability. At times I would have rather kept the thyroid cancer and the coughing. Know what I mean? Sorry to vent on you. But that was May 16th, 2000, 8 years ago.
You take care of yourself, cause as my mom says if you do not take care of yourself, no one else will. Best of luck.

luckylinda
Posts: 4
Joined: Sep 2008

Dear Faye O'Neal, thank you for sharing your story. My 16 year old daughter was just diagnosed with papillary cancer and she had a total thyroidectomy on 9/16. We get the path report on Monday. People do keep on saying this is the best type of cancer to have...but my instincts have been telling me otherwise. I just want to be prepared, and your story has helped me see the mountain ahead of us. Thank you. I will pray for healing for you, along with my daughter. Sincerely, Linda

FayeONeal's picture
FayeONeal
Posts: 4
Joined: Sep 2008

When I was first diagnosed with thyroid cancer (papillary/follicular) in June, the initial pathology report indicated a 1.1cm tumor with no lymph/vascular invasion. The samples were also sent to Mayo Clinic for a final look, and they concurred. In August, I had a biopsy done on my rib, which came back positive to anaplastic cancer...the worst and most aggressive form of thyroid cancer. I was sent to Ohio State University (James Cancer Center) in Columbus, OH for evaluation and treatment. My Dr. (Dr. Shah) at OSU ordered all tissue samples and biopsies and had her team of pathologists take another look. Her final report indicated a 4.4" cm tumor on the goiter AND vascular/lymph node involvement. Her final report on the rib biopsy came back "papillary/follicular varient", which was a great relief to me and my family, but was a far cry from the anaplastic diagnosis the local hospital gave me. I strongly recommend that when you receive a diagnosis of thyroid cancer, that you get a separate opinion, a second look at the tissue samples/biopsies, and you find a physician that specializes in thyroid cancer itself. It could make all the difference in the world in your treatment and prognosis. God bless you and your daughter!

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