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New to posting on the boards and need to vent.

diane2h81's picture
diane2h81
Posts: 41
Joined: May 2010

I’ve been a member for awhile but have not posted until recently. I joined right after I was diagnosed with papillary carcinoma in April of 2010. Had a TT May 10, 2010, and radioactive iodine treatment (150) at the end of June. They did find a lymph node with cancer during the surgery. They also found that the original tumor had multiplied in different areas on the right side of the thyroid.

First thing I was told by my doctor was that this was going to be easy, the best cancer to have if you have to have cancer. I think that all doctors are given that script to repeat to their patients. As most of you all have shared, the statement is so frustrating. I wish this was easy. I wish all it took was a simple surgery and a small dose of radiation. But neither the surgery nor radiation are easy.

What they don’t share is that these so called simple steps may not work the first time around. That’s my case, it is still there somewhere. And I’ve read on here how others are still fighting with this cancer years later. I’m just looking for support and advice from everyone on the best way to handle all this. I know that we need to be our own researcher and to stay on top of things. But people around me keep telling me I’m doing too much research, to just listen to whatever the doctor has to say.

My TG levels started to go down after radioactive iodine in June but now it is on the rise. Before radiation and off of T4 it was 83 or 88. After and back on T4 it went to 3.7, then 2.8, back to 3.7, up to 4.0 and the last in December it was 4.5. My next lab work is due on 2/1/11 and I may not know anything until the 10th. I’m really concerned that it may have gone up a lot since the last one. I try to talk to others (non thyroid cancer individuals) about this and no one seems to understand my concern and fear of the rising TG numbers. I know stressing over it doesn’t make it better but the thought keeps sneaking back into my head.

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Diane,

I know this is really frustrating. Probably the next step if they can't find the cancer on a Sonogram is a PET scan. I too get really frustrated with people that don't understand and call it the best cancer to have. What a bunch of crap, huh? I have come to the realization that this is a life long battle for me. I must be watched very closely and back into surgery each time it comes back. Then RAI until I have reached my limit. Hang in there and take each day at a time. Don't stress so much and live each day to it's fullest. Life is short enough without all the stress of this. As my Onco say, "this cancer isn't going to kill you, but it is really annoying."

Julie-SunnyAZ

lynn2318
Posts: 41
Joined: Jan 2010

I understand your frustration completely. My endocrinologist has never said "its the best kind of cancer to have" but he down plays my concern which is so frustrating. I want to say this isn't happening to you! I have worked in the medical field for 30 years and I can say my illness has made me more sensitive to others. I try to listen and answer their questions. I too have a measurable thyroglobulin level. It has stayed 2.6 for the past year but it is always in my mind that the cancer is still somewhere in my body. I have to go every 6 months for lab and office visit. I have my appt soon and lab draw next week. I understand how you feel. We as the patient have to research and ask questions. Do you mind me asking what stage your cancer was? Mine is stage IV. I was told I will not be considered cancer free for 5 years. Hang in there and stay pro-active. Please keep us posted. Praying for you.

diane2h81's picture
diane2h81
Posts: 41
Joined: May 2010

I believe my doctor told me it was stage I because of my age, I'm only 29 (28 when diagnosed). I'm going to discuss the staging again when I go back in two weeks. I will also find out then the results of my labs that I will have on Feb 1st. And regardless of the results from this next lab, I'm asking for a PET scan and/or bone scan. We have to find this cancer and eliminate it. I also might take a trip to MD Anderson in Houston.

And another thing I'm doing regardless of the results is to run in the Austin Livestrong marathon Feb 20 in Austin. I'm already signed up for the half. Even if they have to do surgery between now and then I'm still going, even if I have to walk and not run. This annoying cancer will not take everything away.

How did your lab/appointment go, Lynn?

lynn2318
Posts: 41
Joined: Jan 2010

Hi Diane. I had my blood drawn this past Monday. My endocrinologist called me Wednesday and said my thyroglobulin is stable but he asked me to get a ultrasound of my neck ASAP. Needless to say I am worried. I have a appointment next Thurs. for my regular 6 month visit and test results. Thanks for asking and I will keep you informed. Also let me say good for you for going on with life. I hope you do well in your run. Please let us know how you do. Continuing to pray.

luvmygirls
Posts: 6
Joined: Feb 2011

I'm new to the site. Thirteen years ago, we too were told the news of "the best cancer to have". What a joke! My husband was diagnosed with Pap Thy Ca then at the age of 34. He has had 5 re-occurances with distant spread, 3 different doses of I-131, and just 3 days ago was diagnosed with T-cell lymphoma. In the meantime, my 16 yr old daughter was diagnosed with Pap Thy Ca in June 2010, also with lymph node involvement. She had dose of I-131 in July and currently awaiting next body scan in May. To sum that up, my 13 yr old daughter was also diagnosed 3 wks ago, she will have Total Thyroidectomy in June, unsure of lymph node involvement at this time. Again, we were told, "best cancer to have". WHATEVER! We also had the adventure of MD Anderson, very expensive, but it may be worth the trip. We went with my husband for 2 yrs, they really didn't offer him any thing new, just lots of repeat tests that he had already had. They did offer external beam as a possible option but could not guarantee it would cure him, but he would lose his teeth. We decided it wasnt worth it went back to Vanderbilt in Nashville. Good luck to you! Do you have any other family members that have been diagnosed?

miladyx
Posts: 85
Joined: May 2009

did md anderson offer your husband any clinical trials?? was he diagnosed with distant spread?

sunnyaz
Posts: 582
Joined: Oct 2010

I am so sorry you are going through this. I will keep you and your family in my prayers.
Julie-SunnyAZ

djlrad
Posts: 4
Joined: Jan 2011

I was diagnosed in Feb.2009 with follicular thyroid cancer. I have had RAI in April and Nov. 2009. After ultrasounds, thyroid scans, CT scans, an MRI and a PET scan, I STILL have a detectable thyroglobulin level. As of yet, nothing is showing up anywhere. I know I should be thankful it isn't any worse and that I am lucky I have "the good kind of cancer" but I'm tired of thinking about IT every day!

sunnyaz
Posts: 582
Joined: Oct 2010

I am with Nasher on this. I have seen many other cancer patients walking around without organs or parts of their organs and don't have to deal with what we have to deal with. Thyroid cancer is far more serious than anyone lets on. I just get so ticked off when I hear this. Don't let them give you that crap. Ask them if they would like to have to take a pill for the rest of their life that keeps you alive. Without that pill we have no control over our heart rate, blood pressure, body temperature, emotional being. In fact if we don't have it we will go catatonic and then ballistic and then die. I never heard of a lung cancer, prostate cancer, breast cancer or any other cancer have to go through that. Also, it is not the easiest to kill. I am living proof of that. I have a B-RAF mutation gene that make my cancer more aggressive and harder to treat.

Keep your head up, fight hard, inform yourself as much as possible and live without regrets. Live every day as if it were your last and remember that laughter is the best medicine. I live by this motto. Worrying won't help you. Occupy your mind with other things when you don't need to concern yourself with your cancer. There is a time and place to take care of your illness, not every moment of everyday.

May God Bless you in great ways,
Julie-SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

i hate it when they say its a good cancer.

if they have comment cards at the hospital make sure you put out how disheartening it is when they say things like that.

yes a rising TG number is a concern as far as i know.

as i have posted in another post you need to be your own advocate and you need to research all these things cause the doctor isn't an expert.

you cant do too much research. when people start saying things like that i recommend having them watch the movie Lorenzo's Oil. that movie shows just how much a little research can do for rare diseases mind you thyroid cancer isn't that rare but you should still know a lot about it.

Worse case you can have a discussion with your doctor on his/her level and know the terms and have your questions to ask them.

good luck and keep us up to date.

also if you learn anything interesting please post it as well so we can all learn a bit more

Craig

forme's picture
forme
Posts: 1161
Joined: Aug 2010

Hi Diane,
The first year after RAI your levels can be way up or down. If they were always low and started to climb without the up and down, that might be more of a concern. But you seem to be up and down . Since you are only about a half year since your RAi I would not be to worried. Mention it to your DR when you see him. It does take about a year or so to level out. If after that time you still are going up or if you really jump to high numbers I would push the Dr to do more searching.
I have had Thy Ca 2 times and now this is my third. I no longer take up iodine, so I have many challenges ahead of me.
Lisha

Celestec
Posts: 12
Joined: Sep 2010

Hi Diane

I know how you feel. I was diagnosed September 2009 with papillary with metastasis to several lymph nodes. I handled everything really well because I too thought surgery and a round of radiation would stop this. I had a TT and lymphnode removal during my Thanksgiving break 2009 and RAI during my winter break. Out of the 39 lymph nodes removed, 30 had cancer. I wish they would have told me then my risk for a reoccurrence was greater. In August 2010 I went for a scan, they never said anything to me, they told me I didn't need RAI and I could go home. Two days later my doctor called said my TG levels were around 12, which was not good.

I had an ultrasound two days before I went back to college for my junior year. The tech called in the radiologist because she found a nodule. Lucky for me they did the biopsy right there. It came back positive. I just had surgery again on December 21. They removed 8 lymph nodes two being positive for cancer. I also got a test done for the BRAF gene mutation. I go to my endo monday hopefully to get my results back.

I find it hard to be a "normal" college kid. My energy is still low and I get tired easy. People don't understand and its hard. I'm just glad to have found this website with alot of others going through the same thing.

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