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Reoccurence of thryoid cancer

sharonmitchell
Posts: 5
Joined: May 2002

Hello everyone:
My name is Sharon. I was first diagnoised almost thirteen years old , back in 1989. I had my entire thyroid, parathryroids, lymphs nodes and chest cavitiy scraped. Followed by M131 radiation in Feb 90, May 96, June 99 and Jan 00. Followup with tearduct reconstructive surgery (July 01) due to the side effects of the radiation. My right tear duct collapsed. At this point, I have "maxed out " on internal radiation treatments (M131) Currently, I was to have had 4 enlarged lymph nodes removed from my left side of my neck. However, once the surgeon was "inside" a radical neck dissection was necessary. Not only were the four lymph nodes were removed, but additional neck lymph nodes and all the lymph nodes under my shoulder muscle. Along with my lymph nodes, two lesions were discovered on my spine (C3-C4). At the beginning of this surgery I was to have the vertebrate removed with a bone hip replacement to replace the discs removed. The best part was to wear a neck brace for three months in the summer heat. But the good side of the surgery was after the head/neck surgeron finished, the neuro surgeon went in to begin the disc removal. However, the lesions were dead due to the previous radiation treatments and the dead cells were so small, the surgeon decided another alternative. The neuro removed the dead lesions, drilled out 20% around the lesions and saved my vertebrate. HEH HEH So today I sit here after my day of physical theraphy to restore my shoudler muscle back to normal, feeling pretty good. I do not have to wear the neck brace. I still have C# and C4 in my spine. The scar is directly over the previous scar. I have returned to work almost two weeks after the surgery. I can finally turn my neck so I can drive.Basically life is good again. Times can be rough.. but then there is the end of the rainbow. Attitude is everything.. and positive thinking can go along way.So for all thyroid cancer patients,, keep believing in tomorrow..and always try to smile everyday.
Sharon

Kristy
Posts: 7
Joined: Apr 2003

Hi Sharon,
I am impressed with your struggle and courage. I, too, am not one of the lucky ones who escapes thyroid cancer with traditional outcome. I'm in year four with a whole new host of medical challenges. I would be interested in communicating more with you if you please.
best wishes,
Kristy

sharonmitchell
Posts: 5
Joined: May 2002

Hi Kristy: Sorry that I have not had a chance to reply to you sooner. Life has been very busy for me. Since my last reply on the discussion board, I have completed my physicaly theraphy.. can move my neck, arms and shoulders. I guess the only drawback is that my left shoulder is lower than the right shoulder since many many lymph nodes were removed from under the shoulder muscle above the bone.. I guess that my drs are pretty aggressive in controlling the thyroid cancer.. I do not object.. if that is what must happen to give me another day on the planet then let it be...I know when I was first diagnoised my sister stopped believing in God.. she felt God let her down and that things weren't suppose to happen to good people... since then of course due to my many many treatments of radiation I could not have children due to the high hgih risk. But the good side of this is that God did have a plan for this unfortunate disease for me... my husband and I began foster parents and have offically adopted three brothers.. 20, 16, and 13. Now I guess that is why things happen and we just don't know why because God has a plan B. Well enough about me, please email me back and tell me about your life with cancer. I would very much to communicate with me.
Hope to hear from you soon.
God bless
Sharon

MJS
Posts: 3
Joined: Jan 2010

Hi Sharon,
wow, you certainly are an example of how far attitude gets you, thank you! I agree, it is so important to look on the bright side and be positive. Question for you and anyone else. I was diagnosed with papillary cancer last spring, 2009, my tumor was 2.4 cm and I had a total thyroidectomy but did not have any further treatment. My endo said surgery got it all and he felt I was "cured." Then at my follow up, 3 mos after surg, showed my thyroglob to be 0 (was 135 before surg, he did not check me for antibodies, though--I recently learned about that) and my tsh was good though i'm blanking on that number. I had surg, got my levoxyl and he said, literally,"see you in a year!" And that was it! I am on 100mcg of levoxyl and have to say I feel pretty good. The only thing is that a for several months now I have noticed a funny feeling in my right lung. I want to say it feels like a lump and I keep getting winded and cough. I am in good shape, work out regularly and jog but am having a hard time jogging now, I cough and feel really winded. Best I can discribe it is that my lungs just feel funny. I also have asthma, but this feels different, I'm not "wheezing" and my inhalers aren't helping. My question is, are there symptoms with lung mets? I am (surprisingly) not afraid, just want to know so I can get the proper care and enjoy my life. I'm actually more annoyed because I'm trying to train for a 10K and it's challenging! Having gotten more info this past year and reading these posts, I am now questioning my endo's advice (he sees the gamet of patients w/endo issues) to not have RAI or anything. So I will see a cancer specialist this February (took 3 mos to get an appt, oy) Anyway, I'd appreciate any advice. And Thanks again, Sharon for the positive outlook! cheers!
Mary Jo

BellsAngel69
Posts: 102
Joined: Dec 2009

I would get checked. Seeing how you didn't get a follow up RAI treatment, which is usually standard (I can't believe your doctor sent you on your way without follow up). Your TSH levels should be checked every three months following a thyroidectomy also. I don't want to panic you, but thyroid cancer can spread to the lungs. I would definitely get to your doctor and fast, tell him how you're feeling. You know if you're not feeling right. I would also consider a different doctor. I don't feel your's is doing you justice.

You need to be proactive in all of this. I wouldn't be satisfied and pushed out the door so fast. It's cancer, not a cold.

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Tell us how the 10K goes!!

lynn2318
Posts: 41
Joined: Jan 2010

Hi Mary Jo,
This is my first time on the site and read your post on your lung issue. I also had papillary cancer. My surgeon sent me to a endo and he immediately did lab work which consisted of thyroglobulin etc. My level was high post surgery and i received I131 treatment approx. 2 mo. after surgery. My cancer had spread to my lymph nodes however so I don't know if that makes a difference. After my first treatment my thyroglobulin was still measurable so i received another treatment 6 months later which was a year ago. I have seen my endo. every 3 months since my surgery which will be 2 years in April. He is insistant on frequent office visits, blood tests, and I had a ultrasound on my neck 2 months ago. I see him again in 6 weeks and will have lab again followed by a full body scan after thyrogen injections. My point is you need to may need to possibly find a different endocinologist. I don't mean that in a mean way, just concerned. I have also had chest xrays and CT of my chest and bone scan following my second treatment. Good luck on your 10K and I hope you find some answers for your lung problem.

nevergiveup51
Posts: 40
Joined: Jan 2010

Dear Sharon, I am so sorry for all your troubles, but what a great finish to your story. December 22, 2009 I found out that I have Thyroid Papillary Cancer. My doctor said that if I was to have any cancer this is the best one because it is over 90% curable. All the stories that I have read of thyroid recurrence is so scary. I read that sometimes the iodine treatment doesn't even work. My surgery is schedule for March 17th. She told me that there is a 60 to 70% chance that I have thyroid cancer (they couldn't be 100%). It's a little bigger that a dime, millimeters and when they did the ultrasound they found one lymph node that may have cancer. I have been having troubles for a long time such as my neck hurting, hard time swallowing, I get winded at times. If I had it for a long time and just found it does this mean the outcome will be bad? There are so many sad stories why is the cure rate so high? I am really scared. Hopefully I'll see a posting tomorrow. Bye for now.

Thanks
Debby

P.S. Mary-Jo, all the advice you have gotten from this site is good. Good luck.

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Hi,
I too have been going thru all of this since this past summer. 2 surgeries later, no thyroid (papillary cancer) and now almost 2 weeks post RAI and I must say that in spite of it all, I'm feeling good!
Why is it a "good" cancer, I think because usually they are very very slow growing cancers so they can be caught in time. Also, you can live without your thyroid, so first line of defence is taking the thyroid out.
True, I too read peoples stories about recurrence, metastases etc. but on the scale of things, it is "easier" with thyroid cancer.
My only advice is to find good doctors, ask lots and lots of questions (these sites are great) and keep a positive attitude

Feel good

Sandy

nevergiveup51
Posts: 40
Joined: Jan 2010

Hi Sandy,
Thank you for replying and your right this is a great site. Now I don't feel alone. Just wondering why did you have two surgeries? When I went to meet the surgeon she said she will remove the thyroid. After I recover from that I ween myself off the synthroid for two weeks, scan, and then I do the iodine treatment, is this the order? Were you in the early stages (if this is too personal don't feel you have to answer). I was just wondering.
Thank you for your advice regarding the doctors. It took me a long time but I think I found one that actually listened to me.

By the way, when you found out that you had Thyroid Cancer did you go on a special diet? I have been reading that you shouldn't eat any animal products, no processed foods, all organic fruits and vegetables. It's expensive but if it means your life you have to find a way to do it. I am going to keep positive. Its nice communicating with you. Thank you again.

Bye for now, Debby

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Hi Debby,
I had two surgeries since when I had the fine needle biopsy, only the cells on the left side were "pre cancerous", so they only took out the left side. If they would have been cancer, they would have done a total. My luck...........was that when they biopsied the gland that they removed, it turned out that it was cancer, so 3 months later, out came the right side. When they biopsied that side of the gland, it turned out that there was cancer in it too, and now I am saying that I really was lucky (no sarcasm here!), since on the FNA those cells were ok!
Of course the hard part was going into surgery twice, but the second time, I knew exactly what to expect.
I was on cynomel after the surgery for about 3 weeks and then went off in preparation for the RAI. I was never told to do a special diet, which I was glad about. I tried to stay away from seafood as I know its full of iodine, but thats about it.
Any other questions..........believe me, nothing is too personal. Getting information only helps to lessen the anxiety etc.
My own personal recipe for good health is exercise. I exercise alot and I am convinced that that has helped me thru all of the ups and downs of not having a thyroid. Right now my TSH is over 100, I am on thyroxin (2 weeks now), but I'm back to running 10K, and swimming and I feel good!
Sandy

nevergiveup51
Posts: 40
Joined: Jan 2010

Hi Sandy,
My computer had a virus and it took a few days to get it up and running and here I am.

I am sorry you had to go though that but I am glad they caught their mistake and removed the whole thyroid. As you know, you don't even need your thyroid. When I was diagnosed at the end of December I decided to join the gym and I have been going ever since and your right, it does feel good. It relieves stress. Today I had hard day though, just walking and going up the stairs I get heart palpitations and winded. Its tough. This type of thing has happen to me for a while and I just related it to my lyme diease but now I think it has to do with my thyroid. Should I concerned and tell the surgeon. She didn't schedule me until March 17. I wish they can remove it sooner. I hope their not making a mistake by waiting. I'll talk to you later, Debby

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Sure, why not mention it to your surgeon, if the nodule is obstructing, or pressing on your wind pipe, that could be causing your getting "winded" but mention it so that YOU feel relaxed about it.

How are your thyroid hormone levels? Are they ok? Mine were fine before surgery, but if they are altered, this too can give you palpatations etc.

Talk to your surgeon! let me know

Sandy

nevergiveup51
Posts: 40
Joined: Jan 2010

That is exactly what I am going to do. I have her assistants e-mail address and I will repeat exactly what you just said. What I am hoping for is that they will fit me in earlier, March 17th is so long to wait. The anxiety of it all is overwelming. I just want it to be over.

I didn't mention it to you before but my twin sister Dawn was also diagnosed with Thyroid Cancer. She had her surgery on November 18th. I spent the night with her at the hospital. My sister is Special and what I mean by that is when she was born she lost oxygen and when they revived her damage was done. She can only makes sounds when she speaks. Dawn is the most wonderful person in the world. She makes people laugh all the time. An example: the anesthesiologist came in the recovery room to see how Dawn was doing, and he told me that while she was in the operating room his mask wasn't on straight (at least not for Dawn's liking) she sat up and straightened it out for him. I just laughed because that is my sister all way. That's why we don't take her shopping too much. When she walks into a store she has to sip every jacket, button every shirt and the list goes on. It's pretty funny. This past week she went through the radioactive iodine treatment. They had to admit her for three days. She was all alone in a room. She did fine though. I'll keep you updated on her along with myself if you want. Thank you Sandy for posting. I look forward to reading your messages.

Talk to you later, Debby

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Thats interesting about your sister, were you diagnosed because of your sisters cancer?? Well if your sister could manage the RAI in a hospital setting she really is "special"

Let me know if your surgeon changes the date. If not take some vacation or something before, anything to take your mind off it!

nevergiveup51
Posts: 40
Joined: Jan 2010

Hi Sandy,

Yes, because of Dawn I went to the doctor and ask to be tested so he did and here I am now. Actually tonigh I am pretty scared. I just got off the phone with a nurse, my nodule was written in millimeters so here I have been thinking it is small but actually it is 1.6 cm and I really have to get this think out sooner rather than latter. My scheduled appointment is March 17th (6weeks from now)

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Just looking back at my pathology report, After the first surgery, the nodules were .6 and 1.2 cm! On the right they were even bigger (1.8), but of course I didn't know this before surgery. I had about 6-8 weeks waiting until my first surgery. Now that was my choice, I was told that it was not urgent and we were going on vacation.........so I scheduled it for afterwards. Like I said, I was told that this is a very very slow growing cancer, but for sure I understand what you're going thru. Lucky you went to get tested!

Sandy

nevergiveup51
Posts: 40
Joined: Jan 2010

Hi Sandy,

How have you been doing? I have been exercising everyday and doing yoga trying to keep from getting too nervous. I have a doctors appt. on Feb 9th, ENT to check my voice box, wish me luck. Have you done your iodine treatment yet? One of your postings you mentioned that you swam. I just wanted to mentioned that during my researching one article mentioned that individuals with either thyroid problems or thyroid cancer should not drink fluoride and chlorinated water. I don't know if that would include swimming only because it has great amounts of chlorine in the water. I am going to look into it further but I just wanted to mention this to you just in case your weren't aware of it. I'll talk to you later.

Debby

emma54
Posts: 59
Joined: Aug 2009

WOW! My dental hygenist briefly mentioned the flouride and said she was going to look into it, but we both forgot. I am an avid swimmer and have been having trouble since my thyroidectomy. My throat gets really dry when I swim and I am coughing a lot more than usual (i always cough)!!! I am going to an ENT on Friday, so I will run this by him. I certainly hope it is not the chlorine or my dog because i will not stop swimming and my dog stays!

nevergiveup51
Posts: 40
Joined: Jan 2010

Emma, let me know what the doctor says and your right, how can you ever give up your dog. As far as swimming goes there is always the ocean in the summer of course. Debby

emma54
Posts: 59
Joined: Aug 2009

You're right and I happen to live in a state with lots of Ocean. But we never go down there. I have changed my appt. from an ENT to a Pulminary Specialist. I think I might have asthma. But I will ask him. Thanks for your response.

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

That is interesting what you say about floride, I will also ask my dentist.
I am now almost 4 weeks post RAI, they gave me 2 weeks off of work, one for isolation and the second week was for me..........rehab week. I was in the gym every day just getting back in the swing of things. I didn't over do it, but it felt great to be moving and exercising. I am doing a 10K run on Feb 20! my daughter is doing a half marathon, but 10K is enough for me.

I will try not to drink any water next time I swim!

Write after your Drs. appt.

sandy

Swimmers Unite!!

p.s. I am convinced that all of my sports did help my body readjust post TT and RAI.

emma54
Posts: 59
Joined: Aug 2009

Hi Sandy,

I'll let you know what the doctor says. If he doesn't know, I will ask my Endo. He is great! Yes, Swimmers Unite! Good luck on your run. I'm impressed!

emma54
Posts: 59
Joined: Aug 2009

Hi Sandy,

I'll let you know what the doctor says. If he doesn't know, I will ask my Endo. He is great! Yes, Swimmers Unite! Good luck on your run. I'm impressed!

emma54
Posts: 59
Joined: Aug 2009

Hi Sandy,

I'll let you know what the doctor says. If he doesn't know, I will ask my Endo. He is great! Yes, Swimmers Unite! Good luck on your run. I'm impressed!

nevergiveup51
Posts: 40
Joined: Jan 2010

I laughed when I read "I will try not to drink the water" I felt like I was talking to my children. That's great though that you and Emma are so committed. I myself never learned to swimm but I do love the water too. I float, its very relaxing. I better get going now, I have a doctors appointment at 10:30. I'll talk to you guys later.

Debby

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Glad you laughed! When I went swimming yesterday...........I thought about it the whole time! It seems to me that you hardly swallow any water, alot of it just goes in and out of your mouth, but you don't really "drink"" it! My thought of the day!

Even if you don't swim, walking in the water is great!

Hope all goes well

sandy

nevergiveup51
Posts: 40
Joined: Jan 2010

Hi Sandy,

I replied yesterday but I guess it didn't go through. How are you feeling? My sister is doing good after her iodine treatment. She is a strong girl. Good news, I went to the ENT and he said everything looks normal so that's a positive. I called the surgeons office a while ago to see if they can push me up for the surgery but no one has gotten back to me yet. I'll try calling tomorrow. This waiting is not good. Talk to you soon. Debby

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Glad to hear that your sister is doing well! You too will be fine, just a few more weeks, right? I'm doing good, I'll post a picture when I finish my 10K!!

keep me posted

sandy

nevergiveup51
Posts: 40
Joined: Jan 2010

Hi Sandy, How was your day? Your back at work? Today for me was sad. I'm just having a hard time. The main problem, besides the obvious, is that my sisters make me feel worst than I already do. Especially one, she says things like "I'm glad I'm not a twin because I wouldn't want to know what I'm going to die from". That's only one example out of million. My husband and I are getting a divorce, but this is a good thing. I just don't have a partner I can cry to. My kids, I have two, 14 and 23. I just don't want to upset them more so I try not to burden them too much. Not always successful though. Then I have you. I'm sorry I am venting to you. I really hope you don't mind. I just know that your going though the same as I am. How do you get though these tough days? I think I am going to try to plan a vacation. This may take my mind off of my own problems.

Changing the subject -- What do you think of Tiger, that is, TIGER WOODS. I think he is full of it.

By the way, did you do the 10K yet. It must be invigorating. Hoping you have a good time.

Talk to you later. Debby

P.S. Thanks again for being their.

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Hi Debby, I did the 10K yesterday and it was great! It was at the Dead Sea....the lowest place on earth and very hot, even for february.
Hey, this forum is for venting...........When is your surgery? I'm sorry things are hard for you, are your parents supporting?? Siblings can be "fickle" and give your kids some credit, especially the older one. I think it depends on how you present it to them, you should be positive (hey your online name is nevergiveup!!) and your kids may surprise you!

A vacation sounds great, as I think I told you, I did go on vacation before my first surgery and it was great, didn't have time to think too much.

I agree with you about Tiger Woods!

sandy

nevergiveup51
Posts: 40
Joined: Jan 2010

Hi Sandy, you look great. The excercising agrees with you. Sorry I haven't written in a while, I have had a lot going on including getting ready for the surgery. My surgery is March 17th. You asked if my parents are supporting me -- my parents died when I was 20 years old (31 years ago). They died 40 days apart. My mom couldn't live without my father, her heart just couldn't take it.

I've been exercising along with going into the Sauna. Sweating is really good for your body as you already know, it releases bad toxins. The more you sweat the better it is. If you haven't guessed by now, I read a lot .....

Well, I'll talk to you later and I hope that everything is still going extremely well for you.

Debby

P.S. Go into the Sauna as much as you can. Although, CAUTION: if you have high blood pressure or bad heart you shouldn't use it.

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Thank you! I will be thinking about you next week! How long will you be in the hospital?

Sandy

nevergiveup51
Posts: 40
Joined: Jan 2010

Hey Sandy, just wanted to remind you that my surgery is tomorrow. I have to be at the hospital at 10:30 so I guess the surgery will be at 11:00 or 11:30. They told me the it will probably be a 2 to 3 hour surgery. I am so nervous and scared. You can pray for me if you remember. I'll talk to you when I come home. They said I just have to stay in the hospital overnight.

I'll talk to you soon. Bye for now, Debby

jhix
Posts: 2
Joined: Mar 2010

I just had my TT last Wednesday - the 10th - I was the same way last Tuesday night. My thoughts are with you!

nevergiveup51
Posts: 40
Joined: Jan 2010

Hi Sandy, I sent you a message. Did you get it? Let me know. Debby

nevergiveup51
Posts: 40
Joined: Jan 2010

Hi Sandy, just sent you message but I don't know if it went through. Used the private message. How do you send a private message. Would it be better if I give you my e-mail address. Talk to you soon Debby

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Hi Debby, I didn't get your message. If you look on the left side of the web page , in the CSN section, it says CSN Email. Thats how you can send it, but if it doesn't work, send me an email. I'll send you my address.
Sandy

Blair84's picture
Blair84
Posts: 45
Joined: Jan 2010

Hi, thank you for the advice, I've been diagnosed with papillary carcinoma last week and it's been hard.. I will have my surgery soon. Great advice

tonesgurl
Posts: 42
Joined: Dec 2009

Bair84,

I just wanted to say Good luck with the surgery and that everything u r feeing is normal! We have either been there too or are going through it now (which is the boat I am in).

Here is my story..... My name is Adrian,I am 37 and was dx with papillary thyroid cancer in July 09. I had 3 tumors in left and 1 on the right side largest was almost 4cm so I had TT July 31. I was told that the cancer would be removed once the thyroid was taken out, NOT SO. After sugery I was placed on 75mg of Levothyroxin. August 5th I went for the follow up with the ENT (who performed the surgery) and was told the surgery went well and was passed on to an Endocrinologist. I had alot of questions for the ENT he said "My part is done, anything else you want help with you need to ask the Endo." Needless to say I was in shock and pissed off, they damn near had to have me escorted out of the building!
Sometime in October I went to see the Endo and was told the cancer was still there so I would need to have RAI, my levo was increased to 100mg. I have done alot of blood work as you all have too I'm sure. Then my levo was upped to 137mg. I have been having really bad hypo sypmtoms and I hate it!!!! Extremely tired, forgetful, everything hurts, I can go on but I won't. I had to go off the meds for 6 weeks before the RAI and the lovely LID was just great :( That was the worst 6 weeks I have ever experienced, anyone that has had to go completely hypo knows the feeling....LOL. I had RAI 160 millicuries on Nov 3 and the body scan Nov 12. When I went for the follow up to that my endo said there was no spread of the cancer but there was alot of residual tissue left over and the scan showed alot of spots???????????? OK and that means what????? I need help from u guys! If my cancer is resistant to the iodine what is next? My doc was hesitant to give me any real info, only telling me the cancer is STILL there and increased my levo to 150mg. So after being told that I have 'the best cancer to have' because it's the easiest to cure why am I not cured. I was told the surgery would remove it, then that the RAI would kill it, do we just live with this cancer or trully get cured from it? I don't have anyone that can relate to what I am goin thru right now and I need some advice. Thanks for letting me vent.

butterfly123
Posts: 52
Joined: Feb 2010

Hi Tonesgurl,
Sorry to hear that you had to go thru all of this. I think one of the important things to find out from your endo is your thyroglobulin level, especially when you were hypo. The level should be very low, almost undetectable. The fact that your post RAI scan lit up in spots is probably good news - it means that the residual cancer and/or thyroid tissue/cells will be treated. Thyroid tissue that does not light up is RAI resistent. I've been told that it takes up to a year for the full affect of the RAI treatment. You know if its been effective by your thyroglobulin level. I would expect in a year your endo will test your thyroglobulin level by either having you go hypo again (and it stinks) or by giving you thyrogen shots. I know it's difficult not to worry....But remember that both healthy thyroid cells and cancer cells make thyroglobulin. Is it possible that the ENT did not get all the thyroid out during the surgery.

The reason for so much levo is to keep your TSH suppressed. An elevated TSH can make the thyroid cells left in your body become active. So if your endo suspects thyroid cancer then you want to keep yout TSH suppressed as you can tolerate.

The reason I may seem to know way too much then I ever thought I would know is that I have recurrent papillary thyroid cancer.

I hope this helps at least a little. Thinking of you and wishing you the best.

tonesgurl
Posts: 42
Joined: Dec 2009

Buterfly123,

I have been hypo (off the meds) for 6 weeks before the RAI treatment. I hated every minute of it!!!! I had 160 millicuries of the RAI. I have had my Levo changed from 75, 137,150 and currently on 200. My thyroglobulin was 6.9 and the Endo says we may have to do another round of the RAI.
I have had to learn to be patient, with all the waiting we have to do! I go bavk to the Endo in March, my new ailment is degenerative disc/joint disease in my back with a protrusion at L5.................Just gets better and better. LOL
I am keeping as positive as possible though I am in alot of pain.

Thank you for ur response it helped me alot.

Adrian

LMedlin
Posts: 21
Joined: May 2003

Since you have had a recurrent papillary thyroid cancer I am hoping you can help me.. When yours returned where was it located. I have been doing research and found that sometimes it returns in the lungs or breasts of women.. Also I found and article that state that I131-RAI in certain dosages may cause leukemia in patients later. Sorry to be so vague but I have recently been told that my TSH is 35.. Yes High.. I had Papillary thyroid cancer in 2003 and was treated with RAI six weeks after total thyroidectomy.. I am now worried.. My doctor was making comments about possible Pituitary gland problems, brain tumors and then in the same sentence he said I had him baffled.. I am sort of own my own until I go to the endo next week however the primary doctor is scaring the crap out of me.. Do you have any advice? I know I should not let this worry me too much however with how I have been feeling for the past few months I wouldn't.. I am on Levothyrozine 275... So my thyroid tsh should be suppressed.. Its just crazy.. Any advice would help.. I cant talk to my family about this. My mom is going through enough and my husband doesn't want to hear it. thanks for your time..

butterfly123
Posts: 52
Joined: Feb 2010

Hi Lmedlin-
My recurrent papillary thyroid cancer (follicular variant) was discovered by a routine thyroglobulin (Tg) blood test. TSH is the amount of stuff your pituitary gland makes which tells your thyroid cells to make more stuff....I think I have that correct :). Your thyroid meds (Levothyrozine) after TT for thyroid cancer needs to be suppressed so your body does not "activate" any left over thyroid cells/cancer. Thyroglobulin is the stuff that is normally made from thyroid cells (or thyroid cancer). So the docs use Tg as a cancer marker after TT because the Tg level should be undetectable after RAI treatment.

Is it your TSH or Tg level that is off? That would be very helpful to know. I have heard that the pituitary gland can get a little off after TT and especially after being hypothyroid. I also know that using generic thryoid meds may not be as good as using brand name. If it is your TSH you may want to switch to a brand name version.

As far as my reoccurance, I am a rare case. I had my TT back in 2004 (stage 1, no lymph node involvment). I was the text book example of stage 1 thryoid cancer and supposed to be in the 98% cureable bracket. Well, then almost 4 years post TT, my throglobulin level was 6 while on thyroid meds. My tg level was always below 1 before this time. It went all the way up to 55 w/thyrogen injections and 150 while hypo.

It took about 6 months to locate where the thyroid cancer was....I had neck ultrasounds, MRI (to look at deep lymph nodes), CT Chest, CT brain, RAI tracer dose which were all negative. I finally had a PET/CT scan done that was positive. The 1CM tumor is in my upper cervical spine. So I was treated with RAI but the tumor did not take up RAI. Tumors can dedifferntiate (and one of the dedifferentiate marker is losing its (radio)iodine uptake). I am now looking at beam radiation. If it is your Tg, you need to have more tests done to find it. I am very, very fortunate that my doctor was determined. I also have microscopic mets to both lungs and I found this out only after having the RAI (because my lungs "lighted" up). If anyone has had either cervical spine tumors or the micro mets I would love to hear from you. I am exploring my treatment options but I am uncertain on what to do since I cannot seem to find anyone with a case like mine.

Please let me know if it is your TSH or Tg? Since your doc mentioned Pituitary and the brain, it could very well be your pituitary gland.

Look forward to your reply. Hope this helps and wishing you the best!

LMedlin
Posts: 21
Joined: May 2003

Good Afternoon, Butterfly123..

It is my TSH that is up.. I moved to Florida in 2007 and since then none of the Endocrinologists have done a Tg.. Why I don't know but they have not.. I am in the process of changing Endocrinologists again trying to find one that actually follows the guidelines so that I can get the testing that is needed. I appreciate your help.. My brain is not working well lately.. My memory is not what it use to be.. I am just trying to figure this out.. Before I was diagnosed with the cancer I went through 15 different doctors and was even told it was all in my head that I needed to see a shrink.. So I am just trying to push my doctors to run the appropriate tests.. I do go tomorrow for a UGI to see if my stomach is why I still have difficulty swallowing. they will also do a dilation of my esophagus at the time I am there.. I then go Thursday to have a sonogram of my abdomen because of pain I have been having.. The doctor has changed my medication to name brand again. which is what I was on til I moved here. I changed due to the cost difference when my husband lost his job.

I hope all goes well with you. I have looked into the cancer treatment centers of America. They have a lot of information on their website as well as a way for you to chat with someone there.

Yes you have been a great help and I really appreciate you listening to me. My husband doesn't want to hear anything so I just feel so alone. Its hard to do this on your own when you know what the chances are. Thank you.

Lisa

butterfly123
Posts: 52
Joined: Feb 2010

As you probably know, your pituitary gland is pretty important and I hope you find out what is going on with yours. It sounds like your symptoms could be related. Good luck and let me know how you make out with your appt.

BellsAngel69
Posts: 102
Joined: Dec 2009

I had well-differentiated follicular cancer with hurthle cell variant. Had a TT Feb. 2004. Had RAI treatment and subsequent yearly follow ups were fine for two years so my endocinologist let me skip a year. The very next year, my TSH was rising. RAI scans showed a metastasis to my hip bone. I was given another I-131 treament, but my TSH never went back down. Six months later it was even higher so I had a PET and RAI scan and both showed the same spot on my hip bone. The bone/lesion didn't absorb the RAI, so I had surgery to remove it and was sent on my way. Six months later my TSH was even higher, but my PET was clean or so I was told. They actually saw something in the same area last year but made a judgment call that it was just passing through my body and nothing was there because they really couldn't see anything lighting up. Six months after that, my TSH had quadrupled. Antother PET and RAI scan showed a spot in what they thought was my stomach. Test results have now shown it's in my liver.

Hurthle Cell Cancer is vary rare, but is usually the type that presents the most metastasis, 34% of people diagnosed with HCC have a metastasis somewhere down the line. It is almost unheard of for it to go to the liver, less than 0.5% have a liver metastasis, so you can imagine how I feel. My initial diagnosis was also good, in the 98% I would do fine. There aren't any articles to research it's so rare. So now I find myself facing a liver resection. They want to take my entire left lobe out for one little lesion. This really sucks big time. I'm now going to go to Johns Hopkins to find alternative treatment to try to control my TSH so I don't have more reocurrences, or maybe give me a break and put it into remission for a while. Of course this is after I have half of my liver removed.

Yeah, "Best kind of cancer to get." Did they tell you that too?

butterfly123
Posts: 52
Joined: Feb 2010

Wow. I am sorry you are going through all of this. It looks like we are both very special people. I wish you the best and you're right it does really suck big time. Yes I was told that I should be very happy that I have thyroid cancer. That statement makes me really angry!!! Looks like we proved all those docs wrong! I am sure you now get every doctors attention when you tell them you have liver mets from thyroid cancer. I hope that your treatments at John Hopkins are successful and give you some relief.

Quick question...it is your TSH or Tg that is rising?

butterfly123
Posts: 52
Joined: Feb 2010

Wow. I am sorry you are going through all of this. It looks like we are both very special people. I wish you the best and you're right it does really suck big time. Yes I was told that I should be very happy that I have thyroid cancer. That statement makes me really angry!!! Looks like we proved all those docs wrong! I am sure you now get every doctors attention when you tell them you have liver mets from thyroid cancer. I hope that your treatments at John Hopkins are successful and give you some relief.

Quick question...it is your TSH or Tg that is rising?

BellsAngel69
Posts: 102
Joined: Dec 2009

I think we'll both make for excellent case studies. So much can hopefully be learned from what we're going through. Just goes to prove that cancer is cancer no matter what kind. It can still metastisize and do strange things. That's why it's cancer. If you'd like to talk more via email, my addy is: rorick@frontiernet.net and my name is Patti. Hugs

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