Reoccurence of thryoid cancer

BellsAngel69

butterfly123 said:

BellsAngel69
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
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

nevergiveup51

sandykr said:

Debby
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

Hi Sandy, How was your day?
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

nevergiveup51 said:

Hi Sandy, How was your day?
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.

Hi Debby, I did the 10K
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

emma54

BellsAngel69 said:

butterfly123
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

Told it was not a real cancer
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?

‹ Need information Sometimes I feel like someone is sitting on my neck! ›

LMedlin

BellsAngel69 said:

butterfly123
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?

BellsAngel69:
Sorry for all
BellsAngel69:
Sorry for all you have gone through.. I am with you about the " Best king of Cancer" I had that one said to me recently and it just makes me mad that many nurses and doctors say that not considering the truth..

I hope all works out well for you and you are soon in remission. I will put you in my prayers for a quick and speedy recovery.. Please keep in touch.. Take care..

LMedlin

emma54 said:

Told it was not a real cancer
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?

‹ Need information Sometimes I feel like someone is sitting on my neck! ›

Emma54,
Hate to be the one
Emma54,

Hate to be the one to say this but I would have told the doctor off.. and let him know that I did not appreciate his bedside manner. He has not been through what you have and has not right to make comments like that.. I am a little quick to temper when it comes to doctors being jerks.. Hope I dont offend anyone.. Hope your cough goes away soon.. Take care..

butterfly123

LMedlin said:

BellsAngel69:
Sorry for all
BellsAngel69:
Sorry for all you have gone through.. I am with you about the " Best king of Cancer" I had that one said to me recently and it just makes me mad that many nurses and doctors say that not considering the truth..

I hope all works out well for you and you are soon in remission. I will put you in my prayers for a quick and speedy recovery.. Please keep in touch.. Take care..

Emma54
I am sorry that you had an visit with such an ignorant doctor. If it was me I would have told him off too. When I was first diagnosed with cancer I was somewhat afraid to voice my opinion. Now that I have recurrent thyroid cancer....I have no tolerance for idiotic behavior or comments.

When I was first diagnosed, I had a doctor tell me that I should be so thankful that I "only have thyroid cancer"...and that I should be "kissing the ground and praying to god that it is only thyroid cancer." Can you believe such statements?! Well here I am 5 years after a total thyroidectomy, with a tumor in my cervical spine and mets in my lungs. Thyroid cancer is no joke and it needs to be taken seriously.

I hope that we all do well and some day find the reason for this rise in thyroud cancer and a cure. Hopefully there will be a day when the blue butterfly has as much recognition as the pink ribbon.

emma54

LMedlin said:

Emma54,
Hate to be the one
Emma54,

Hate to be the one to say this but I would have told the doctor off.. and let him know that I did not appreciate his bedside manner. He has not been through what you have and has not right to make comments like that.. I am a little quick to temper when it comes to doctors being jerks.. Hope I dont offend anyone.. Hope your cough goes away soon.. Take care..

LMedlin
He is working on curing my cough. Diagnosed it as Chronic Bronchitis from years of smoking. Of course, I have not smoked in years, but I did and so be it. He is a good doctor in that respect. Since I just met him I did not want to tell him off quite yet, but that is why I said it could come back. I was trying to start a mature discussion with him and instead he said gave me that silly cliche, "Well, life has no guarantees." My point exactly, then it must be real. I do think he was trying to tell me not to worry, but does not realize what one goes through. Thanks for your response.

nevergiveup51

sandykr said:

Hi Debby, I did the 10K
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

Hi Sandy, you look great.
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

nevergiveup51 said:

Hi Sandy, you look great.
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.

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

Sandy

nevergiveup51

sandykr said:

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

Sandy

Hey Sandy, just wanted to
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

nevergiveup51 said:

Hey Sandy, just wanted to
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

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

nevergiveup51

nevergiveup51 said:

Hey Sandy, just wanted to
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

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

nevergiveup51

nevergiveup51 said:

Hey Sandy, just wanted to
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

Out of surgery
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

nevergiveup51 said:

Out of surgery
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

Didn't get it
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

radeohed

newly diagnosed
I am new to this site and I think I have waited too long for a support network. lol. I was diagnosed with HD June 6th 2008 with stage 3b disease. I am now 24 years old. I received 6 cycles of ABVD Chemotherapy with adverse effects to Bleomyacin after 1 cycle and was taken off. I then received 18 treatment of high dose radiation. I was officially in remission in March of 2009. The worst or at least the most annoying effect has been damage to my memory! I have just had a biopsy on my thyroid for a nudule that was present 7 months ago but was not told about. It has spread to lymph nodes as well. A full lymphodectomy will be done and they want to do radioactive iodine treatments as well. I really think i will opt out because radiation is what is causing my papillary carcinoma now , though I know it is nothing like external radiation. I also have questionable spots on my lung and liver as well. I dont really know what i am asking. any thought will be appreciated. i am afraid i am just going to keep getting cancer after cancer until one of them gets the best of me. sorry for the long post and thank you all. I am really worried about depression and weight gain as a result as well. thank you all, love alicia

BellsAngel69

butterfly123 said:

BellsAngel69
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?

butteryfly123
It was my TG that was rising, I keep typing that wrong. my TSH is fine.

BellsAngel69

radeohed said:

newly diagnosed
I am new to this site and I think I have waited too long for a support network. lol. I was diagnosed with HD June 6th 2008 with stage 3b disease. I am now 24 years old. I received 6 cycles of ABVD Chemotherapy with adverse effects to Bleomyacin after 1 cycle and was taken off. I then received 18 treatment of high dose radiation. I was officially in remission in March of 2009. The worst or at least the most annoying effect has been damage to my memory! I have just had a biopsy on my thyroid for a nudule that was present 7 months ago but was not told about. It has spread to lymph nodes as well. A full lymphodectomy will be done and they want to do radioactive iodine treatments as well. I really think i will opt out because radiation is what is causing my papillary carcinoma now , though I know it is nothing like external radiation. I also have questionable spots on my lung and liver as well. I dont really know what i am asking. any thought will be appreciated. i am afraid i am just going to keep getting cancer after cancer until one of them gets the best of me. sorry for the long post and thank you all. I am really worried about depression and weight gain as a result as well. thank you all, love alicia

Alica
What is HD, Hashimoto's Disease? Did they test the nodule 7 months ago, or just assume it was goiter (benign). And yes, thyroid cancer is radio-sensitive. I've given up dental xrays and any other type (unless I really need it). Why give something like cancer a boost to grow?

Keep your head up. It may be overwhelming, but if you have good doctors they will treat you correctly. One of the most annoying and frustrating things about thyroid cancer is it takes so many tests and time to figure things out before they can just treat you. I went through four months of testing before they figured out I had liver mets and needed surgery. As long as we can keep fighting it and coming out on top, we will prevail.

nevergiveup51

radeohed said:

newly diagnosed
I am new to this site and I think I have waited too long for a support network. lol. I was diagnosed with HD June 6th 2008 with stage 3b disease. I am now 24 years old. I received 6 cycles of ABVD Chemotherapy with adverse effects to Bleomyacin after 1 cycle and was taken off. I then received 18 treatment of high dose radiation. I was officially in remission in March of 2009. The worst or at least the most annoying effect has been damage to my memory! I have just had a biopsy on my thyroid for a nudule that was present 7 months ago but was not told about. It has spread to lymph nodes as well. A full lymphodectomy will be done and they want to do radioactive iodine treatments as well. I really think i will opt out because radiation is what is causing my papillary carcinoma now , though I know it is nothing like external radiation. I also have questionable spots on my lung and liver as well. I dont really know what i am asking. any thought will be appreciated. i am afraid i am just going to keep getting cancer after cancer until one of them gets the best of me. sorry for the long post and thank you all. I am really worried about depression and weight gain as a result as well. thank you all, love alicia

Hi Alicia, In December I was
Hi Alicia, In December I was diagnosed with Papillary cancer. I am seeing the surgeon on the 15th but she already told me it was stage 3 because it spread to 4 lymph nodes. In May I am scheduled to take the radioactive pill. I am told that it will get the remaining cancer cells -- its the only treatment for Papillary. What I have been doing is eating nutritionally and only organic. Drinking only bottle water (only in glass bottles). I also have several books that teach what foods fight what cancers.

You have to keep hanging in there Alicia. You are very young and I know you can beat it. Take care and let me know if I can give you any other information regarding the literature I read. Debby