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Papillary Thyroid Cancer Patient needs help

tonesgurl
Posts: 42
Joined: Dec 2009

My name is Adrian,I am 37 and was dx with papillary thyroid cancer in July 09. I had 3 tumors in left and 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.

bren8994
Posts: 1
Joined: Dec 2009

Hi Adrian, I hate to say it but I know how you feel. Everyone keeps telling me that I have the best type of cancer to have but I just don't agree. I also had my thyroid removed thinking it would take all the cancer out. I found out after that it did not now I have to do radiation on the 13th. They think it might have spread to my lymph nodes. What then? The Dr's are very limited on information because they told me they don't like to play the guessing game!!!!I feel so alone. Every time I talk to my family they act like it's nothing because that is what the Dr's have been telling us. It make's me crazy that someone can tell me I am ok because I have the "GOOD" cancer! I didn't know that there was a such thing!! I am sorry that I don't have any answers for you but I am so sick of feeling alone in all of this I hate to think anyone else feel's the same way. I hope you get some new info soon. Take care!

tonesgurl
Posts: 42
Joined: Dec 2009

I definitely know how u feel about the family responding to you and your cancer. They simply 'don't know' I have just come to that realization! It's not any fault of their's they r just not in our 'boat'. I also tend to feel alone even though I have so much family, it helps to talk and correspond with others that r going or have gone through the same situation. My next visit is on the 7th of January.............I wonder what 2010 has in store for me and my cancer. I hope you keep in touch and good luck with your battle with cancer.

Monijo
Posts: 6
Joined: Dec 2009

I get soooo tired of people saying "At least it was thyroid cancer." Cancer is cancer no matter where it is. When I was told my thyroid and lymph nodes where covered in cancer, I felt like I had been handed a death sentence. I was scared. If thyroid cancer is no big deal then why do we have to have yearly full body scans? Why do we have to have blood work every 3-4 months to check the thyrogloblin (I don't know how to spell it) levels? I have a friend who has been battling thyroid cancer for 14 years. She is now resistant to RAI and whenever they find it, it is automatic surgery. Once someone has cancer, they have a higher chance of getting it somewhere else in their lifetime. We hear soooo much about breast cancer and soooo little about thyroid cancer. I know of a lady who had breast cancer and she had radiation shot into her breast and now she is fine.....Not so with thyroid cancer. We have to go through 6-8 months, if not longer, of fatigue, crazy emotions, foggy brain, etc,etc. So many people with thyroid cancer feel like they are alone, but we aren't. I'm glad we have this web site to vent.

tonesgurl
Posts: 42
Joined: Dec 2009

WOW is all I can say about battling thyroid cancer for 14 years!!!!! But we have the easiest cancer? That is nothing even close to easy. How many surgeries has your friend had so far? I have to get my thyroglobulin checked on the 7th of January. I get my blood checked so much I have permanent marks on my arms......lol.............have to find something to laugh about right?! I was beginning to get worried because no one was responding to my initial post but then I got two responses back. Nice to know I am not the only one feeling like this is a scary ride. Thank you for responding and I hope u have a great New Year's

Monijo
Posts: 6
Joined: Dec 2009

My friend has had 3 surgeries. The last one she had was a year ago and they found it in her collar bone. Your definitely not alone!!!!

miladyx
Posts: 85
Joined: May 2009

... Does your friend have? Was she young at diagnosis?

tonesgurl
Posts: 42
Joined: Dec 2009

Monijo please tell your friend I am praying for her and her loved ones. Hopefully no more surgeries, wouldn't that be a great blessing?!

Cheated
Posts: 4
Joined: Jan 2010

Hi

First of all, let me just say, your ENT is a jerk. Anyone who performs a surgery has a duty to follow up and answer your questions. But, I'm curious, why an ENT and not an Oncologist? My surgery was performed by an Endocrine surgeon, but then I was immediately hooked up with an Oncologist, who would handle the RAI, yearly scans, etc. My Endo just monitors my bloodwork and Levo prescriptions.

Anyway, my initial surgery and treatment was a year ago. I am due to go back for a scan the last week of January. You mentioned the spots on your scan and worrying about being resistant to the RAI. What I was told last year by my oncologist's nursing staff, was that I would just continue to take my Levo/synthroid for the next year, and that there was nothing else they could do at that time because the latest research had shown (apparently my oncologist had just been to a research seminar) that the RAI could continue working for up to one year. That doesn't mean you're walking around radioactive and a danger to your loved ones for that long, just that internally, your body could still benefit from the RAI. My scan had showed my body clear, but "activity" in my neck. When I asked what that meant, they told me it could either be Cancer cells, or it could be leftover thyroid tissue that they couldn't get out in the surgery - just microscopic bits of tissue. So, supposedly, the theory is that a year later, they will be able to see if there is still activity in my neck. If so, I guess they will assume it is Cancer and send me back for more RAI. Otherwise, I expect to be released again until next year.

I don't think that having only been through the RAI once, you're "resistant" to it. It's just that unfortunately, some of us have to go through it more than once to truly kick this Cancer. But before you go thinking I'm all cheery about it, I'm not.

I'm due back for my scan in a few weeks, only to be thrown some curve balls I wasn't expecting so I'm plenty ticked off too. And, I am about the most calm person you'd ever meet. In times of extreme stress, my blood pressure has never wavered, I calmly make decisions, etc. However, some of the discussions with the oncologists office this year have sent me nearly into panic attacks - heart racing, etc. That is completely out of character for me. So, no, I don't believe this is an easy Cancer. I've found, too, that I hesitate to talk about my Cancer because there are people who have it so much worse, going through Chemo, losing hair, being sick all the time, etc. It's almost like I have felt like I didn't have a "right" to my feelings because I have a "lesser" form of Cancer.

But, now that my follow up scan is approaching and I see all that I have to go through and have been informed that they are still looking for spread in my body, even though the scan last year was clear, I now feel like Thyroid Cancer sucks as much as any other Cancer and I'm grateful for this board because I have needed a place where it's safe to say that.

I've recently had a family member say regarding my upcoming treatment, "Oh, you'll survive" - she meant the unpleasantness I have to go through. I know this relative loves me, but her comment was so insensitive and it just cut so deeply. Whether or not "I'll survive" is not the point. The point is it sucks to have to go through it and a little sympathy and compassion would be nice.

I hate Cancer. I've always hated doctors. I avoided doctors for 30 years and suddenly I've got a whole host of people on my "staff".

So, no matter how "easy" this Cancer is supposed to be, my user name reflects my attitude - I feel that I have been cheated out of the next decade. Life may go on, but it will never be the same, it will not return to normal. My children's young childhood years will be overshadowed by Cancer - even if it's "beatable", it's still there - reminding me all the time that I still have to deal with it. So, it cheats me out of a normal, relaxed life, a life where I get to just enjoy and savor my kids, and enjoy the last decade of my life before I hit "middle age". It has cheated me out of so much more emotionally, but this post is long enough.

I wish you well with your ongoing treatment, but I would definitely look into finding an oncologist who specializes in the Endocrine field.

Cheated
Posts: 4
Joined: Jan 2010

Oh, I meant to add that unless you're opposed to it for some reason, you might consider combining advice from both "traditional" medical personnel with advice from naturopathic doctors or resources.

I believe Naturopathic resources have a lot of good information to share. That doesn't mean you have to go all natural and refuse RAI or other aggressive medical treatment. I'm just saying if you read up on vitamins and minerals and everything each one helps with in our bodies, it can be truly fascinating.

There are so many vitamins that can bulk up our immune systems, to help give our bodies something to fight Cancer with.

Prescription for Nutritional Healing by James Balch is an excellent book for discovering what vitamins and minerals can do for us, and what kinds of symptoms may be helped with vitamin therapy.

Also, this website offered a lot of useful information when I was first learning about Thyroid Cancer:

http://www.endocrineweb.com

MJS
Posts: 3
Joined: Jan 2010

Greetings and Happy New Year!
This is my first time posting to this site. I couldn't agree more that this is far from an easy or good cancer. It humors me to hear those words come from people who don't have it. Well intentioned as they may be, they simply don't understand. I was diagnosed in april 2009 and had a total thyroidectomy at that time. I haven't been happy with my endo and I am questioning my follow up care. Check out www.thyca.org. My surgeon recommended it and it has been an invaluable resource for me. I found a local support group and am on one of the on line support groups (you will see them under "find support"). I was able to get the names of thyroid cancer specialists from my support group. My endo sees the gamet of patients with endocrinological diseases, he is not a cancer specialist and this cancer can be funky/complicated to treat. So, I am going to see someone in february (took 3 mos to get in, oy). I live in the western part of massachusetts and am going to travel 2 hours to see this doc in Boston, it's worth it to make sure I'm on the right track with my care. Frustrating as it is, we need to be our own advocates. Fortunately (or unfortunately, really) we are not alone either as you are finding in these groups. Hang in there everyone and keep your spirits up as you can!
in solidarity (o:
Mary Jo

tonesgurl
Posts: 42
Joined: Dec 2009

Thank you Mary Jo. I know what you mean about people having good intentions but not having a clue that's why I am happy we have these kind of forums. Where we can be in contact with people that have the same cancer as we do and can offer support, advice, personal experiences and again support. Our families love and care for us, that we know, but unless you have been through it you trully don't know. I hope this will be a more promising year for us all!!!!!!!!

tonesgurl
Posts: 42
Joined: Dec 2009

Reading your post brought tears to my eyes.........I have so many of the same feelings. Of being cheated especially when it comes to my girls. My 10 year old asked me the other day when I was driving them to school, "Mommy can you die from thyroid cancer?" I had a knot in my throat bigger than the nodule and took every fiber of my beong not to break down and cry at that moment. :( My 10 year old is carrying alot on her little shoulder's wondering if mommy is going to die. I reasured her that I take my medicine and make it to all my doctor appointments and do what the doctors ask me to so that I will be here for a long time still. I can't imagine what all 4 of my daughter's feel since I was diagnosed even though I talk to them alot about everything I know they don't alwaystell me how they feel. On the other hand to answer your question about not having an Oncologist, well I have asked to be referred to one and will ask again tomorrow when i go to my Endo for the results of my thyroglobulin test. I can't thank you all who have responded to me enough. It trully does help me.

tonesgurl
Posts: 42
Joined: Dec 2009

I thank everyone who has responded but I have new questions. I went to the Endo yesterday 1/6 and I got the results of my TSH 32.9 and Thyroglobulin is 6.8. Isn't thyroglobulin what tests to see if the cancer is still there? I feel so lost they said the radiation is still working but how? Why isn't the cancer gone? So now my Levo has increased to 200mg everyday. He said I will possibly have to do 1-2 more rounds of I131 and that means going off the meds and going completely hypo and the lovely LID.

Can someone offer me advice or some hope that I will beat this??????

RWBMG8668's picture
RWBMG8668
Posts: 9
Joined: Jan 2010

Your post brought tears to my eyes about your daughter asking you questions. My son just turned 5 Dec 29th and we had a sinilar conversation. He asked if I could die from cancer and when I told him that is a possibility he started crying and saying then he won't have a Daddy and would he have a new Daddy! I wanted to tell him everything was going to be ok and that nothing was going to happen to me but I can't lie to hi either.

I was diagnosed on my son's first birthday so it has been four years that I have been dealing with this. I have follicular thyroid cancer that has spread to my lungs. I started a trial drug at Mayo a year and half ago because all other treatments had failed. The side effects have been severe at times but nothing as severe as going hypo. My hair (all of it) has turned from a dark brown to white/blonde. The good news is the medication is working at the moment.

In 2006 I went hypo 3 times in 12 months, it was the hardest thinng I have ever done in my life. I had two sugeries that year and two rounds of RAI.

You asked for some positive outlook and all I can tell you is this is "your" journey don't let anyone tell you how you are suppose to feel. The biggeest issue with this cancer that other cancer patients don't experiance is the "rapid" change in hormones that your body needs to survive. I can tell you that 95% of thyroid cancer patients are easily treatble. I can tell you that they are doing amazing things with the medication that I am taking and it was just approved for renal cancer. Once they get your TSH level in check you "WIL" start feeling better. You are "NOT" losing your mind. I have this great article on my home computer about the emotional ups and downs for patients and care givers that I feel explains it the best if you would like it let me know.

I can tell you this has changed my life! In many ways for the better. I cheerish the little things more in life. I don't miss opportunities to do things with my son, family and friends. I don't get upset about being stuck in traffic or the house isn't cleaned. I try to live a life with no regrets.

My journey is one that I will be traveling for the rest of my life, that is what the doctors have told me. I will probably be on some type of experimental medication the rest of my life. I have been told that I have anywhere from a year to several years depending on how things go. I plan on being around a lot longer than that!! I pray that you continue to live a awesome and wonderful life, that is my prayer for you. Trust in God and believe me if you are a religous person your faith will be tested. Surround yourself with supportive people and those who understand and the ones that don't well don't waste to much time tryign to figure them out or explain things to them.

I wish you the best in all of this.

Joel

BellsAngel69
Posts: 102
Joined: Dec 2009

So I guess we're all members then, aren't we? I was given the same line, well, if you're gonna get cancer, thyroid or skin cancer are the best because they're so curable/treatable. Well, six years and on my second reocurrence, I'd like to kick his teeth in. I guess their idea is to give you hope. HOwever, unlike other cancers, they can both come back. I'll never be cancer free. Of course I didn't really come to except this until now.

I have an 18 year old daughter in college and a 16 year old son in high school, and a husband I've been married to for 21 years. I'm not backing down or bowing, but with a possible metastisis to my liver, I'm looking hell in the eyes right now and staring it down. I plan on being around for a long time.

My endo said to me today, with two metastasis in six years, you may have to think of this as something that could shorten your life. WTF is that? Jesus and a gun!!! Like I should fold up and go crawl in a hole and slowly die? I don't think so. I'll do whatever it takes to beat this bioch, no matter how many times she rears her ugly head.

In the words of my favorite band Fuel and Carl Bell: I WON'T BACK DOWN, I WILL NOT BOW!!

WILL NOT!!! So take that you thyroid biotch!!!

tonesgurl
Posts: 42
Joined: Dec 2009

BellsAngel69,

I heard that, giving up is not an option, especially when you've got kids.

Hang in there girl we are all here for eachother for help and support. I seem to be less knowledgable in this area than other's that's why I joined so I could learn from you all who have been going through it for a longer time than I have.

I will pray for you and your family!

Adrian

AlexMother
Posts: 6
Joined: Sep 2009

My Son was diagnosed Feb 2009 after also finding a lump on the right side of his neck. His ENT sent him for multiple test one of which was a CT with contrast. After a needle biopsy that was inconclusive we went for a surgical biopsy this is when we discovered he had Papillary Carcinoma we were also told at the same sit down that this is the cancer to have if you have one.... I too hate this comment and the false hope it gives the person who faces a lifetime of unknown. My son's surgery was a modified radical neck dissection with total thyroidectomy. His surgery lasted over 5 hrs which was only to be 3 at best. The amount of desease my son had and the fact that all the cancer in his upper chest area did not show up on the Pet/ct that was done just prior to surgery?? This is still unknown why. It was complicated and my son lost the use of the right side of his tongue (this was never discussed as a risk at the consultation prior to surgery) all who was involved was confused as to why this happened. My son's ENT told us he would be taking care of Alex from this point on however, I did find that most patients are sent to the Endocrinologist. If we had been I think my son's Radiation treatment would have been different. He was given radiation 7 wks after his CT with contrast and the recommended is 3mo. after any iodine contrast test due to the stunning effect the cells can not uptake due to they are already full of the iodine from the previous test. Dr also told us he was good all was good. However 5 mo. later another lump on my son's neck and this time the cancer was back his current surgeon just wanted to do a total radical neck dissection which my son at the young age of 21 wanted to keep his muscle and nerves so we went for a second opinion. 2nd surgeon saved all but found presistant desease. my son had is 2nd modified radical neck dissection surgery Nov 2009 and is still having a hard time with recovery this go around. Damage to the accessory nerve has caused pain on a daily basis. We were told at this point there is no cure for my son due to the amount that was spread through the lymph system that our goal now is to control it. This being the best cancer to have NOT in my book at all!!! I want my son to have his life back and be able to plan a future instead of living in limbo. He is going in for radiation again they will be hitting him with as much as his body can take at one time?? His chance of having a family after this is extreamely small and since it has not been a year since his last radiation he can not donate to the sperm bank. All this is hard for such a young person to take and it has shown this last go around on his emotional well being. We continue to look to the goal and do what we can to get there. My son just wants to be 21 again and live like he is. It makes me sad all the young people going through such a horific experience before they even have a chance to live life with no worries!

tonesgurl
Posts: 42
Joined: Dec 2009

AlexMother,

I am astonished at this! I know there is a chance for this cancer to return but your son was never out of the woods in the first place, as I am not either. Though I have not had as difficult a time as your son I can relate to alot of it.

I had a TSH level of almost 33. and a thyroglobulin of almost 7. (I cannot remember the exact numbers right now). I hear that the thyroglobulin is supposed to be undetectable after RAI and TT but mine is not. I know other's have had much higher numbers but I cannot get a definite answer on why mine is still up there instead of undetectable.
Since my last appointment my Levothyroxin has been increased to 200mg.

I am still fighting thyroid cancer only to be diagnosed with Degenerative Disc/Joint Disease in my back with a protrusion at L4/L5. I was told that it was both good and bad, good in the fact that it wasn't bad enough to be referred to a Neurosurgeon but bad in the fact that all we can do is pain management! I was like hearing, "At least it's only Thyroid Cancer." So just another thing to deal with on top of the cancer.

I really feel for your son with all he's had to go through and being so young still. I was diagnosed at 36 and already have my family, four daughters ages 20, 17, 10, and 7. I have been married to my high school sweetheart for 11 years now. It has been a very hard road so far and I trully could not get through it without my support system! I am sure you are that and more for your son, as us mother's have many roles ;)

Please let me know how he is doing in the weeks and months to come. We are all here for eachother.

Adrian

tonesgurl
Posts: 42
Joined: Dec 2009

AlexMother,

I am astonished at this! I know there is a chance for this cancer to return but your son was never out of the woods in the first place, as I am not either. Though I have not had as difficult a time as your son I can relate to alot of it.

I had a TSH level of almost 33. and a thyroglobulin of almost 7. (I cannot remember the exact numbers right now). I hear that the thyroglobulin is supposed to be undetectable after RAI and TT but mine is not. I know other's have had much higher numbers but I cannot get a definite answer on why mine is still up there instead of undetectable.
Since my last appointment my Levothyroxin has been increased to 200mg.

I am still fighting thyroid cancer only to be diagnosed with Degenerative Disc/Joint Disease in my back with a protrusion at L4/L5. I was told that it was both good and bad, good in the fact that it wasn't bad enough to be referred to a Neurosurgeon but bad in the fact that all we can do is pain management! I was like hearing, "At least it's only Thyroid Cancer." So just another thing to deal with on top of the cancer.

I really feel for your son with all he's had to go through and being so young still. I was diagnosed at 36 and already have my family, four daughters ages 20, 17, 10, and 7. I have been married to my high school sweetheart for 11 years now. It has been a very hard road so far and I trully could not get through it without my support system! I am sure you are that and more for your son, as us mother's have many roles ;)

Please let me know how he is doing in the weeks and months to come. We are all here for eachother.

Adrian

AlexMother
Posts: 6
Joined: Sep 2009

Adrian, So sorry to hear you have but another medical condition to deal with. You are to young as well to have to put all aside to go through such a terrible ordeal. It is so good to read that you have a great support system. I know that it can make all the difference at times. And yes as mothers we have so many roles and the one I keep stuggling with is the "fix it mom" because in most cases we as mom's can fix just about anything you imagine your child to go through but, Cancer never entered my mind as my son was growing up and now I can't get it out. I think it would be easier if I could be the one I would have control then and not watch my son suffer. It has been hard to get him to see the positive this go around. What has made the difference for you with all you have in front of you. He is just so negative about his treatment since the first radiation treatment or surgery didn't work how do you explain? what are the words that would help you? I so appreciate your words... Take care and thank you for listening and sharing your story. Mish

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