Just Diagnosed - Scared

Hi All,

Just found out after a total thyroidectomy, preceeded by 2 negative FNAs and 1 lobectomy, that I have follicular thyroid cancer. The nodule was on my left thyroid lobe around 6 cm big. On the bright side, the surgery went very well and i am recovering well. I will soon be meeting with an endocrinologist to discuss my treatment plan. I am somewhat terrified because the doctor said there are some small insular strains in the cancer eventhough my surgeon said that a lot of people with this condition live for decades and that I should have a positive perspective. For what its worth, I am a 30 year old male who is in good health otherwise.  

Any thoughts on my condition, and words of wisdom as I begin my treatment regimen.

Thank you all. This is a terrific community.

Hi ThinkPositive 2050 --

Being scared is very natural, for almost everyone equates the word Cancer with Death.  However, it is amazing, but very very few people ever die the next day, week, month or even year after hearing that word!!  How many people do you know who died?  I'll bet that you wouldn't even know of 5! 

Now that you've had surgery you will have to recover from the physical effects of that, but in terms of the changes in you from the moment you were told to now I'll bet there isn't much difference.  I had a backache which wouldn't go away and after 2 months of zillions of tests I was diagnosed with multiple myeloma, a rare bone marrow cancer with a life expectancy of 2 years from the point of diagnosis.  Well, its now 5 years later and although the journey has been very difficult at times, I am currently feeling better that I have felt in 5 years.  So who can tell??  Each of us is an individual and there is no 'one cure fixes all' with cancer so the outlook really is not predictable. 

Though you are not asking for advice, I would just like to say.....*try to be as positive as possible and use this as an opportunity to 'wake up' to LIFE.  So often we have heard the platitudes of 'stop and smell the roses', but rarely do we listen.  NOW is the time to listen and DO IT!  Think of your diagnosis as a  *GIFT!  Yes a gift, for you can now take the time to look at what youve achieved in the last 30 years and think about what you want to do -- don't waste a minute!!  Who knows, you may not have minutes to waste, but even if you do, make the most of each and every day.  When you wake up in the morning be  * glad to be alive and try to do something that will make a difference both to yourself and to others -- its amazing how much helping others helps yourself.  And its so EASY -- just an unexpected * SMILE at someone (friend or stranger) brings joy and light to you both -- you'd be amazed!!  So small, but if you're feeling up to it you can do so very much more, like helping someone to cross the street or carry their groceries or ... a  million other  things -- you are only limited by your own imagination.  So, though you are only 30 get your life in order, be grateful for the warning you have and use it to your own and your family's advantage so that no matter what you make their lives the best they can be too.  Your poor parents must also be very scared  and will be wanting to ease things for you as best they can -- try to think of something concrete that they can do so that they too will have purpose and direction and be focused on making you happy. Are they computer literate? Can they help you to search for info related to your cancer?  I actually found the drug that I am now on by searching the net daily for months!!  Then I approached my oncologist and told him about it and low and behold he was able to get it directly from the pharmaceutical company on compassionate grounds gratis basis!!  It would be something that they could possibly do, a 'what's new search' just for you!! 

I'm rambling on, but I did not want you to be so scared.  It would be extremely unlikely that you would face death soon -- and probably not for decades!! But use this experience to make sure that you make the most of the life you do have -- you sound like a wonderful young person who can take hold and run with what you have, so do it and ENJOY!!  Best wishes to you always, Cath

On 7/7/2008 thinkpositive2050 wrote:

Hi All,

Just found out after a total thyroidectomy, preceeded by 2 negative FNAs and 1 lobectomy, that I have follicular thyroid cancer. The nodule was on my left thyroid lobe around 6 cm big. On the bright side, the surgery went very well and i am recovering well. I will soon be meeting with an endocrinologist to discuss my treatment plan. I am somewhat terrified because the doctor said there are some small insular strains in the cancer eventhough my surgeon said that a lot of people with this condition live for decades and that I should have a positive perspective. For what its worth, I am a 30 year old male who is in good health otherwise.  

Any thoughts on my condition, and words of wisdom as I begin my treatment regimen.

Thank you all. This is a terrific community.

Hi thinkpositive2050 sorry you have cancer Im 56 and  have prostrate cancer I have  heard there is a 95% cure rate with this type of cancer your doctor will tell you to get  a yearly chest x-ray as well as thyroglobulin levels.

Sorry but I have to waffle on here a little bit Thyroglobulin is not useful as a screen for initial diagnosis of thyroid cancer but is quite useful in follow up of well differentiated carcinoma but as in your case you had a total thyroidectomy  A high serum thyroglobulin level that had previously been low following total thyroidectomy especially if gradually increased with TSH stimulation is virtually indicative of recurrence.

In other words there is a very very slim chance you could get the cancer back A value of greater than 10 ng/ml is often associated with recurrence even if an iodine scan is negative.

Sorry to put you through that. What Im going to tell you is there is always cancer in our bodies our immune system is always fighting it I want to tell you what Im doing for cancer. Building up my immune system so it can fight cancer by avoid eating or drinking any thing that has sugar in it. please do take an antioxidants I take 1000 mg capsules of BI-O Vitamin C. The BI-O put more vitamin C into the cell.  I take two at ever meal time. that 6000mg of vitamin C a day. but Iv been told even this amount is to little  I all so eat the fruit Pawpaw one quarter Pawpaw ever six hours. There are  other thing you can take to fights cancer this is just the cheapest and the best I can thing of for me  Please (when you can) look up on the net  antioxidants and cancer or  look up Pawpaw and cancer do you know you can take antioxidants if your on Chemo the antioxidants  help  the chemo fight cancer better even if your not on chemo.  Antioxidants  will help stop the cancer with Distant metastasis (cancer cells going else were ) take care and I hope this helps  Ray  

Thanks cath and ray. It is very comforting to read your responses. I have promised myself that I will stay positive and will take it one day at a time from now on. I now hug my wife and my 4-yr old that much longer and stronger everyday. I have started taking lots of Vitamin C, Green Tea and blueberries. I am still overwhelmed by how quickly things have happened in the last week or so. I have somany questions, but cant seem to frame them now.

Thanks once again for responding. I hope you can come back and answer additional questions; I am sure I will have many for you.

First thing you have to do is breath!  Read everything and anything you can find so you can ask as many questions as possible.  The more you know, the more you can help guide your treatment.  Have you asked where these insular strains were found and how many?  It's possible that they were confined to the neck area like a lot of us and/or there are very few.  Insist that your doctor tells you everything and answers all of your questions to your satisfaction. 

I agree with everything said so far on the board.  I truely believe that attitude governs your health and recovery.  After I fell totally apart when I first found out it could be cancer, I pulled myself together, studied everything I could get my hands on and asked hundreds of questions.  I went through TT, RAI, LID etc. with no side effects and feeling pretty good for what I was going through.  Because of my study I became my endo's first patient to use Thyrogen.  It was extremely successful for both of us.

Remember first of all...thyroid cancer is the least "deadly" of all cancers.  Very few patients ever die of thyroid cancer.  It is also very slow moving.  They estimated I had the nodule for 8-10 years.  It never metastasized and only spread to two lymph nodes. 

So try your best to stay positive.  Let yourself grieve for only a moment and then move forward.  All of the procedures will soon be over and you'll enjoy life even more than you did before.

Please ask away on this message board.  I know it was a huge help for me!

Donna

I agree with Cath,

 The single most predictive thing for a full recovery is your attitude on the inside.  It is NOT enough to "say" that you're thinking positively.  You actually have to "think" positively.  When no one else is around, are you telling yourself that life is incredible and that you are thankful for everything you have?

I agree that you should read everything you can on the topic of cancer, but be careful when it comes to overly medical books.  Remember that statistics do not apply to individuals, only groups of people.  You're not a group of people.  If any one person in the history of the world has beaten your cancer, than you can too.

 Wishing you health and more importantly, peace of mind.

Donald A. Wilhelm, author

This Time's a Charm; Lessons of a Four-Time Cancer Survivor

Thanks Donald and Donna. Donald, I am so happy that you have made it through 4 cancers. I pray that you wont have to go through it again.

Donna, I cant make out from the pathology report what % of the tumour was insular. It simply says follicular with insular features. I have asked my endocrinologist to pursue that line of inquiry.

I got some additional information on my condition. Apparently there was vascular invasion, but luckily the tumour was contained within the thyroid and hasnt spread to other structures. During my TT, the surgeon did not note any abnormal lymph nodes and the tumour was confined only to the left lobe. Finally, the size of the tumour is around 4.5 cm and not 6 as I mentioned in my 1st post. Is it true that tumour size < 5 cm is a good sign.

As of now, the plan is to do RAI,followed by WBS and PET-Scan to make sure that there arent any residual cells.

Donna, you are so right. I keep reminding myself of the great things in my life, but sometimes pangs of self-pity and worry hit me and I become a wreck for a while. But, then I talk to my wife or my mom and then I will myself to fight this again. I have the most trouble when I try to sleep.I am hoping I will get better at the mental aspect as I go through therapy. 

 Thanks again everyone.

-ThinkPositive.

On 7/8/2008 thinkpositive2050 wrote:

Thanks cath and ray. It is very comforting to read your responses. I have promised myself that I will stay positive and will take it one day at a time from now on. I now hug my wife and my 4-yr old that much longer and stronger everyday. I have started taking lots of Vitamin C, Green Tea and blueberries. I am still overwhelmed by how quickly things have happened in the last week or so. I have somany questions, but cant seem to frame them now.

Thanks once again for responding. I hope you can come back and answer additional questions; I am sure I will have many for you.

thats ok glad to help