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Your Story Please.... For My 13 year old Daughter

caityc
Posts: 4
Joined: May 2009

Hello all! I am writing regarding my 13 year old daugher. She has not been diagnosed yet. I'm hoping perhaps some of you will share your diagnosis story. I will tell you her story so far....

In February 09 I took my daughter in for a routine physical. An enlarged lymph node was found on the right side of her neck, under her jaw. Several smaller ones were felt as well. The Dr. told us to follow up with her new doc in 2 weeks (we were moving the following week from CA to AZ). Once we were settled and started our new insurance (hubby switched jobs) I took her to a new primary doc. Long story short, she ordered a cat scan which found one lymph node on the right side 1.3 centimeters, one on her left side 1.4 centimeters, among multiple others 10mm or less on both sides. It also found a probable 5mm nodule on her thyroid. A follow up ultrasound of the thyroid revealed one 7mm nodule on her left lobe, and one 8mm nodule on her right lobe.

The one lymph node on her right is hard, painless, and has actually grown a bit bigger in the last 2 1/2 months. She has NO symptoms. She does not have allergys, is not sick at all, has taken antibiotics (doc found the beginning stages of a sinus infection the beginning of April). Her thyroid levels/functions are all normal (blood taken last week) and her CBC that was done back in Feb was normal as well.

I've done my research and discovered that multiple thyroid nodules have less tendency to be cancerous. But I find it interesting that she has "matching" thyroid nodules and enlarged lymph nodes on both side.

We saw an endocrinologist today that doesn't seem to be too concerned. However he does not blame me for being concerned and is going to biopsy the nodules.

I'm just hoping that maybe some of you can tell me a bit about yourself.... How was it you were diagnosed (did you have symptoms?), did you have more than one thyroid tumor, did is spread to your lymph nodes, etc?

I am such a concerned Mommy and would really appreciate anything you are willing to share with me.

Thank you!!!

Caity

usljh10
Posts: 85
Joined: Apr 2009

I'm a papillary cancer survivor. Jan 2008 went to my GP because my joints were hurting. I'm 48 years old just figured it to be normal stuff, you know getting older thing.No other symptons. He felt of my neck. Ordered a ultra sound, blood test. I had a nodule in my right lobe 1.8cm and 1 in my left .2cm blood work was fine. He refered me to a surgent. Surgent did a needle biopsy in his office. It came back inconclusive. I was'nt having any trouble with my throat. I asked him if it were him what would he do? He said he would take out the right lobe because of size.He also said we could leave it for 6 months and check it. I went with my gut feeling, had surgery March 3, 2008. March 5, 2008, he calls me at home and tells me I have cancer. I was alone. The big C...Blew me away. We set up another day to take complete thyroid out. After that he refers me to a Cancer doctor. 6 WKS later, I do the Low Iodine diet (LID) and Radio active Iodine (RAI). He refers me too a ENDO. Set me up on Synthroid and take one a day for the rest of my life. I have had my Meds changed 6 times this year. I'm going through memopause at the same time so getting me regulated on hormone pills has been a trip. Today a year later I started my LID and will take Thyrogen shots next week and do a whole body scan to see if I if I have cancer again. I'm OK...
Hang in there! I hope your Daughter gets good news back.

caityc
Posts: 4
Joined: May 2009

for your reply. You're the second one on this board that I have read that had 2 nodules on the thyroid. Hmmmm....

I am so sorry for all that you have gone thru. Good luck with your scan next week.

I am just so worried for my little girl. I keep up the positive attitude with her (because she has such a great attitude) but inside all I want to do is hug her. :( She even told me if it is cancer it's OK because she knows her prognosis is good. What a kid!

Take care and best wishes!

Caity

Thankfulandblessed
Posts: 10
Joined: Apr 2009

I hope all goes well for you, I have been through those things also. I just wanted to share my story, which may or may not be helpful. My total body scan did not pick up my recurrence of my thyroid cancer, I had a large tumor the size of an egg and also a smaller one. I was told that sometimes thyroid cancer does not pick up iodine when it spreads and metastasizes and isn't always seen on the total body scan. We could feel a lump and ordered an ultrasound.
It was seen with an ultrasound, which I highly recommend for anyone who has had cancer in the neck area, at least yearly or more. Some of the fancy, very expensive tests miss things.
I also had a thyroglobulin level done every 6 months but found out after doing that for almost 3 years that it is not a valid test because I had antibodies to the thyroid. The doc I see now said he never would have ordered that test without checking for the antibodies first, and if I had them he would never order it again, as it is not reliable then.
Some doctors know more than others. The tumors were seen by PET scan. Insurance doesn't like the cost of PET scan but paid for it because the tumor was not seen with other tests.
I ended up having a modified radical neck dissection in April. They say I have a 20 percent chance of it staying away. I am staying positive and hope you will too. Make sure to get your questions answered and if you don't get them answered keep looking to others.
Best of luck to you.

Thankfulandblessed
Posts: 10
Joined: Apr 2009

I hope all goes well for you, I have been through those things also. I just wanted to share my story, which may or may not be helpful. My total body scan did not pick up my recurrence of my thyroid cancer, I had a large tumor the size of an egg and also a smaller one. I was told that sometimes thyroid cancer does not pick up iodine when it spreads and metastasizes and isn't always seen on the total body scan. We could feel a lump and ordered an ultrasound.
It was seen with an ultrasound, which I highly recommend for anyone who has had cancer in the neck area, at least yearly or more. Some of the fancy, very expensive tests miss things.
I also had a thyroglobulin level done every 6 months but found out after doing that for almost 3 years that it is not a valid test because I had antibodies to the thyroid. The doc I see now said he never would have ordered that test without checking for the antibodies first, and if I had them he would never order it again, as it is not reliable then.
Some doctors know more than others. The tumors were seen by PET scan. Insurance doesn't like the cost of PET scan but paid for it because the tumor was not seen with other tests.
I ended up having a modified radical neck dissection in April. They say I have a 20 percent chance of it staying away. I am staying positive and hope you will too. Make sure to get your questions answered and if you don't get them answered keep looking to others.
Best of luck to you.

Thankfulandblessed
Posts: 10
Joined: Apr 2009

I hope all goes well for you, I have been through those things also. I just wanted to share my story, which may or may not be helpful. My total body scan did not pick up my recurrence of my thyroid cancer, I had a large tumor the size of an egg and also a smaller one. I was told that sometimes thyroid cancer does not pick up iodine when it spreads and metastasizes and isn't always seen on the total body scan. We could feel a lump and ordered an ultrasound.
It was seen with an ultrasound, which I highly recommend for anyone who has had cancer in the neck area, at least yearly or more. Some of the fancy, very expensive tests miss things.
I also had a thyroglobulin level done every 6 months but found out after doing that for almost 3 years that it is not a valid test because I had antibodies to the thyroid. The doc I see now said he never would have ordered that test without checking for the antibodies first, and if I had them he would never order it again, as it is not reliable then.
Some doctors know more than others. The tumors were seen by PET scan. Insurance doesn't like the cost of PET scan but paid for it because the tumor was not seen with other tests.
I ended up having a modified radical neck dissection in April. They say I have a 20 percent chance of it staying away. I am staying positive and hope you will too. Make sure to get your questions answered and if you don't get them answered keep looking to others.
Best of luck to you.

caityc
Posts: 4
Joined: May 2009

for sharing your story with me. I am being very persistent with all of this. The endo said if it were up to him only he would wait four months then ultrasound it again. I told him I would feel much more comfortable if he did the biopsy now (because of the enlarged lymph nodes as well) so he agreed.

usljh10
Posts: 85
Joined: Apr 2009

I agree with you. I would go ahead and see what it is,with the nodule changing in size.???Your little girl sounds very brave. I know it's easier said than done, but be stong. With her age and multi-nodules it makes me think it's benign.I know you can't help but worry. We will keep her & you in our prayers . Let us know how it goes....

caityc
Posts: 4
Joined: May 2009

your support. It's never a situation you think you will be in.... The lymph node has gotten a little bigger in the last 2 1/2 months. As far as the thyroid nodule I'm not sure since we only found out about it less than 2 weeks ago.

She is very nervous about her biopsy tomorrow, but she also agreed she would rather have it biopsied instead of "watching" it for a few months. We have gone over the procedure together a few times, so she is feeling a little better about it.

I will definitely post when we get the results next week. If anyone else wants to share their story with me I would really appreciate it!

Thanks to everyone!

Caity

flygirlc
Posts: 31
Joined: Mar 2009

Hi Caity, I hope by now your daughter's biopsy is done and went well. I was diagnosed just over a year ago. My ENT felt a little lump and did a needle biopsy/fine needle aspiration on the spot. I got the results 6 days later, positive for papillary carcinoma. I had also had a cat scan the day after the biopsy which was inconclusive, so lucky for me my dr got just the right spot! We knew going in that it was cancer for sure so we decided to do a total thyroidectomy, which turned out to be a good decision because I had several spots and it was no longer encapsulated and had spread to the thyroid tissue itself. I also had 4 out of the 20 lymph nodes he removed that were positive for pap carc. But it had not metastasized so that was good. I had to do 2 months of external beam radiation therapy and then the RAI, but I just had my firsat clean scan in January so I am grateful that my dr's were knowledgeable and agressive in treatment and not this is behind me and I really don't have to worry about it any more. I think you're taking a good approach in just going ahead with the biopsy instead of waiting a couple months. It's comforting that they are not too concerned about it, but the sooner you know the better. And no 13 year old (let alone her parents) needs to have something like that hanging over her head for any length of time.
I know someone reccommended thyca.org, which is a GREAT site, there's also a support group on myspace. Hopefully you won't need this info, though.
Please remember that thyroid cancer is very trreatable and the younger they catch it the better the prognosis. Btw, one of the reasons I mentioned the mmyspace group is that, worst case scenario, finding people around my age going through the same thing was the best and most helpful thing that could have happened to me. I can't begin to tell you how much it helped me. So I hope your daughter doesn't need it, but it's there.
Best of luck to her and you and your family!

jcvolt
Posts: 69
Joined: Mar 2009

I had a one cm nodule on my thyroid disgnosed by ultrasound, they generally biopsy anything over a cm. Six months later it had grown to 1.3 cm. They sent me for a needle biopsy. It really hurt but they said don't worry 99 times out of 100 it is negative. I went for a followup 2 weeks later and my doctor told me I was very lucky they had caught this early, I had papillary thyroid cancer and here was the surgeons number, get my thyroid out and call when its done, good luck. (nice huh) I wanted to get a partial thyroidectomy but I let my family bully me into a total. The surgeon actually did a "near total" leaving tissue on the vocal nerves to avoid vocal paralysis he was thinking they could get that with the RAI. After surgery my Endo did not want me to start taking thyroid meds and did not tell me why. I crashed a few days later from calcium loss and was put back in the hospital. I started taking my old thyroid meds despite my doctors orders because my blood pressure got too low and I didn't want another trip to the ER. I found out about Radioactive Iodine and decided I was not going to do it after hearing all the damage it causes and the recurrences that happen afterward. My endo has me on 100mg levothyroxine right now but I take extra about 125 to stop my hair from falling out and enable me to work. She doesn't want to raise my dose until June for some reason but I have enough extra to last until then.

usljh10
Posts: 85
Joined: Apr 2009

did'nt hurt at all! Just a little sting and it's over. It was like getting a shot you take in the arm. You can get on thyca.com or Mayo clinic and they will tell you all about the needle biopsy.

yerdua
Posts: 4
Joined: May 2009

I have had low thyroid function for a few years, I noticed something in my throat anytime I put my arms over my head. I was diagnosed with a goiter, and underactive thyroid. I went for an ultra sound and found I also had 5 calsified nodules on my thyriod. They watched them for six months then send me for thin needle biopsies. The biopsies were uncomfortable but the results came back negative. 18 months passed and my doctor wanted me to have another biopsy. I asked if there was the possibility of having my thyroid removed. At this point, I was walking around feeling like someone was trying to constantly choke me. Many days I would come home in tears. I had a hard time swallowing and sleeping. He said it would probably be a good idea. Not sure why he never gave me that option. I saw a surgeon in December and she said she would perform the surgery based on the size of my Thyriod because of the goiter and almost non-function. I had a full thyroidectomy. A week after my surgery at my follow up with the surgeon she told it was good I had my thyroid removed because they found some abnormal cells (pre-cancerous cells), and she was having the tissue examined by another lab. I was to call back in a week and a half for the results. I was going to call at lunch, but she called me in the morning and told me that the test came back positive for Cancer. On Friday I was given the RAI treatment at a relatively small dose of 100 (not sure of the measurement name). I not sure if another biopsy would have found this cancer, but I'm glad I asked to have my thyroid removed. I was on synthriod for the rest of my life anyhow and I didn't like that I had these nodules in my throat that could turn cancerous at any time. I haven't had my follow-up scan yet, but everything seemed to be centralized in my throat from the full body scan. You have to do what makes you comfortable. Get a second or third opinon. Ask around and you will find many people in your area that have thyroid problems, ask if they like their doctors. If you find someone who has had surgery ask if they liked their surgeon.

flygirlc
Posts: 31
Joined: Mar 2009

I know I feel better on 112 mcg of levo/synthroid than the 100 dose I'm currently on, but the higher dose dropped my levels too low and my dr said that long term effects could be serious, like osteoperosis, so please be careful about adjusting your own doasge. There are several different synthetic thyroid hormones and other options like armourthyroid and they all have slightly different levels of T4 and T3 as well as different inert ingredients, which can affect your absorption rate which can in turn be reponsible for some of your side effects. Right now I'm getting my levels checked and trying different brands to try and find a good balance between healthy TSH and T4 levels and feeling good. Best of luck to you.

jcvolt
Posts: 69
Joined: Mar 2009

I didn't know there was a 112 dose. I started taking the extra 1/4 pill because my hair was still falling out. Wonder If I should try 112.

michelledillon
Posts: 2
Joined: May 2009

I am a nurse as well as a papillary thyroid cancer survivor. I wanted to add to the previous caution of adjusting your own thyroid medication. Excessively high doses of thyroid medication can cause heart problems and other potentially life threatening side effects. There is a condition called thyroid storm that is life threatening. Please work closely with your Dr. to adjust your medication to find a dose/medication that works best for you. Best wishes!

michelledillon
Posts: 2
Joined: May 2009

I was told I had high end of normal TSH levels and started on low dose levothyroxine. About a year later, I had a CT scan for cervical (neck) spine pain. It noted an "incidental finding of a slightly asymetrical thyroid". The Dr who ordered the CT never mentioned that as she was looking at my spine. I just noticed it in my report. Fortunately, being a nurse I knew to wonder about it. I mentioned it at a Dr appt (different dr) about 3 months later. He referred me to an endocrinologist who ordered an ultrasound. I had a couple of right nodules. The largest on U/S noted to be 1.2 cm. Usually, a biopsy is done if size greater than 1 cm so mine barely qualified for biopsy. The biopsy was inconclusive but did have some hurthle cell and atypical follicular features. I was referred to a surgeon for consult. He said due to small size we could watch it and rebiopsy in 3 months, but he felt I should have a total thyroidectomy due to showing thyroiditis and inconclusive biopsy. Fortunately, I went with that suggestion. When he got into thyroid, he could see it was cancer and was already spreading locally into my thyroid tissue and muscle. The U/S did not show that. My dr said good chance I would not have survived if had waited. My symptoms were extreme fatigue and lump in throat feeling. The fatigue symptom is complicated by having autoimmune disorder which causes fatigue. Although, the fatigue has had improvement since cancer removed. I was told previously that the lump in throat feeling was reflux, hiatal hernia, and/or anxiety. So, my cancer was overlooked awhile. I had to have radiation over Christmas as they could not get all the cancer surgically. I see my endocrinologist next week to set a date to go back off my throid medication for 4 weeks so I can be rescanned for any cancer. I feel optomistic that it will be gone. It is good to be assertive if you feel something is not right in your body. I had a wonderful surgeon who probably saved my life. Good luck with your daughter!!

cshaunnessey
Posts: 2
Joined: Oct 2010

Dear Caity and daughter,

I am new to the CSN site and just came across your posting. I had a very similar situation to your daughter. I was 15 when my general practitioner felt the nodule on my thyroid during a routine physical. I was diagnosed with cancer and, in all honesty, have been dealing with some ups and downs throughout the years. That being said, I live a full and 'normal' life. I truly hope that everything has worked out for you and please let your daughter know that there are so many of us out here with stories like hers and we are all here to help.

Caitlin

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