early on in the process...

kejpuzzler · March 2011

Hi,

I am a 22 yo female recently diagnosed with metastatic papillary carcinoma. I has a TT and lymph node dissection at the beginning of january (two incisions), and 17 of the 20 lymph nodes they removed tested positive for tumor. The tumor on my thyroid was pretty small and not really palpable.

My PCP discovered this during an annual physical and told me to get an ultrasound after she felt a swollen lymph node on the right side of my neck. I had a CT with contrast and ultrasound at my local hospital, both of which were inconclusive to the doctors there. I was told it would be "exceedingly rare" for someone my age to have thyroid cancer but the ER doc suggested I make an appointment with an ENT for a biopsy.

I never got the biopsy. At that point I sent the scans to my oncologist (I am a childhood cancer survivor of Stage IV Wilms tumor as well, surgery to remove my right kidney, 15 mo chemo and 2 wks abdominal radiation) so she could take a look. Sure enough, I got the call saying I had thyroid cancer a few days later.

I've healed pretty well from surgery except for some numbness in the area which I've been told might not go away. I'm no longer on calcium anymore. I'm still extra fatigued which doesn't make sense to me since I thought being on synthroid makes you somewhat hyperthyroid. Now I'm waiting to get the all clear to start withdrawal, and the diet and RAI. Because of the CT scan, my iodine level was really high. I've been told I may not get RAI until as late as may.

I'm a graduate student and this diagnosis required me to switch graduate programs, move back home, and currently I'm not working. The hardest thing for me is keeping my life on hold. The treatment doesn't scare me that much, given my prior experience with cancer. Still, I am concerned by the recurrence rate which I'm reading is 15-30%. Is that high relative to other cancers?

I'm wondering if anyone has a similar story/diagnosis and is a little farther out than I am now. Are you still fatigued? Has the cancer recurred? Any advice/things you would do differently at this stage? Questions I should be asking my endo to fill in the blanks? I hate how doctors only tell you little bits of info at a time.

nasher · March 2011

1) it can take months for
1) it can take months for them to figure out what the right dose of synthroid is.
2) do they have you on synthroid or cytomel(Liothyronine) normaly they put you on this if they plan on doing RAI in the future.
3) if they plan on doing RAI they normaly keep you Hypo till the RAI.

from what I have learned from other cancer patients is that yes the radiation for thyroid cancer will probably be nothing compaired to chemo and the like.

i posted my first year form diagnosis on this board

http://csn.cancer.org/node/204377

My experiance with thyroid cancer nov 2009-oct 2010 (LONG)

a few others have also put there stories online as well

please ask any and every question that you have

yes i have fatigue now and then but its not too bad
all my scans have been clean so far but it can reocoure

read and reserch everything figure out how to read your labs and get copies of them

ask thousands of questions and let the Endo doc know you want to know about it all.

keep us informed and ask the questions

sunnyaz · March 2011

Early in the Process
Hi Kejpuzzler,

Sorry to hear you are going through this. My dx was also Papillary Thyroid cancer in October of 2009. In May 2010 I had metastasis to the Lymph nodes and a right neck dissection in June. In November 2010 it was discovered that the ENT didn't get the right nodes discovered on the Sonogram and had to go back for a redo neck dissection with a different and more experienced surgeon. Long and involved story but I am glad I found my new surgeon who is an Endocrinologist specializing in Oncology of the Endocrine system.

I had two RAI treatments. One after my second surgery and another after my third. First dose was 83 mCi's and second was 178 mCi's (close to the max dose). After my second surgery my main Endocrinologist (the one who is not a surgeon) did a B-RAF mutation test. This mutation makes this cancer more aggressive and more difficult to treat. It's also more likely to have recurrence. You may want to see about this test if they still have tissue from your surgery.

Thyroid cancer is a mystery. Some say that it is mainly caused by Radiation exposure. It mostly affects women but men are not excluded as Nasher will attest. This may have been a result of your first cancer treatments. But, more and more people are being diagnosed with this type of cancer every day and researchers don't know why.

The Thyroid is an important gland. It controls so many functions and without it life is never the same. With the right dose of medication some day things will get to a more normal state for you as you adjust to life without your Thyroid. I take 175 mcg's of Synthroid daily but I currently weigh about 170 pounds. I gained fifty pounds before I convinced my PCP that something was wrong with my Thyroid. I have lost about fourteen of those fifty pounds; finally. I am getting more active again. As my weight moves back to normal I will probably need an adjustment to my medications.

You will need to get regular exercise (for physical and mental health), eat a healthy diet and keep follow up appointments with your doctor probably for the rest of your life. I will never be "out of the woods" so to speak because of the B-RAF mutation gene. I will have regular sonograms, blood work and scans for the rest of my life.

I am fifteen months post Thyroidectomy and I am still fatigued a bit and have difficulty making it through my days. Medication can only do so much. On the weekends I try to get in a good nap and lots of exercise. During the week I am away from home eleven hours a day with work and travel time. It's not easy. I work in the medical field and sometimes it's difficult to sympathize with patients that complain about the smallest issues. You want to shake them, share your story and tell them to get over it! That would be unethical of course, so I just smile and try my best to sympathize.

I still have numbness in the right side of my neck, right ear and along the jaw line on that side. I also have a "pins and needles" feeling in the chest area where the ENT surgeon made a mistake and accidentally cut my outer jugular vein while putting in a drain tube. I lost a lot of blood and there must have been a nerve that was damaged. I am getting used to the numbness however. I have come to accept that it may never heal. I have a large scar from slightly to the left side of my neck up to my right ear that I rub down with scar cream at least twice a day. My husband massages my neck a couple times a week to help with the healing process as well. It is healing slowly, but surely. I hope someday the scar will vanish and the feeling will come back. Nerve damage is a very slow healing process but it is possible from what I understand.

Keep us posted and know that we are here for you if you have questions or need to vent. I will keep you in my prayers along with the others on the boards. Together we can all get through this. We will survive and live to share with others our story and help find a cure for our cancer. I am walking in the Relay for Life to benefit the American Cancer Society on April 2nd in my home town. When you are feeling up to a challenge I would encourage you to join in on some of the events that they sponsor if you haven't already.

Sincerely,
Julie-SunnyAZ

kejpuzzler · March 2011

sunnyaz said:
Early in the Process
Hi Kejpuzzler,

Sorry to hear you are going through this. My dx was also Papillary Thyroid cancer in October of 2009. In May 2010 I had metastasis to the Lymph nodes and a right neck dissection in June. In November 2010 it was discovered that the ENT didn't get the right nodes discovered on the Sonogram and had to go back for a redo neck dissection with a different and more experienced surgeon. Long and involved story but I am glad I found my new surgeon who is an Endocrinologist specializing in Oncology of the Endocrine system.

I had two RAI treatments. One after my second surgery and another after my third. First dose was 83 mCi's and second was 178 mCi's (close to the max dose). After my second surgery my main Endocrinologist (the one who is not a surgeon) did a B-RAF mutation test. This mutation makes this cancer more aggressive and more difficult to treat. It's also more likely to have recurrence. You may want to see about this test if they still have tissue from your surgery.

Thyroid cancer is a mystery. Some say that it is mainly caused by Radiation exposure. It mostly affects women but men are not excluded as Nasher will attest. This may have been a result of your first cancer treatments. But, more and more people are being diagnosed with this type of cancer every day and researchers don't know why.

The Thyroid is an important gland. It controls so many functions and without it life is never the same. With the right dose of medication some day things will get to a more normal state for you as you adjust to life without your Thyroid. I take 175 mcg's of Synthroid daily but I currently weigh about 170 pounds. I gained fifty pounds before I convinced my PCP that something was wrong with my Thyroid. I have lost about fourteen of those fifty pounds; finally. I am getting more active again. As my weight moves back to normal I will probably need an adjustment to my medications.

You will need to get regular exercise (for physical and mental health), eat a healthy diet and keep follow up appointments with your doctor probably for the rest of your life. I will never be "out of the woods" so to speak because of the B-RAF mutation gene. I will have regular sonograms, blood work and scans for the rest of my life.

I am fifteen months post Thyroidectomy and I am still fatigued a bit and have difficulty making it through my days. Medication can only do so much. On the weekends I try to get in a good nap and lots of exercise. During the week I am away from home eleven hours a day with work and travel time. It's not easy. I work in the medical field and sometimes it's difficult to sympathize with patients that complain about the smallest issues. You want to shake them, share your story and tell them to get over it! That would be unethical of course, so I just smile and try my best to sympathize.

I still have numbness in the right side of my neck, right ear and along the jaw line on that side. I also have a "pins and needles" feeling in the chest area where the ENT surgeon made a mistake and accidentally cut my outer jugular vein while putting in a drain tube. I lost a lot of blood and there must have been a nerve that was damaged. I am getting used to the numbness however. I have come to accept that it may never heal. I have a large scar from slightly to the left side of my neck up to my right ear that I rub down with scar cream at least twice a day. My husband massages my neck a couple times a week to help with the healing process as well. It is healing slowly, but surely. I hope someday the scar will vanish and the feeling will come back. Nerve damage is a very slow healing process but it is possible from what I understand.

Keep us posted and know that we are here for you if you have questions or need to vent. I will keep you in my prayers along with the others on the boards. Together we can all get through this. We will survive and live to share with others our story and help find a cure for our cancer. I am walking in the Relay for Life to benefit the American Cancer Society on April 2nd in my home town. When you are feeling up to a challenge I would encourage you to join in on some of the events that they sponsor if you haven't already.

Sincerely,
Julie-SunnyAZ

thanks nasher and sunnyaz
Hello,

Thanks nasher and sunny AZ for such detailed responses. It's good to know other people have done this before. While I know the cancer I have this time around is a lot easier than the one I had as a child, now as a young adult I am more in the driver's seat when it comes to navigating my treatment. My parents are there and very supportive but I always want to know what's going on and what the next steps will be. Probably got that from a lifetime of dealing with medical stuff.

To answer some of your questions and provide further clarification, I am currently on 150 mg synthroid. I haven't had any major weight changes. In the months before I was diagnosed I gained 5-10 pounds (I'm currently about 130 lbs), but i figured that was due to the stress of grad school and a new job, lack of exercise and good diet. I was also very tired all the time, but again thought that had to do with my lifestyle. I was going to school full time and living/working 40 hrs/wk in a college dorm. Not sure if fatigue or weight gain were potential thyroid cancer symptoms, but they didn't seem out of the ordinary at the time. My thyroid function blood work was also normal in the days before I was diagnosed, which I also find strange. I don't think my prior radiation could have prompted this diagnosis as I was radiated to the abdomen rather than the head/neck.

I am being treated at Children's hospital boston where my oncologist for my childhood cancer is affiliated. My surgery was done by the chief of general surgery and he has expertise in cancer surgery. He made sure to ultrasound me for any more lymph nodes on the table before closing me up so I'm hoping it was a thorough job and we won't have to go in again. I've met with my endocrinologist once and corresponded with her numerous times over e-mail, she seems very good. They told me the numbness form surgery may be permanent because they had to divide some nerves to get at the thyroid/lymph nodes. My surgery was a little over 6 hours. They also told me I had "positive margins," so there are definitely cancer cells/thyroid tissue still in there. My scar is healing Ok but still pretty red. What cream do you use sunnyaz? I also didn't know about the B-Raf mutation, I'll ask about that.

Also sunny az, what were the side effects of your RAI, particularly when you had the high dose? I think I may be having somewhere around 150 mci, but I'm not positive (definitely over 100 mci though). They are letting me go home rather than stay in the hospital.

Thanks again,
kejpuzzler

sunnyaz · March 2011

kejpuzzler said:
thanks nasher and sunnyaz
Hello,

Thanks nasher and sunny AZ for such detailed responses. It's good to know other people have done this before. While I know the cancer I have this time around is a lot easier than the one I had as a child, now as a young adult I am more in the driver's seat when it comes to navigating my treatment. My parents are there and very supportive but I always want to know what's going on and what the next steps will be. Probably got that from a lifetime of dealing with medical stuff.

To answer some of your questions and provide further clarification, I am currently on 150 mg synthroid. I haven't had any major weight changes. In the months before I was diagnosed I gained 5-10 pounds (I'm currently about 130 lbs), but i figured that was due to the stress of grad school and a new job, lack of exercise and good diet. I was also very tired all the time, but again thought that had to do with my lifestyle. I was going to school full time and living/working 40 hrs/wk in a college dorm. Not sure if fatigue or weight gain were potential thyroid cancer symptoms, but they didn't seem out of the ordinary at the time. My thyroid function blood work was also normal in the days before I was diagnosed, which I also find strange. I don't think my prior radiation could have prompted this diagnosis as I was radiated to the abdomen rather than the head/neck.

I am being treated at Children's hospital boston where my oncologist for my childhood cancer is affiliated. My surgery was done by the chief of general surgery and he has expertise in cancer surgery. He made sure to ultrasound me for any more lymph nodes on the table before closing me up so I'm hoping it was a thorough job and we won't have to go in again. I've met with my endocrinologist once and corresponded with her numerous times over e-mail, she seems very good. They told me the numbness form surgery may be permanent because they had to divide some nerves to get at the thyroid/lymph nodes. My surgery was a little over 6 hours. They also told me I had "positive margins," so there are definitely cancer cells/thyroid tissue still in there. My scar is healing Ok but still pretty red. What cream do you use sunnyaz? I also didn't know about the B-Raf mutation, I'll ask about that.

Also sunny az, what were the side effects of your RAI, particularly when you had the high dose? I think I may be having somewhere around 150 mci, but I'm not positive (definitely over 100 mci though). They are letting me go home rather than stay in the hospital.

Thanks again,
kejpuzzler

You are very welcome!
Sounds like you have this in control. You will need to go on the Low Iodine Diet about two weeks before RAI but I know you are aware of that. www.thyca.org has a great cookbook in PDF format with tips and snack ideas. I also posted some of my favorite recipes and snack ideas on the post "tips for low iodine diet."

Side effects of RAI were very minimal. Nothing like what you experienced with Chemo. Some people don't have a lot of side effects. After the isolation period I felt a bit drained, had some bowel issues and some tingling in my mouth and on my tongue and a little bit of dry mouth. I lost some amount of taste but it's slowly coming back. My Nuclear Medicine doctor gave me steroids to take after day one and for three days so as to minimize damage to the salivary glands. So far, no issues with that but I have heard that it can creep up months later. I just try to stay hydrated and keep salivating. RAI can last up to six months in the body, so I am still sucking on hard candy to keep salivating. I had a lot of uptake in my Liver which may be why I have had some bowel issues. Everyone is different though. I went home after my treatments too. It's pretty rare that they would keep you in the hospital here in the U.S.

I use Mederma cream with SPF. You can get it at any drug store. I buy it at the grocery store near the Pharmacy with lots of other scar creams. It's about eighteen dollars for a small tube but a little bit goes a long way. You can download a coupon at their website to ease some of the expense. I think the cost is worth the results. After three surgeries my scar is fading fairly quickly.

Take care and keep in touch!

Julie-SunnyAZ

nasher · March 2011

sunnyaz said:
You are very welcome!
Sounds like you have this in control. You will need to go on the Low Iodine Diet about two weeks before RAI but I know you are aware of that. www.thyca.org has a great cookbook in PDF format with tips and snack ideas. I also posted some of my favorite recipes and snack ideas on the post "tips for low iodine diet."

Side effects of RAI were very minimal. Nothing like what you experienced with Chemo. Some people don't have a lot of side effects. After the isolation period I felt a bit drained, had some bowel issues and some tingling in my mouth and on my tongue and a little bit of dry mouth. I lost some amount of taste but it's slowly coming back. My Nuclear Medicine doctor gave me steroids to take after day one and for three days so as to minimize damage to the salivary glands. So far, no issues with that but I have heard that it can creep up months later. I just try to stay hydrated and keep salivating. RAI can last up to six months in the body, so I am still sucking on hard candy to keep salivating. I had a lot of uptake in my Liver which may be why I have had some bowel issues. Everyone is different though. I went home after my treatments too. It's pretty rare that they would keep you in the hospital here in the U.S.

I use Mederma cream with SPF. You can get it at any drug store. I buy it at the grocery store near the Pharmacy with lots of other scar creams. It's about eighteen dollars for a small tube but a little bit goes a long way. You can download a coupon at their website to ease some of the expense. I think the cost is worth the results. After three surgeries my scar is fading fairly quickly.

Take care and keep in touch!

Julie-SunnyAZ

skin cream
Myself I used cocoa butter with vitamin E (what my ENT recommended)

also try to keep your scar out of the sunlight as much as particle while its healing or it may become much more visible.

also I have found that once the incision is healed that putting the skin cream/scar cream whatever and rubbing it in with a rubber bounce ball (recommended by physical therapist) will also break down the scar tissue to minimize the thickness of scar tissue.

I also dont think I had any major side effects of the radiation treatment and from other cancer survivors i know that other treatments are much worse than RAI.

please keep in touch

Craig

early on in the process...

Comments

Discussion Boards