[KimberlyOnline Facilitator August 16, 2012 at 11:44 am Post count: 4294]

#1173176

Hi Katie – I’m so sorry that you got this news. We will definitely keep you in our thoughts! I know that this can’t completely take away the shock or the fear that you are feeling, but thyroid cancer is very treatable, and patients generally have an excellent prognosis.

I do know of at least two other members of this board who discovered that they had thyroid cancer after surgery for Graves’. You might use the “search posts” feature in the top right-hand corner of the screen to read their stories.

ThyCa, an organization for thyroid cancer survivors, has wonderful resources on their web site, a large network of in-person support groups, and many educational events (including an upcoming conference). If you would like to learn more, here is a link to their web site:

http://www.thyca.org/

Please take care — and keep us all posted on how you are doing.

[Carito71 August 16, 2012 at 4:27 pm Post count: 333]

#1173177

Dear Katie,

It is good to get an update. I was thinking about you a few days ago and wondering how all had gone with your surgeries.

I’m sad to hear about your thyroid CA diagnosis Sometimes when it rains it pours, doesn’t it? Its not fair but to be positive, I’m glad that it was found early and that the mass in your neck was not malignant. I’m also glad that your surgery went well and that you are on your way on getting the treatment you need.

My grandfather had throat cancer. He had it removed and had the necessary treatment. He went on to live a normal healthy life until around 79 when he became sick of something non-related to the throat cancer.

You are in our thoughts and prayers. I wish with all of my heart that soon you will be feeling better and that your treatments are a success. Please keep us posted. I’ll be looking forward to reading more updates from you.

Hugs,
Caro

P.S. You are a fighter … Hang in there!!!

[snelsen August 16, 2012 at 5:12 pm Post count: 1909]

#1173178

Katie, I know three people who have had the same situation. Thyroid cancer is slow growing and usually contained. It is a NON ISSUE in their lives 8, 16. And 30 years later. Excellent prognosis.
Graves will be part of your world forever. But thyroid cancer will not.
Shirley

[Carito71 August 16, 2012 at 7:41 pm Post count: 333]

#1173179

gatorgirly wrote:

Carito – what wasn’t working with propranolol? I have been on it for 2.5 years now. It’s doing what it’s supposed to do – slowing my heart rate down. I am down to 10mg every morning but if I have more than one glass of wine in the evening, I find I need another 5mg. My LDL doubled after I started taking it, so my endocrinologist was eager to take me off it, but we just can’t seem to regulate my heart rate without it. My new endo did mention there are “better beta blockers than propranolol.” Like krcole, I also find myself short of breath often, but I attributed that to the palpitations…maybe it IS the propranolol. Next time I see him, I’m going to ask about metoprolol or any other BB that will not drive my LDL through the roof. My goal is come off it completely with six months.

Hello gatorgirly,

I’m sorry I just now saw your post. I most have missed it somehow. I hope you find my answer to your question. The Propranolol wasn’t regulating my Heart Rate. It was working but I was having to take a pill 6 times a day and it was driving me insane. My heart rate was going up and down. I couldn’t sleep at night because it was elevated and I needed something that would regulated and keep it constant so my General Dr recommended Metoprolol. I take it once a day and I don’t even notice my heart rate anymore. The Metoprolol regulated it right away … even at the beginning when I was still very hyper. I don’t really know what my LDL is doing right now but in Feb my Total was 210, which is very unusual for me. I was surprised as to how high it was. My General Dr. says that it is probably related to GD and wants to check it again once things have normalized. As for the shortness of breath, I had it too with Propranolol but it went away with the Metoprolol. It could have been my heart being elevated all of the time or it could have been that the Propranolol affects the lungs a lot more than the Metoprolol. Do ask your Dr. about it. My heart is now in the 60s and 70s and it used to be b/w 114-124bpm without a BB but with Propranolol it would only come down to the high 90s. I used to run in the 60s before I got sick with GD symptoms. Hope you feel better soon. Let me know how it goes.

Caro

[LaurelM August 16, 2012 at 9:36 pm Post count: 216]

#1173180

Wow! You have had to deal with a lot of disconcerting news. I have a friend who had thyroid cancer in her mid-twenties. I was going to say 10 years ago but then did the math and realized that we are now 40 so it has been 15 years. She had a very noticable lump (about the size of a nickle) when she was diagnosed. She ended up having a total surgical thyroidectomy which was followed by RAI to finish off any remaining tyroid tissue. She had a pretty rapid recovery and now takes replacement. She is doing very well, healthy and active. She also has a healthy preschooler and had no issues with her pregnancy. Do check out the ThyCA site that Kimberly suggested. My friend also found a lot of support at Gilda’s Club.

Keep us posted.

Laurel

[LaurelM August 16, 2012 at 9:36 pm Post count: 216]

#1173181

Wow! You have had to deal with a lot of disconcerting news. I have a friend who had thyroid cancer in her mid-twenties. I was going to say 10 years ago but then did the math and realized that we are now 40 so it has been 15 years. She had a very noticable lump (about the size of a nickle) when she was diagnosed. She ended up having a total surgical thyroidectomy which was followed by RAI to finish off any remaining tyroid tissue. She had a pretty rapid recovery and now takes replacement. She is doing very well, healthy and active. She also has a healthy preschooler and had no issues with her pregnancy. Do check out the ThyCA site that Kimberly suggested. My friend also found a lot of support at Gilda’s Club.

Keep us posted.

Laurel

[krcole August 16, 2012 at 11:38 pm Post count: 6]

#1173182

Hi!

So another update…

So I saw the endo today. He had done some consulting with one of the oncologist in town (who I know) and they had gotten a plan together by the time I arrived this afternoon.

So we are going to watch this for a few weeks/months or so. They did draw tumor markers today (it is a very sensitive blood test that will detect signs of cancer through how the blood is processed/reacts). These markers will be positive due to just having cancer removed and you can stir up “stuff” to make it positive even though the cancer has been supposedly all removed. This positive will be our baseline. Then in 6 weeks when the hormones have started to work (hopefully) they will draw another set of tumor markers at that point. Then compare the two. The expectation is that the positive will turn to a negative…because they believe that they got it…all…no promises but they are confident. If it stays positive at the same rate, we will wait another month and draw again…continuing that process for some time if they just stay the same while seeking out an oncologist to watch instead of just the endo. If it goes up we will immediately talk RAI to kill off the thyroid cancer that might have spread or been missed in taking out the thyroid.

So we have a plan. I am comfortable with it due to the statistic of growth speed, that thyroid ca is less agressive than any other ca, and that with all of the other health issues I have…RAI right after surgery would trash my body and make it really hard to recover/normalize. The MD also shared that people with Grave’s Disase and have their thyroid removed have a 1 in 100 chance of finding cancer when the thyroid is sent to pathology. Get that 1 out of 100. Those are insane odds. These people would have never known (like me) that they had cancer and he said would have lived a long life and it would most likely never have bothered them…due to such slow growth and the nonexistance of mets with most thyroid ca.

I will keep you posted. Thanks for your uplifting virtual hugs and comments today. There were quite a few tears at our house last night and today…and having ya’ll was such a relief. Also thank you for the resources for more support for the ca side.

I guess I never realized until today is I will always have “Grave’s” even though my thyroid was removed. Wow. I am just starting the path on this portion of the journey.

Again, thank you.

Blessings and Peace,
Katie

[krcole August 16, 2012 at 11:39 pm Post count: 6]

#1173183

Hi!

So another update…

So I saw the endo today. He had done some consulting with one of the oncologist in town (who I know) and they had gotten a plan together by the time I arrived this afternoon.

So we are going to watch this for a few weeks/months or so. They did draw tumor markers today (it is a very sensitive blood test that will detect signs of cancer through how the blood is processed/reacts). These markers will be positive due to just having cancer removed and you can stir up “stuff” to make it positive even though the cancer has been supposedly all removed. This positive will be our baseline. Then in 6 weeks when the hormones have started to work (hopefully) they will draw another set of tumor markers at that point. Then compare the two. The expectation is that the positive will turn to a negative…because they believe that they got it…all…no promises but they are confident. If it stays positive at the same rate, we will wait another month and draw again…continuing that process for some time if they just stay the same while seeking out an oncologist to watch instead of just the endo. If it goes up we will immediately talk RAI to kill off the thyroid cancer that might have spread or been missed in taking out the thyroid.

So we have a plan. I am comfortable with it due to the statistic of growth speed, that thyroid ca is less agressive than any other ca, and that with all of the other health issues I have…RAI right after surgery would trash my body and make it really hard to recover/normalize. The MD also shared that people with Grave’s Disase and have their thyroid removed have a 1 in 100 chance of finding cancer when the thyroid is sent to pathology. Get that 1 out of 100. Those are insane odds. These people would have never known (like me) that they had cancer and he said would have lived a long life and it would most likely never have bothered them…due to such slow growth and the nonexistance of mets with most thyroid ca.

I will keep you posted. Thanks for your uplifting virtual hugs and comments today. There were quite a few tears at our house last night and today…and having ya’ll was such a relief. Also thank you for the resources for more support for the ca side.

I guess I never realized until today is I will always have “Grave’s” even though my thyroid was removed. Wow. I am just starting the path on this portion of the journey.

Again, thank you.

Blessings and Peace,
Katie

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