Anyone else had numerous lymph nodes removed in addition to their thyroid?
I have a scar that goes from ear to ear, and am getting steroid injections every 6 weeks or so to help with the keloid that I developed. I have gotten used to people asking what happened to my neck, but deep down I can't help but feel bothered by the fact that people who don't know me almost automatically lock their eyes on my scar when they first see me. Usually people are nice about it and ask me very politley, but I've run into a few people who have just been plain rude, asking "if I had been in prison" or if I "tried to hang myself"....the latter really bothered me because although 99.9% of people would never be obnoxious enough to ask someone that, it made me wonder how many people actually think this to themselves. Ultimatley, I have become very self consious, and finding myself not going out with my friends as much as I used to.
Another thing that has been bothering me since the surgery has been the numbess in my neck and right ear...just last month was the first time I put a blade to my face to shave in fear of cutting myself from not being able to feel the blade against my skin. It took me about 5 months to be able to lift my arms over my shoulders, but after 9 months the numbness is still their. Anyone know how long it takes to experience full sensation again?
If anyone has been in a similar situation, any advice on how to increase self confidence would be much appreciated. I'm in nursing school in New Orleans, and will be graduating in December with a BS in Nursing. The one positive that I take from my visible scar is that when patients ask me what happened, I feel like I'm able to give them hope and show empathy towards their situation, especially if it involes pain after a surgical procedure. I consider myself a tough individual, both mentally and physically, but this cancer has really drained me mentally...not to mention the hypothyroid effects, which I totally underestimated. Anyways, any advice, especially for anyone my age would be greatly appreciated. Thanks.
Tim
Comments
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What you are going through
What you are going through sounds somewhat similar to what I went through, with a few differences.
I am almost 42 and going through this and feel so bad that you are only 23, which is close to my sons age.
I was diagnosed also in June (2008) with papillary thyroid cancer, had TT and lymph node removal from the right side of my neck. (Though I only had 6 removed, 4 of them being cancerous.)
When I came out of surgery I looked awful. The scar up my neck was bad, but with time it has gotten a lot better. (1 1/2 years now)
I too was self conscious and had people looking at my neck, which I still do.
Another thing in common is that I am in my second semester of nursing school. I thought the same thing you did when I would go to work at the hospital or have clinical. The patients would look and ask what I had done and I would explain and kept a positive outlook, along with praising God. I hoped that I could brighten someones day and show them that there is hope.
My thyroglobulin after TT has always been a .2 and this round of bloodwork it is up to 14.
I had my first thyrogen shot today, will have one tomorrow, RAI capsule Wed and my scan on Friday.
I feel that it is back, somewhere, and have wondered if it is now on the left side of my neck, which would also give me another scar on the other side.
One thing about the scar is that the scar from where the thyroid was taken is virtually invisible. The side scar will always be visible but it is a lot better. So maybe w/time yours will look like 2 seperate scars instead of one. (I look at it more like a smiley face rather than someone trying to hang themselves. I did look at it from the point of view that I am cancer free...hopefully I can continue to say that after my body scan this week.)
It took awhile for me to lift my right arm high. I did physical therapy for a short time. My voice still gets hoarse, can't hold a tune while singing, but I think positive in that I can still talk!
I am sure the feelings are different w/someone being 23 compared to 41. I might be in the stage of my life where I don't care what other think, but at the same time I can't imagine someone making those comments to me like they have to you. They don't have a clue as to how someone got that scar. That is just plain awful and I am sorry you had to hear those remarks.
If I can give you anymore insight just let me know.
From what I have read it seems that most people have their thyroid out and not lymph nodes like us.
Trust in God...we'll be just fine!
Oh, if you have any advise on how to get through my last month of this semester of RN school let me know. (I graduate in 2011) It is really hard to concentrate on studying while going thru this week of tests.
Michelle0 -
as you probably know, one of the syptoms of hypothyroidism is...
... depression. and your system does not immediately adjust once you start taking your medication, it takes quite a while for your hormone levels to become ideal... It sucks as an advise but be patient knowing that things will get better and you will start feeling better as well your scar fading away... it takes more than a year most times for the redness to go away... Just protect it religiously from the sun...
Cherish the news that you are cancer free? Having removed so many lymph nodes, that is fantastic news. did you have a follow up scan and / or bloodwork? Is your tg (thyroglobulin) undetectable?
Best.
M.0 -
Hypothyroidismmiladyx said:as you probably know, one of the syptoms of hypothyroidism is...
... depression. and your system does not immediately adjust once you start taking your medication, it takes quite a while for your hormone levels to become ideal... It sucks as an advise but be patient knowing that things will get better and you will start feeling better as well your scar fading away... it takes more than a year most times for the redness to go away... Just protect it religiously from the sun...
Cherish the news that you are cancer free? Having removed so many lymph nodes, that is fantastic news. did you have a follow up scan and / or bloodwork? Is your tg (thyroglobulin) undetectable?
Best.
M.
Thank you both for the advice....I honestly dont remember what my thyroglobulin level is..I think the last injection I had was in December. As far as the blood work, I have another test next week. I've had more scans than I can remember the last few months(CT, PET, CXR) and everything came back negative. Currently I'm taking 175 mcg and my last TSH level was in the 20s (i think my endocronoligist wants it below 5). I did realize that depression was a side effect, but most of my sideeffects (cold intolerance, fatigue, weight gain) occured within the 1st few months, but since then I feel my energy levels are close to what they used ot be. Deppression is the only thing that has been keeping me down. I was perscibed anxiety meds and antideppresants to help, but the sadness just keeps lingering. I'm thinking about maybe talking to a therapist this summer once I get more time from being off of school.
I also have noticed the scar around where they removed the thyroid to be fading...its just the two along the side of the neck that is still red and raised. My surgeon did mention an elective procedure to remove the scar later on down the road, but I don't think my insurance will cover that.
However, I'm glad I found this website. Its good to know that others have experienced the same thing as me. The most troubling thing has been trying to find someone else to relate to-I don't know of anyone my age who has had any type of cancer, and the ones that I know who have had thyroid cancer all older women who just had a thyroidectomy and not the neck disection.0 -
tg and tshWhoDatFan said:Hypothyroidism
Thank you both for the advice....I honestly dont remember what my thyroglobulin level is..I think the last injection I had was in December. As far as the blood work, I have another test next week. I've had more scans than I can remember the last few months(CT, PET, CXR) and everything came back negative. Currently I'm taking 175 mcg and my last TSH level was in the 20s (i think my endocronoligist wants it below 5). I did realize that depression was a side effect, but most of my sideeffects (cold intolerance, fatigue, weight gain) occured within the 1st few months, but since then I feel my energy levels are close to what they used ot be. Deppression is the only thing that has been keeping me down. I was perscibed anxiety meds and antideppresants to help, but the sadness just keeps lingering. I'm thinking about maybe talking to a therapist this summer once I get more time from being off of school.
I also have noticed the scar around where they removed the thyroid to be fading...its just the two along the side of the neck that is still red and raised. My surgeon did mention an elective procedure to remove the scar later on down the road, but I don't think my insurance will cover that.
However, I'm glad I found this website. Its good to know that others have experienced the same thing as me. The most troubling thing has been trying to find someone else to relate to-I don't know of anyone my age who has had any type of cancer, and the ones that I know who have had thyroid cancer all older women who just had a thyroidectomy and not the neck disection.
Your tg should be undetectable and your tsh should be below 0.1
Are you sure it is your tsh ur doctor wants below 5 and not your tg?0 -
yeah, i'm pretty sure themiladyx said:tg and tsh
Your tg should be undetectable and your tsh should be below 0.1
Are you sure it is your tsh ur doctor wants below 5 and not your tg?
yeah, i'm pretty sure the goal is to get my tsh to below 5...I'm probably going to have to be closer to 250 mcg before my levels are normal. The link below is what I just came across the internet to make sure what the normal levels are.
http://thyroid.about.com/od/gettestedanddiagnosed/a/normaltshlevel.htm0 -
I don't remember what theWhoDatFan said:yeah, i'm pretty sure the
yeah, i'm pretty sure the goal is to get my tsh to below 5...I'm probably going to have to be closer to 250 mcg before my levels are normal. The link below is what I just came across the internet to make sure what the normal levels are.
http://thyroid.about.com/od/gettestedanddiagnosed/a/normaltshlevel.htm
I don't remember what the topics were, but I know I've read posts from people who were in their 20's.
I'm sure you will come across someone.
Michelle0 -
TSH levelWhoDatFan said:yeah, i'm pretty sure the
yeah, i'm pretty sure the goal is to get my tsh to below 5...I'm probably going to have to be closer to 250 mcg before my levels are normal. The link below is what I just came across the internet to make sure what the normal levels are.
http://thyroid.about.com/od/gettestedanddiagnosed/a/normaltshlevel.htm
typically endos want TSH below 1 after TT for thyroid cancer. 5 would be the upper limit of someone with a normal thyroid history. Thyroglobulin should be very low, almost undectable post RAI. You probably also want to check to see if you have antibodies as it may affect your Tg result.
You may want to talk to your endo about raising your thyroid med level. Once your TSH lowers, hopefully you'll get some relief of yor systems. It takes several weeks to got the TSH level to lower after raising the thyroid med dosage.
Best of health to you and I hope things get better.0 -
I skimmed the the link you posted...WhoDatFan said:yeah, i'm pretty sure the
yeah, i'm pretty sure the goal is to get my tsh to below 5...I'm probably going to have to be closer to 250 mcg before my levels are normal. The link below is what I just came across the internet to make sure what the normal levels are.
http://thyroid.about.com/od/gettestedanddiagnosed/a/normaltshlevel.htm
... and i believe "the normals" mentioned in that article are for people with thyroids...thyroid cancer patients have different goals for TSH to prevent cancer from coming back...as i mentioned i believe this goal is below 0.5 in most cases and lower than 0.1 in high risk cases...
just as a suggestion it would be good to have copies of all of your bloodwork so you can keep track of things... and know what your exact thyroglobulin and tsh values are... i dont mean to preach but i have heard a lot of times people falling through the cracks as the doctors are too busy, etc. so just wanted to make the suggestion.0 -
i am in the same situation...
i am first diagnosed back in Nov 2008. i had TT and 90 lypmh nodes removed, they are all on the left side. the left me a scar like the logo of beijing olmpics. when i first had the scar, felt like ppl keep staring, but seldom asked. i had 6 steroid injection, every 2 weeks, also because of the keloid formation. now it looks like the scar sunked in..
i had 2 RAI, and now waiting for the third RAI. my scar strecthed from my shoulder to my ear, and from the left of my neck to the middle. it is huge. now my entire left neck and my left shouder in numb. Even after 15 monhts, i still have got my senses back.
Phyllis0 -
hi PhyllisPhyllis900 said:i am in the same situation...
i am first diagnosed back in Nov 2008. i had TT and 90 lypmh nodes removed, they are all on the left side. the left me a scar like the logo of beijing olmpics. when i first had the scar, felt like ppl keep staring, but seldom asked. i had 6 steroid injection, every 2 weeks, also because of the keloid formation. now it looks like the scar sunked in..
i had 2 RAI, and now waiting for the third RAI. my scar strecthed from my shoulder to my ear, and from the left of my neck to the middle. it is huge. now my entire left neck and my left shouder in numb. Even after 15 monhts, i still have got my senses back.
Phyllis
were your first two RAIs successful - did they bring your thyroglobulin down? Did your doctors tell you why you are having a third one?0 -
My endo did not say whethermiladyx said:hi Phyllis
were your first two RAIs successful - did they bring your thyroglobulin down? Did your doctors tell you why you are having a third one?
My endo did not say whether the RAI is successful. She told me right before the first RAI that i needed 3 because the area of invovlement is too big. The first 2 RAI brought the thyroglubin level down, but still not low enough. i have been seeing her every 2 months, and everytime i needed 10 tubes of blood drawn and a ultrasound of my thyroid.0 -
By the way, i am 26 yearsPhyllis900 said:My endo did not say whether
My endo did not say whether the RAI is successful. She told me right before the first RAI that i needed 3 because the area of invovlement is too big. The first 2 RAI brought the thyroglubin level down, but still not low enough. i have been seeing her every 2 months, and everytime i needed 10 tubes of blood drawn and a ultrasound of my thyroid.
By the way, i am 26 years old...
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how big...Phyllis900 said:My endo did not say whether
My endo did not say whether the RAI is successful. She told me right before the first RAI that i needed 3 because the area of invovlement is too big. The first 2 RAI brought the thyroglubin level down, but still not low enough. i have been seeing her every 2 months, and everytime i needed 10 tubes of blood drawn and a ultrasound of my thyroid.
...are your RAI doses?0 -
The first dose is 150 andmiladyx said:how big...
...are your RAI doses?
The first dose is 150 and the second one is 100. i was staying in the hospital for both of the treatment. the reduced the dosage because the first time i have strong side effects. i was throwing up in the first 9 hours after swallowing the pill. the endo was worried that i might throw up again so she just lower the second dose.
The nurses in the hospital told me that, i am the only patient satying in the hospital for the treatment, and nobody use the (lead covered room) througout the year.by the way, i was staying there 3 day per treatment...:)0 -
lymph nodes removed
I had my thryoid removed in August of 2009 along with 18 lymph nodes. All 18 had it. I had my radioactive iodine in November 2009 and in April of this year I will have my scan and they will check my TG count. I have papillary.
I understand your depression, I cry often when I'm by myslef. The crying actually helps me though. I have a rather small scar maybe about 2 1/2 inches. But, I catch people looking at it all the time. No one that doesn't know me personally has asked me about my scar. My scar has made me insecure. I always worry that I may have cancer somewhere else. I have great support from my husband and my family. I have a friend right now whoe has breast cancer and she has had to endure so much more then me that I feel like I should have nothing to complain about. I still worry, because cancer is cancer no matter what type. I agree that your scar will be hope for your future patients. It will be something positive rather then negative. Maybe some kind of couseling may help with your depession. Talking with people in the same boat you are can help, I know talking to you right now is making me feel better.
I am numb where my scar but it does hurt depending how I sleep. I even think my throat in general is more sensitive.
I hope you feel better or are already feeling better now.
Josette0 -
lymph nodes removed
I had my thryoid removed in August of 2009 along with 18 lymph nodes. All 18 had it. I had my radioactive iodine in November 2009 and in April of this year I will have my scan and they will check my TG count. I have papillary.
I understand your depression, I cry often when I'm by myslef. The crying actually helps me though. I have a rather small scar maybe about 2 1/2 inches. But, I catch people looking at it all the time. No one that doesn't know me personally has asked me about my scar. My scar has made me insecure. I always worry that I may have cancer somewhere else. I have great support from my husband and my family. I have a friend right now whoe has breast cancer and she has had to endure so much more then me that I feel like I should have nothing to complain about. I still worry, because cancer is cancer no matter what type. I agree that your scar will be hope for your future patients. It will be something positive rather then negative. Maybe some kind of couseling may help with your depession. Talking with people in the same boat you are can help, I know talking to you right now is making me feel better.
I am numb where my scar but it does hurt depending how I sleep. I even think my throat in general is more sensitive.
I hope you feel better or are already feeling better now.
Josette0 -
Hello, I cant believe I
Hello, I cant believe I found a male, young adult with the same cancer my son 18 years old!
He will be in surgery on 4/20 to remove thyroid, and right side lymph nodes, and more on left side after 3 months. We are so nervous! He also is already worried about scaring and how much pain he will have, also had to leave his job. The surgeon didnt say much about side nek scars.. Please let me know of any big questions i should ask. I would appreciate it.Thank you. Nervous and depressed in VT0 -
Hi Cathy Macathy ma said:Hello, I cant believe I
Hello, I cant believe I found a male, young adult with the same cancer my son 18 years old!
He will be in surgery on 4/20 to remove thyroid, and right side lymph nodes, and more on left side after 3 months. We are so nervous! He also is already worried about scaring and how much pain he will have, also had to leave his job. The surgeon didnt say much about side nek scars.. Please let me know of any big questions i should ask. I would appreciate it.Thank you. Nervous and depressed in VT
I had TT w/lymph node removal from right side.
My scar was pretty ugly, but that was also while I was still in the hospital. A lot of it ended up being some dried blood and swelling.
Trust me when I say that it ends up looking better w/time.
For me, the surgery was a piece of cake compared to not being on thyroid med afterwards for 6 weeks and then RAI w/ablation.
The biggest thing is to use sunscreen on it, once it heals.
I had a little problem w/my right arm for awhile afterwards. I had a hard time lifting it very high.
I saw a physical therapist for a little bit to made sure I did the exercises properly. I have no problem w/my arm now.
The only thing I have a problem with is that my throat will get sore/hoarse quite a bit. I've already had my tonsils out so I am pretty sure it is still the effects of surgery/radiation...even after 1 1/2 years.
Fortunately the only singing I do is in church or the car because I can't hold a tune whatsoever.
I feel bad for the people who like to sing.
Hope this helps.0 -
MLB, what is radition withMLG said:Hi Cathy Ma
I had TT w/lymph node removal from right side.
My scar was pretty ugly, but that was also while I was still in the hospital. A lot of it ended up being some dried blood and swelling.
Trust me when I say that it ends up looking better w/time.
For me, the surgery was a piece of cake compared to not being on thyroid med afterwards for 6 weeks and then RAI w/ablation.
The biggest thing is to use sunscreen on it, once it heals.
I had a little problem w/my right arm for awhile afterwards. I had a hard time lifting it very high.
I saw a physical therapist for a little bit to made sure I did the exercises properly. I have no problem w/my arm now.
The only thing I have a problem with is that my throat will get sore/hoarse quite a bit. I've already had my tonsils out so I am pretty sure it is still the effects of surgery/radiation...even after 1 1/2 years.
Fortunately the only singing I do is in church or the car because I can't hold a tune whatsoever.
I feel bad for the people who like to sing.
Hope this helps.
MLB, what is radition with ablation? After surgery, why no thyroid meds? So new, with my sons cancer, found out 4 weeks ago. Thanks for the info0 -
cathy ma...answer to your questionscathy ma said:MLB, what is radition with
MLB, what is radition with ablation? After surgery, why no thyroid meds? So new, with my sons cancer, found out 4 weeks ago. Thanks for the info
When I found out I had thyroid cancer, they scheduled me for a total thyroidectomy (TT) with lymph node removal. They already knew it was in all my thyroid and lymph nodes before surgery.
After you have surgery you have to go thru radiation to kill off any remaining cells and thyroid tissue that is left after surgery.
You can't be on thyroid meds until after your surgery because you have to be depleted of the hormone so the radioactive med will be taken up by any remaining cancer cells or thyroid tissue. (They don't even want you to have any good thyroid tissue in your body.)
Radiation is 6 weeks after surgery and unfortunately not very fun to go thru. Thyroid hormone is what stabalizes your metabolism. So, if you are loosing thryoid hormone as the 6 weeks goes along, you will have symptoms of hypothyroidism.
At the end of 6 weeks your son will have to take a high dose of radioactive iodine (RAI) to kill things off. I was nauseated during that week (they give you meds to help) and around my eyes got real puffy.
After that 5-7 days you can then be put on thyroid medicine.
The process of radiation is called ablation...killing off cancer cells.
What you would want to do is go to a thyroid cancer website and look for symptoms of what your son might experience after surgery while waiting to go on thyroid meds.
A lot of people talk about it on this site and everybody is different, but for me it was a very exhausing difficult time that I don't want to go thru again.cath0
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