# Swollen lymph nodes and/or salivary glands w/ RAI



## Jaimee

I am 6 days past when I took my i131 for cancer following thyroidectomy. I am having quite a bit of swelling on either side of my neck, toward the top and kind of inward, but between shooter marble-golf ball size... I don't know if this is salivary glands or lymph nodes. I've done everything the doc told me to do: I've been drinking a gallon of water a day with fresh lemons and sucking on sour candy. This swelling began I think on the third day and hasn't let up at all. Is this normal? I have my whole body scan this Thursday and imagine I'll hear from my endo with results the following week. I'm getting nervous I guess. I don't like not knowing what's going on...:sad0049:


----------



## Andros

Jaimee said:


> I am 6 days past when I took my i131 for cancer following thyroidectomy. I am having quite a bit of swelling on either side of my neck, toward the top and kind of inward, but between shooter marble-golf ball size... I don't know if this is salivary glands or lymph nodes. I've done everything the doc told me to do: I've been drinking a gallon of water a day with fresh lemons and sucking on sour candy. This swelling began I think on the third day and hasn't let up at all. Is this normal? I have my whole body scan this Thursday and imagine I'll hear from my endo with results the following week. I'm getting nervous I guess. I don't like not knowing what's going on...:sad0049:


If the swelling is that apparent; I sure would call the doctor. Please do. This sounds worrisome.

I had RAI 3 times and did not have swelling.


----------



## Jaimee

I called. He said it's a relatively uncommon side effect of the RAI for cancer. Could either be attacking residual cancer in lymph nodes or could be the salivary side effects. Warm compresses, motrin and continue sucking on sour candy. My taster is off now as well (lemons taste bitter instead of sour) so I'm thinking its the salivary glands. He said it should go away eventually on it's own.


----------



## Andros

Jaimee said:


> I called. He said it's a relatively uncommon side effect of the RAI for cancer. Could either be attacking residual cancer in lymph nodes or could be the salivary side effects. Warm compresses, motrin and continue sucking on sour candy. My taster is off now as well (lemons taste bitter instead of sour) so I'm thinking its the salivary glands. He said it should go away eventually on it's own.


Aaaaaaaaaaaaaaaw; {{{{Jaimee}}}} I am so so glad you called. Aren't you? This way we know that it does happen and you have to be one of the "lucky" ones.

Keep that sour candy jar filled up.

Let us know how you are doing in a few days or even sooner.


----------



## Jaimee

Just checking in! I had my whole body scan today and it is definitely my salivary glands that are swollen! I have given up on the sour candy (it wasn't doing anything but rotting my teeth and messing up my blood sugar anyway) and instead am using Biotene products-- toothpaste, mouthwash and spray-- at the advice of another ThyCa sister who had similar issues post RAI. I don't know if it will cure the problem, but it has definitely made me more comfortable as shortly after I last posted my mouth completely dried up. Anyway, just wanted to make sure I posted this here in case anyone else has a similar problem in the future. So far I haven't found anything to help with the swelling. I'm taking ibuprofen and using moist heat (which increases saliva production and feels good, but doesn't take much out of the swelling).


----------



## lulu_russell

Hi there,

I had the same issue as you after my 131 Treatment. I couldn't taste anything for 2 weeks and eventually it came back. My salivary glands swelled up one day and you know when you get that twinge in the back of your cheeks when you eat something sour and sweet. Well, when even drinking water it was amplified like by 100,000. I was screaming when I tried to drink or eat anything.

The best thing I can tell you is stay away from spicy foods. That is the one major thing that will cause swelling.

I am being treated at MD Anderson in Houston. My doctor said, that the radiation treatment can cause the salivary ducts to shrink. They have a new procedure that started doing recently. It is an outpatient surgery, more like a procedure than a surgery. My doctor stuck a scope into my salivary ducts and cleaned them out. Then he inserted these extremely small tubes and stitched into your cheeks and they stay in for two weeks to open them back up. It is a little painful for the first couple of days, but then they just a little annoying. Have to eat mushy food and soups for those two weeks. BUT, instantly I felt the pressure and swelling go down. This procedure works!!! I would recommend speaking to your doctor about it. I had it done on November 19th and have been feeling so much better since then. But, still do recommend staying away from really spicy food.

Here is what my surgery report says: The patient is a 38-year-old female with a history of papillary thyroid carcinoma and chronic xerostomia following radioiodine treatment (150 mCi). Therefore, she is taken to the operating room for sialendoscopy of the bilateral parotid glands.

If you would like the whole surgery report on what they did I can paste that in to, just let me know.

Let me know if you have any other questions.

I have one question to anyone: Do you find yourself feeling really irritible and cranky in the evenings and at other times feeling depressed? My 17 year old son says I am always yelling at him for the littlest thing and I am over reacting and taking my anger out on him. I do kind of feeling that way, normally I would get my stern mom voice going, but now I feel like I screaming instead of talking. I had him in tears last night. I was trying to ask him if he has noticed a change in me and he said I don't know.


----------



## Andros

lulu_russell said:


> Hi there,
> 
> I had the same issue as you after my 131 Treatment. I couldn't taste anything for 2 weeks and eventually it came back. My salivary glands swelled up one day and you know when you get that twinge in the back of your cheeks when you eat something sour and sweet. Well, when even drinking water it was amplified like by 100,000. I was screaming when I tried to drink or eat anything.
> 
> The best thing I can tell you is stay away from spicy foods. That is the one major thing that will cause swelling.
> 
> I am being treated at MD Anderson in Houston. My doctor said, that the radiation treatment can cause the salivary ducts to shrink. They have a new procedure that started doing recently. It is an outpatient surgery, more like a procedure than a surgery. My doctor stuck a scope into my salivary ducts and cleaned them out. Then he inserted these extremely small tubes and stitched into your cheeks and they stay in for two weeks to open them back up. It is a little painful for the first couple of days, but then they just a little annoying. Have to eat mushy food and soups for those two weeks. BUT, instantly I felt the pressure and swelling go down. This procedure works!!! I would recommend speaking to your doctor about it. I had it done on November 19th and have been feeling so much better since then. But, still do recommend staying away from really spicy food.
> 
> Here is what my surgery report says: The patient is a 38-year-old female with a history of papillary thyroid carcinoma and chronic xerostomia following radioiodine treatment (150 mCi). Therefore, she is taken to the operating room for sialendoscopy of the bilateral parotid glands.
> 
> If you would like the whole surgery report on what they did I can paste that in to, just let me know.
> 
> Let me know if you have any other questions.
> 
> I have one question to anyone: Do you find yourself feeling really irritible and cranky in the evenings and at other times feeling depressed? My 17 year old son says I am always yelling at him for the littlest thing and I am over reacting and taking my anger out on him. I do kind of feeling that way, normally I would get my stern mom voice going, but now I feel like I screaming instead of talking. I had him in tears last night. I was trying to ask him if he has noticed a change in me and he said I don't know.


Hi there and welcome to the board!! I am sorry for what you have been through but ever so glad that the papillary cancer was discovered and taken care of.

Can you share exactly how it was discovered that you had papillary cancer? I would like to know and it sure would benefit our readers!

We understand why you are grouchy but I doubt a 17 year old would. They are just starting to experience life.

Maybe a rubber band around the wrist sort of thing to remind you to soft shoe it. Parenting can never stop though; you have to stay on top of the teeners, that is for darn sure!!


----------



## lulu_russell

About 5 years ago my thyroid levels started fluctuating. They put me on Synthroid. I was feeling better, but was still tired all the time. After a couple of years I started seeing other doctors to see what else was the matter with me. One said hypothyroid, another said Hashi's, another tried to treat me for depression. The anti-depressant he gave me woke me out of my sleep with such bad chest pains, felt like a mack truck was sitting on my chest. So, I gave up and just kept taking my Synthroid and didn't persue it anymore.

From most of 2009 I felt like I was sick all the time, felt like I was coming down with the flu every evening. Always had dark circles under my eyes and constantly using cover-up. In November a co-worker pulled me in her office and grabbed both of my hands and said you do not look good, there is something wrong, are you drinking enough water...something is wrong. I said I know, I am tired all the time.

I thought it was from not working out, I would try to work out, but it felt like it was going to kill me, it made me feel worse. I would see doctor's through out the years and have bloodwork done and they would say I am okay or treat me for some infection.

On December 3, 2009, I started having numbness and tingling in the back of my neck and my spine was aching on the base of my neck. I will never forget the date because I was at my best friend's mother's funeral who died from breast cancer. Btw...CANCER SUCKS!!!

I went to see my chiropractor and he sent me in for an MRI and the radiologist saw 2 tumors on the backside of my thyroid and 2 A-Typical Hemangiomas on my spine.

My Chiropractor told me I need to go see a doctor and have these looked at. After going from doctor to doctor and on February 4th, I had an ultrasound and they saw enlarged lymph nodes and did a biopsy. I could tell by the tech, when she was asking me questions and the doctor said I need to go see my doctor ASAP it was cancer. Then received the call two days later confirming it.

Luckily, my boss was on the Board at MD Anderson and he got me in really fast and got me the best doctors. I gave my chiropractor and boss the biggest hug ever...I owe them so much!!!

I had surgery on March 18, 2010, they removed my thyroid and did a neck dissection. They removed 43 lymph nodes, I didn't even know we had that many and that's not all of them. The bigger tumor was growing into my skeletol muscle. I guess that is why it felt like my spine was aching. There was so much cancer around the right side of my vocal cord that it was paralyzed after the surgery. I had another surgery on October 7, 2010 were they put a stent in the right vocal cord so now I can talk again. Then had the surgery on November 19, 2010 to fix my salivary glands.

If the hemangiomas don't grow on my spine I am golden, as of now they are stable...I pray that they will always stay that way. If they grow it isn't good...I must have localized radiation and it can damage my spinal cord. I haven't had any growth in a year, so now I have gone from 3 month MRIs to yearly MRIs as of this past February 28th. And today, I just got back from my follow-up regarding the thyroid cancer and no new signs of tumors!!!

Yeah for me!!!  But, on the same note, I got news last night a friend I went to high school, who is 39 like me has 3 new tumors in her brain that have grown in since her last surgery 3 weeks ago and tumors in her lungs. I got my good news today and then had to walk over to her room at MD Anderson and talk to her about her horrible news. It is hard not to feel guilty to know your going to be okay and she isn't and she has so little time now and she has a 9 yr old daughter. Like I said...CANCER SUCKS!!!


----------



## Jaimee

Hi Lulu. Thank you for sharing your experience with us. I am around 8 weeks out from my RAI for cancer and I am still having salivary issues. It did improve some though after about 3 weeks and my sense of taste came back completely, though I feel that at times it is still "off" just a bit. I am continuing to use the Biotene products and it is very relieving. I just had my first endo appt since the RAI and it went really well! He said my scan couldn't be better (unless I hadn't had cancer! lol) and my TSH, while seriously hyper-thyroid on purpose, is pretty much on target for being suppressed for the next year to keep any "leftovers" from becoming active. He addressed my neck discomfort and voice issues as well. In addition to talking about a "game plan" for the years to come. I felt he was very thorough and sensitive. I feel really good about it. Well, as good as can be expected. I too have had a hard time controlling my emotions. I think a lot of it is hormonal and some is just related to the grieving process we must go through when dealing with cancer. I am taking St John's Wort for depression/anxiety and it has helped A LOT. I also started blogging at www.coffeespoonsandcancer.blogspot.com and I think that has helped me with coping as well.


----------



## Andros

lulu_russell said:


> About 5 years ago my thyroid levels started fluctuating. They put me on Synthroid. I was feeling better, but was still tired all the time. After a couple of years I started seeing other doctors to see what else was the matter with me. One said hypothyroid, another said Hashi's, another tried to treat me for depression. The anti-depressant he gave me woke me out of my sleep with such bad chest pains, felt like a mack truck was sitting on my chest. So, I gave up and just kept taking my Synthroid and didn't persue it anymore.
> 
> From most of 2009 I felt like I was sick all the time, felt like I was coming down with the flu every evening. Always had dark circles under my eyes and constantly using cover-up. In November a co-worker pulled me in her office and grabbed both of my hands and said you do not look good, there is something wrong, are you drinking enough water...something is wrong. I said I know, I am tired all the time.
> 
> I thought it was from not working out, I would try to work out, but it felt like it was going to kill me, it made me feel worse. I would see doctor's through out the years and have bloodwork done and they would say I am okay or treat me for some infection.
> 
> On December 3, 2009, I started having numbness and tingling in the back of my neck and my spine was aching on the base of my neck. I will never forget the date because I was at my best friend's mother's funeral who died from breast cancer. Btw...CANCER SUCKS!!!
> 
> I went to see my chiropractor and he sent me in for an MRI and the radiologist saw 2 tumors on the backside of my thyroid and 2 A-Typical Hemangiomas on my spine.
> 
> My Chiropractor told me I need to go see a doctor and have these looked at. After going from doctor to doctor and on February 4th, I had an ultrasound and they saw enlarged lymph nodes and did a biopsy. I could tell by the tech, when she was asking me questions and the doctor said I need to go see my doctor ASAP it was cancer. Then received the call two days later confirming it.
> 
> Luckily, my boss was on the Board at MD Anderson and he got me in really fast and got me the best doctors. I gave my chiropractor and boss the biggest hug ever...I owe them so much!!!
> 
> I had surgery on March 18, 2010, they removed my thyroid and did a neck dissection. They removed 43 lymph nodes, I didn't even know we had that many and that's not all of them. The bigger tumor was growing into my skeletol muscle. I guess that is why it felt like my spine was aching. There was so much cancer around the right side of my vocal cord that it was paralyzed after the surgery. I had another surgery on October 7, 2010 were they put a stent in the right vocal cord so now I can talk again. Then had the surgery on November 19, 2010 to fix my salivary glands.
> 
> If the hemangiomas don't grow on my spine I am golden, as of now they are stable...I pray that they will always stay that way. If they grow it isn't good...I must have localized radiation and it can damage my spinal cord. I haven't had any growth in a year, so now I have gone from 3 month MRIs to yearly MRIs as of this past February 28th. And today, I just got back from my follow-up regarding the thyroid cancer and no new signs of tumors!!!
> 
> Yeah for me!!!  But, on the same note, I got news last night a friend I went to high school, who is 39 like me has 3 new tumors in her brain that have grown in since her last surgery 3 weeks ago and tumors in her lungs. I got my good news today and then had to walk over to her room at MD Anderson and talk to her about her horrible news. It is hard not to feel guilty to know your going to be okay and she isn't and she has so little time now and she has a 9 yr old daughter. Like I said...CANCER SUCKS!!!


Oh, LuLu!! You know what? I think it was very painful for you to share your story!! You have been through so so much!! You truly are a miracle and yes; thanks to your boss and your chiropractor! OMG!! What if they had not stepped out??

Such a story!! You are a true survivor and I am very very sorry that this happened to you.

I am keeping you in my prayers for continued good news medically and a wonderful life. I know you have so much to offer to others; you sound so compassionate.

Yes, Cancer sucks. I am big on pushing posters to have it ruled out. I could not agree w/you more.

A special hug for a special person..........


----------



## lulu_russell

Thank you! I consider myself really lucky.


----------



## Andros

lulu_russell said:


> Thank you! I consider myself really lucky.


And I consider ourselves very very lucky to have you here!! Thank you so much for joining and sharing w/others.


----------



## kpn_chin_up

Thanks for sharing - I have my RAI next week so your info is helpful.


----------

