Did you have pain with your hurthle cell cancer?

Saritav

Hi, I am 38 years old and for almost two months I developed some symptoms in my neck/throat area. It began with just some difficulty swallowing initially but now is full blown pain in neck/throat. I have pressure in my ears, a sensation something is stuck in my throat and numbness/tingling in my jaw on left side. Pain is unbearable. Did fna biopsy and came back hurthle cells. Waiting for surgery for final diagnosis. My surgeon keeps telling me that nodules that are 2 cm should not cause pain. I am so depressed because the doctors are not taking me serious when I tell them how much pain I'm in. Did any of you have similar symptoms? I also have to add that I feel like something is compressing my trachea. Can't seem to get a full/normal breath.

amorriso

symptoms
Hi. Sorry you are dealing with this, but you've come to the right place for help.I was diagnosed a year ago with papillary thyroid cancer, but many of your sypmtoms are very similar to what I felt. So yes - it can cause pain and odd sensations - my affected lymph nodes were pressing on my jugular vien and nerves - as soon as I had surgery to remove my thyroid and the nodes it went away. I also have had strange ear aches - those are gone now too after my last surgery (I've had quite the year)

I will pass along some advice - I've learned the hard way about some things.....

1. First - educate yourself to your disease - learn what you can, and write down what you learn. It will help when you see your doctors. Take charge of your case - know what you want done.

2. Write down questions that you want answered.

3. Take someone with you to your appointment - sometimes it hard to stand up to a doctor alone or to challenge him/her - having someone else with you really helps.

4. Ask you doctor what his/her experience is with this type of cancer. If they are not up to date with things, or you are not happy with the way your case is being handled insist on being referred to someone who can and will listen to you. Dont be afraid of hurting their feelings - remember - it is your life.

5. Discuss the procedure with the surgeon - what is he going to do? Make sure you understand completely. Again - if he is not an expert ask to be referred to someone with the experience to handle your case properly.

I still get that tight throat feeling if I get worried or angry or tired - its an uncomfortable feeling. Try to do some meditation to relax - not an easy thing at this time, but it may help.

Above all stay strong and believe that you will be ok - come to us anytime - you will get through this!

good luck
andrea

Saritav

amorriso said:

symptoms
Hi. Sorry you are dealing with this, but you've come to the right place for help.I was diagnosed a year ago with papillary thyroid cancer, but many of your sypmtoms are very similar to what I felt. So yes - it can cause pain and odd sensations - my affected lymph nodes were pressing on my jugular vien and nerves - as soon as I had surgery to remove my thyroid and the nodes it went away. I also have had strange ear aches - those are gone now too after my last surgery (I've had quite the year)

I will pass along some advice - I've learned the hard way about some things.....

1. First - educate yourself to your disease - learn what you can, and write down what you learn. It will help when you see your doctors. Take charge of your case - know what you want done.

2. Write down questions that you want answered.

3. Take someone with you to your appointment - sometimes it hard to stand up to a doctor alone or to challenge him/her - having someone else with you really helps.

4. Ask you doctor what his/her experience is with this type of cancer. If they are not up to date with things, or you are not happy with the way your case is being handled insist on being referred to someone who can and will listen to you. Dont be afraid of hurting their feelings - remember - it is your life.

5. Discuss the procedure with the surgeon - what is he going to do? Make sure you understand completely. Again - if he is not an expert ask to be referred to someone with the experience to handle your case properly.

I still get that tight throat feeling if I get worried or angry or tired - its an uncomfortable feeling. Try to do some meditation to relax - not an easy thing at this time, but it may help.

Above all stay strong and believe that you will be ok - come to us anytime - you will get through this!

good luck
andrea

Thank you
Thank you for validating what I'm feeling. It seems like you probably have gone through the same frustrations I am going through. Your tips are very helpful and I'm going to print them out and go through each one of them. I think my mistake has been to go to an ENT surgeon but not a cancer specialist. The pain has driven me to make some mistakes in my decisions by rushing to who would see me first, etc etc rather than experience, and knowledge of my actuAl problem. Tylenol almost doesn't touch the pain, and I'm not taking ibuprofen waiting for this surgery date. I'm highly worn out, and last night in the midst of the intense pain there were moments where your mind takes you places you shouldn't go. I'm trying to keep positive. Thank you for listening.

amorriso

Saritav said:

Thank you
Thank you for validating what I'm feeling. It seems like you probably have gone through the same frustrations I am going through. Your tips are very helpful and I'm going to print them out and go through each one of them. I think my mistake has been to go to an ENT surgeon but not a cancer specialist. The pain has driven me to make some mistakes in my decisions by rushing to who would see me first, etc etc rather than experience, and knowledge of my actuAl problem. Tylenol almost doesn't touch the pain, and I'm not taking ibuprofen waiting for this surgery date. I'm highly worn out, and last night in the midst of the intense pain there were moments where your mind takes you places you shouldn't go. I'm trying to keep positive. Thank you for listening.

pain relief
Its hard dealing with things especially when you are in such pain. Have you tried going to your pharmacists and asking for help? Sometimes they can recommend something that a doctor wouldnt have thought of. It's worth a try maybe

How long until your surgery?

All the best

Saritav

amorriso said:

pain relief
Its hard dealing with things especially when you are in such pain. Have you tried going to your pharmacists and asking for help? Sometimes they can recommend something that a doctor wouldnt have thought of. It's worth a try maybe

How long until your surgery?

All the best

Pain
I actually had a prescription from the emergency room which I had held onto and I took it yesterday and it helped a little but today it's not touching the pain. I was able to get an appointment with an oncologist surgeon for the neck area tomorrow thanks to your tips. I hVe a whole new round of doctors I'm seeing this week. My surgery has been scheduled for December 6. Almost a month away And honestly I don't think I can wait that long. I'm hoping and praying that the surgeon I see tomorrow will be more concerned with my pain and schedule an earlier date. I'm basically holding a pack of ice to my neck and chest all day today. I called the endocrinologist the day after I first wrote here begging them for medication, and actually showed up at their ofice and they told me they couldn't give me anything because they had twenty people waiting. They told me to just go to the emergency room. I told them I had been their three times already. I was devastated. But I had that prescription in my purse and I decided to fill it and also decided to change endocrinologists.

Saritav

Saritav said:

Pain
I actually had a prescription from the emergency room which I had held onto and I took it yesterday and it helped a little but today it's not touching the pain. I was able to get an appointment with an oncologist surgeon for the neck area tomorrow thanks to your tips. I hVe a whole new round of doctors I'm seeing this week. My surgery has been scheduled for December 6. Almost a month away And honestly I don't think I can wait that long. I'm hoping and praying that the surgeon I see tomorrow will be more concerned with my pain and schedule an earlier date. I'm basically holding a pack of ice to my neck and chest all day today. I called the endocrinologist the day after I first wrote here begging them for medication, and actually showed up at their ofice and they told me they couldn't give me anything because they had twenty people waiting. They told me to just go to the emergency room. I told them I had been their three times already. I was devastated. But I had that prescription in my purse and I decided to fill it and also decided to change endocrinologists.

Diagnosis
Hi I wanted to let you know and for future reference for anyone who might go through what I'm going through, I was diagnosed by another endocrinologist as having a form of thyroiditis which causes alot of pain, and he started me on some steroids, and I'm hoping, hoping this is it for the pain. He told me in my case the thyroiditis is coexisting with the nodules, so the nodules weren't causing me pain, the inflammation is. I hope he is right. Either way, I'm so excited and relieved and looking forward to some relief. I still have to have surgery for the final biopsy, hopefully my wait from now on is a painless one. Thanks Andrea for your guidance!

sunnyaz

Saritav said:

Diagnosis
Hi I wanted to let you know and for future reference for anyone who might go through what I'm going through, I was diagnosed by another endocrinologist as having a form of thyroiditis which causes alot of pain, and he started me on some steroids, and I'm hoping, hoping this is it for the pain. He told me in my case the thyroiditis is coexisting with the nodules, so the nodules weren't causing me pain, the inflammation is. I hope he is right. Either way, I'm so excited and relieved and looking forward to some relief. I still have to have surgery for the final biopsy, hopefully my wait from now on is a painless one. Thanks Andrea for your guidance!

Hi Saritav
If your surgery is a month away there is no reason you can't take an anti-inflammatory. You should stop any medications that can thin the blood about three to four days before your surgery. Can't understand why they won't let you take Ibuprofen or something else for inflammation for your pain since that is the main cause of it.

I am sorry you have to go through this. I know how hard it is. I have been through three surgeries and two RAI treatments. My ENT did my first two surgeries and botched the second one causing my Endo to switch me to a new surgeon. The ENT basically missed the targeted nodes on the second surgery so I had to have a third surgery and a second RAI treatment due to his incompetence. It's good that you have an Oncologist now, such a blessing.

Hoping you can get into surgery sooner and keeping you in my prayers.

Blessings,
Julie-SunnyAZ

Saritav

sunnyaz said:

Hi Saritav
If your surgery is a month away there is no reason you can't take an anti-inflammatory. You should stop any medications that can thin the blood about three to four days before your surgery. Can't understand why they won't let you take Ibuprofen or something else for inflammation for your pain since that is the main cause of it.

I am sorry you have to go through this. I know how hard it is. I have been through three surgeries and two RAI treatments. My ENT did my first two surgeries and botched the second one causing my Endo to switch me to a new surgeon. The ENT basically missed the targeted nodes on the second surgery so I had to have a third surgery and a second RAI treatment due to his incompetence. It's good that you have an Oncologist now, such a blessing.

Hoping you can get into surgery sooner and keeping you in my prayers.

Blessings,
Julie-SunnyAZ

Thanks Julie, I appreciate
Thanks Julie, I appreciate your thoughts and prayers. I am actually on my second round of steroids. My first pack seemed to help a little but still having alot of pain. Starting my second round and this time I will take for 20 days, and my surgeon just called in some pain medication. I hope they got this right. It seems a little better, but pain is intense today, not sure why. Yesterday seemed to be better. Surgery is closer, so taking it a day at a time. But it's better, and this is good news. I have a pack of ice on my neck and chest right now which helps.

I'm sorry about what you are going through with your surgeries. Very scary. Finding a good doctor and surgeon is such a challenge, and we already have alot on our hands with being sick, with being in pain. But I'm glad your doctor referred you to a new surgeon. I hope you are well now.

Sara

Saritav

sunnyaz said:

Hi Saritav
If your surgery is a month away there is no reason you can't take an anti-inflammatory. You should stop any medications that can thin the blood about three to four days before your surgery. Can't understand why they won't let you take Ibuprofen or something else for inflammation for your pain since that is the main cause of it.

I am sorry you have to go through this. I know how hard it is. I have been through three surgeries and two RAI treatments. My ENT did my first two surgeries and botched the second one causing my Endo to switch me to a new surgeon. The ENT basically missed the targeted nodes on the second surgery so I had to have a third surgery and a second RAI treatment due to his incompetence. It's good that you have an Oncologist now, such a blessing.

Hoping you can get into surgery sooner and keeping you in my prayers.

Blessings,
Julie-SunnyAZ

Surgery
Thanks Julie, I appreciate your thoughts and prayers. I am actually on my second round of steroids. My first pack seemed to help a little but still having alot of pain. Starting my second round and this time I will take for 20 days, and my surgeon just called in some pain medication. I hope they got this right. It seems a little better, but pain is intense today, not sure why. Yesterday seemed to be better. Surgery is closer, so taking it a day at a time. But it's better, and this is good news. I have a pack of ice on my neck and chest right now which helps.

I'm sorry about what you are going through with your surgeries. Very scary. Finding a good doctor and surgeon is such a challenge, and we already have alot on our hands with being sick, with being in pain. But I'm glad your doctor referred you to a new surgeon. I hope you are well now.

Sara

JJ_2011

some good questions you can ask along the way
Hi Saritav,

I was initially diagnosed with Hurthle cell in Feb 2011 after my FNA and downgraded to Papillary once the surgery was complete March 2011. Stay positive you will get thru this! I agree with the Amorriso's comment to make sure you take good notes as well as formulate your questions prior to meeting with a doctor.

Here are a few I used during my visits:
1) how often is a Hurthle cell nodular classified as benign once removed?
2) Ask for a story of a nodular or tumor that was a similar size?
3) Correlation between any other symptoms ear ache/gland swelling?
4) is it better to have a cold, warm, or hot nodular?
5) temporary hair loss?
6) do I need to assemble my team: head and neck surgeon, a radiology oncologist, a medical oncologist and an endocrinologist, as well as my primary care physician?
7) full or partial thyroid removal (benefits, cons)
8) How often have they performed partial or total thyroidectemy?
9) complication rates?
10) do younger patients experience a higher rate of metastasis?
11) diet leading up to surgery?
12) reoccurrence in men vs. women?
13) yearly number or % of patients who beat HC?
14) what are the stages?
15) any firm findings re: seeding correlated to glands immediately after FNA?
16) are any of your patients in clinical trials?
17) FNA: false positives? whats the protocol?
20) PET scan to ensure no Metastasis?

Saritav

JJ_2011 said:

some good questions you can ask along the way
Hi Saritav,

I was initially diagnosed with Hurthle cell in Feb 2011 after my FNA and downgraded to Papillary once the surgery was complete March 2011. Stay positive you will get thru this! I agree with the Amorriso's comment to make sure you take good notes as well as formulate your questions prior to meeting with a doctor.

Here are a few I used during my visits:
1) how often is a Hurthle cell nodular classified as benign once removed?
2) Ask for a story of a nodular or tumor that was a similar size?
3) Correlation between any other symptoms ear ache/gland swelling?
4) is it better to have a cold, warm, or hot nodular?
5) temporary hair loss?
6) do I need to assemble my team: head and neck surgeon, a radiology oncologist, a medical oncologist and an endocrinologist, as well as my primary care physician?
7) full or partial thyroid removal (benefits, cons)
8) How often have they performed partial or total thyroidectemy?
9) complication rates?
10) do younger patients experience a higher rate of metastasis?
11) diet leading up to surgery?
12) reoccurrence in men vs. women?
13) yearly number or % of patients who beat HC?
14) what are the stages?
15) any firm findings re: seeding correlated to glands immediately after FNA?
16) are any of your patients in clinical trials?
17) FNA: false positives? whats the protocol?
20) PET scan to ensure no Metastasis?

Good list of questions
Thank you so much for your list of questions. I have been thinking what I should ask the surgeon on my preop visit with him next week. The surgery is now two weeks away, thank goodness. I'm still in pain. I have some good days, and then bad days. Yesterday was good, today is bad. Hopefully that means tomorrow is good. Let's say it's gonna be good, since I do want to remain positive. My regular doctor's assistant who saw me this week says my thyroid is more swollen than before, and my lymph nodes are swollen as well now.

I will print your list out for sure, and ask him these questions. The pain drives me crazy, and I just want to get this behind me. 2 weeks to go. Thanks to everyone for your support. I really appreciate it.

Saritav

Saritav said:

Good list of questions
Thank you so much for your list of questions. I have been thinking what I should ask the surgeon on my preop visit with him next week. The surgery is now two weeks away, thank goodness. I'm still in pain. I have some good days, and then bad days. Yesterday was good, today is bad. Hopefully that means tomorrow is good. Let's say it's gonna be good, since I do want to remain positive. My regular doctor's assistant who saw me this week says my thyroid is more swollen than before, and my lymph nodes are swollen as well now.

I will print your list out for sure, and ask him these questions. The pain drives me crazy, and I just want to get this behind me. 2 weeks to go. Thanks to everyone for your support. I really appreciate it.

Update
Well I had my surgery last week and the good news is that my hurthle cell was benign. Unfortunately, the pain has returned. I'm on ibuprofen and Valium but the pain is still intense. Thanks to all of you for your support. My surgeon mentioned the possibility of the nerves on my carotid artery being inflamed. I'm trying to stay positive, and trying to learn to live with this intense pain. It's not easy, but hopefully we ar closer to the answers.