Exhausted 3 Weeks After Lobectomy
Comments
-
ok let me try to english up the doctorese
Papillary cancer with follicular characteristics.
There is Papillary cancer in the thyroid tissue they tested
-------- cut and paste---------
75% to 85% of all thyroid cancer cases are Papillary
-----------
Be sure your tested for BRAF mutation.
-------- cut and paste---------
Approximately a third to a half of papillary thyroid carcinomas harbor point mutations in the BRAF oncogene.
-------
When they said " fine needle biopsy determined was a tumor that had the potential to be a follicular neoplasm. " they were thinking of follicular cancer (another type of thyroid cancer) 2nd most common.
Ok the follicular characteristics part... i think that means it looks like a mix of papillary and follicular cancers... (Very common)
The reason you are tired is probably because the remaining thyroid tissue you have is not making up for what the body needs. Hate to say it but it’s as normal as it gets. Once they remove the remaining thyroid they will probably put you on "Cytomel" a thyroid replacement hormone (T3) this will be a short term while they discuss with you if you are going to go through Radioactive Iodine treatment to kill off any remaining thyroid tissue. Hopefully they will be able to give you Thyrogen shots (beg for them if you have to) so you won’t have to go off thyroid replacement hormones... and they will discuss about you going onto a LOW IODINE DIET... go to www.thyca.org for their LID it is probably the most helpful about how to do it.
Reading your post again your mentioning Levothyroxine (synthroid) so are they putting you on synthroid right away (if so it probably means they are planning Thyrogen shots).
For myself I didn’t get a rundown feeling till they removed the rest of my thyroid, but yep.
I also suggest you find a local cancer support group or such... I have found mine helps me a lot
also ask as many questions as you can here we are all teaching ourselves about it while we discuss and eveyone seems to come up with at least 1 new good question for the rest of us here to ask our doctors.
Go to www.thyca.org they have a lot of good info there as well.
How is your family support?
Dose your work understand and support you?
Have you wanted to kill the doctors for mentioning something like you got a good cancer or you won the cancer lottery or some of that other junk?
Read this site as well we have a lot of experiences my entire story for the first year is probably on page 2 or 3 I had papillary and follicular cancers.
MAKE LOTS OF NOTES AND WRITE DOWN YOUR QUESTIONS.
Trust me you are going to notice soon (if you haven't already) that your mind is in a brain fog so you will need to make notes of anything and everything you think is important cause until they get you on thyroid replacement and it semi close to right you will be using your alt brain or yellow sticky brain.
for the first year I just wrote in a text file every day about things... about 3 months in i looked back and realized that didn’t remember over 1/2 of what I wrote.
Teach your family and friends and co-workers about thyroid cancer and find someone to talk to about anything/everything.
You might also need/want to think of seeing a psychiatrist... It helped me, but either way you’re going through a lot of changes and it might just add a little stress...
Ask for a copy of the report stating what you were diagnosed with... once you have your entire thyroid out and are on your way to recovery you are going to want to become an expert on your body as well as how to read doctors notes and your lab reports.
Once on the road to recovery you are going to want to get all of your medical record as well as all lab results. we can help you understand what all the notes and such say.
Please keep us up to date on what’s happening with you. Myself I am 1 year 1 month out from RAI treatment and have a clean scan from 1 year out.
Ask us as many questions as you can. DO NOT worry about it being a silly or stupid or whatever question.
Realize that more women get this cancer than men. So be sure to state that your male or put your name out or something.. Or don’t take offense when people assume you are female.
I am still having a bit of a rundown feeling but I also have other medical issues that complicate the case.
If you don’t understand what the doctor is telling you ask him/her to explain it better or ask as many questions as you can. Like what stage of cancer is it and what dose that mean.
Remember you are a survivor.
Find some humor in something cause trust me it helps... for me anytime a doctor says I’m lucky cause of the Cancer I ask if they want a transplant of my thyroid tissue. Ok it’s a bad joke but it at least gets them thinking that they might not have stated it well
please keep us informed and please ask questions
Craig
(edited because I forgot to spellcheck)0 -
Welcome to the Throid Cancer Boards
Our Thyroid guru; Craig (nasher) said it all. We have all had this experience you are describing. Mostly very typical for Thyroid cancer. Nobody but another Thyroid cancer patient will understand what you are experiencing. Our male survivors are Craig (nasher) and Alan (baldy).
I am a female Papillary cancer survivor with metastasis to the lymph nodes. Three surgeries and two Radioactive Iodine treatments from age 41 to 43. I have pretty much maxed out my RAI treatments. I am also B-RAF positive as Craig mentioned in his response. B-RAF makes my cancer more aggressive, harder to treat and faster growing. I am being kept hyperthyroid with a TSH (Thyroid Stimulating Hormone) level of 0.4 and holding. My Endocrinologist wants me there for at least three years since my last recurrence (which was in December 2010). Your Synthroid level will depend on your weight mostly. I am at 175 mcg's daily and I'm 170 pounds.
I gained a lot of weight before my diagnosis even though I was very athletic. Fifty plus pounds! I am always run down, exhausted and restless at night. I take OTC sleeping pills along with Valium to help me sleep. I have night terrors and have had them since my symptoms of cancer began and before I was even diagnosed. Can't seem to shake them but with the meds at least I don't remember most of them. I drink ALOT of coffee to get moving in the morning. I work in the medical field so there is no room for inattentiveness. I must be alert at all times because people (just like you) trust me with their life. I am total drained physically and mentally at the end of an 8-10 hour shift. On the weekends I sleep as much as I can and laugh as often as possible. I try to work out to help with my mental and physical well being and in hopes of someday dropping off the extra weight I gained. I have about thirty pounds to go to get back to where I was before my diagnosis.
So, you are not alone. Most of us are in, or have been in the same boat you are. The waves on that ocean can get pretty rough; but hold on tight and keep paddling. Try to stay as healthy as you can. Breath deep (0xygen is good for killing cancer cells), laugh and keep a positive attitude. You are going to be fine but you will probably never be the same as you were before. But you will find a happy medium and you will come out smarter and stronger for what you will go through. We are all here to help and wish you the very best outcome. Your best support and cheer team are here on line. Always feel free to vent or ask us questions.
Blessings,
Julie-SunnyAZ0 -
Thanks Craignasher said:ok let me try to english up the doctorese
Papillary cancer with follicular characteristics.
There is Papillary cancer in the thyroid tissue they tested
-------- cut and paste---------
75% to 85% of all thyroid cancer cases are Papillary
-----------
Be sure your tested for BRAF mutation.
-------- cut and paste---------
Approximately a third to a half of papillary thyroid carcinomas harbor point mutations in the BRAF oncogene.
-------
When they said " fine needle biopsy determined was a tumor that had the potential to be a follicular neoplasm. " they were thinking of follicular cancer (another type of thyroid cancer) 2nd most common.
Ok the follicular characteristics part... i think that means it looks like a mix of papillary and follicular cancers... (Very common)
The reason you are tired is probably because the remaining thyroid tissue you have is not making up for what the body needs. Hate to say it but it’s as normal as it gets. Once they remove the remaining thyroid they will probably put you on "Cytomel" a thyroid replacement hormone (T3) this will be a short term while they discuss with you if you are going to go through Radioactive Iodine treatment to kill off any remaining thyroid tissue. Hopefully they will be able to give you Thyrogen shots (beg for them if you have to) so you won’t have to go off thyroid replacement hormones... and they will discuss about you going onto a LOW IODINE DIET... go to www.thyca.org for their LID it is probably the most helpful about how to do it.
Reading your post again your mentioning Levothyroxine (synthroid) so are they putting you on synthroid right away (if so it probably means they are planning Thyrogen shots).
For myself I didn’t get a rundown feeling till they removed the rest of my thyroid, but yep.
I also suggest you find a local cancer support group or such... I have found mine helps me a lot
also ask as many questions as you can here we are all teaching ourselves about it while we discuss and eveyone seems to come up with at least 1 new good question for the rest of us here to ask our doctors.
Go to www.thyca.org they have a lot of good info there as well.
How is your family support?
Dose your work understand and support you?
Have you wanted to kill the doctors for mentioning something like you got a good cancer or you won the cancer lottery or some of that other junk?
Read this site as well we have a lot of experiences my entire story for the first year is probably on page 2 or 3 I had papillary and follicular cancers.
MAKE LOTS OF NOTES AND WRITE DOWN YOUR QUESTIONS.
Trust me you are going to notice soon (if you haven't already) that your mind is in a brain fog so you will need to make notes of anything and everything you think is important cause until they get you on thyroid replacement and it semi close to right you will be using your alt brain or yellow sticky brain.
for the first year I just wrote in a text file every day about things... about 3 months in i looked back and realized that didn’t remember over 1/2 of what I wrote.
Teach your family and friends and co-workers about thyroid cancer and find someone to talk to about anything/everything.
You might also need/want to think of seeing a psychiatrist... It helped me, but either way you’re going through a lot of changes and it might just add a little stress...
Ask for a copy of the report stating what you were diagnosed with... once you have your entire thyroid out and are on your way to recovery you are going to want to become an expert on your body as well as how to read doctors notes and your lab reports.
Once on the road to recovery you are going to want to get all of your medical record as well as all lab results. we can help you understand what all the notes and such say.
Please keep us up to date on what’s happening with you. Myself I am 1 year 1 month out from RAI treatment and have a clean scan from 1 year out.
Ask us as many questions as you can. DO NOT worry about it being a silly or stupid or whatever question.
Realize that more women get this cancer than men. So be sure to state that your male or put your name out or something.. Or don’t take offense when people assume you are female.
I am still having a bit of a rundown feeling but I also have other medical issues that complicate the case.
If you don’t understand what the doctor is telling you ask him/her to explain it better or ask as many questions as you can. Like what stage of cancer is it and what dose that mean.
Remember you are a survivor.
Find some humor in something cause trust me it helps... for me anytime a doctor says I’m lucky cause of the Cancer I ask if they want a transplant of my thyroid tissue. Ok it’s a bad joke but it at least gets them thinking that they might not have stated it well
please keep us informed and please ask questions
Craig
(edited because I forgot to spellcheck)
Thanks for the response. It's reassuring to hear that other people have experienced similar things. I'm really fortunate because both my family and workplace have been extremely supportive and accomodating throughout this process up to this point. I go in tomorrow to have the other half of my thyroid removed so I'm naturally a little anxious, but I'm very comfortable with my surgeon as he's pretty highly regarded. I knew nothing about the BRAF mutation, but I will be certain to ask. My father has sat in on all my appointments up to this point and has asked a lot of questions I've failed to. I think the thing people at work and even my girlfriend have failed to fully understand is how tired I am. I'm hoping getting my medication right over the next few months isn't so much of an arduous process because I've always been a really active person. Just last month I ran a 10-Mile race with my brother, but now I get tired going for a couple mile walk. I'm just taking one day at a time. I'm glad to hear that your scan was A-Okay...it definitely gives me hope that all will be fine. I'll let you know how tomorrow goes. Thanks again for getting back to me. Have a great week!
-Joe0 -
Thanks Juliesunnyaz said:Welcome to the Throid Cancer Boards
Our Thyroid guru; Craig (nasher) said it all. We have all had this experience you are describing. Mostly very typical for Thyroid cancer. Nobody but another Thyroid cancer patient will understand what you are experiencing. Our male survivors are Craig (nasher) and Alan (baldy).
I am a female Papillary cancer survivor with metastasis to the lymph nodes. Three surgeries and two Radioactive Iodine treatments from age 41 to 43. I have pretty much maxed out my RAI treatments. I am also B-RAF positive as Craig mentioned in his response. B-RAF makes my cancer more aggressive, harder to treat and faster growing. I am being kept hyperthyroid with a TSH (Thyroid Stimulating Hormone) level of 0.4 and holding. My Endocrinologist wants me there for at least three years since my last recurrence (which was in December 2010). Your Synthroid level will depend on your weight mostly. I am at 175 mcg's daily and I'm 170 pounds.
I gained a lot of weight before my diagnosis even though I was very athletic. Fifty plus pounds! I am always run down, exhausted and restless at night. I take OTC sleeping pills along with Valium to help me sleep. I have night terrors and have had them since my symptoms of cancer began and before I was even diagnosed. Can't seem to shake them but with the meds at least I don't remember most of them. I drink ALOT of coffee to get moving in the morning. I work in the medical field so there is no room for inattentiveness. I must be alert at all times because people (just like you) trust me with their life. I am total drained physically and mentally at the end of an 8-10 hour shift. On the weekends I sleep as much as I can and laugh as often as possible. I try to work out to help with my mental and physical well being and in hopes of someday dropping off the extra weight I gained. I have about thirty pounds to go to get back to where I was before my diagnosis.
So, you are not alone. Most of us are in, or have been in the same boat you are. The waves on that ocean can get pretty rough; but hold on tight and keep paddling. Try to stay as healthy as you can. Breath deep (0xygen is good for killing cancer cells), laugh and keep a positive attitude. You are going to be fine but you will probably never be the same as you were before. But you will find a happy medium and you will come out smarter and stronger for what you will go through. We are all here to help and wish you the very best outcome. Your best support and cheer team are here on line. Always feel free to vent or ask us questions.
Blessings,
Julie-SunnyAZ
Hey Julie...Thanks for the positive words. My situation was kind of interesting because I didn't have any symptoms onesoever. I simply had a dilligent doctor find a little lump on my gland and suggested I get it looked at by a specialist. Turned out to be cancer unfortunately. I like to think of myself as a pretty positive person, but this whole ordeal has felt more like an out of body experience than anything else. I feel like my family and friends have taken on the bulk of the stress and I sort of feel a little guilty about that, but at the same time it feels nice to be cared for and loved. Talking to people like yourself and Craig puts me at ease on a different level because you guys have been through it. I definitely appreciate it. Tomorrow is the second surgery so I'm looking forward to having it behind me. Best of luck to you in your journey as well. I'll be sure to let you guys know how I'm doing along the way!0 -
...sunnyaz said:Welcome to the Throid Cancer Boards
Our Thyroid guru; Craig (nasher) said it all. We have all had this experience you are describing. Mostly very typical for Thyroid cancer. Nobody but another Thyroid cancer patient will understand what you are experiencing. Our male survivors are Craig (nasher) and Alan (baldy).
I am a female Papillary cancer survivor with metastasis to the lymph nodes. Three surgeries and two Radioactive Iodine treatments from age 41 to 43. I have pretty much maxed out my RAI treatments. I am also B-RAF positive as Craig mentioned in his response. B-RAF makes my cancer more aggressive, harder to treat and faster growing. I am being kept hyperthyroid with a TSH (Thyroid Stimulating Hormone) level of 0.4 and holding. My Endocrinologist wants me there for at least three years since my last recurrence (which was in December 2010). Your Synthroid level will depend on your weight mostly. I am at 175 mcg's daily and I'm 170 pounds.
I gained a lot of weight before my diagnosis even though I was very athletic. Fifty plus pounds! I am always run down, exhausted and restless at night. I take OTC sleeping pills along with Valium to help me sleep. I have night terrors and have had them since my symptoms of cancer began and before I was even diagnosed. Can't seem to shake them but with the meds at least I don't remember most of them. I drink ALOT of coffee to get moving in the morning. I work in the medical field so there is no room for inattentiveness. I must be alert at all times because people (just like you) trust me with their life. I am total drained physically and mentally at the end of an 8-10 hour shift. On the weekends I sleep as much as I can and laugh as often as possible. I try to work out to help with my mental and physical well being and in hopes of someday dropping off the extra weight I gained. I have about thirty pounds to go to get back to where I was before my diagnosis.
So, you are not alone. Most of us are in, or have been in the same boat you are. The waves on that ocean can get pretty rough; but hold on tight and keep paddling. Try to stay as healthy as you can. Breath deep (0xygen is good for killing cancer cells), laugh and keep a positive attitude. You are going to be fine but you will probably never be the same as you were before. But you will find a happy medium and you will come out smarter and stronger for what you will go through. We are all here to help and wish you the very best outcome. Your best support and cheer team are here on line. Always feel free to vent or ask us questions.
Blessings,
Julie-SunnyAZ
Woot I have been promoted to Guru.....
Yes a lot of people will not understand, but there are some people besides thyroid cancer people who will... Unfortunately most of them are having major medical issues of one sort or another.
Every now and then I have boughs of depression (about 1 a month) my wife helps me though them. My wife is very understanding and most of my co workers are as well.
I normally drink 1 energy drink a day (morning) and some caffeine through the day to keep me going... Yes an 8 hour work day wears me out... I don’t know how you can do a 10 hour Julie...
Prior to being diagnosed I gained 70+ lbs and another 10 or so throughout the treatment phase... I think i may have managed to lose 1 or 2 of them.... ~78 to go...
I was restless at night and I still am... Luckily I don’t have night terrors...
I was on valium for a few weeks.... um... I think it should be renamed damn-it-all because someone could probably say they were going to cut your leg off and you would say... ok... And want to watch!
As for weight loss... for me it’s going to have to be the drastic way probably... in December time frame they are going to start me on the path for gastric bypass surgery (takes 3-12 months to get through the pre classes and can’t start them till I’m retired from the navy hence December.)
I don’t know about everyone else but I have tended to have more friends now that are physically disabled or going through a series of medical issues because we understand and don’t judge each other.
Yes Julie is right stay as fit as you can ... Looking at me I may not look that fit but I can jog 4+ miles then do a 6-8 hour work day... 5 times a week (that’s the military).
I have found stress relief and meditation classes helped me also... Right now with my vertigo issues I cannot do Yoga but I try to do Tai-chi as often as I can.
Also realize you are probably going to find out who your real friends are through this.
Yes you will be fine... Yes you are a survivor. Please vent and please ask the questions so we all can learn.
Craig
... Edited because I forgot that silly spell check... AGAIN0 -
Good luck on your surgerySummers2Enjoy said:Thanks Craig
Thanks for the response. It's reassuring to hear that other people have experienced similar things. I'm really fortunate because both my family and workplace have been extremely supportive and accomodating throughout this process up to this point. I go in tomorrow to have the other half of my thyroid removed so I'm naturally a little anxious, but I'm very comfortable with my surgeon as he's pretty highly regarded. I knew nothing about the BRAF mutation, but I will be certain to ask. My father has sat in on all my appointments up to this point and has asked a lot of questions I've failed to. I think the thing people at work and even my girlfriend have failed to fully understand is how tired I am. I'm hoping getting my medication right over the next few months isn't so much of an arduous process because I've always been a really active person. Just last month I ran a 10-Mile race with my brother, but now I get tired going for a couple mile walk. I'm just taking one day at a time. I'm glad to hear that your scan was A-Okay...it definitely gives me hope that all will be fine. I'll let you know how tomorrow goes. Thanks again for getting back to me. Have a great week!
-Joe
Good luck on your surgery tomorrow! I was hoping my medicine would be leveled out quickly but as I'm learning it's a long process. I had my TT 2 1/2 months ago and I'm still experiencing all the symptoms because I'm still extremely hypo. All that Julie described in her response to you. I was a very active person too and did 2 spin classes a week and would run 20-30 miles a week & I completed a 1/2 marathon last November. I was hoping to train for the full marathon this year but then got this lovely cancer diagnosis and now my activity is moving from one side of the couch to the next. Keep posting and reading on this board because the people on here like Craig, Alan and Julie are very knowledgable and you will also not feel alone. I have a great co-worker of mine that is on thyroid medication so she knows exactly what I'm going through and I talk to her all the time and cry in her office (like today) when I'm having my really bad days.
Barbara0 -
Depressionnasher said:...
Woot I have been promoted to Guru.....
Yes a lot of people will not understand, but there are some people besides thyroid cancer people who will... Unfortunately most of them are having major medical issues of one sort or another.
Every now and then I have boughs of depression (about 1 a month) my wife helps me though them. My wife is very understanding and most of my co workers are as well.
I normally drink 1 energy drink a day (morning) and some caffeine through the day to keep me going... Yes an 8 hour work day wears me out... I don’t know how you can do a 10 hour Julie...
Prior to being diagnosed I gained 70+ lbs and another 10 or so throughout the treatment phase... I think i may have managed to lose 1 or 2 of them.... ~78 to go...
I was restless at night and I still am... Luckily I don’t have night terrors...
I was on valium for a few weeks.... um... I think it should be renamed damn-it-all because someone could probably say they were going to cut your leg off and you would say... ok... And want to watch!
As for weight loss... for me it’s going to have to be the drastic way probably... in December time frame they are going to start me on the path for gastric bypass surgery (takes 3-12 months to get through the pre classes and can’t start them till I’m retired from the navy hence December.)
I don’t know about everyone else but I have tended to have more friends now that are physically disabled or going through a series of medical issues because we understand and don’t judge each other.
Yes Julie is right stay as fit as you can ... Looking at me I may not look that fit but I can jog 4+ miles then do a 6-8 hour work day... 5 times a week (that’s the military).
I have found stress relief and meditation classes helped me also... Right now with my vertigo issues I cannot do Yoga but I try to do Tai-chi as often as I can.
Also realize you are probably going to find out who your real friends are through this.
Yes you will be fine... Yes you are a survivor. Please vent and please ask the questions so we all can learn.
Craig
... Edited because I forgot that silly spell check... AGAIN
I suggested to the web site people they should create a new discussion board for dealing with depression some time ago, but they didn't reply. It seems to me to be a very common problem for us.
I have some prior experience with depression. 20 years ago I developed tinnitus {constant ringing in the ears} and was probably clinically depressed for a while afterwards, though I was never diagnosed as such since I never saw anyone for depression. While it was a very bad time for me, it certainly helped prepare me for this. I guess my experience was not unusual, so I'll talk some about it here, hopefully someone will benefit.
Even though I was aware what was wrong, I didn't want to be told by anyone else I had a problem. I became very angry when one of my family tried to talk to me about it. In retrospect, I think this was because I didn't want anyone to worry about me. I certainly did my best to try and hide that I was depressed. I guess I got angry because they saw through my disguise.
Eventually I was able to pull myself out of it. There were two "tricks" I used. If you can't sleep, get out of bed and do something, don't lie there thinking. Get as much exercise as possible. I think there is a body chemistry component of depression and I think exercise helps eliminate it. The more depressed you get - the less you do - the less you do - the more depressed you get ... a vicious cycle. The exercise will also help you sleep and sleep more effectively so that you actually sleep less.
The other aspect of my self healing was getting angry with myself for being depressed. I finally said, "STOP! ... Enough is Enough!" Unfortunately, it took me a while to get that far. It wasn't until my anger appeared that I was able to make my "tricks" work for me. Or in other words, my anger made sure I got out of bed and I exercised.
It's not easy, but I think if you're aware that depression is a reasonable side effect of cancer and you can recognize it for what it is, you're better able to fight it. Now I'm able to use my "tricks" without needing anger as motivation.
Alan
PS Writing this has helped me, so I guess someone benefitted. I just learned I may have lung metastasis. Hopefully not, I did the TB/Isoniazid treatment regimen 30 years ago and the scan may be showing the encapsulated TB nodules.0
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