CancerCompass message board discussion started by PLS444 on 5/7/2008 http://www.cancercompass.com/message-board/message/all,23826,0.htm Sat, 30 Aug 2008 00:00:00 GMT Sat, 30 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I found out I had thyroid cancer three weeks ago yesterday. I had surgery a week ago yesterday and am already back at work feeling great. I had a total thyroidectomy last Tuesday. I got my stitches out on Monday and other than some itching at the scar, I feel pretty good. I always went to bed early and slept lots so my sleeping is still about 8-10 hours a night depending. I am a single mom of a 2 1/2 year old and am the only parent involved. I have the most amazing friends and family who have helped take care of my son throughout the past 10 days and continue to help until the doctor says I can lift him up again. (sometime next week)Ok, so I have been totally positive about everything. I felt nervous before the surgery, but who wouldn't? I haven't gotten scared or worried or anything as everyone says this is the cancer to have it you have to have cancer. (as if anyone wants it...) I am a giant chicken and faint easily from fear, but have been great throughout all of this. I got a PET scan a few days before my surgery and it showed that the cancer had not spread. I was very happy to hear that. Now, today I went to see the surgeon to go over the pathology report and I am SCARED! He said they took out 4 of 7 of my lymph nodes and they had cancer. He said that my endo will work with me on the RAI and that will take care of anything else left.  I know this might sound silly, but I am wondering why he didn't tell me he took out lymph nodes after the surgery? He did come in and talk to me and told me my thyroid was really big and the tumor was very solid so my incision is on the large side as it was all behind lots of "stuff" and they had to work hard to get the thyroid and tumor out. Why wouldn't he have told me that they also took lymph nodes out? I know it doesn't really matter what I was told that day and I am guessing they took them out just in case and sent to pathology to find out if they had cancer and then told me yes once they found out? Does any of that matter or am I obsessing because I am finally kinda scared?Next, I am meeting tomorrow with my endo who I have not seen or spoken to since before my surgery. He said he was coming to the hospital to see me but never did. He is supposed to be a great endo here in Los Angeles, but I am not feeling that we are a team in this fight. I had spoken to him of my concerns before the surgery about going hypo for the weeks before the RAI and asked about other options. He was not receptive at all about that. I explained that I am work full time and am a single mom to a very young child and staying home for 2 weeks as well as finding someone to watch my son is not something I can do if I could possibly avoid it. He just kept saying that I hve to go totally hypo and that while it is not easy I have to do it. Then I read all over these boards about thyrogen injections and that sounds like a much better option. I also mentioned that to my surgeon today and he said that thyrogen is a great option and he also said there is a way to go on another thyroid med which is a low dosage so that I can function but will still prepare my levels for the RAI. I guess my question here is, am I wrong to want to ask my endo if he is in this with me? This is for the rest of my life and I can't be worried that my doctor is not hearing me or not interested, right? Next, my fear today after reading the pathology report is, if they took out 4 of 7 lymph nodes and those had cancer, couldn't the other 3 also have cancer? Couldn't it be somewhere else hiding as well? I mean if nothing showed up on the PET scan but the 4 lymph nodes they took out had cancer, clearly, the PET scan missed it? Can the cancer come back after RAI or are we safe? How do we prevent it from coming back? If it does come back, it is more dangerous?Sorry so many questions, I am finally scared and finally realized that I might still have cancer. Thank you- Paige PLS444 Wed, 07 May 2008 00:00:00 GMT  On 5/7/2008 PLS444 wrote:I found out I had thyroid cancer three weeks ago yesterday. I had surgery a week ago yesterday and am already back at work feeling great. I had a total thyroidectomy last Tuesday. I got my stitches out on Monday and other than some itching at the scar, I feel pretty good. I always went to bed early and slept lots so my sleeping is still about 8-10 hours a night depending. I am a single mom of a 2 1/2 year old and am the only parent involved. I have the most amazing friends and family who have helped take care of my son throughout the past 10 days and continue to help until the doctor says I can lift him up again. (sometime next week)Ok, so I have been totally positive about everything. I felt nervous before the surgery, but who wouldn't? I haven't gotten scared or worried or anything as everyone says this is the cancer to have it you have to have cancer. (as if anyone wants it...) I am a giant chicken and faint easily from fear, but have been great throughout all of this. I got a PET scan a few days before my surgery and it showed that the cancer had not spread. I was very happy to hear that. Now, today I went to see the surgeon to go over the pathology report and I am SCARED! He said they took out 4 of 7 of my lymph nodes and they had cancer. He said that my endo will work with me on the RAI and that will take care of anything else left.  I know this might sound silly, but I am wondering why he didn't tell me he took out lymph nodes after the surgery? He did come in and talk to me and told me my thyroid was really big and the tumor was very solid so my incision is on the large side as it was all behind lots of "stuff" and they had to work hard to get the thyroid and tumor out. Why wouldn't he have told me that they also took lymph nodes out? I know it doesn't really matter what I was told that day and I am guessing they took them out just in case and sent to pathology to find out if they had cancer and then told me yes once they found out? Does any of that matter or am I obsessing because I am finally kinda scared?Next, I am meeting tomorrow with my endo who I have not seen or spoken to since before my surgery. He said he was coming to the hospital to see me but never did. He is supposed to be a great endo here in Los Angeles, but I am not feeling that we are a team in this fight. I had spoken to him of my concerns before the surgery about going hypo for the weeks before the RAI and asked about other options. He was not receptive at all about that. I explained that I am work full time and am a single mom to a very young child and staying home for 2 weeks as well as finding someone to watch my son is not something I can do if I could possibly avoid it. He just kept saying that I hve to go totally hypo and that while it is not easy I have to do it. Then I read all over these boards about thyrogen injections and that sounds like a much better option. I also mentioned that to my surgeon today and he said that thyrogen is a great option and he also said there is a way to go on another thyroid med which is a low dosage so that I can function but will still prepare my levels for the RAI. I guess my question here is, am I wrong to want to ask my endo if he is in this with me? This is for the rest of my life and I can't be worried that my doctor is not hearing me or not interested, right? Next, my fear today after reading the pathology report is, if they took out 4 of 7 lymph nodes and those had cancer, couldn't the other 3 also have cancer? Couldn't it be somewhere else hiding as well? I mean if nothing showed up on the PET scan but the 4 lymph nodes they took out had cancer, clearly, the PET scan missed it? Can the cancer come back after RAI or are we safe? How do we prevent it from coming back? If it does come back, it is more dangerous?Sorry so many questions, I am finally scared and finally realized that I might still have cancer. Thank you- PaigeHi PaigeI will try to help with the information I have gathered from going through this with my husband. I am sure others here can fill in the gaps too. I was wondering if your pathology report said that of the 7 nodes removed, 4 were positive for cancer. Could that be what it said? My husband's path report said of the 4 nodes removed, 2 were positive. (had cancer). I can tell you what his surgeon said about removing nodes. "If they look even remotely suspicious, I will remove them." If that was all your surgeon took, it is likely that was all he/she saw fit to take. I am not sure about this but I think it's common practice to remove nodes at the time of removing a confirmed cancer. I do know that my husband's surgeon told us all about that before she ever went in so it's too bad that you weren't properly informed about it.  I have heard 2 sides about RAI with med withdrawl vs. the injections. One said that for the first time out, med withdrawl is the gold standard and works best. Others have said that's basically hogwash and there's no need to torture people. I would talk with the endo and find out the specific reasons why you can't do the injections and then get a second opinion in the meantime. Most people have to wait to heal before doing RAI anyway so you might have time to do that. (I use the term 'time' loosely as I too am a mom and know how little of it there is!) Your lymph nodes may have shown evidence of cancer but it doesn't mean it would be detected on a PET scan as they could be just cells and nothing large and visible. The RAI should help erradicate that and could put an end to any stray cells that may be lingering in your body. From what I was told, the cancer cells will be ripe and ready for the radiated iodine and will hopefully absorb it all and they will die. If all of the thyroid cancer cells are killed with the first treatment, then the cancer won't come back. If some have somehow escaped the radiation, they may stay quiet with the thyroid suppression medication you will be on. If they do start to grow, however, you would likely need to do another RAI and/or surgery. From what I understand, a majority of people don't need a second RAI. I also read that more than 50% of thyroid cancer patients have spread to the lymph nodes but it isn't as ominous as with other cancers. Good luck with your appointment and with getting answers. I think you would be wise to question your endo about being on the same page. There's nothing wrong with advocating for yourself.  Take care, Karen Karen321 Wed, 07 May 2008 00:00:00 GMT First take a deep breath!  I had a TT in March.  I had the RAI today and am in isolation for the next three days.When they removed my thyroid they found two nodes that were cancerous.  Through alot of questions and study I found that doesn't mean metastasized.I was one who used the Thyrogen shots instead of hypo hell.  I did not make that decision lightly.  I spoke with and/or emailed top doctors from Sloan Kettering, IU Cancer hospital, and James Graham Brown Cancer Center.  All of them use the Thyrogen injections 100%.  My endo then showed my file to doctors from Sloan Kettering and Genzyme (makers of Thyrogen).  They came out with the agreement that I was definitely  a candidate.  The shots were a cinch; zero side effects.  I was on the LID diet but that hasn't been that difficult either.  Just use the cookbook as a guide.So far the RAI is no problem either.  I will have my WBS done next Wednesday and it will hopefully be over.What you need to accept is that it's your body and your life.  Do your homework, ask questions, and then work with your doctors to decide your medical treatment.  If you can't speak with your doctors, then move on.  You are in charge.  I wasn't too excited about the C word either, but I got myself over the shock, read everything I possibly could about the disease and ALL of my options and then got over it.  I became very proactive and helped make all of the decisions concerning  my health. I believe I did all the right things so far.  I'm lucky I have felt good with every step.  The main thing is to stay positive, stay proactive, and make sure you have the right medical advise.  A good doctor appreciates a self educated patient.  If they don't, then move on.This is a great message board and has helped me a lot.  Read some of the history messages for some answers.  Let us know all of your questions along your path.  We'll help where we can!!BREATH!!!!!!!!!!!!  SMILE!!!!!!!!!!!! dinparadise Wed, 07 May 2008 00:00:00 GMT Thank you so much for your response. Yes, you were correct that they took out 7 lymph nodes and 4 had cancer. I had a doctor friend come over today and explain line by line the pathology report. It was very interesting. It shows that they did biopsies on the lymph nodes during the surgery and found cancer which is why they took them out. I am learning so much! I am going to see my endo tomorrow and then maybe a different endo on Friday or Monday to hear two different doctors. Then I will make my choice. Thank you again! Any other thoughts or ideas from anyone are so welcomed. -Paige PLS444 Wed, 07 May 2008 00:00:00 GMT Few more questions. When you take the RAI pill, do you have to do anything other than swallow a pill and then go home?Is WBS a whole body scan? and if so, what is done then? Do you have to drink the barium and have an iv with the weird injections again like in a PET scan? I prefer knowing ahead of time, the PET scan freaked me out because I didn't know ahead of time. Thank you everyone! PLS444 Wed, 07 May 2008 00:00:00 GMT RAI is simple.  Take a pill and go home.  Someone else will have to advise on the whole body scan.  I take it next Wednesday.  I wouldn't think you need contrast; that's the iodine, but I can't say for sure.Let us know how things go with your endos. dinparadise Thu, 08 May 2008 00:00:00 GMT  On 5/7/2008 PLS444 wrote:Few more questions. When you take the RAI pill, do you have to do anything other than swallow a pill and then go home?Is WBS a whole body scan? and if so, what is done then? Do you have to drink the barium and have an iv with the weird injections again like in a PET scan? I prefer knowing ahead of time, the PET scan freaked me out because I didn't know ahead of time. Thank you everyone!Your doctor will advise you on the RAI procedures you are to follow; but my experience was this:  Since our house only has one bathroom (due to remodeling), then it was necessary for me to remain in the hospital in isolation following RAI.  I was there for three days.  Three long, boring days.  Anyway, for households that have more than one bathroom, and somewhere to sleep where you can be isolated from anyone else, then it's okay to go home following the RAI.  There is a whole list of restrictions about how close to be to other people for how many days, etc.  Be sure to ask plenty of questions until you're satisfied you have the answers you need.No Barium.  What you will be taking is radioactive Iodine I-131.  The cool thing about thyroid cells is that they just love iodine.  Once you starve them for it through the low-iodine diet, and then administer the radioactive iodine, they take that RAI up and it kills them.  Consider it like a homing device for thyroid cells.  The object is to obliterate any remaining cancerous and non-cancerous thyroid cells wherever they may be hiding.  My RAI was in capsule form for the RAI ablation therapy, and has also been in capsule form for the tracer doses I received prior to WBS, whis is Whole Body Scan.  No big deal, just swallow the pill(s), no injections, iv's, etc.You will find yourself learning all kinds of stuff you never cared to know about.  (They inject you with radioactive glucose for a PET scan because cancerous cells tend to be very hungry for glucose.)I admire your courage to ask questions, and to be persistent until you are satisfied.  If you don't feel any of your doctors are connecting with you, or listening to you, or answering you, then get a second opinion.  Or a third.  Like you said, it is YOUR life, you only have once chance to do this right.Try not to let fear run away with you.  God gives us the strength we need each day; tomorrow's problems call for tomorrow's strength which God has not given us yet.  Skylark Thu, 08 May 2008 00:00:00 GMT You guys are all so awesome! Thank you so much! I do feel better this morning. Not as scared. I think it all hit me yesterday which everyone thought was odd as I found out about the cancer weeks ago and already had the surgery. It all just seemed so easy and not real. It wasn't until yesterday that I realized I might still have cancer and that this is not as easy as I had thought. I am starting to get prepared for the RAI treatment and finding out all that I will need. I am staying at a friends house who will be out of town. I am kinda looking forward to being alone for a few days although I am going to miss the heck out of my little 2 1/2 yr old for sure! I am off to my endo appt and hoping it goes well. Thank you everyone! PLS444 Thu, 08 May 2008 00:00:00 GMT I had my TT on march 11 and my RAI on APRIL 30. The Hypo prior and the RAI was a breeze. My TSH was 58 when I went to do the RAI. I felt great though. The fear of become Hypo was far worse than going through it. I thank my eating habit for this. Since diagnosed in January I drastically changed my eating habits. I cut out red meat and junk food. I eat really HEALTHY FOR THE FIRST TIME IN MY LIFE. I lost 30 lbs and had the most energy I have had in years. So just watch what you eat and you will feel fine. The RAI was painless. Keep a positive attitude and when you start to feel tired or hypo, get up and do something, go for a walk or something. Sometimes the mental is harder than the physical. The hardest part was the isolation during the RAI. I was in the hospital for 2 days, in a hotel for 3, since I have 2 small kids and a pregnant wife, and stayed in the basement for a week The first week is the most crucial. All in all everything was far easier than I worried it would be. Looking back I wasted alot of energy worrying about all the bad things that could happen. Block those things out of your mind and just convince yourself that these things will not happen to you. I know that sounds "mind of matter" ish, but it worked for me. Once you realize that this cancer will not get you, give yourself the permission to enjoy life and LIVE. Besides the sore shoulder everything is great and I feel blessed to discover how to appreciate my life and what I have.Email me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--  if you have any other concerns.take careSancho  serge Mon, 12 May 2008 00:00:00 GMT  On 5/12/2008 serge wrote:I had my TT on march 11 and my RAI on APRIL 30. The Hypo prior and the RAI was a breeze. My TSH was 58 when I went to do the RAI. I felt great though. The fear of become Hypo was far worse than going through it. I thank my eating habit for this. Since diagnosed in January I drastically changed my eating habits. I cut out red meat and junk food. I eat really HEALTHY FOR THE FIRST TIME IN MY LIFE. I lost 30 lbs and had the most energy I have had in years. So just watch what you eat and you will feel fine. The RAI was painless. Keep a positive attitude and when you start to feel tired or hypo, get up and do something, go for a walk or something. Sometimes the mental is harder than the physical. The hardest part was the isolation during the RAI. I was in the hospital for 2 days, in a hotel for 3, since I have 2 small kids and a pregnant wife, and stayed in the basement for a week The first week is the most crucial. All in all everything was far easier than I worried it would be. Looking back I wasted alot of energy worrying about all the bad things that could happen. Block those things out of your mind and just convince yourself that these things will not happen to you. I know that sounds "mind of matter" ish, but it worked for me. Once you realize that this cancer will not get you, give yourself the permission to enjoy life and LIVE. Besides the sore shoulder everything is great and I feel blessed to discover how to appreciate my life and what I have.Email me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--  if you have any other concerns.take careSancho Sancho, With no disrespect intended your post reads as a story written by someone who has no clue what it really feels like to go through all the pysical and mental issues contected with Thyroid cancer.I have talked to real people who have gone through RAI and they all said it was tough. Nausea, frequent urination, painfull salivary glands, sleeplessness etc. By the way you are also a male, women usually  have either menstral cycles, and or menopause to deal with during all of this. Nothing about cancer is a breeze and when you are so worn out just to make it through each day that you want to cry, taking a walk is about the last thing you want to do. How about a nice backrub or a warm bath? That's reality until you are all done and balanced out. Whenever that happens. indigogirl Mon, 12 May 2008 00:00:00 GMT  On 5/12/2008 NOBUTTERFLY wrote: On 5/12/2008 serge wrote:I had my TT on march 11 and my RAI on APRIL 30. The Hypo prior and the RAI was a breeze. My TSH was 58 when I went to do the RAI. I felt great though. The fear of become Hypo was far worse than going through it. I thank my eating habit for this. Since diagnosed in January I drastically changed my eating habits. I cut out red meat and junk food. I eat really HEALTHY FOR THE FIRST TIME IN MY LIFE. I lost 30 lbs and had the most energy I have had in years. So just watch what you eat and you will feel fine. The RAI was painless. Keep a positive attitude and when you start to feel tired or hypo, get up and do something, go for a walk or something. Sometimes the mental is harder than the physical. The hardest part was the isolation during the RAI. I was in the hospital for 2 days, in a hotel for 3, since I have 2 small kids and a pregnant wife, and stayed in the basement for a week The first week is the most crucial. All in all everything was far easier than I worried it would be. Looking back I wasted alot of energy worrying about all the bad things that could happen. Block those things out of your mind and just convince yourself that these things will not happen to you. I know that sounds "mind of matter" ish, but it worked for me. Once you realize that this cancer will not get you, give yourself the permission to enjoy life and LIVE. Besides the sore shoulder everything is great and I feel blessed to discover how to appreciate my life and what I have.Email me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--  if you have any other concerns.take careSancho Sancho, With no disrespect intended your post reads as a story written by someone who has no clue what it really feels like to go through all the pysical and mental issues contected with Thyroid cancer.I have talked to real people who have gone through RAI and they all said it was tough. Nausea, frequent urination, painfull salivary glands, sleeplessness etc. By the way you are also a male, women usually  have either menstral cycles, and or menopause to deal with during all of this. Nothing about cancer is a breeze and when you are so worn out just to make it through each day that you want to cry, taking a walk is about the last thing you want to do. How about a nice backrub or a warm bath? That's reality until you are all done and balanced out. Whenever that happens. I understand what Sancho is saying.  I'm a 53 year old woman; in menopause since I was 47.  I am diabetic, high blood pressure, fibromyalgia etc. etc. etc.  I just completed my RAI and am waiting to do my WBS on Wednesday.  I had no problems with any of the procedures so far.  I did have a tough time right after surgery as my throat swoll up and I couldn't breath.  But after steroids, it all went back to normal.I believe Sancho has the right idea.  We all have cancer; some more serious than others.  Sure, I was overwhelmed at first at the thought that I had cancer; always happens to others doesn't it?  Then I took hold of myself, stopped feeling sorry for myself, did a lot of homework and worked with my doctors to follow the best path for me.  Hasn't anyone ever told you that the best medicine in the world is attitude?  I was tired, but other than that no side effects.  You have to realize that everyone's body reacts differently.  There's no reason to scare people just because you had some side effects and/or react differently to the C word.  I have chosen "the high road" and no one is going to force me off of that road.  No one should be afraid.  If you have a low tolerance level, it may be a little harder for you.  But you will make it fine.  If you have a higher tolerance level like Sancho, New York and I do then it won't be so hard!!  If it gets hard, dig deep and you'll find a side to yourself you never knew you had.  If you don't have the energy to dig deep enough right now, that's ok.  Find a loved one to lean on; you'd be there for them.  If that doesn't help, private email one of us and we'll see if we can help you out.  But don't get the attitude that this is the worst thing you will ever have to go through.  With the right attitude, you too will find it to be a "cinch".  Be positive and EVERYONE will get through this time in our lives!!!!Touche~ SanchoDonna dinparadise Mon, 12 May 2008 00:00:00 GMT Sancho, With no disrespect intended your post reads as a story writtenby someone who has no clue what it really feels like to go through allthe pysical and mental issues contected with Thyroid cancer.I havetalked to real people who have gone through RAI and they all said itwas tough. Nausea, frequent urination, painfull salivary glands,sleeplessness etc. By the way you are also a male, women usually  haveeither menstral cycles, and or menopause to deal with during all ofthis. Nothing about cancer is a breeze and when you are so worn outjust to make it through each day that you want to cry, taking a walk isabout the last thing you want to do. How about a nice backrub or a warmbath? That's reality until you are all done and balanced out. Wheneverthat happens. Tara wrote:I wasn't expecting any problems and I have always been told I am a very positive person.  I thought "this will be a breeze."   Well, while hypo, II couldn't even walk upstairs to my bedroom without having to sit on the landing to rest (and I have always worked out at the gym so I wasn't out of shape).  My heart beat out of my chest,  I ached all over, my hands drew up and I couldn't type and add the LID to it....I was weak and miserable and it was not in my head!!   Thank goodness it only took me 2 weeks until my lab showed I was ready for RAI.   I rarely throw up and after 150 of RAI on a Friday, I threw up all weekend and actually hallucinated.  I lost 10 pounds that I didn't need to lose.  I always try to look on the bright side and be thankful for what I have---but that hypo/RAI blindsided me and knocked me for a loop.  Others have no problems at all and no one knows why.    We are all in this together and everyone's experience gives me more insight to this disease.   The best to everyone!   Tara YaYaTara Fri, 16 May 2008 00:00:00 GMT  On 5/7/2008 PLS444 wrote:Thank you so much for your response. Yes, you were correct that they took out 7 lymph nodes and 4 had cancer. I had a doctor friend come over today and explain line by line the pathology report. It was very interesting. It shows that they did biopsies on the lymph nodes during the surgery and found cancer which is why they took them out. I am learning so much!I am going to see my endo tomorrow and then maybe a different endo on Friday or Monday to hear two different doctors. Then I will make my choice. Thank you again! Any other thoughts or ideas from anyone are so welcomed.-Paige Hey there, just wanted to try to reassure you some more.  I also had my cancer spread to the lymph nodes and as someone who had been taking a lot of bio classes recently (biochem engineering student and trying for bio minor) was a little freaked by that.  I knew that in many other cancers, spreading to the lymph nodes is bad news.  In our type, however, prognosis is generally unchanged.  I had a TT in 04, and an RAI (this is very important if it spreads to lymph nodes) in jan 05.  I am happy to say I have no signs of cancer to date.  The RAI treatment went pretty well for me also.  I took the pill and had to stay in the hospital until I was determined to be safe (via a geiger counter).  Ended up being a little over 24 hours.  My advice would be: drink an inordinate amount of fluids.  I constantly drank gatorade and went to the bathroom ridiculously often, but I purged enough iodine to get out in 24 hrs.   Anyway, good luck with everything - it sounds like you have a good head on your shoulders so I think youll be fine! sargonnis Fri, 16 May 2008 00:00:00 GMT