Medullary Thyroid Cancer

bdenise

Hi! I am 36 and diagnosised with thyroid cancer in July 2003. I am the mother of 3, 7 year old girl, 4 year old boy, and 6 month old baby girl.

My father died of pancreatic cancer at age 41, I was 14. His mother died at age 42 of lymphnomia before I was born. I always knew cancer would revisit me and I not as terrified as I thought I would be. I'm frustrated by the lack of treatment for medullary cancer, the iodine therapy doesn't work on this type. I had a total thyroidectomy and neck dissection. They removed 6 lymph nodes with 4 being infected. They were next to my vocal cords and still don't have my voice back.

The doctors decided to do a CT Scan as a "baseline" and found small "spots" in both my lungs and liver. They assure me that I won't have any symptoms for 5-10 years and by then there should be some good treatments.

I don't know how to handle any of it. My husband is having a hard time too. So many people are so supportive, but I'm not sure how to feel. Having my voice gone is a constant reminder that I am sick. I read some threads that talked about being bothered that people refer to thyroid cancer as the "good" kind. No one does around me. They hear cancer and panic. I find myself reassuring them. but I think I'm wrong. I don't want my children to grow up without a mom.

Any body out there in a similiar situation? Or have any experience with the vocal cord problems?

rdjc

Hi bdenise,
I am 33 and also the mother of 3. I had vocal cord problems. My voice did not return for 3 months. I understand the incredible frustration at being unable to communicate, as well as having that urge to comfort everyone around me. Even before diagnosis, when I had a good sense that I did have cancer, I found myself telling everyone how sure I was that it would not be cancer. I also had this sense that cancer would revisit me and my family, following my mother's cancer (she is okay now). In the world of cancer, doctors seem to find telling a person that they have several years before "this becomes a problem" to be reassuring. I remember one doctor who told me I could live about 20 years with my cancer. He thought this was good news (and I imagine in his world it is), but I wanted to crawl under a rock and cry. My youngest was three, and all I could think was that he would get married without me. I thought of my husband growing old with someone else (I am supposed to be old and grey with him!).My greatest hope is that there will be good treatments soon, especially for those like yourself who need them so much.I realize I don't have much information for you...but I hope that knowing others have experienced some of what you are experiencing helps.

jwierks

rdjc said:

Hi bdenise,
I am 33 and also the mother of 3. I had vocal cord problems. My voice did not return for 3 months. I understand the incredible frustration at being unable to communicate, as well as having that urge to comfort everyone around me. Even before diagnosis, when I had a good sense that I did have cancer, I found myself telling everyone how sure I was that it would not be cancer. I also had this sense that cancer would revisit me and my family, following my mother's cancer (she is okay now). In the world of cancer, doctors seem to find telling a person that they have several years before "this becomes a problem" to be reassuring. I remember one doctor who told me I could live about 20 years with my cancer. He thought this was good news (and I imagine in his world it is), but I wanted to crawl under a rock and cry. My youngest was three, and all I could think was that he would get married without me. I thought of my husband growing old with someone else (I am supposed to be old and grey with him!).My greatest hope is that there will be good treatments soon, especially for those like yourself who need them so much.I realize I don't have much information for you...but I hope that knowing others have experienced some of what you are experiencing helps.

I am a 42 year old mother of five.I was diagnosed with medullary thyroid cancer in sept 2002.Had surgery in sept 2002,then again in oct 2002.Total thyroidectomy,they removed 20 lymphnodes,and 10 of them were positive for cancer. The cancer came back again in feb 2003, and then I had surgery in March of 2003. Then I had 25 radiation treatments.My voice also affected. I don't have much volume, and can't sing anymore.But I'm getting used to it. Recently had another calcitonin test and it is going up again.It is over 3300 .I'm scheduled for a CT scan the end of the month.They told me this cancer was slow growing, but I wonder.I try to take it all one day at a time, and pray that my husband and I will be able to raise our childeren together. My youngest is 9.I feel good and am thankful for each day.

bdenise

rdjc
I just now found your reply to my posting on MTC. Thank you. Your situation sounds so similiar to mine. How long ago did you have it and do you have any "mets"?

If you haven't found it yet there is another group on Yahoo! Groups specifically for Medullary Thyroid Cancer which is more active than this one. You sound totally like you understand how I am feeling and that really does help. It also helps that you got your voice back after 3 months! I'm hoping!! Not quite 3 months yet.

Thanks again. Denise

Kiwi1

Hello -- I too have Medullary Thyroid Cancer. Was diagnosed when I was 23, I am now 35. I have had about 4 surgeries. With the last surgery (about 4 years ago), the surgeon was doing his best to be thorough in getting all the cancer and cut one of my vocal cards. I sounded like Minny Mouse on steroids. This was very hard to deal with, so I know EXACTLY what you are going through. BUT..good news is my voice is fixed. TEFLON. They inserted Teflon down the back of my throat. It creates a mirror effect for the other vocal cord to work off. The first year my voice would have raspy days -- but I had VOLUME. It's been 4 years now and I sound exactly like I did before. Any other questions, I would be more than happy to help.

Thelmalou

Hi bd! Well, it's good to see some others out there with this buggar. I am 43 and have two young daughters -- ages 4 and 5 1/2. I was first diagnosed with MTC about 19 years ago, told it was very slow growing -- you find it, you cut it out. Well, so that was 5 surgeries ago, with the latest being a very nasty one last week. Large tumor snaked around my carotids, trachea and many other vital structures in the neck. I am now looking at external beam radiation in a few weeks. I have NOT lost my voice, but I can only imagine how frustrated you must be. I understand that there are some clinical trials being done in St. Louis on some "miracle" drug that has a lot of promise for those of us with MTC. Good wishes to you and your family -- enjoy those kids for all that they are worth -- you know, none of us are promised more than today.....I am reminded of this more and more since last week's surgery.....

JensDad04

My Dad was just diagnosised with Medullary cancer, he is 70. He discovered this on his neck because one of his lymphnodes were swollen. He is scheduled to have surgery march 15, 2004. The doctor will be removing his jugular and all the lymph nodes that are involved. They also told him that one of his vocal cords will be paralysed.

I am really scared for my dad.

Have you gotten your voice back yet, today. 2/7/04?

JensDad04

lzsmith

Trial
My husband was diagnosed with medullary last year, two days after we were married. he has had two neck dissections, and still has tumor left. He lost his vocal chord in the last surgery, 9 months ago, and says he now talk like a muppet. Worse yet, he used to sing....beautifully. We live in rural pa, but in driving distance of hopkins, and he is due to enter a trial for XL-184. This has positive results, and we feel some treatment is better than none at all. He is only 41.....but I can tell you....has profound effects. It may be slow growing.....but it has rapidly affected our lives. He has no energy,constant pain.....and in my opinion, depression. I understand. As his wife,and a medical professional, I feel useless most days....and confined to this life's sentence that frankly, I never signed up for. In a world where I work hard to make others well, I can't fix my own husband. Look at thyca.org....that may also be helpful to you.

kendrarajan

Hi! I too have MTC!
Hi! I too have MTC! apparently i was looking in the wrong area, under rare and other, not thyroid. I am not a mother of anyone (except my cat), and had my cancer when I was 12. I can sure give a perspective from a childs' view. I am now 19. My cancer came as a package bundle with the genetic disorder i was born with (new mutation, go figure). It's called multiple endocrin neoplasa type 2 B. ever heard of it? didn't think so. Ah well. you get what you can. well. i am glad to know i am not the only thyroid cancer patient that was not treated with iodine stuff. good ol surgery and radiation for us!

chobotor

lzsmith said:

Trial
My husband was diagnosed with medullary last year, two days after we were married. he has had two neck dissections, and still has tumor left. He lost his vocal chord in the last surgery, 9 months ago, and says he now talk like a muppet. Worse yet, he used to sing....beautifully. We live in rural pa, but in driving distance of hopkins, and he is due to enter a trial for XL-184. This has positive results, and we feel some treatment is better than none at all. He is only 41.....but I can tell you....has profound effects. It may be slow growing.....but it has rapidly affected our lives. He has no energy,constant pain.....and in my opinion, depression. I understand. As his wife,and a medical professional, I feel useless most days....and confined to this life's sentence that frankly, I never signed up for. In a world where I work hard to make others well, I can't fix my own husband. Look at thyca.org....that may also be helpful to you.

trial also
My husband was diagnosed with medullary in jan, 2009. He had surgery removed entire thyroid, than had such a hard time finding a doctor to treat this. It was a major run around, finally ended up at sloan-kettering in n.y.c. took trips there numerous times. He was scheduled for surgery again but found out it was growing faster than expected and also went into the bones. So now where at st.lukes, in pa, for this pill also. And your so right about the no energy, constant pain also, he's taking the pain patches along with the pills. He's also stopped working which he was a truck mechanic and he could no longer do that kind of work. I work nights, have 2 teenagers, and it gets so stressful at times. My husband turned 42 in aug, Did you find out if it was genetic or not. thats another thing I'm dealing with. So Sloan is taking care of that. It just feels like I'm on the phone all the time with different drs. I'm glad I found this site, just for an outlet, for my frustions at time.

ksblack

Denise,
I wish you lots of
Denise,
I wish you lots of luck and will keep you in my prayers. I am going in for my check up next week or so. I had Papillary cancer in 2006 and worry all the time it will come back. I had a FNA biopsy 2 months ago which came back negative but then my first FNA was negative and when they went to do the thyroidectomy I had it in both sides. I am having neck pain now and trying to find out why. Lymph nodes showed up huge in the MRI last week. There is no good kind of cancer to have. I am scared all the time it will come back.

isabel_90

Papillary Carcinoma
Hi my name is Isabel and I am nineteen, I was diagnosed with thyroid cancer on March 13th 2008 and I was seventeen. It was first detected because of some nodules in my throat, then i was reffered to a nose throat and ear specialist who was also a neck surgeon. Because of the size of one of the nodules along my thyroid glan was of a "Bigger" size he decided that it would be best to do a ectomy of just the right side, test it for cancer during the surgery, and depending on the results they would extract the whole gland. So it came out positive and I had a whole thyroidectomy, along with several lymphnodes that were infected with the cancer. The thing that I can relate to you though is the vocal cord symptoms, i was not expected to be able to speak again, even now i can't yell or howller (if thats how you spell it) and my voice tends to go away after a while. What cause that though was that my actual thyroid was wrapped around a few vocal cords, and the surgeon had said he had a very difficult time extracting it, and he was affraid that he had cause some major damage. Luckily it wasn't that bad, just being loud is no longer happening much. Also, it was wrapped around one of the muscles used for swallowing so they also expected me not being able to eat solids.

The reason why I came in search for someone who had something like this today was because yesterday I saw my primary, mind you its been two years since this whole experience, and I've been having some discomfort on the left side of my throat and it's been getting hard to swallow even liquids at this point, once in a while I'll get a sharp pain deep inside, and I cand feel some bumps. I had to know if it was me being paranoid, or if they were really there. Sure enough she felt four nodules of a significant size. I'm not scared, though in my heart I feel it's the cancer again. You might say that I'm crazy, that i must be scared. Thing is, I've been through it one time and I can do it again. Having cancer is definitely not fun, and I admit I've been worried it would come back, it's not a for sure thing that it is back, but nonetheless we are all going to be okay. So that's my view of this type of cancer.
Good Luck to you all.

changoslf

isabel_90 said:

Papillary Carcinoma
Hi my name is Isabel and I am nineteen, I was diagnosed with thyroid cancer on March 13th 2008 and I was seventeen. It was first detected because of some nodules in my throat, then i was reffered to a nose throat and ear specialist who was also a neck surgeon. Because of the size of one of the nodules along my thyroid glan was of a "Bigger" size he decided that it would be best to do a ectomy of just the right side, test it for cancer during the surgery, and depending on the results they would extract the whole gland. So it came out positive and I had a whole thyroidectomy, along with several lymphnodes that were infected with the cancer. The thing that I can relate to you though is the vocal cord symptoms, i was not expected to be able to speak again, even now i can't yell or howller (if thats how you spell it) and my voice tends to go away after a while. What cause that though was that my actual thyroid was wrapped around a few vocal cords, and the surgeon had said he had a very difficult time extracting it, and he was affraid that he had cause some major damage. Luckily it wasn't that bad, just being loud is no longer happening much. Also, it was wrapped around one of the muscles used for swallowing so they also expected me not being able to eat solids.

The reason why I came in search for someone who had something like this today was because yesterday I saw my primary, mind you its been two years since this whole experience, and I've been having some discomfort on the left side of my throat and it's been getting hard to swallow even liquids at this point, once in a while I'll get a sharp pain deep inside, and I cand feel some bumps. I had to know if it was me being paranoid, or if they were really there. Sure enough she felt four nodules of a significant size. I'm not scared, though in my heart I feel it's the cancer again. You might say that I'm crazy, that i must be scared. Thing is, I've been through it one time and I can do it again. Having cancer is definitely not fun, and I admit I've been worried it would come back, it's not a for sure thing that it is back, but nonetheless we are all going to be okay. So that's my view of this type of cancer.
Good Luck to you all.

a note
I am 26 and two years ago i found a lump in my neck that really hurt had it diagnosed to be medullary thyroid cancer..did basic surgery it spread in a month..went back had total thyroidectomy with 56 lymph nodes removed and now its in my clavicle..just finished radiation therapy and waiting for follow ups

what really sucks is how doctors have to be so straight forward..i dont blame them it just hurts to here the words POOR PROGNOSIS..
With this type of cancer i have learned that it is not going anywhere anytime soon and well have to just keep dealing with it in our lifes..i too dont feel scared..it just makes things worse when people say "oh im sorry to hear that"..i know they mean well but its a constant reminder..i dont really want to tell them i have it but its a given when you have a huge scar around your neck...
All in all it has made me a more loving and respecting person i see how much people dont value there life everyday by abusing there bodies and it makes me wonder if they knew what we are going through if they would stop abusing there bodies realizing cancer is nothing fun...
THANKS for reading..email me if i can be of any help...

leolove

changoslf said:

a note
I am 26 and two years ago i found a lump in my neck that really hurt had it diagnosed to be medullary thyroid cancer..did basic surgery it spread in a month..went back had total thyroidectomy with 56 lymph nodes removed and now its in my clavicle..just finished radiation therapy and waiting for follow ups

what really sucks is how doctors have to be so straight forward..i dont blame them it just hurts to here the words POOR PROGNOSIS..
With this type of cancer i have learned that it is not going anywhere anytime soon and well have to just keep dealing with it in our lifes..i too dont feel scared..it just makes things worse when people say "oh im sorry to hear that"..i know they mean well but its a constant reminder..i dont really want to tell them i have it but its a given when you have a huge scar around your neck...
All in all it has made me a more loving and respecting person i see how much people dont value there life everyday by abusing there bodies and it makes me wonder if they knew what we are going through if they would stop abusing there bodies realizing cancer is nothing fun...
THANKS for reading..email me if i can be of any help...

Medullary Carcinoma Survivor
Hi! Sorry I posted in the wrong place opening a seperate thread before finding you guys. I was diagnosed at 23 and I am a 50 yr. old female. I had 2 thyroid surgeries and was sent to MD Anderson Cancer Hospital for a bilateral neck dissection (3rd operation) followed by 6 weeks radiation back in 1983. I had localized lympth node involvement. I still have elevated calcitonin but with yearly followups to Head and Neck and Endocrinology no spread has ever been found.I do have a couple of tiny spots on the lung with no growth. I am extremely thankful for that. I thank God every day for my recovery and the wonderful doctors at MD Anderson! I just feel they are not equipped to deal with the after effects.

I do experience long standing side effects from the radiation including leukepenia (low white blood count (C4s and T cells) they say from radiation hitting my bone marrow), sinus problems, dental, problems swallowing, history of vocal cord nodules and bleeding, upper body weakness, numbness and neck pain, tiredness, memory loss, salivary sensitivity to spicy foods and sensitivity to heat. I sweat like crazy in the heat or while trying to exercise.
I have lead a very happy, relatively normal life. I am married for 29 years with 2 grown children. I adopted my son and gave birth to my daughter. I taught school for 21 years and had to retire early due to luekepenia and vocal cord issues a few years back. Have others had these types of side effects and are there other effects? I exercise when I feel well and try to eat right with probiotics. Any other suggestions?
I am so thankful to have found you guys as it's so hard to find people who understand that no this is really not the good kind but not the very worst and that the side effects are forever. Due to the leukepenia it makes it hard to go out in public with all the bugs going around since I catch everything. My daughter is a senior in high school and brings them home too.
Since Medullary Thyroid Cancer is fairly rare, I would love to hear from others with same condition. Thanks!

GarySamet

changoslf said:

a note
I am 26 and two years ago i found a lump in my neck that really hurt had it diagnosed to be medullary thyroid cancer..did basic surgery it spread in a month..went back had total thyroidectomy with 56 lymph nodes removed and now its in my clavicle..just finished radiation therapy and waiting for follow ups

what really sucks is how doctors have to be so straight forward..i dont blame them it just hurts to here the words POOR PROGNOSIS..
With this type of cancer i have learned that it is not going anywhere anytime soon and well have to just keep dealing with it in our lifes..i too dont feel scared..it just makes things worse when people say "oh im sorry to hear that"..i know they mean well but its a constant reminder..i dont really want to tell them i have it but its a given when you have a huge scar around your neck...
All in all it has made me a more loving and respecting person i see how much people dont value there life everyday by abusing there bodies and it makes me wonder if they knew what we are going through if they would stop abusing there bodies realizing cancer is nothing fun...
THANKS for reading..email me if i can be of any help...

Same here..
Hi.. I am 38 and after months of tests and worrying out of my mind, was diagnosed in 1999 with medullary thyroid cancer. I had had a lump on the left side of my neck which really ached. After being scoffed out of a GP's surgery when I first started complaining about it, (He said 'You are in a picture of perfect health') I demanded a second opinion and was referred to the ENT clinic at Addenbrookes Hospital in Cambridge where I live (England). I went and had a needle aspiration biopsy. Within six weeks the lump had swelled and I went in for minor surgery to remove it and was informed that there were three lumps joined together like a pod of peas. Within another few months it was back and it was the size of a plum! I had a total thyroidectomy and neck disection of the left side which took approx ten hours.

Luckily my voice was not affected, but during the op, they cut a vital nerve in the trapezium which made my shoulder drop. when I first saw myself after the op I cringed (and still do to this day). My once thick neck now looked scrawny and my collar size went right down. My shoulder muscle soon wasted away to nothing and my left arm often hurts and is quite limited in use. I cannot reach or lift my arm upwards. After about six months I started getting really bad back pain due to the shoulder drop and now 10/11 yrs later I can hardly walk somedays I am so racked with pain and muscle spasms. My whole posture has twisted round to the left and my spine has started to curve. It is so bad that when I buy a new T-shirt, after only a few times of wearing it, it goes out of shape!

I rarely have 'good days', I am always in some form of pain, be it my neck, shoulders or back, pins and needles and numbness of the left side of my face and neck...

What a decade the 00's were... I lost my fiancee and home, my career, about two stones in weight, my vanity and self worth shot right down, and the depression has been dreadful. I suffer from chronic pain also. In about 2004 I started getting pains again and voiced my concerns about more lumps. I was given a CT scan and told not to worry and that it was scar tissue. The pains continued to get worse but I just kept being fobbed off that I was ok. I KNEW I wasn't, as I had in the first place but just felt like I was banging my head against the wall. I did actually head butt the wall in the surgery in frustration and anger once, so I went travelling for a year in 2008 thanks to a genorous gift from my father, during which I began to feel a bit better in the tropical weather of S.E Asia. My father passed away that christmas whilst I was away and I could not get back in time for his funeral, which still cuts me to the core.

Eventually, a few months later I managed to get back to England, and upon returning went back to the hospital. After a year and a half of yet more scans etc, I was informed last week that yes, it has indeed come back where my thyroid used to be!!! The surgeon tells me that this time will be a small procedure and that I should be perfectly normal again. PERFECTLY NORMAL?? I have had over ten years of grief, pain, finger pointing and ridicule because I do not work, and now the government are making cutbacks, my benefits have been slashed. It is terrible to say that I consider suicide regularly considering how much worse other people can be, but I cannot get a girlfriend, I live by myself like a hermit and this is normal??

I am terrified to let him do this op in case it comes back bigger like last time and really don't know what to say or think about it, except that life is so cruel to some of us. I will try and be positive, but being alone all the time does not help at all. I just hope and pray that one day they will be able to manage my pain efficiently and I can regain my self respect and pride.

Good luck to all you fellow sufferers of this nightmare disease.

Gary Johnson, Cambridge, UK

sickagain

how are you doing?
I was recently diagnosed with medullary cancer. I had surgery. The mass was 5cm. I am so scared. The ct scan a 9mm spot on my liver. I was just wondering if you you could tell me any treatments you have had, how are you feeling and anything else that may be helpful. Thank you.

bobcc

sickagain said:

how are you doing?
I was recently diagnosed with medullary cancer. I had surgery. The mass was 5cm. I am so scared. The ct scan a 9mm spot on my liver. I was just wondering if you you could tell me any treatments you have had, how are you feeling and anything else that may be helpful. Thank you.

Diagnosed 9/9/1010
I recently went to the Danville, IL, VAMC with pain in my neck and trouble swallowing. They did a CT scan and found what appeared to be cancerous nodes and a greatly enlarged thyroid. I went back again for another scan the next day which was from the neck to my hips. This scan turned up a heavily metastisized liver and thousands of nodes throughout my torso.

I then went to the John Cochran VAMC in St. Louis, MO. They did a CEA blood test and got a score back of 2700 (0-5 being normal). They then did a colonoscopy and upper endoscopy. Aside from 2 polyps in the colon which were removed, no sign of cancer was found in either scope. So they then did a blood test for calcitonin. My score came back at 4200 (0-10 being normal). The doctor decided that it was MTC. His exact words were "We're not talking about years here, we're talking about months." Since the cancer is so far spread out radiation is out of the question.

The doctor tells me that since the cancer is so far along chemo would be a waste of time and effort. He put me on Sutent, going off-label as this is approved for renal and gasrointestinal cancers. He is hoping that this will halt the progression of the cancer but there is no hope of remission.

I'm trying to get a 2nd opinion now but am not hopeful of the results. Has anyone else experienced MTC this far advanced?

mwc3rd

bobcc said:

Diagnosed 9/9/1010
I recently went to the Danville, IL, VAMC with pain in my neck and trouble swallowing. They did a CT scan and found what appeared to be cancerous nodes and a greatly enlarged thyroid. I went back again for another scan the next day which was from the neck to my hips. This scan turned up a heavily metastisized liver and thousands of nodes throughout my torso.

I then went to the John Cochran VAMC in St. Louis, MO. They did a CEA blood test and got a score back of 2700 (0-5 being normal). They then did a colonoscopy and upper endoscopy. Aside from 2 polyps in the colon which were removed, no sign of cancer was found in either scope. So they then did a blood test for calcitonin. My score came back at 4200 (0-10 being normal). The doctor decided that it was MTC. His exact words were "We're not talking about years here, we're talking about months." Since the cancer is so far spread out radiation is out of the question.

The doctor tells me that since the cancer is so far along chemo would be a waste of time and effort. He put me on Sutent, going off-label as this is approved for renal and gasrointestinal cancers. He is hoping that this will halt the progression of the cancer but there is no hope of remission.

I'm trying to get a 2nd opinion now but am not hopeful of the results. Has anyone else experienced MTC this far advanced?

Diagnoed 9/92010
Hi. I know you must be scared. I am 35, live in Dallas, TX and was diagnosed in 2008 with surgery in Boston as Mass General. There were wonderful and very experienced in MTC. I am now at MD Anderson in Houston for all post-surgery follow up.

Everything i hear is that you NEED A SECOND OPINION IMMEDIATELY! My docs are working with folks with Calcitonin in the 25,000 range!

Feel free to email me directly and i will be glad to pass you along to my folks in Boston or Houston.
mcox@marquisgroup.net

Best,
Morgan

lovetodance

mwc3rd said:

Diagnoed 9/92010
Hi. I know you must be scared. I am 35, live in Dallas, TX and was diagnosed in 2008 with surgery in Boston as Mass General. There were wonderful and very experienced in MTC. I am now at MD Anderson in Houston for all post-surgery follow up.

Everything i hear is that you NEED A SECOND OPINION IMMEDIATELY! My docs are working with folks with Calcitonin in the 25,000 range!

Feel free to email me directly and i will be glad to pass you along to my folks in Boston or Houston.
mcox@marquisgroup.net

Best,
Morgan

MTC
Hi MTC patient,

I am 69 years old and was diagnosed with MTC in March of 2008. I had a thyroidectomy on only one side, then a neck dissection and 35 Tomotherapy radiation treatments. I am a Sloan-Kettering patient. If you are at MD Anderson, you are at another one of the finest Cancer centers in the world. You don't need another opinion. My recent scans showed lesions in my liver. They are quite small, but the docs are recommending systemic treatment with an experimental oral pill called sorafenib (Nexaver). It will be given off label as it was originally produced for kidney and liver cancer patients. At the moment, I have no pain. I have side effects from all of the surgery and the radiation. I go to a swallowing clinic which has helped me tremendously. I go for lymphadema message therapy which has helped me cosmetically in the neck area. I have one paralyzed vocal chord, but I get along fairly well with the other one. I lost over 45 lbs. over the course of all of these treatments. Now I am about to embark into this new experimental drug treatment and am worried about quality of life issues. But the team at Sloan is amazing. This are brillianst, very accessible, and have the latest and greatest equpment and treatments. We are retired. I was an educator for 30 years and was forced to retire due to this disease. I suggest that anyone out there with this disease should be aggressive. The U. of Penn. also has an outstanding team headed by a Dr. M. Brose who has options for those of us with MTC. (such as XL184) Keep on fighting. I also go to a counselor who works with me using guided imagery and bio-feedback techniques. Yes, you are right this is all consumming. I also strongly suggest that you keep a detailed notebook of every date, appointment, question, result, and copies of post-op reports, etc..GOOD LUCK!

emiller

lovetodance said:

MTC
Hi MTC patient,

I am 69 years old and was diagnosed with MTC in March of 2008. I had a thyroidectomy on only one side, then a neck dissection and 35 Tomotherapy radiation treatments. I am a Sloan-Kettering patient. If you are at MD Anderson, you are at another one of the finest Cancer centers in the world. You don't need another opinion. My recent scans showed lesions in my liver. They are quite small, but the docs are recommending systemic treatment with an experimental oral pill called sorafenib (Nexaver). It will be given off label as it was originally produced for kidney and liver cancer patients. At the moment, I have no pain. I have side effects from all of the surgery and the radiation. I go to a swallowing clinic which has helped me tremendously. I go for lymphadema message therapy which has helped me cosmetically in the neck area. I have one paralyzed vocal chord, but I get along fairly well with the other one. I lost over 45 lbs. over the course of all of these treatments. Now I am about to embark into this new experimental drug treatment and am worried about quality of life issues. But the team at Sloan is amazing. This are brillianst, very accessible, and have the latest and greatest equpment and treatments. We are retired. I was an educator for 30 years and was forced to retire due to this disease. I suggest that anyone out there with this disease should be aggressive. The U. of Penn. also has an outstanding team headed by a Dr. M. Brose who has options for those of us with MTC. (such as XL184) Keep on fighting. I also go to a counselor who works with me using guided imagery and bio-feedback techniques. Yes, you are right this is all consumming. I also strongly suggest that you keep a detailed notebook of every date, appointment, question, result, and copies of post-op reports, etc..GOOD LUCK!

Mother With MTC
Hi,

My mother was diagnosed with MTC in 2009 and had a complete thyroidectomy and neck dissection along with 35 radition treatments. She had been doing great until today when she received her calcitonin levels back. 3 months ago her level was 54 and now it has doubled to around 104. I am so worried that the medullary cancer has came back. Does anyone have any experience with there calcitonin level rising after 1 year and did it mean the cancer has returned? Any advice would be greatly appreciated.

krystalboals

on the other side
I am sorry for what you are going threw. Truley! I am for now not a cancer survivor but a daughter of a woman who had medullary thyroid cancer and from a family filled with cancer.
......I took care of my mother for two years and she died..I was there for every moment. I am telling you this cause I am scared for my self and my 19 month old daughter, I have no one to talk to.