Medullary Thyroid Cancer

SheilaBRojek

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?

MTC
My mom was diagnosed on Feb 5, 2011 w MTc that has spread to her liver and several bones. She had a complete thyroidectomy to include her lymph nodes. We were able to keep her voice box and finally after 4 weeks her voice is getting back to normal. This is our families first experience with cancer and we have been frustrated to say the least. Our doctor has told us that she has about 6 - 12 months. On the day that she was finally diagnosed with medullary (April 6) she left the office crying wishing for a miracle drug. Our doctor shared that this cancer will not react to radiation or chemo. Two hours later we found the FDA announcement that Vandetanib was approved which is the first MTC drug. She was the first patient in the US to receive this drug. Her calcitonin will not be checked for a few more weeks. Her CEA was 128 mid April. So we are in our waiting period. I wanted to share our story to ensure that all were aware of the new drug. Sutent is another drug but not specific to MTc. Our hopes and prayers are with you and all MTc patients out there.

davidbell

GarySamet said:

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

Free Functional Muscle Transplant
Hi Gary

Just been diagnosed with MTC going in to Newcastle RVI Tuesday for neck disection found an article at http://nerve.wustl.edu/nd_muscle.php which may or may not be usefull havn't had time to research it yet. hope it helps.

Dave

sickagain

Kiwi1 said:

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.

Medullary
Hi. I've had two surgeries in less than one year. May I have the name and location of your surgeon. Thank you!.

debigaddes

emiller said:

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.

Sporadic MTC
Hi everybody, I was diagnosed with sporadic MTC 6th october 2003.I was 33 yrs old. I had been diagnosed 2 years previous with Graves disease, and following a subtotal thyroidectomy, a 6mm MTC was found during the histopathological testing. So started the roller coaster!! As this was described as an 'incidental finding', which was completely contained, no further surgical intervention was deemed necessary. Instead I had a CT scan, and weekly calcitonin levels recoreded, then monthly, 3 monthly, 6 monthly, and now annually. I also that genetic testing to find out if i was the carrier of a gene that predisposed me to having MEN1 Multi endocrine neoplasia disorder, fortunately, I did not. It was, and still is a scary diagnosis, and i feel blessed to have no further reoccurance, fingers crossed that comtinues for many years to come. Throughtout all of this, i have found the support of a relatively small unknown charity, invaluble. The charity is called AMEND....... Association of multi endocrine neoplasia disorder. I am now committed to raising funds for AMEND, and raising their profile. Good luck to you all. Health and happiness to everyone.

p_kelly_eller

leolove said:

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!

mtc
I would love to discuss any thing about MTC with you. My husband (43) is going on two years after diagnosis and we wonder if his experience is typical.

clb2012

krystalboals said:

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.

Krystalboals: I can only
Krystalboals: I can only imagine what you are going thru. Everyone has some sort of battle they are going through. If I can be of any help at all please let me know. Our son went home to God 5 yrs ago, this destroyed my world. I believe in God and believe it has been HIS over whelming love, grace, etc that has gotten me through. Recently my dad went home as well and I have been diagnosed with Medullary Thyroid Cancer. I've had surgery, and preparing to go to MD Anderson. Will be praying for you and your daughter.

sickagain

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?

just wondering

Hi !

I just wondering how are you doing? Did taking Sutent help stop the progression of the mtc?

Wind Star

kendrarajan said:

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!

MTC/M2B

Hi, kendrarjan. My 14 year old daughter also had the very same thing you do. she was dignosed and had her first surgery when she was 8. She's had both sides of her thyroid removed and 6 weeks of radiation, 5 years ago. We found out last year that it was definately back. There's a spot on her skull spots on her right lung, one right rib, i believe her L10 vertrabre, and her liver has several tumors in it. She is in a field trial group at NIH in Bethesda Md for the drug Vendapanib. It has been aproved for adults 2 years ago this month, but their working out the procedure for kids. So far it's holding everything at a stand still, and the places on her eyelids have shrunk, the one on her right has gone! They are also testing a new drug up there. I'm just thankful that she was able to get in there, because her cancer started spreading like crazy. I'm also thankful that there are several drugs out there either available or in field trials for MTC. At least it's an option for surgery.

Dwani

Medullary THyroid Carcinoma

Hello, Guess what? I am one in a million Men "according to my Doctors " to have Medullary THyroid Carcinoma. 

Based on my Age diagnosed at the time 29. and also based on the type of cancer which Only Affect "WOMEN".

So yes i am a Young Man diagnosed with Medullary thyroid cancer and i had a total thyroidectomy in 2011 and doctors said there is no cure for this type. RAI will be of no use to me according to them so i guess i just have to eat right pray and stay focused at living a good life.

Wow Right?? and im loving it... yea right... i gotta take levo thyroxine for the rest of my life, im on 100mcg but i skip a day becuz it messes me up if i take it everyday.. i feel wierd. i gotta keep doing checks CEA tests and Calcitonin Tests also with T3 T4 and TSH tests.. yup

THats my life now, just wanted to let u know that you are not alone. Im in the caribbean now just trying to eat alot of good stuff, everyday i research online to see if there are any methods to try out.. Im staying away from fried foods, eating alot of carrots, not eating fish anymore, lil meat and egg whites, using Virgin coconut oil instead of the regular oils to cook and keeping away from excess sugar.. So no sugar in my teas and no sugar in my nnatural juices... its tough but im working it

Just a lil encouragement for yall in my shoes 

Hope this helps 

Bless

Chrisibhanson

Dwani said:

Medullary THyroid Carcinoma

Hello, Guess what? I am one in a million Men "according to my Doctors " to have Medullary THyroid Carcinoma. 

Based on my Age diagnosed at the time 29. and also based on the type of cancer which Only Affect "WOMEN".

So yes i am a Young Man diagnosed with Medullary thyroid cancer and i had a total thyroidectomy in 2011 and doctors said there is no cure for this type. RAI will be of no use to me according to them so i guess i just have to eat right pray and stay focused at living a good life.

Wow Right?? and im loving it... yea right... i gotta take levo thyroxine for the rest of my life, im on 100mcg but i skip a day becuz it messes me up if i take it everyday.. i feel wierd. i gotta keep doing checks CEA tests and Calcitonin Tests also with T3 T4 and TSH tests.. yup

THats my life now, just wanted to let u know that you are not alone. Im in the caribbean now just trying to eat alot of good stuff, everyday i research online to see if there are any methods to try out.. Im staying away from fried foods, eating alot of carrots, not eating fish anymore, lil meat and egg whites, using Virgin coconut oil instead of the regular oils to cook and keeping away from excess sugar.. So no sugar in my teas and no sugar in my nnatural juices... its tough but im working it

Just a lil encouragement for yall in my shoes 

Hope this helps 

Bless

medullary thyroid cancer

I'm a 54 year old female that was diagnosed with Medullary Thyroid Cancer in 1992. I've had three surgeries. Lately my calcitonin and CEA are both elevated. Also feeling discomfort on the left side of my neck. Getting back into doing research and found this website.

I want to let Dwani know that when I was diagnosed I met with an older gentleman (maybe 60's) who'd had MTC for nearly 20 years. He was dressed to go play tennis when we met. One of the doctors I was talking to about my cancer put us in contact with each other. This man had a good sized tumor on his neck and said he would probably have another surgery soon. His Calcitonin levels were pretty high too. I didn't stay in touch with him, but the only other person I actually met with MTC was a man--thought you'd like to know that.

I wish you all the best, everyone who has posted. I read somewhere online tonight that 1,000 people a year are diagnosed with Medullary Thyroid Cancer. I've always wished I could have translated those odds to something a bit more lucrative.

THYGUY

Chrisibhanson said:

medullary thyroid cancer

I'm a 54 year old female that was diagnosed with Medullary Thyroid Cancer in 1992. I've had three surgeries. Lately my calcitonin and CEA are both elevated. Also feeling discomfort on the left side of my neck. Getting back into doing research and found this website.

I want to let Dwani know that when I was diagnosed I met with an older gentleman (maybe 60's) who'd had MTC for nearly 20 years. He was dressed to go play tennis when we met. One of the doctors I was talking to about my cancer put us in contact with each other. This man had a good sized tumor on his neck and said he would probably have another surgery soon. His Calcitonin levels were pretty high too. I didn't stay in touch with him, but the only other person I actually met with MTC was a man--thought you'd like to know that.

I wish you all the best, everyone who has posted. I read somewhere online tonight that 1,000 people a year are diagnosed with Medullary Thyroid Cancer. I've always wished I could have translated those odds to something a bit more lucrative.

I am almost the same age and

I am almost the same age and have had MTC for 3 years now and now face a climb in Calcitonin numbers again so it is a tough one because there are very few results to refer to and few Docs who have much info on.  I hope the 2% of sufferers of this uncommon Cancer the best of success.