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Medullary Thyroid Cancer - Any advice?

nellinoz
Posts: 5
Joined: Jul 2012

Hi everyone, Just wanting to shre my experience, so far, with MTC. Maybe somebody out there has had similar experiences. 2010 - first had pain and swelling in neck and down left arm. GP said it was a pulled muscle. After 4 more months of discomfort went to another GP. after noticing my trachea was pushed to the right she digged with her fingers under my collarbone and found a large nodule. Ultrasound found large nodule off the bottom of the left lobe,(FNB inconclusive). Surgery, April 2011 total thyroidectomy (after insisting) what the surgeon thought would be a simple operation turned into, in his words "extremely difficult" 4 hour surgery.
Diagnosed Medullary Thyroid Cancer, cancer had grown between the esophagus and trachea, wrapped around the carotid artery with a "web" invading towards the cervical spine. No dissection done - too dangerous, 10% of tumour left behind. Surgeon referred me to have EBR, then called me back and referred me to a clinical trial. Upon seeing the endocrinologist for the clinical trial he believed his associate could do further surgery to remove the tumour load. Aug 2011 - Surgical team of 3 did mammoth surgery, Left & Central neck dissection with Sternotomy for mediastinal mets removal. Right neck untouched.Cut the laryngeal nerve had graft done,voice now is better but weak at times, esophagus had to be repaired but the tumour was only shaved off the trachea,left with numbness of left side of face and neck and weakness of left arm.PET/MRI scans all along have shown uptake in porta caval nodes on the back of the liver and multiple nodules in lungs but due to sarcoidosis history surgeons do not want to do biopsies despite increased uptake on scans. Lymph nodes removed from mediastinum were a mix of dormant sarcoid and MTC mets.
Now Drs do not want to offer any further treatment even though calcitonin has quadrupled since Aug surgery, no surgery, no radiation, will not even give a prognosis. Now exploring Drs overseas, I am in Australia - any recommendations? Apologies for the long story - but this is the edited version;)

sunnyaz
Posts: 582
Joined: Oct 2010

If you are able to come to the US there are many doctors here that would take your case. You can email or correspond by phone with them before you commit to the trip. Many of the people on this site have had great treatment at MD Anderson. I am hoping that they will chime in on your post and give you more information. I am not familiar with the facility. My cancer was Papillary and I have a wonderful Endocrinologist/Oncologist who is also a surgeon in Tucson, Arizona. His name is Dr. Marlon Guerrero at the University of Arizona Cancer Center. You could try to contact him to see if he would take your case. If you are interested I would be happy to give you his contact number or you can do an internet search for him.

I wish you the best and I am so sorry that this went for so long undiagnosed. I am not sure what the Health Care system is like in Australia but in the US doctors are held accountable for the mistakes.

Blessings,
Julie-SunnyAZ

nellinoz
Posts: 5
Joined: Jul 2012

Thanks so much for your reply SunnyAZ. Yep Drs here are responsible for their actions also but I suppose they haven't really done anything wrong, they are just not doing anything at all now! One of the surgeons I had for the major surgery is the best we have here and he did do a good job with dissection but with the extent of the cancer I expected him to dissect the right side also and we had discussed this prior to the surgery. But at the follow up appointment he said it was far too dangerous at the time because the length of the surgery and tired surgeons do not make good surgeons. I can appreciate this, but doesn't help me in the long run. The 'wait and see' approach is not something I am comfortable with which is why I am exploring the U.S. I will look up the hospital you recommended and Dr Guerrero and will let you know if I need his direct contact.
I have read that EBR has had some positive results with MTC even though most reports and what my doctors tell me is otherwise! They are scared that I will lose my voice altogether and end up with a feeding tube if I have EBR due to the scarring in the neck area, but they thought this would be the case going into the 2nd surgery! It is all very confusing and frustrating and I just want to do whatever I can to get rid of it! Thank you again for your reply and wish you all the best.

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

Of course, every case is different, but here is my experience...I had papillary, not medullary but our presentation was somewhat similar. I too had a large nodule deforming the trachea by the time it was discovered. Longish surgery where the surgeon actually ended up scraping the trachea in an attempt to remove as much tissue as possible. He also had to sever my right laryngeal nerve because the tumor had encased it. Fortunately for me, that vocal cord is stuck in the medial position so I do okay with swallowing and speaking. Can't yell and have to swallow foods and liquids a particular way, but not a problem.

I was referred to a radiation oncologist very shortly after my surgery and RAI because they felt that the RAI would not penetrate the cartilage in the trachea. I live in Alaska but ended up meeting with a radiation oncologist at the Mayo Clinic in Rochester Minnesota - Dr. Robert Foote - who specializes in head and neck radiation. I went through six weeks of EBR there and was able to stay in an American Cancer Society lodge nearby for free while going through the treatments (so grateful to ACS and donors). My EBR was done Oct-Dec of 2009. I kept a journal but I have to find it...I did not have any further issues with vocal cords during or after EBR. Mayo actually had me see a speech pathologist and go through a swallow test before and after radiation. The test involves ingesting about four different items laced with barium, of varying consistency from thin liquid to solid. They xray you as you swallow to see if you aspirate. I was fine so they didn't have any special advice other than a few vocal exercises I could do to strengthen my voice and working cord.

EBR can make it difficult for surgeons to do further work in your neck if needed down the road because it messes with the tissues. My TT surgeon was opposed to it for that reason and also he was concerned that it would damage my salivary glands and sense of taste. However, if the benefit outweighs that risk of future potential, then it may be worth considering. It's not easy. Some need a feeding tube because EBR to the neck can fry your esophagus (mine naturally deviated to the left and the area of concentration for me was the right, so I lucked out there). They did a wide pattern though, to catch the lymph nodes and to cover a good length of the esophagus. They kept to just below my jawline so salivary glands and taste were not affected.

Mayo is just one place with specialists that may be able to offer a second opinion - but they do deal with many overseas patients. I met a few during my stay who had come from pretty distant places. I was able to make initial contacts via phone and email, and after sending some records was able to get an initial recommendation as to whether or not EBR was warranted in my case.

If you decide to do it, I can tell you more about my EBR experience. Second opinions are wonderful in terms of making such a big decision - I got about five 'second' opinions before committing to it. I know it's not easy making these decisions. Very best to you.
eileen

sunnyaz
Posts: 582
Joined: Oct 2010

Eileen, thanks for bringing up ACS and the help they provided. I am an active committee member for ACS Relay for Life in our town and we work very hard to raise money (over $62,000 last year) for just this reason. I encourage everyone to get in contact with them and get whatever help needed to get the care you need. They are advocates for us and are there to help. I also want to encourage all of the members of CSN to get involved in ACS fundraising. We can help advocate for ourselves and others.

Blessings,
Julie-SunnyAZ

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

i was a sporadic donor for years before I was diagnosed. I give regularly now. The Rochester lodge was giving away a quilt a week via a raffle - to folks staying at the lodge. I am about to work on another to give away - sent one last fall. That's also a nice way to give back for folks that enjoy sewing.

jenntony12
Posts: 1
Joined: Aug 2012

I suggest you see an ENT oncologist. You need to have your cancer staged, and given a prognosis. Also, there are tons of clinical trials for new chemo agents on the market. Chemotherapy is not curative in MTC, but prolongs progression free survival. My husband was diagnosed in May 2012, has had a total thyroidectomy and neck dissection in July. We were told that his cancer is terminal, but that he may live for years. He is believed to have metastasis to his liver. We have a one year old, and I am pregnant. His diagnosis came after 4 years, and two doctors missing his diagnosis.

Wind Star
Posts: 6
Joined: Apr 2013

My 14 year old daughter is currently on a field trial for a drug that was approved for adults 2 years ago this month. The one she is on is Vendapanib. Her cancer has also spread to several areas of her body including her liver. the drug has shrunk several of her tumors, and has the rest frozen in their tracks. She was born with it and MEN2b. A genetic mutation with in her. There is others on field trial now. Even though it's not curable now, but any one of the new drugs they test could be the cure. Jenntony12, I wish you and your family so much good luck. Everyone else on this page, don't give up!

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