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recurrent thyroid cancer

songsmithp
Posts: 2
Joined: May 2012

I have recurrent thyroid cancer and was told I am non-avid which means rai did not work after two attempts. I get ultra-sounds every 6 months and if growths arise a surgeon removes them in a neck dissection. My Tg levels are checked every 6 weeks and my synthroid levels are kept high to supress Tg levels. On December 7 of 2012 I had the most recent removal of cancerous lymph nodes and had a chyle leak because of a tear in the thoracic duct that was eventually stopped with another surgery to stop the chyle leak. I am not a candidate for beam radiation because of the damage it would cause. It has been 3 and one half years since my original diagnosis after finding a lump near my ear. As far as I have been told the cancer has not traveled from my neck to other parts of my body. Using scanning traces of RAI the cancer has not shown up elsewhere on whole body scans although if I am non-avid and do not absorb the RAI I do not see how it could show anything. I have also had PET scans.I guess I will have future surgeries if lumps appear. If anyone has similar experiences, would you care to share? sincerely Richard

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Richard,

Have you been tested for the B-RAF mutation gene? B-RAF positive patients are less likely to be RAI avid. Forty three percent of Papillary Thyroid Cancer patients will test positive for it.

I am positive, but luckily I was able to uptake. I have already maxed out my doses and will no longer be avid, so I am now in the same boat as you.

I recently heard about a research study being done at the University of Arizona. I am a patient of the University of Arizona Cancer center here in Tucson. This study is using Bi-sodium Carbonate (baking soda) to kill/prevent cancer cells from growing. I did some research on my own after I saw it on a newscast one day. I learned that cancer can not live in an oxygenated and high alkaline environment. Baking soda causes the body to be more oxygenated and increases the pH of the body to a higher alkalinity. I encourage you (and anyone reading this) to do an internet search of this theory. Don't forget to check out any risks involved. Decide if it is right for you and give it a try if it seems right.

It began many years ago with an Italian Oncologist, Dr. Simoncini who discovered it. He cured many of his patients and then lost his license for "treating with unapproved treatment methods." Sodium Bicarbonate use actually goes back to the Torah. Specialist stand to loose a great deal of money if something so simple were to actually work and cure people. There are many articles and videos on the internet. I literally spent hours reading and watching videos on my computer. I have been drinking an eight our glass of water with one teaspoon of baking soda dissolved in it every night for the last month. I will see if it works in September when I go back for a follow up US. In March a small lymph node was discovered as suspicious but it was too small to biopsy.

Just a short bit of history on me: I am a Papillary Thyroid survivor with lymph node metastasis X2. I have had three surgeries and two RAI treatments since November 2009. B-RAF was discovered after my first right neck dissection. I don't post on this site as much as I used to. I work fifty or more hours a week in the medical field and I drive over sixty miles a day not leaving me much time for internet posts.

I wish you the best on your journey and I hope you never have another recurrence.

Blessings,
Julie-SunnyAZ

amorriso
Posts: 186
Joined: Oct 2010

Very intereseting information. I am definately going to do some reading on it

Thanks for posting

sunnyaz
Posts: 582
Joined: Oct 2010

You are welcome. Hope you are doing well!

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Richard,

If future sonograms indicate further growth and if these growths are in your lymph nodes, you may want to think about and talk to your surgeon about becoming more aggresive in removing them. Instead of waiting for a node to show a problem, take out all the nodes in a given area. This was what my surgeon recommended and what I chose to do. My initial diagnosis was after a lymphadectomy of a swollen node showed thyroid cancer. The surgeon recommended a total thyroidectomy and a modified central neck disection to remove most of my surface neck lymph nodes on the right side, 50 + nodes in all, only two of which showed any cancer. He recommended the right side only because the original swollen node was on that side and node involvement is almost always unilateral {one side only}. After reading here about people who have had to endure multiple neck disections I'm glad he suggested and I chose this approach. I'm currently 16 months post surgery for Stage III Papillary Cancer, without any signs of recurrence so far, but of course, I'll still have a sonogram and blood work done annually for some time.

Alan

renhig1
Posts: 1
Joined: May 2011

Hi Richard and any other of us Papillary survivors. I had my thyroid removed in 2004 and thought it was over. Then in 2010, I had a recurrence in the lymph nodes on the right side of my beck. Surgeon did a dissection up to the back of my ear. THEN, in 2011, I had a PET Scan for a back surgery that was planned and that showed metastases in my trachea between the breast bones. My surgeon told me to let it go cause they never know if it's cancer and they can't keep going in removing these things. So I went ahead with the back surgery and after months,I followed up with that PET scan and ended up in Nuclear Medicine in NY city Mt. Sinai Hospital for a 4 day stay and a 225 millicuries RAI treatment. The doctor told me there was no uptake in my trachea but that the uptake was substantial in both lungs at Stage 4. I almost had a heart attack. It reminds me of the earlier time in 2004 when a couple of doctors actually told me this is the "GOOD" cancer and not to worry. No big deal.
I recently found out there was a successful clinical trial at Sloan Kettering (I think and there is now a chemo for those of us who are resistent to the RAI131. I'm sorry we all have had this experience but thanks for your information.

Hannah1
Posts: 63
Joined: Jun 2012

Hi everyone I am new to this posting. I was diagnosed with uterine cancer on 6/2004, had chemo and radiation.
On 4/2008 I was diagnosed with breast cancer and also had radiation. Then on 4/2009 I was again diagnosed
with stage 2 papillary thyroid cancer. I had total thyroid tommy and RAI. Everything went well. I was closely
monitored for my labs. Had body scan on 6/2011 and was neg. butTG was increasing from49 last year to 119 now.
Just finished full body scan 6/2012 and was neg. but PET/CT also done with positive metastasis to both lungs
Also seen inflammation on large intestine. I just finished 2nd round of RAI with higher dose 7 days ago and did
post RAI scan today. I am afraid they saw something because they had to repeats he scan especially on my neck
and chest. This is my first time to share my cancer experience. Has anyone know or gone through treatment
for lung metastasis? My Endo dr is on vacation and I won't see her till the 28th. She also told me that thyroid
cancer is a very slow growing cancer.

jamiesadler
Posts: 1
Joined: Jul 2012

I just had my two year whole body scan to check for recurrence. In 2010 I have a complete thyroidectomy and RAI treatment to ablate any remnants. My 1 year scan was 100% negative. Now I am being told I have a massive area on the right hand side of my throat as well as lymph nodes in the sub-mandibular area and in my right salivary gland. My Endo is recommending surgery but my surgeon is saying my WBS, ultrasound and ct's are not adding up and he wants to send me to a specialist at the univ of Oregon. I am kind of getting a bit nervous. It has been 2 weeks since I have the RAI for my body scan and I just got the taste of metal out of my mouth.

alapah's picture
alapah
Posts: 257
Joined: Oct 2009

Does your latest WBS show uptake? Do you know what your Tg (thyroglobulin) levels are? It's important to know if you have a positive Tg reading. Tg is emitted only by thyroid cells so it it's presence is an indication that you have remaining thyroid cells in your body, not necessarily in the neck either. Sometimes thyroid cells become resistant to iodine so when they do a small dose of RAI the WBS may show no uptake, even though cells remain. If you have a positive Tg level and no uptake, it could be a sign that the cells are not taking up the iodine.

Have you been getting CTs? sounds like it from your posting. Are the masses showing up on CT and ultrasound but not WBS? Lymph nodes in the neck can usually be biopsied (has that been done on some of the ones noted by your endo? It does sound like you need to see someone really familiar with thyroid cancer.

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