alcohol ablation

Hey everyone!
If any of you have read my posts before you will know im 3 years post tt for ptc with a possible reccurrance but my nodule is in a spot that would be too dangerous to surgically remove or even biopsy (is what I am told anyway)
Im refusing rai until at least June as I have started a new job and am not protected for this sort of time off work and hypo hell(ya, I dont handle it well) and no I cannot do thyrogen I cannot afford it and my doctors say no anyway.

I have read some info on alcohol ablation and was wondering if anyone has had it? What is it like? What sort of patient is a good candidate? No hypo crap right?

THanks!

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I haven't had it, but I have read that alcohol ablation can be damaging to surrounding tissue so it is not typically recommened if you can still uptake RAI.

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It sounds really promising but may be difficult to find an experienced doctor outside of Mayo?

good luck!

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Uggh lol thanks guys

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I am going to Mayo in March to see if I am a candidate for alcohol ablation. My understanding from the recent ThyCa convention is that RAI has a hard time penetrating lymph nodes. If you have spread into your neck nodes, etc., you may be unnecessarily exposing yourself to more radiation.

Check the speakers from this year's ThyCa convention: Ohio State University and The Cleveland Clinic may be other options to Mayo.

http://my.clevelandclinic.org/disorders/thyroid_nodule/hic_thyroid_nodules. aspx
(read down to "How are Thyroid Nodules Treated?")

http://www.ncbi.nlm.nih.gov/pubmed/20001718
(Written by Dr. from Ohio State University)

Lisa :-)

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Great Info!!

:))

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Great info thanks... I was hoping for it to be available here in portland though

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I am full of questions please bear with me. Why do your doctors recommend no Thyrogen? Where is your tumor?
For some medications if you write directly to the company they will give a freebie. Don't know if this is possible with Thyrogen.

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I can't afford thyrogen. I have a nodule right nineteen my carotid artery and trachea like right where they v so no one wants to biopsy our surgically remove and a questionable node in my right lung

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It seems like if they won't stick a needle in your neck for a biopsy, alcohol ablation would definitely be out of the running (they will be using a needle, and destroying tissue).

I am wondering if finding doctor with an ECNU certification might be helpful. They might feel more confident taking a biopsy given their additional training and aid of sonography.

Go to this website:

https://www.aace.com/college/ECNU

Scroll down and click on "Registry" to find the individuals who have this certification. I see one in OR.

Good luck!

Lisa :-)

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Hi Faithbrewer5,

I would encourage you to do Ethanol Alcohol Ablation if it's something you can do! I have been battling Thyroid cancer for almost 6 years. I have had 3 surgeries and refused the radioactive iodine treatment. I started the Ethanol injection treatment in September and I really don't understand why it's not done more!! I went to Mayo Clinic in MN. I had 2 lymph nodes that were cancerous and both were around 2cm in size. I have now had three injections in both of the lymph nodes. They have both shrunk in size and my Thyroglobulin has dropped significantly. That beats radioactive iodine and surgery any day of the week!

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I havnt read up much on alchol ablation, but was wondering, is it just for reoccurence in just a few nodes, or with someone like my son who had Mets to lymphnodes in neck, very extensive!
Has had one round of RAI (125mci) and tg has come down to almost undetectable, Doc wants to do another round of RAI.. Its been one year since, so we need to start making decisions after his appt next month, for recheck...We are not at a TC specility hospital, so I appreciate any feed back.....We worry about reoccurence due to the extent of his disease.

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Hi Lovinvt

Definitely look in to alcohol ablation. They do not have to do the nodes all in one shot, and RAI does not penetrate lymph nodes very well––so you might be exposing your son to more radiation unnecessarily. I am at Mayo in Rochester, MN right now receiving ethanol ablation. If you can drive, if you can buy cheap tickets on Southwest.com, it is so worth it to see Dr. Ian Hay. There are other places in the country that do alcohol ablation: a look at this past year's ThyCa convention speakers might be able to help you find some close to home (but I would come here ;-)).

My Father-in-Law is a small particle physicist, and I have been dealing with this disease for 12 years. He does not take 125 mci of radioactive iodine lightly. Dr. Hay doesn't believe in it for the most part. Most people I meet with thyroid cancer have had spread into the lymph nodes of the neck: I would not consider your son's case extensive. You can live a normal life span with an almost undetectable amount of Tg.

-Find a thyroid cancer specialist. Get a second opinion.
-Be VERY wary of more radioactive iodine––losing salivary gland functioning will impact your son for the rest of his life (very common side-effect with this much radiation), and radiation increases his chances for other cancers.
-Look into alcohol ablation. It is the future of treating thyroid cancer.
-Move slowly and with education. Thyroid cancer (depending on your son's type) will wait.

Hope this helps..

Lisa :-)

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I was diagnosed with papillary thyroid cancer in December of 2011. I had surgery 4 weeks ago to remove my thyroid. There was no spread to other tissue or lymph nodes but my BRAF test was positive. Since the cancer was on both sides of my thyroid they would like me to do RAI. My endo is prescribing 50 units. I have never heard of alcohol ablation. My surgery was do e at Yale. Do you think that I have the option of doing that rather than radiation? Has anyone else heard of BRAF? This is the first I'm hearing of it.

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Hello Lisa,
Thanks so much for the Info on alchol ablation...I will have to ask my son's Radiiation oncologist....Since the RAI did uptake and his TG dropped from 164 to less than 0.2, Im sure his doc would want to do a second round, he has already said this, before I demanded blood work at 6months and again after 8 months post RAI.. ....After reading your post, we will not proceed until we get a second opinion. Also you mention you dont think my son's PTC is extensive, is that because he doesnt have spread to lungs or other vital organs? he had over 80 lymphnodes removed in 3 surgerys... My thoughts are: Can there be more of these sneaky nodes brewing!....If this is the case down the road.. how many Alcohol ablations can one have, if suspicious nodes show up again or TG starts to climb?

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Is the BRAF to genetically prove you have the gene that is present for thyroid cancer to develop. I have a gene in my family as well that predisposes us to cancer but I do not know the name of it. I will have to find out. I do not know the importance. Just sounds like something else to worry about.

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Hi Lovinvt:

After my visit with Dr. Hay, I know he would not find a .2 Tg reading worth treating, especially if my blood work was stable over a period of months and/or years (unstimulated blood work––no Thyrogen).

Most papillary thyroid cancer survivors I meet have had spread into the neck lymph nodes: I don't believe this is uncommon, and because papillary thyroid cancer is so treat-able, lymph node spread does not carry the same grave connotations as other types of cancer. Dr. Hay was telling us about a study that was done on a group of women in the 1960s who refused to have their neck lymph nodes removed. The cancer was still in the same place 30 years later. The neck lymph nodes do a good job of keeping the cancer in (and unfortunately, RAI out).

After attending the ThyCa convention this past year, I understand that the newer beliefs on papillary thyroid cancer is that it is pretty much impossible to get rid of all of it. Cells are small, and can hide out in lymph nodes, etc. for decades. This is not necessarily a bad thing as long as they remain stable.

If your Tg levels start to rise (as mine did), you search for the cancerous nodes with a trained neck sonographer (the nodes have a distinct appearance) and blow them away with alcohol ablation as needed. Your son may need to beat his cancer back with a stick once a decade, but this is do-able.

Dr. Hay told me that if he had treated me in 1998, he would have performed a neck-mapping sonogram to determine where the cancer was, removed my thyroid gland, performed a very clean neck dissection (lymph node removal), and offered me a handshake ;-). He would have followed my cancer status with unstimulated Tg blood monitoring (no RAI, no Thyrogen, CAT scans, PET scans, MRIs, and all the other torture I endured over the last 12 years). If my unstimulated Tg levels started to rise and got to a number he found significant (we are talking whole numbers), we would do what I just had done: neck sonography and fine needle aspiration to determine cancerous nodes, then alcohol ablation. I only had 1 cancerous node after 12 years.

If you go back in this thread, I believe I have links to The Cleveland Clinic and another place in Ohio that may do alcohol ablation. This may be closer to home for you, but if you are interested in trying to meet with Dr. Hay in Rochester, MN, just let me know. Some doctors tend to minimize the impact thyroid cancer and it's treatments can have on your life, but if it were my kid I would take him to the experts––people who make thyroid cancer their life's work.

I'm not a doctor, and what I write is how I my brain has absorbed all the information given to me (so double-check for accuracy ;-)), but I hope this helps. Another LARGE round of RAI seems like overkill, and most likely unhelpful and very possibly harmful (IMHO). My RAI dose in 1998 was 29.5 mci.

Hope this helps...

Lisa :-)

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Does alcohol ablation destroy surrounding tissue? I wonder exactly what does that mean?

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Yes Lisa, this is very helpfull ...I will also ask about the neck-mapping sonogram ,I take it, this is not the same as a ultra sound? Interesting! Is it done by a Endo or trained x-ray/ultra sound tech.
My sons TG was done in dec 2011 so this is all new and good news for us...Just want to educate myself on how to follow up, and be prepared if his Tg should climb in the future.
You are so right about RAI and the saliva gland damage, my sons dentist brought this to our attention, and there is damage! He now has to have his teeth cleaned every 3 months, plus biotine mouth wash..
Im hoping and praying his tg marker will stay in this range...We do not want RAI treatment again! I will educate myself as much as possible in this Alcohol Ablation...I thank you and please do keep us posted after your visit to the Mayo Clinic.

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Hi Lovinvt and DrTaylor22:

This is an excellent article written by someone (who was on this chat board) who attended the Mayo Clinic shortly before I did. Her article describes my experience and understandings to a T.

https://www.ecarediary.com/viewblog.aspx?BlogID=577

DrTaylor, I know there are medical articles you can read (look at the references mentioned at the end of the article) which may better describe why the ethanol does not affect surrounding tissue. Dr Lee (the doctor who performed my alcohol ablation at Mayo), said he expected the alcohol to collapse my cancerous lymph node down, and eventually form a little internal scar. Maybe the lymph node sac that keeps cancer in and RAI out, also holds the alcohol pretty well?

Lovinvt: A sonogram and ultrasound are the same thing. You don't need a doctor to perform one, just someone who is trained to know what cancerous thyroid lymph nodes look like on an ultrasound (they have a unique appearance). You will probably find this person working with a doctor who specializes in alcohol ablation.

Lisa :-)

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Hi Lisamg_sd! I've just read your replies and advices here and it gave me so much enlightenment. I have been battling Papillary Thyroid Cancer since 2009, I had Total Thyroidectomy on Nov. 2009, followed by RAI 150mci on Jan.2010 then after 6 mos. had my TG checked it was just on borderline (2.06)... So my Endocrinologist advice me not to have another RAI but continue monitoring my TG every 6 mos. and do neck ultrasound every 3mos. On Dec. 2010, new lymphodes were seen in the Ultrasound at my left and right jugulars and on Jan.2011 my TG was already 3.46. So I was given 2 options, either to just have RAI but was warned that it's not an assurance that it will get rid of the lymphnodes or have another surgery then RAI after. I don't like the options but what choice do i have? So for me to decide well, i had a diagnostic RAI (5mci) and it has an uptake so we proceed to have the RAI instead, I was given 200mci last July 2011 and the body scan shows a functioning metatases on the left submandibular lymphnodes...but this was I think missed out by my Endocrinologist for we never talk about this. I just understand it now though. All in all my I have consumed 355mci of RAI already.

Then this Jan. 2012, I had again an ultrasound check on my neck and more lymphnodes were seen =( they are at my left and right Posterior triangle, the submental, and the previously existing left and right jugulars and few minimally enlarge submandibular lymphnodes but my TG dropped to 0.9...so my Endocrinologist adviced me that we'll just closely monitor this before we'll decide what action to take with regards to my lymphnodes. I just had a latest ultrasound again last Apr. 23 amd lymphnodes were unchanged in size from the Jan. result but TG is ow 4.4...so now both my Endocrinologist and Surgeon advice me to have 2nd surgery followed by RAI.

I searched and ask around and prayed for God's guidance and I had a 2nd opinion with an ENT surgeon this time that specializes on head and neck. When he saw my last post RAI body scan (aug.2011) w/ the impression "functioning metastases on the left submandibular lymphnodes" and looking at the ultrasound result of my neck, he then suggested that I should have another whole body scan first to check and know where this is coming from, or what causes my lymphnodes maybe to recurr. I also had FNAB on one of the lymphnodes and it says Reactive Lymphoid Hyperplasia Not Mets...but the ENT surgeon said FNAB is not usually accurate. So the ENT surgeon referred me to a new Endocrinologist that works w/ him in the same hospital since this ENT surgeon works at a different hospital at a different city from my previous Endocrinologist.

The new Endoc. agreed with the ENT surgeon's suggestion to let me undergo again another Body scan. She will give me 100mci RAI for this. I was ok with her order but I requested to do the RAI and post RAI body scan where I had my last RAI cycle becoz it's much nearer from our city. She was OK w/ it and gave me the request order for me to give to my Nuclear Medicine Doctor. When i explained and discussed this to my Nuclear Medicine Doctor, he said he will only give me 3mci RAI and NOT 100mci. He's stand was no matter how small the RAI dose, if there's a cancer cell in the body or wherever, it will uptake amd will light up in the body scan. So I informed my Endoc. about this and insisted also that I should have 100mci becoz diagnostic RAI (small dose) is no longer practice by them and according to her, small dose RAI sometimes cannot penetrate the cancer cells that maybe hides between or beneath the lymphnodes. Also, she said, if the body scan shows nothing and since my TG is beyond borderline, they might suggest to have a PETscan on me which is way too expensive here in our country. That's why she said it's crucial to have the right dosage to have a much accurate result on my post RAI scan.

Now I am confused who to follow. But as I read here that RAI has really adverse effects on our body, I am thinking to just do the 3mci RAI post body scan and hopes for a good result...but still I have doubts that this very low dose may give us false results on my body scan and this scan will be the basis of everything.

I am from Maasin City, Southern Leyte, Philippines. How I wish I can also have alcohol ablation like you did but I am sooo miles away from where you had it... For me it's like wishing a wishful thinking. I never heard of that here in the Philippines, or I don't even know if we have it here in our country. My doctors never mentioned this to me. Due to my dilemma over this, my husband and I have been searching the internet and we found this, Praise God! This has been a roller coaster ride for me and our funds are a little short for high end test such sa PETscan much from going there. So if it's not too much to ask, can you pls refer my case/situation from your doctors there on what's there stand about this. Time is of the essence here as my Nuclear Medicine doctor scheduled me to have the 3mci RAI this May 28 and have a post RAI body scan on May 30. I am now off Thyroid hormone pill and on low iodine diet.

Please help me find right answers, methods, management, procedure to my case. Thank you so so much! This has given me new hopes! =)

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