RAI Treatment

Hi Rockon79,

I had RAI for my thyroid cancer (cancer came back three times and I have RAI twice). The first time I remember having to stay in the hospital for 4 days until the geiger counter was low enough for me to go home (not joking!). The second time (a year later) I was sent home and had to stay 6 feet away from kids and women of childbearing age for maybe a week.

Back then, they walked in covered in protective clothing, handed me a dixie cup with 3 pills in it and told me to swallow them with some water they gave me. That's it. Not sure it is the same today as this was back in 1997 and 1998.

The RAI comes out of your body through bodily fluid (urine, sweat, etc...) so I would clean up the bathroom around me the second time, when I was at home, and at the end washed all of my clothes, towels, sheets separately. The first time no one was allowed in or out of my hospital room without protective clothing on and food was left at the door.

I remember being nauseous the first time, but not so much the second time. The hardest part was not having any energy due to not having a thyroid and not being on any medication so that the RAI would uptake.

I also remember that my salivary glands hurt (from the RAI) and my doctor sent someone to the buy me lemon hard candy to suck on (while I was in the hospital) which helped over time. I knew what to expect the second time and had some on hand.

My cancer was on both lobes and both were large tumors. My scar runs from ear to ear as I had many cancerous lymph nodes, too. If I knew then what I know now, I would have requested physical therapy for my neck muscles to recover. My neck, even after 25 years, has given me some issues.

Good luck to you!

Many on this forum have had their thyroid removed due to cancer, yet few if any mentioned having RAI. RAI was presented to me as a secondary (almost mandatory) step necessary to complete cancer treatment. I wonder if more have had this procedure than I realize, or maybe many have had successful thyroid cancer treatment with just the removal of the thyroid? I have done some reading about RAI and what bunky2078 said about the side effects is unfortunately true. Not looking forward to having this done, but, at this point I feel I have no choice. I am somewhat miffed that RAI and it's life altering complications (for a short while, anyway) weren't even mentioned before the surgery. I have tried to research this and think this out, so I am not paticularly happy at the present-any suggestions?

My last advice would be to make sure you are at a facility that handles a lot of thyroid cancer as they will be able to better guide you to the right decision. Most local endocrinologists are dealing with diabetes. Make sure your doctor is familiar with the TC and frequently seeing patients with it. I have learned over the years that TC is a lot of "watching and waiting."

The one thing I have read was that RAI is not helpful for certain types of cancer….. Hurthle cell carcinoma is one of them. Maybe it’s worth a second opinion when you find out what type of cancer you have. Taking extra precautions always sounds good but if the precautions cause more harm than good maybe it’s not necessary so a second opinion might help. Good luck!

My primary was particularly alarmed about the size of my tumors when first discovered and made no bones about sending me to a surgeon outside of my immediate medical area. This surgeon does about 3 thyroid surgeries weekly, and because of the expertise he has gained through that experience , my voice box nerves and all of my parathyroid glands are unmolested and intact (apparently that is not the case with many-so thank you, thank you, thank you). My follow up team is local including the endocrinologist assigned to me. This doctor has ordered, what seemed to me, a full scale RAI without even having the results of the removed thyroid toxicology report! That kind of makes me feel like a number, and as long as all the boxes get checked I'm good regardless of what my personal situation requires. I have a post surgery follow up with the surgeon next week and I am going to directly ask him about my concerns. If my surgeon wants me to follow up with his team, I will do that even though the extra travel is a pain. I am also going to reach out to my local oncologist to get her opinion. After all RAI is a chemo therapy and seems it would fall under her auspices and not that of an endocrinologist (maybe I'm wrong. I really don't know). At this point, I do not have enough understanding to be comfortable with the up coming decisions I will have to make. This is extremely complicated and I would probably need years of med school to gain the knowledge I want so It will come down having trust, both in the people and the processes-hopefully I can find and do that!

Definitely get your diagnosis before deciding on RAI…..it might all be a precaution but not necessary or beneficial. Side effects might make the “precaution” not worth it unless necessary. Waiting is also a very nice option depending on the diagnosis.

After a complete thyroidectomy for PTC in 2021, I was referred to a radiation oncologist for a recommendation as to whether RAI was indicated. My risk factors were my age (70 at the time of my surgery), the fact that my nodule had slightly breached the capsule, and the size of the nodule that had been removed. On the positive side, the pathology report after my surgery said that the margins had been clean and there had been no apparent lymph node involvement. We discussed this and decided together that watchful waiting was a reasonable strategy and that we would regularly evaluate my TSH suppression and presence or absence of thyroid antibodies, and do regular ultrasounds to see if there were any signs of cancer recurrence. My cancer was staged as 1b. Four years out things still look good. An ultrasound 3 years out showed residual thyroid tissue in the thyroid bed but my thyroid suppression is good and I my bloodwork has not shown any signs of thyroid antibodies. The residual tissue did not look cancerous at this point and there were no concerning lymph nodes. So I continue watchful waiting under the care of an endocrinologist who is very experienced with thyroid cancers. I think you would benefit from having an endocrinologist who is experienced in treating thyroid cancer and perhaps an evaluation with a radiation oncologist who will partner with you in these decisions. Make sure you understand everything so that you can make a well informed decision.

I can not thank "bunky2078", ' koh", and "deborah1031" enough for taking the time to share the experience and knowledge they gained from their thyroid treatment. I have just received, what I perceived as "the toxicology report". It describes the size and shape of each lobe, the size and shape of the various tumors and nodules they found but uses absolutely no "medical cancer jargon" ( which I believe I would recognize but might not understand) in describing any other finding. It does describe the isthmus as "unremarkable" which is a good thing, and indicates no lymph nodes may be involved. Hopefully (maybe I'm being presumptuous), my oncologist or endocrinologist will call and explain, because I might be all wrong. In any case I deserve an expert to tell me if that is the total report and exactly what it reveals. At this point, I feel as if I am being left in the dark and I don't like it. Some of medical expertise that I need is limited in my area, so that is a complication. I am just going to have to stop and "catch my breath" from this thyroid cancer treatment whirlwind, slow down, get more answers and then decide from that point onward. Thank you all.

I think slowing down and catching your breath from the cancer whirlwind is a great plan. It is hard to think when you don't have enough information, don't know the lingo, and everything is swirling about. You are learning a new language, the language of medical issues of your thyroid. It is not an easy language to earn, but if you do it a bit at a time it will help you feel more in control of issues that have to be decided. Do you have a patient portal where you could request a call from your surgeon, oncologist, and/or endocrinologist to explain the report? Given what you said in your original post, I would try the surgeon first. He/she sounds very experienced. You also possibly could get a video appointment with the surgeon to get them to explain the report. And you could ask your surgeon for referrals to other endocrinologists more experienced with thyroid cancer and find out if they could see you virtually and go over your report with you (if your insurance will cover that). My cancer is handled by my endocrinologist at this point and he seems much more cautious about RAI from a few years ago.

Would you like the moderator on this forum and/or the forum participants to help you formulate your questions? We would need more information from the report to do so. For example, did they find cancer in the nodules? What type of cancer was it and is that a fast growing or slow growing type. Did they give you a stage for it? Did the surgery get clear margins? Are the size and composition of the tumors risk factors? How about your age? No lymph node involvement and an unremarkable isthmus are super great news. And your voice and your parathyroids were preserved--hurray! I really worried about those before my surgery.

Have you started on levothyroxine treatment yet? How are you feeling? Getting the right dose both to suppress possible remaining cancer cells and for you to feel like your normal self often requires some tinkering.

Keep us posted as you feel comfortable. It's a weird club to be a member of but the shared experience and knowledge are so valuable. A good friend told me, after my diagnosis, that her hairdresser had thyroid cancer thirty! years! ago! and is just! fine! Good to know but not! particularly! useful! for my own journey :).

The only scores I have seen are from the biopsy; the 3,6 tumor on left lobe was a TI RADS3, Bethesda category 111, the 4. tumor on the right was a TI RADS4, Bethesda category V1-papillary cancer. The removed thyroid showed many more tumors, which the toxicology report outlined. All were classified as a 4 or below, with only the known cancerous one (4.) being a 7. No lymph nodes were identified. I'll find out much more accurately when I speak to the surgeon shortly. I already have instructed his staff to send the completed tox report to my oncologist and, hopefully she will reach out to me. I have used the patient portal with both my local and the surgeon's medical facilities-its great for getting test results and keeping track of appointments but a big a pain for the numerous, duplicate, and unnecessary e mail notifications. I have also done zoom conferencing for previous treatments, so I am fairly set with that technology. I am 79. Until 5 years ago I have been extremely healthy and robust with a productive high energy level. Then serious prostate, lumbar and chronic pain issues really clouded my life and required major surgeries. I had highly qualified experts which resulted in a superior physical recovery and results in general (as far as medical quantifiability is concerned)-but it left its mark. I became physically lethargic with no energy, a mental malaise set in and depression followed. I gained weight around my middle even though I ate less (I have been skinny all my life and somewhat athletic, Its just awful!). I laid around for months, accomplishing only the bare minimum which just exacerbated the mindset. I had lost the joy of living. Then my pain team tried a new approach and the improvement was wonderful and dramatic- lessening the pain intensity and giving me a new out look on life-another words "I felt I was back in the game"! Then, as an ancillary discovery from an MRI for a different issue I found out I had thyroid cancer, and here we are! I do have questions, many sparked by what I have read here. The main one right now is; why have they recommended RAI before any other modality (radical-laced with side effects and possible gland damage) instead of first trying thyroid suppression and monitoring with blood tests, ultra sound, etc? What is wrong with "watching and waiting, when its worked so well for others with a similar diagnosis? I was placed on 125 mcg of levothyroxine since surgery and that has not been checked for my individual need even though I have met with the endocrinologist himself (not a staff peon)!. I sense he does not have the experience I need and will question him about this! Now after getting thyroid cancer and being forced to learn about it, I wonder how much of what I described was really caused by the thyroid cancer and not all of the surgeries Well, that's a synopsis of what is going on. Hopefully I answered some questions. I'm sure I've missed some and haven't the answers for others. Any further incite is appreciated.