CSN Login
Members Online: 12

Endo recommendation descrepancy-what is right? Is there any answer?

iggymurphy
Posts: 34
Joined: Sep 2011

I just met with a local survivor group....and am more confused than ever. Four patients have had the TT and are awaiting RAI (all with spread to lymph nodes). I am trusting my endo to make the right decisions but how can I do that when they all seem to have different ideas on how to treat!

Endo #1: recommends "low" dose of RAI, a very strict LID before hand (nothing from cans, yellow dye etc), will do trace test/WBS than RAI. OK to eat normal diet 4 hours after RAI, trace test/WBS 10 days after RAI.

Endo #2: recommends no RAI (even with a small amount of spread to lymph nodes), After a year, if still present after WBS, low dose RAI with a very strict LID before hand, stay on LID for 10 days after RAI, trace test/WBS 10 days after RAI.

Endo #3 (mine): recommends "high" dose of RAI, somewhat strict LID (never mentioned cans, but I found that out on my own.......), will do trace test/WBS than RAI, wait two days for normal diet, no WBS until 6 months later.

Endo #4: recommends "low" dose of RAI, no LID, will do trace test/WBS than RAI, no WBS for one year after RAI.

Endo #1 also stated that patient has a large amount of left over tissue near neck (based on TG levels..no scan) and that is why she is going for the low RAI. My endo never mentioned anything about this.

This is my life we are talking about. How can there be so much discrepancy and should I be seeking a second opinion? I am so freaked out and worried I can't seem to focus on anything (could be the no cytomel for last three weeks!).

CLRRN's picture
CLRRN
Posts: 126
Joined: Jun 2010

I completely agree with you...the discrepancy amongst physicians is amazing. I had a PT on 8/16 and rest of the thyroid removed on 8/23 due to follicular carcinoma. I was on cytomel from 8/23-9/23.

I started the LID on 9/23. Got RAI (80mci) on 10/13 and was told to stay off meds and remain on LID until after the WBS (one week after RAI)

Another ENDO practice near by doesn't recommend LID at all and gives low dose of RAI.

My girl friend w/papillary was told avoid shellfish and that was it, and to resume meds after RAI and could get the WBS a few days after RAI.

I met with the Nuclear Med doc after my WBS and he said there are some docs moving away from LID. He did say I had some residual thyroid tissue but whatever was there-is now gone thanks to RAI-LOL

In my opinion, the doctors don't explain the rationale behind the LID, rationale of stopping thyroid meds or the reason for thyrogen (if available). It's sad because all other cancers, the doctors are forthright with information.

It never hurts to get another opinion but be prepared to hear something totally different. I bought a book called "Thyroid Cancer-A guide for patients" and I found it to be a great resource. It gave me a better understanding and I felt more confident w/my treatment plan.

Not sure if this helps but know you're not alone in frustration (and cytomel made me crazy-LOL)

Chris

amorriso
Posts: 186
Joined: Oct 2010

I'm sorry you've gotten so many different answers. It is frustrating. When I was first diagnosed I looked up treatment online - I used sites from places like the Mayo clinic, John hopkins etc. Plus the advice of other thyroid cancer people.

I at least felt wiser when I dealt with the doctors - and I challenged several on their decisions - one especially.

Here my history - use it to help you decide what you believe is the best course of treatment. I had a TT and 2 lymph nodes removed (Sept 2010), then a low dose of RAI (Nov 2010). My surgeon did not take enough lymph nodes and my follow up was not done properly. This led to the need for a modified bilateral neck dissection (March 2011), large RAI dose in May 2011.

Things looked good for a few months, sadly my PET scan revealed 2 more lymph nodes - back to surgery and likely external beam radiation.

Has yours spread to any lymph nodes? If so then choose an aggressive course of treatment. I would go with Endo #3's choice.

All the best

sunnyaz
Posts: 582
Joined: Oct 2010

I am with amorriso on Endo #3 except that I would do the LID for three days after taking the RAI and I would insist on the WBS seven days after to be sure it took up in your cells. I am always going to lean towards the more aggressive treatment plan because of my bad experience.

Julie-SunnyAZ

sunnyaz
Posts: 582
Joined: Oct 2010

I am with amorriso on Endo #3 except that I would stay on the LID for three days after taking the RAI (and of course two weeks before) and I would insist on the WBS seven days after to be sure it took up in your cells. I am always going to lean towards the more aggressive treatment plan because of my bad experience.

Julie-SunnyAZ

sunnyaz
Posts: 582
Joined: Oct 2010

I know this is frustrating. There are so many opinions of how treatment should be done. I am not a doctor but the LID makes sense to me. Starving the cells of iodine makes it more likely to uptake the RAI.

Here is what I was told to do for both of my treatments and my WBS. I tend to lean toward the safest route. If it can't hurt why not do it?

I had RAI after two weeks on the LID (both times). Then I had my WBS seven days after the RAI to be sure that the cells took up the RAI. I stayed on the LID for three days after each treatment. The rational was that if your cells were going to uptake, it would do it within the first 72 hours. I did thyrogen for both treatments and my first WBS.

There really should be a more consistent protocol. I just don't understand why they haven't come up with a standard plan when so many people are being diagnosed with thyroid cancer.

Sharing in your frustration,
Julie-SunnyAZ

iggymurphy
Posts: 34
Joined: Sep 2011

I am glad my endo (#3) is going high. There was spread to all the lymph nodes that the surgeon took out....and who knows how many more. I am supposed to have RAI next week so I guess I will find out than. My only two hesitations using him were 1) not recommending a second WBS 7-10 days later and 2) not discussing with me how the high dose could cause some problems IF i have a lot of thyroid tissue left (RAI will concentrate in that spot and could create some probs down the road).

He is also not the most communicative.

Brooklyn777
Posts: 9
Joined: Nov 2011

I am so sorry you are having to deal with this! It's crazy isn't it? I had a total thyroidectomy but did not require more than the surgery, so I cannot comment too much BUT I can say.... from all my experiences with doctors, etc.....ABSOLUTELY....YES, when in doubt ALWAYS get a second opinion - and a THIRD if necessary. (I'm learning each doctor will tell you something different. It doesn't matter what it is, you'll get a different answer. I learned this very early-on....so this is what I do....I educate myself, take my questions to the doctor...and then go for second and third opinions, then I feel better equiped to make the best decision for ME! (not them!) I know it's hard and very stressful, esp when the drs can't seem to agree. Is going to a Mayo Clinic an option for you? If not - check out their website and search their suggestions for this type of treatment, maybe the info they provide can be enough to help you decide. Here is the Main tele # to Mayo in Rochester #507/284/2511....ask for the Mayo Library. They are very helpful and should be able to assist you and mail you info on this subject. I hope this helps.

Best of Luck...

Brooklyn:)

teamwink
Posts: 97
Joined: May 2011

I also found so many different recs and it was actually this forum that helped me realize I needed to change docs and get more information. Remember that YOU are your biggest advocate and you are the one whose body is being treated. I know it is easy to assume the doc knows everything, but I was given VERY lax information from my endo ... I encourage you to explore all issues here and at least use the info for discussion with your doc.

I did the LID even though it was not advised by my doc, and I'm glad I did. I stayed on it for 4 days once I got dosed. I wanted to make sure that I did everything in my power to kick this cancer to the curb!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network