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Super bummed out lateral nodes now involved.

ultramichelle
Posts: 8
Joined: Jan 2011

I had my thyroid papillary cancer 1.5cm and a 4mm and 1 central lymph node surgery in Dec and had RAI about 10 days ago 153 millicurie. I just had my whole body scan today and it showed 4 lymph nodes in the lateral neck, 2 on each side. I am so bummed out. Why didn't I get this scan beforehand so I could have the info for the original surgery. Now what do I have to have surgery again? Was the RAI strong enough to get these lesions? UGH I have to go back on Monday for more pictures of neck (and residual bowel that part will clearup). Has anyone had experience in this? I woudl like any news thanks. I was hoping to put this behind me today yet this cancer is starting to annoy me.
Thanks, Michelle

sunnyaz
Posts: 582
Joined: Oct 2010

I am so sorry this has happened to you too. I had metastasis about five to six months after my TT. RAI doesn't kill cancerous nodes, it only kills microscopic cancer cells and Thyroid tissue. They really should have made sure they had everything pegged before your surgery. Surgery really is the only option to get the cancer out of there and then RAI again. This is exactly what I am going through right now. Second RAI on Feb 4th. First RAI on September 1st of last year. This is a very annoying cancer. You will have to keep a close watch for the rest of your life. I hate to be the bearer of bad news but it's true. My Onco told me that I won't die from this cancer but it is a life long battle for me. I have a B-RAF mutation gene.
Julie-SunnyAZ

ultramichelle
Posts: 8
Joined: Jan 2011

hey Julie thanks for responding, So to you it seems that surgery is the answer? Is it possible that the high dose of RAI will do anything to these nodes? Seems llike I should have had a lateral node dissection bilaterally at time of surgery last month. I wonder how long I will have to wait? Boy did I hate the RAI, I am too social to be in a room by myself that long and away from my babies.
Good luck to you on Feb 4th. Did you have another surgery too? How long between RAIs? Sorry to bombard you with questions.
Thanks
Michelle

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Michelle,

Well, I am not a doctor as I have said in other posts, but I am in the Medical field and have been battling Thyroid cancer for the last 14 months. I knew something was wrong with my Thyroid in the Winter of 2008 and my PCP could feel a node on my Thyroid but because my blood work was normal, he never did any further testing. "Ninety percent of nodes are benign." But there are still ten percent that are not. In December of 2008 I started feeling heart palpitations, had issues with maintaining body temperature, started getting fatigued and had bouts with sudden sleepiness and nausea. I finally insisted that he do something more after I had gained over 40 pounds. He criticized me (because I am in Nursing and not an MD) and told me that I was just getting older and it was in my genes to be overweight. He very condescendingly asked me at one of my last appointments with him, "so Doc, what's going on now." Like I am some sort of hypochondriac. The last time my husband saw him he made a remark about not having a crystal ball to help him diagnose. He didn't even have to diagnose, I told his stupid butt what was wrong.

I was a very healthy and active 41 year old. I was determined not to be like the rest of my family; obese. I worked out one to two times per day and ate very healthy. I was a size four to six with very little body fat. Up to the day I had my TT my blood work was "normal."

The nodes won't be affected by the RAI unfortunately. I had a few nodes left behind after my second surgery because the *&#!@ idiot surgeon didn't check to see exactly where he was going before he cut me open. I had RAI in September 2010, the scan didn't even detect the nodes because they don't uptake the RAI. Only the Thyroid tissue will uptake. Microscopic cancer cells are known to be killed by the RAI however. I have had three surgeries since November of 2009. It will be slightly over five months from my first RAI until I have my second on February 4th, so I start the Low Iodine Diet tomorrow. My Oncologist tells me that I won't die from this cancer but that I will need to be watched carefully for the rest of my life and it is a very annoying cancer but, I also have the B-RAF mutation gene.

I have gotten used to surgeries (three in total now), in fact I kind of look forward to them. They are the only vacation I get anymore. Any PTO I get from work is used up with surgeries and treatments. I don't like the RAI however because I am like you, very social. Isolation sucks so I just tried to sleep as much as possible and chat with friends on Facebook. I hated the day after isolation, it felt like coming out of a coma.

Hang in there and don't be afraid. Stay positive and live each day to it's fullest. Try not to think about it unless you need to, otherwise it will drain your energy even more. Move on with your life and love your family like never before. Take every day one at a time. I know what you are going through and it's not easy. You will get through this and you will survive. Then you will having bragging rights! Keep in touch and let us all know how you are doing.

God Bless,
Julie-SunnyAZ

BellsAngel69
Posts: 102
Joined: Dec 2009

I've been battling thyroid cancer for seven years now. I have hurthle cell, which is very rare. I was fine for three years, and now have been through three reoccurences, the last of which went to my liver.

The truth is although they tell you that thyroid cancer is one of the most curable, it's also the most likely to have a reoccurence, at least certain kinds. It is also true that although it may not kill you, you have to be watched for the rest of your life and it can always come back. I've come to terms with this and now think of it as a nuisance cancer, if you can even think of any kind of cancer as being a nuiscance, but it is.

Cancer is cancer, no matter what kind it is, and always unpredictable. I wish the doctors wouldn't make you feel lucky by saying it's just thyroid cancer. It's still cancer.

ultramichelle
Posts: 8
Joined: Jan 2011

I appreciate both your responses and I feel better knowing there are others out there that have walked this walk. I too am in health care I am an ultrasonographer and found my own cancer and have heard all the same statistics but I am feeling abit failed by a protocol that didn't check for nodal involvement before the surgery since I appeared low risk at 40 yrs old and a smaller lesion. I just didn't count on the rapid growth since its suppose to behave. Bells I agree that cancer is cancer and I am sure you are in a better place with how your disease has progressed as it is behaving badly and I still sense you have a good outlook I am truley impressed.
Both of you with reoccurences and still able to give of your time to impart your knowledge on us newbees. I wish you both the very best.
Michelle

MBuff
Posts: 11
Joined: Jan 2011

Hi--

I had a neck u/s prior to my surgery and nothing looked suspicious, but I had three nodes (central) test positive, adjacent to the thyroid. My surgeon told me (this made me laugh, but it's gross) that they looked suspicious so he squished them between his fingers and they were hard, which told him they were probably cancerous. I had a central neck dissection, which was planned, and the other nodes they removed were clear. I am sorry that you're having to face another surgery. I also had my TT in December and would be so upset if that happened to me.

ultramichelle
Posts: 8
Joined: Jan 2011

Did you have a whole body scan too? I wonder if its routine to do it after surgery and after RAI??? They took out the central nodes at surgery too but only one can cancer. Now it looks like maybe 4 have it inthe lateral neck. I wish I could have just had that part removed at surgery time its just seems so hard to miss work and miss family time doing all this nonsense.
I go back in on Monday for more pictures of neck and bowel(bowel area which I hear is typical). Should know more soon.
Michelle

MBuff
Posts: 11
Joined: Jan 2011

No, not yet. I will go in to the doc in early March for blood testing (Tg mainly). Those levels will help the doc determine a) whether I have to go hypo or can use Thyrogen and b) what dose of RAI to use. I suspect that if my levels are very high they might do a WBS prior to RAI with a tracer dose to check for distant mets. Otherwise, my understanding is that, like you, I would get the WBS after RAI.

I was originally scheduled for RAI in less than two weeks, but decided I wanted to change endos. The new one, who is at the same teaching hospital as my surgeon, does things a lot differently than the other. He likes to wait 8 weeks after surgery to get Tg levels. I was uncomfortable waiting that long (esp. if I have to go hypo, which will push RAI out to 11 weeks after surgery), but he insists it will provide a more accurate treatment plan.

My surgeon insisted on a neck u/s prior to my surgery so he'd know how extensive the surgery would have to be, but obviously it doesn't catch everything (although this could have been the skill of the doctor who performed it, don't know.) Anyway, I wouldn't be surprised if I had positive lateral nodes, but I wouldn't like it, that's for sure!

I know what you mean about work/family. Same boat. I work in a job where putting in a lot of hours is crucial, and I've missed a ton of work. Now I find out I may have to go hypo, and I can't do my job hypo or I might commit malpractice. Very frustrating. So I feel ya.

Also Michelle :)

sunnyaz
Posts: 582
Joined: Oct 2010

I changed doctors (surgeon) and I have been very happy with him but the Cancer center just can't seem to get it together for my RAI treatment. I explained that I can't go Hypo, I need the Thyrogen injections and the @!*! nurse gave me a prescription for the Thyrogen injections and told me to have it filed and bring it to the clinic on the days of my injection. Come to find out, this is not how it is done after several calls to my Pharmacy to get the prior auth and the cancer center. Finally someone in the insurance/finance department was able to get going on what I needed. I am scheduled for RAI on the 4th of Feb. AND, no consultation was scheduled before my treatment? So I called and sure enough, I should have been scheduled for a consultation before my RAI and they didn't say anything about the LID. I was going off of the information I had from my first RAI. Then they tell me that only need to do the LID for one week. Not quite sure what to think of that since I already started at the two week mark and two weeks is the standard. Thank God I know what I am doing because they sure don't. I am the same as you "Also Michelle" I am not interested in a malpractice suit due to going Hypo. If I can't have Thyrogen, I can't do RAI. I have already missed so much work after three surgeries and the first RAI treatment. Now another one. Wishing you all the best of luck with your treatments and surgeries. This is a really rough road that gets really hard to travel. There are times when I wish I could just cash in my chips and go home.
Julie-SunnyAZ (not feeling too Sunny today)

nasher
Posts: 507
Joined: Apr 2010

I was told they were origanaly going to do my 1 year out thyroid scan in febuary but they have delayed it cause of a world wide shortage of Thyrogen injections.

I am not looking forward to the LID again whenever they schedule it

because of my job i could not sue anyways and i wouldn't anyways I hope I will not have to go HYPO for the scan when they schedule it but if I have to I have to.

good luck

Craig

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